When you re-read your first draft, decide what the  'purpose' of each paragraph is, and whether what you  have written is achieving that purpose.   When concluding, sum-up the reasons for your  argument that you have already outlined: don't include  new arguments in the conclusion.   No-one expects a definitive right answer: ethical  debates have raged for millennia without resolution.  Conclude your essay, however. You should say why  you believe one argument is better than another, while  still acknowledging that both have their merits.    However, it is important to use arguments that are valid  or justifiable (Fig. 1.2). Having a structure can help to  make an argument logical and relevant. Ethical theory  can provide this structure.    Ethical theories attempt to provide an over-arching the-  oretical framework for addressing the problem of how  human beings should behave with one another in the  world. There are three key theories which have histori-  cally dominated medical ethics teaching: Utilitarianism,  Deontology and Virtue Ethics. More recent frameworks  attempt to reconcile different theories and values. The  widely taught four principles of biomedical ethics  attributed to Beauchamp and Childress is one such  attempt. Values-Based Practice' or 'Values in Medicine'  has recently gained prominence in psychiatry and gen-  eral practice, and is taught on some undergraduate med-  ical degrees (these theories are considered below).    Rights-based approaches to ethics are often used in pub-  lic debates, and particularly around the availability of  healthcare services.   Why should we bother with these theories? Can we  not rely on some 'Golden principle' such as 'Do unto  others as you would have them do unto you?' Perhaps  such a principle is sufficient to help to guide our moral  decisions on a day-to-day basis, but often it falters on  the ethical dilemmas where there is no obvious path  to take. In addition, we need to provide reasons why  any such golden principle is right and why others might  be wrong. The purpose of ethical theory is to help us to  think more clearly about ethical problems.   There are three key theories which have dominated  medical ethics: Utilitarianism, Deontology and Virtue  Ethics. You must have a basic idea of what these  theories say.   Utilitarianism is founded on the work of Jeremy  Bentham (1748-1832) and John Stuart Mill (1806-  1873). It is based on a single principle of what is good:  the principle of utility. The morally correct decision or  course of action is often summed up as that which  promotes 'the greatest good for the greatest number' . The  principle of good holds that we ought to produce  the maximum amount of good. It is a consequentialist  theory, as it holds that the predicted outcomes (i.e.  the consequences) of an action are the most morally  important component of that action.   What then is 'utility'? Bentham and Mill thought that  utility was pleasure or happiness. Others have consi-  dered utility to include values such as friendship, knowl-  edge, health and beauty. Still others believe that the  concept of utility is best applied to the satisfaction of  preferences rather than any intrinsic values.   Bentham believed that law and morality could be  made rational by a scientific study of human nature.  He thought that humans were governed by two factors:  'pleasure and pain', and that it was in their nature to  seek pleasure and avoid pain. For Bentham, laws were  only 'good' if they maximized pleasure and minimized  pain for the majority of people. The 'scientific' founda-  tion of utilitarianism comes from the requirement to do  'happiness sums'. Bentham thought it was possible to  classify how good an action is by measuring how much  pleasure or pain was brought about by that action. He  called this process 'felicific calculus'.   1. He thought that cultural and spiritual pleasures  should be sought in preference to physical pleasures.   2. He thought that people should ordinarily stick to  moral rules rather than calculate the balance of util-  ity for each ethical problem.   Even though Mill advocated moral rules, he is still a util-  itarian, because he held that these moral rules should  be calculated using the principle of utility. This is what  is known as rule utilitarianism. For example, lying in  general might produce less utility than telling the truth.  Therefore, there is a rule that says 'Do not lie!' However,  we could imagine a scenario where telling a particu-  lar lie might produce more utility than telling the  truth would. The rule utilitarian would still tell the  truth. Other utilitarians, known as act utilitarians,  would appeal directly to the principle of utility and  lie (Fig. 1.3).   • it is a single principle that tries to deal with appropri-  ateness of other principles, such as a principle of  always telling the truth or of always acting to prevent  suffering   • it incorporates a principle of equality: each person's  happiness is equal   • it can be extended to the animal kingdom: some util-  itarians have argued that the capacity to suffer (and  feel pain) means our treatment of animals also  ought to be subject to moral scrutiny.    Fig. 1.3 Act vs rule utilitarianism. In ‘act utilitarianism', the  principle of utility is directly used to guide actions. In ‘rule  utilitarianism', the principle of utility is used to formulate general  rules which in turn are used to guide actions.   • there are problems dealing with intuitively immoral  actions: is it right to kill one patient in order to har-  vest their organs and perhaps save five lives?   • utilitarianism demands too much: in always asking  us to do the best action, everyone is expected to be  both heroic and saintly. For example, it could be  argued that 'maximizing utility' demands that not  only should we donate blood and bone marrow as  often as we can, but also that we may well be morally  obliged to donate one of our kidneys as well   • the equality principle is overly impersonal in de-  manding that we treat the well-being of our friends  and family as equivalent to that of strangers   • in principle, a small increase in pleasure for the  majority will override a vast degree of pain for a  minority.   Deontology covers those theories that emphasize moral  duties and rides, rather than consequences (from the  Greek deon, meaning 'duty'). Perhaps the best known  deontological principles are those set down in the Ten  Commandments.   Deontology is associated with Immanuel Kant  (1724-1804). He believed that morality was not depen-  dent on how much happiness resulted from particular  actions. Rather, he thought morality was something  humans imposed upon themselves because they are  rational beings. Although Christian, Kant did not  believe that God was necessary for moral law.   Kant argued that we can find out which moral rules  to obey by using our powers of reason. He said that by  seeing whether our desires can be applied universally,  we can tell whether or not they follow rational moral  principles. This 'universalizability' test is called the 'cat-  egorical imperative'. It states:   Act only on that maxim through which you can at  the same time will that it should become a  universal law.   This means that we should behave in such a way that we  can imagine everyone can behave. For example, if our  'maxim' or 'desire' is to 'steal other people's things when  we want them', we need to consider whether or not this  maxim could be held for everyone. Kant said that if  everyone stole things whenever they wanted, the whole  notion of theft and personal property would collapse; if  this happens, the concept of 'stealing' becomes illogical.  The same holds for the idea of lying. Telling a lie only  'works' if people generally tell the truth. If everyone lied  whenever it might benefit them, then this general belief  in truth-telling would collapse and lying would itself  become pointless. Therefore, Kant said that the moral  law obliges us not to steal and not to lie.    Kant also said that because humans are rational  beings, we should never treat people 'simply as a means  but always at the same time as an end' . The emphasis here  is on the fact that all people are equal (because they are  rational) and deserve equal respect.   • it places a special responsibility upon individuals for  their actions   • it addresses factors other than consequences, such as  motives, which intuitively seem important in moral  decision-making   • it allows a certain degree of choice; if more than one  option is morally acceptable, then the individual can  choose which to carry out (unlike utilitarianism  where the best option must be selected).   • it depends on freedom of will and rationality: are we  perfectly free and rational?   • it seems to be absolutist in nature: the imperative 'do  not lie' is intractable - it means 'do not lie . . . EVER',  even if it prevents great harm from occurring   • the moral rules can seem quite abstract and unable  to deal with the complexities of real-life ethical  dilemmas   Duties often go hand-in-hand with rights. When some-  one has a 'right', this usually implies that someone else  has a 'duty' to respect that right (this may entail a duty to  do something, or to refrain from doing something).  Ronald Dworkin (1977) suggests that rights are special  kinds of fact - moral facts - which carry more influence  in moral disputes. This way of thinking sees moral rights  as 'insistent normative demands' that take precedence  over other types of moral argument.   • A negative right: generally confers a freedom from  interference, e.g. the 'right to life' involves a freedom  from being killed.   • A positive right: confers a duty on someone else to  provide for the right holder, e.g. the 'right to health  care' imposes a duty on the government to provide  hospitals, nurses and doctors for its citizens.   Virtue theory does not focus on either moral rules or  consequences; rather, it concentrates on character and  motivation. It originates in the philosophical writings  of the ancient Greeks. Socrates (469-399 bc) asked,  'How should a man live, in order to achieve eudaimonia  (happiness or flourishing)?' His answer was that the    good life was the one lived in accordance with arete (vir-  tue). Ancient virtues included wisdom, justice, courage,  moderation and piety.   Aristotle (384-322 bc) claimed a more practical  approach. He believed that people were prepro-  grammed with the virtues, but were responsible for  the degree to which they implemented them. 'Good'  people choose a 'golden mean', an 'average' between  extremes and so do everything in moderation. So the  virtuous man would be neither reckless (too coura-  geous) nor timid (not courageous enough).   According to virtue theory, it is the cultivation of  virtue within one's character that is the function  of morality. Philosophers such as Alisdair MacIntyre  (b. 1929) have advocated that the study of ethics should  be directed towards how we ought to live our lives,  and advised which ethical characteristics we should  try and develop. In a sense, virtue theory tries to concen-  trate on what it is that makes some people 'good' or  'virtuous' and how they are different from those who  are not. The right thing to do in a given dilemma is that  which a 'virtuous' person would do. Virtue theory  emphasizes:   • the interpretation of certain facts of a dilemma, within  a specific context. That is by looking at the values per-  tinent to those involved in a dilemma rather than  abstract hypothesizing   • reasoning by analogy rather than reasoning by deduc-  tion or from principles.   • It is more personal than either utilitarianism or  Kantianism: it supports those actions done out of  benevolence, friendship, honesty and love in and  of themselves, rather than because they are 'maxi-  mizing positive value' or are carried out in accor-  dance with 'moral duty'   • It is more adaptive to the particular context of a  dilemma, rather than being bound by rules or apply-  ing a 'calculation' to a dilemma.   • A list of virtues is insufficient to justify why we  should promote them   • There is no universally agreed-upon list of virtues  to promote. Some writers, however, have attempted  to come up with a set of medical virtues (Pellegrino &  Thomasma 1993). Pellegrino and Thomasma's list of  virtues includes trust, compassion, prudence,  justice, fortitude, temperance, integrity and self-  effacement. The key virtue in a physician's character  is phronesis, or prudence, which is 'both a moral and  an intellectual virtue that disposes one habitually to  choose the right thing to do in a concrete moral  situation'.   Consideration for individual values, particularly those  of the patient, can be difficult within the context of  modern health care, where complex and conflicting  values are often in play. This is particularly so when a  patient's values seem to be at odds with evidence-based  practice or widely shared ethical principles, or when a  health professional's personal values may affect the care  provided.   Values-based practice, a framework developed origi-  nally in the domain of mental health, maintains that  values are pervasive and powerful influences in health-  care decisions and research, and that their impact is  often underestimated. It suggests that our current  approaches lead us to ignore some important manifes-  tations of values at both the general level, as relevant in  legal, policy and research contexts, as well as at the indi-  vidual level, as relevant in clinical practice. All students  and trainees are continually exposed to areas of ethical  difficulty throughout their training; the important thing  is to try to be aware of them. Fulford (2004) calls this the  'squeaky wheel principle' of values-based medicine.  This metaphor means that we tend to notice values only  when they are diverse or in conflict. Learners may have  difficulty doing this on their own. Discussion with  others is essential to bring out a proper range of  responses to ethical problems or value conflicts and  to challenge individual views.   Values-based practice expands on the ideas that may  be regarded as value-laden. It suggests that one of the  reasons for overlooking values is that they are presumed  to be shared when not obviously in conflict. Fulford and  others (Fulford 2004, Fulford et al 2002) have suggested  that since primary care is an area of significant diversity  of values, values-based practice may have particular rel-  evance there.    In the late 1970s, two Americans, Tom Beauchamp and  James Childress, introduced the idea of the 'four princi-  ples' or 'principlism'. Historically, principlism repre-  sents the most widely taught ethical framework in  UK medical schools and probably the most widely used  ethical framework by clinicians in English-speaking  countries.   • autonomy: the principle of respecting the decisions  made by those capable of making decisions. Auton-  omy also includes respecting (as far as is possible)  the autonomy of people whose ability to make deci-  sions is limited, e.g. by senility or illness    • non-maleficence: the principle that a person should  avoid doing harm, or minimize harm as much as  possible if it is unavoidable   • justice: the principle of ensuring fairness and equity  in the distribution of risks and benefits. This  includes the idea of treating equals equally and rec-  ognizing relevant inequalities.   The four principles do not constitute an 'ethical theory’  as such, ratherthey are guidelines: aframework around  which an ethical discussion can be based, regardless  of the favourite ethical theory held by the participants.   Autonomy literally means 'self-rule'. In essence, it refers  to an ability: (1) to reason and think about one's own  choices; (2) to decide how to act and (3) to act on that  decision, all without hindrance from other people.  Autonomy is more than simply being free to do what  one wants to do. It implies that rational thought is  involved in a decision. While many animals are free  to do what they want, they are not autonomous because  they do not critically evaluate the benefits and risks to  themselves, or others, involved in their decisions.   In respecting a person's autonomy, we recognize that  they are entitled to make decisions that affect their own  lives. Justification for this principle is most obviously  found in Kantian theory: the idea that people should  be treated not simply as means, but as ends in them-  selves. However, support for autonomy can also be  found in those versions of rule-utilitarianism which hold  that the best outcomes arise when autonomy is respected.   Often, depending on how young or old, sick or  insane, people may be more or less autonomous. We  may judge that they have the capacity to make all deci-  sions, some decisions or no decisions. The degree to  which a person is autonomous is central to the concepts  of consent and capacity in medical ethics and law. This  is discussed in Chapter 3.   Beneficence is the principle of doing 'good'. In the med-  ical context, this generally means improving the welfare  of patients. Non-maleficence involves 'not harming  patients'. It is associated with the Latin phrase primum  non nocere or 'above all, do no harm'. As 'doing good'  and 'not doing harm' seem to fall on a continuum, there  is often confusion about where non-maleficence ends  and beneficence begins. One way of looking at the  two, is to think of non-maleficence as a duty towards    all people, whereas beneficence, as we cannot help  everyone, is a duty we choose to discharge on specific  people. Medical staff, by accepting a patient, have cho-  sen to act beneficently towards that person. The princi-  ples of beneficence and non-maleficence are broadly  similar to the utilitarian principle of maximizing benefit  and minimizing harm.   The principle of justice within the medical context refers to  the allocation or distribution of resources among the pop-  ulation. Basically, this principle demands the fair treat-  ment of 'equals' within the healthcare system. There is,  however, no single answer as to what constitutes fair and  equal distribution. The following are possible answers:   1 . Equality - Each person receives an equal share of the  resources available   3. Desert - Each person receives resources according to  how much they deserve them (in terms of contribu-  tion, effort or merit)   4. Desire - Each person gets what they want. Desire  forms the basis of a utilitarian outlook: utilitarian-  ism is important as it forms the basis for cost-  effective analysis and quality-adjusted life years.   Justice is considered more fully in Chapter 5, which  deals with commissioning and resource allocation in  health care (Fig. 1.4).    Just as medicine has become more evidence-based in  the twentieth century, medical ethics research has also  taken an 'empirical' or 'scientific-evidence'-based turn.    At the simplest level, ethicists will argue, 'If x is true, then  y should happen'. Thus, research is needed to find out if  x is true and whether y indeed has the effect ethicists want  it to. At a more complicated level, social scientists ask,  'What does ethics mean to people?' and 'How does ethics  come about in a particular context?' Some of this interac-  tion has resulted in the theoretical critique of bioethics by  sociologists (Hoeyer 2006) on the following grounds:   • Social sciences instil the sense of context that philo-  sophical ethics lacks - philosophers by contrast  come up with unrealistic scenarios on which to test  reasoning.   • Social scientists do ethics in a better way than philos-  ophers - are better suited to spot injustice and  understand the imperfections of the real world (as  opposed to solving the dilemma in a hypothetical  thought experiment).   • Ethics is just another way of having power over what  other people do - ethical rules are written by the  people in charge.    Medical practice may be influenced by various ethical  approaches. The General Medical Council's code of con-  duct, Good Medical Practice, is essentially deontological,  founded on the duties of a doctor, and can be seen as a  rulebook. The use of evidence-based medicine to pro-  duce guidelines on cost-effectiveness by organizations  such as the National Institute for Health and Clinical  Excellence (NICE) is utilitarian, based on ideas of what  promotes the greatest good for the greatest number.  Undergraduate and specialty training is still rooted in  the concepts of professional growth and development,    Fig. 1.4 A comparison of the four principles and ethical theories.   An essential component of why we  should be moral - a respect for all  rational (autonomous) beings   The principle of beneficence  can be seen as equivalent to a  virtue of benevolence   Can also be seen as a very  utilitarian goal - minimizing  harm   The principle of non-  maleficence is equivalent a the  virtue of non-malevolence   Not necessarily concerned  with the distribution of utility -  simply the maximization of it   The universalizability criterion  ensures a type of justice where all  people are equal by virtue of their  rationality    aimed at producing life-long learners who aspire to  excellence - and this is arguably virtue-based. Some  medical schools and the Royal College of General Prac-  titioners have taken up Values-based medicine' as a way  to promote ethical behaviour in a multicultural society.  Most importantly, society increasingly expects doctors  to be able to justify their decisions in ethical as well  as scientific terms.    Think about how these ethical approaches affect the  way we think of the duties of doctors, the way we  practice modern medicine and the way we train doctors.   Like everyone else in society, doctors and medical stu-  dents are subject to the laws of society.   The UK legal system has two sources of law: parliament  and the courts:   • Court-made law is described as 'Common Law' or  'Case Law'.   The courts are able to interpret statutes, but not overturn  them. In contrast, parliament can overrule judge-made  decisions. Parliament can 'change' the law, especially on  controversial matters.   English Common Law is built on case law - the body  of decided judgements, from which legal principles  have been established. These principles are applied in  subsequent cases, unless the facts of the case are differ-  ent or a compelling case for change can be made. 'Pre-  cedent' is the term describing the binding power of  previous decisions on subsequent similar cases. How-  ever, decisions in 'higher' courts are binding on 'lower'  courts: decisions in the High Court are binding on  Magistrate's and Coroner's Courts, and usually followed  in High Court decisions. Judgements from the Court of  8   Judgements in the Supreme Court are binding on the  Court of Appeal, and judgments from both are binding  on all lower courts. The Supreme Court of England  and Wales was formerly known as The House of Lords.  The Supreme Court may very rarely reverse a decision  of its own. Since the Human Rights Act 1998, cases  founded on the European Convention of Human Rights  may (rarely) have a final appeal to the European Court of  Human Rights (ECtLIR). Several recent cases of relevance  to UK medical law and ethics have found their way to the  ECtHR. The European Court of Justice is only concerned  with questions which relate to European Union laws or  institutions (Fig. 1.5 shows the division and hierarchy of  the Court System in England and Wales).   Court cases are either heard in the civil, or in the crim-  inal division of the j ustice system. A civil case arises from a  conflict between two or more people and aims to fairly  compensate the injured person or people. A criminal case  examines whether someone has broken the law of the  state and whether they should receive punishment, such  as the unlawful killing of a patient. A major difference  between the two is that in criminal cases, the prosecution  must demonstrate beyond all reasonable doubt (i.e. be  certain) that the accused has broken the law in order to  secure a conviction. To be decisive in a civil case, the bur-  den of proof is 'the balance of probabilities', i.e. one side  needs to demonstrate that their facts are more likely and  arguments are more persuasive than the other's. Most  medical law cases are brought within the civil-justice sys-  tem (rather than the criminal). Most of these cases are  brought under the tort (or wrong) of negligence. However  healthcare professionals can be, and are, charged with  criminal offences, including battery and assault.   Remember. Higher court decisions are more influential  than lower court decisions, but changes to the law  are usually made by Parliament in the UK.   Statutes are laws created by Acts of Parliament. Acts are  still subject to interpretation by the courts. Only parlia-  ment may reverse or amend an Act of Parliament, by  passing another Act to do this. Many Acts delegate the  detail of how they are implemented to minister, local  authority or other official. When there are concerns that  these powers have been used unreasonably, an applica-  tion may be made in the courts for a judicial review.  However, a successful challenge needs to demonstrate  that, e.g. a ministerial decision is clearly unreasonable  or in conflict with other laws (judicial review in the con-  text of healthcare resource allocation is explored in  Chapter 5).   Health legislation is a complex area that has  required frequent amendments in order to keep  policies in-line with evolving circumstances. Specific  Acts of Parliament relating to different aspects of  medical law will be discussed in relevant sections.  However, most health legislation made since 1977  has recently been summarized within three Acts of  Parliament:   This is relevant because the legal duty of care owed by  doctors to NHS patients is statutory (i.e. enshrined in  the NHS Act 2006) and not contractual.   In the UK, legal rights are created either by Acts of Parlia-  ment or by judges in case-law. The most important piece  of legislation that deals with rights is the Human Rights  Act 1998. This makes rights from the 1950 European  Convention on Human Rights (ECHR) enforceable  against public authorities, which includes hospitals, in  England and Wales. Some of the rights are absolute  and signatories to the convention are obliged to protect  them. Others are 'qualified' and may be superceded by  other duties a state has, e.g. to protect the health of its cit-  izens and promote law and order (for a recent example of  an important medico-legal case considered by the  ECtHR, see the discussion of Pretty v. UK [2001], in  Chapter 4).   • This Article might be used to challenge a 'Do not  attempt resuscitation' order placed against a patient's  wishes.    • This might be used to challenge the withholding  or withdrawal of life-saving or life sustaining tre-  atment.   Article 3: Prohibition of torture, inhuman and  degrading treatment (Absolute Right)   No-one shall be subjected to torture or inhuman or  degrading treatment or punishment:   • This could be used to challenge poor-quality treat-  ment or failure to provide treatment within a certain  time. Consider - Does waiting 18 months for a hip  replacement constitute degrading treatment? Does  waiting for 24 hours on a trolley in A&E constitute  degrading treatment?   • It has been argued (unsuccessfully so far in the UK)  that laws prohibiting the assisted suicide/euthanasia  of terminally ill patients constitute inhuman or  degrading treatment.   Article 8: Right to respect for private and family  Life (Qualified Right)   Everyone has the right to respect for his private and fam-  ily life, his home and his correspondence:   • How might this affect issues of confidentiality? For  example, where a teenager does not want parents  to know she is taking contraception? The teenager  could claim that her right to privacy is supported  by Article 8.   • How might this affect the rights of others? For  example, where a doctor or nurse does not wish  to provide information about or take part in contra-  ception services because they believe that this is  morally wrong?   Article 12: Right to marry and found a family  (Qualified Right)   Men and women of marriageable age have the right to  marry and found a family according to the national laws  governing the exercise of that right:   • This Article could be used to challenge limitations  on access to fertility treatment.   • This Article could be used to challenge limitations  on access to fertility treatment on the basis of, e.g.  race or sexual orientation.    Think about how you might encounter the Articles of  the European Convention on Human Rights and  fundamental freedoms in medical practice. In this  book, see how absolute and qualified human rights  have been discussed in the courts and think about how  the Human Rights Act might apply to those cases  which have not.   Doctors may sometimes fall foul of the criminal law  (this is discussed in relevant sections over the next four  chapters) but the majority of cases against doctors are  heard in the civil courts. Civil law cases involving doc-  tors are usually actions in medical negligence. There are  some basic components of a medical negligence action.   A duty of care: it must be shown that the defendant  (that is the person or authority accused of negligence)  owed the claimant (that is the injured party or the per-  son accusing the defendant of negligence) a duty of care:   • The duty of care of a GP crystallizes when the patient  registers with that GP and then consults with the GP  on the occasion in question.   • The duty of care of a hospital doctor crystallizes  when the patient is formally accepted into hospital.   English law does not oblige doctors to give emergency  treatment outside of the above situations except when:   • when a GP is requested to provide emergency treat-  ment to a person in his practice area.   By contrast in France, 'Good Samaritan' laws oblige doc-  tors to stop and assist anyone who is taken ill or injured.   There must be a standard of care that could be expected  from the defendant - this is normally the standard of  reasonable care - that is the level of care that could be  expected from an ordinary member of that branch of  medicine.   The standard of care doctors are expected to reach  was asserted by the case Bolam v. Friern Hospital  Management Committee [1957], The standard of care  was set as that of 'the ordinary skilled man exercising  and professing to have that special skill'. This standard  has become known as the Bolam Test - it is applicable  to all aspects of treatment, diagnosis, the disclosure of  information or risks to patients.   This standard was possibly modified in Bolitho v. City  and Hackney Health Authority [1998], where it held that a  court must find the medical opinion to be 'reasonable'    and 'responsible'. The claimant must show that the  defendant did not reach a reasonable standard of care.   Causation: the claimant must then show that that  breach of the duty of care caused the damage they claim  to have suffered: the test used to prove causation is often  referred to as the ‘but for' test. It says the claimant must  demonstrate that but for the defendant's negligence, he  would not have suffered the harm in respect of which  he seeks damages. For example in Barnett v. Chelsea  and Kensington HMC [1969], a casualty officer refused  to attend three night watchmen who were vomiting  after drinking tea. One later died from arsenic poison-  ing. Though there was a breach of duty, the claim failed  because, even if he had received treatment, the man  would have died anyway and there was therefore no  causation.   Damages: some level of damage must have occurred  to the claimant for compensation to be awarded. The  purpose of bringing an action is to usually gain compen-  sation for damages; if no damages have occurred, there  is little point in bringing an action.    Remember : To succeed, a medical negligence case  must demonstrate that there was a duty of care, there  was a breach of that duty, and the breach caused harm  to the patient.    As well as being subject to the requirements of the law,  doctors are also subject to the requirements of profes-  sional regulation. In the UK, the General Medical Coun-  cil (GMC) issues guidance on what it considers to be the  ethical duties of British doctors. It publishes this in  Duties of a Doctor, which covers truth-telling, confiden-  tiality and good medical practice in general. The profes-  sional duties set down by the GMC have been described  as quasi-legal (Fulford et al 2002). This is because the  duties set down by the GMC are enforced. Failure to  adhere to the GMC code of practice can mean removal  from the register of licenced doctors. Being 'struck off  means you can no longer work as a doctor in the UK,  and are unlikely to find work as a doctor in Europe or  elsewhere in the world. (Professionalism and profes-  sional regulation are discussed in the next chapter.)   • What does the 2010 Core Curriculum in Medical  Ethics and Law expect from students and medical  schools?   • What is the difference between act utilitarianism and  rule utilitarianism?   • What are the two central ideas associated with  Kantianism and the categorical imperative?   • How might deontology, utilitarianism, virtues and  values influence UK medicine?   • How do the Articles of the European Convention on  Human Rights as stated in the Human Rights Act  1998, affect the provision of medical treatment in  England and Wales?   Bolitho v. City and Hackney HA, 1998 AC 232 and [1998] Lloyds  Rep Med 26.   Campbell, A.V., Higgs, R., 1982. In That Case: Medical Ethics in  Everyday Practice. Darton, Longman and Todd, London.   Fulford, K., 2004. Ten principles of values-based medicine. In:  Radden, I. (Ed.), The Philosophy of Psychiatry:    Fulford, K., Dickenson, D., Murray, T„ 2002. Healthcare Ethics  and Human Values: an Introductory Text with Readings  and Case Studies. Blackwell, Oxford.   Hoeyer, K., 2006. 'Ethics wars': reflections on the antagonism  between bioethicists and social science observers of  biomedicine. Human Studies 29, 203-227.   Pellegrino, E„ Thomasma, D., 1993. The Virtues in Medical  Practice. Oxford University Press, New York.   Stirrat, G.M., Johnston, C., Gillon, R., et al., Medical Education  Working Group of Institute of Medical Ethics and associated  signatories, 2010. Medical ethics and law for doctors of  tomorrow: the 1998 Consensus Statement updated. J. Med.  Ethics 36, 55-60.   Garside, 2006. Law for Doctors, Principles and Practicalities,  third ed. RSM Press, London.   Garside, J.P., 2006. Structure and sources of English law. In:  Law for Doctors: Principles and Practicalities, third ed. RSM  Press, London, pp. 1-10.   Gillon, R., 1986. Philosophical Medical Ethics. John Wiley &  Sons, Chichester.   The 2nd edition, by Gillon R and Sokol D, is expected in 2013-2014.   Hope, T„ 2004. Medical Ethics. A very short introduction.  Oxford University Press, Oxford.   Hope, T„ Savulescu, J., Kendrick, J., 2008. Medical Ethics and  Law: The Core Curriculum, second ed. Elsevier, London.   Petrova, M., Dale, J., Fulford, K.W.M., 2006. Values-based  practice in primary care: easing the tensions between  individual values, ethical principles, and best evidence.   This chapter outlines the role of the key professional  bodies involved in regulating and providing ethical  guidance for doctors. Truth-telling, confidentiality and  conscientious objection are considered here because  they are issues particularly identified with professional  behaviour. Professional boundaries and their relevance  to medical students are discussed. The chapter con-  cludes with a practical overview of research ethics and  publication ethics.    Oaths and declarations are a way in which professions  promise to the public that they will uphold a publically  accepted set of values, enabling that profession to be  trusted and have a certain status within society. They  also represent a way in which a profession can remind  its members of those core values.   The Hippocratic Oath (~425 bc) has historically been  seen as part of the Western medical tradition. It encour-  ages a number of concepts that are still relevant today:  the teaching of medicine; the consideration of the  patient's best interests; confidentiality and the absti-  nence from 'whatever is deleterious and mischievous'.  However, it does not mention concepts such as auton-  omy or justice, and forbids performing surgery. The  original Hippocratic Oath is now rarely taken in UK  medical schools, though some have written modern  versions.   The Declaration of Geneva (1948, amended 1968 and  most recently revised in 2006) is a modern-day Hippo-  cratic Oath, requiring doctors to make the health of  their patients their 'first consideration'.   The Declaration of Helsinki (1964, revised in 2008)  deals with biomedical research. It states that 'the inter-  ests of the subject must always prevail over the interests  of science and society'.   Both declarations arose from the general concern by  the world medical community at how the medical pro-  fession in Germany became complicit in the activities of  the Nazi party in the time leading up to and during the  Second World War.   Since the nineteenth century, in the UK there has  been professional regulation of doctors. Initially, this    was to prevent unqualified practitioners from claiming  the title. Today, professional regulation is far more  extensive. This is discussed further later in this chapter.   In the UK, doctors are obliged to register with the Gen-  eral Medical Council (GMC) and to take membership of  a Royal College relevant to their area of practice. At pre-  sent, membership of the British Medical Association  (BMA) is optional. Each of these bodies has an impor-  tant, if sometimes overlapping, role.   You should know what the GMC, the BMA, the Royal  Medical Colleges and the indemnity bodies do - each  plays an important role for doctors.   • to ensure that those allowed to practise medicine  (registered medical practitioners) are fit to do so,  in terms of knowledge, skills and their behaviour   • to maintain a register of doctors who are licensed to  practise medicine in the UK. It is illegal to practise  medicine without a licence in the UK   • to supervise standards of undergraduate and post-  graduate education - the GMC sets out a syllabus  for medical schools to follow, and since 2008,  now also works with the Royal Colleges to ensure  appropriate standards for specialist training and  continuing medical education. (The GMC has taken  over this role from the Postgraduate Medical Educa-  tion and Training Board.) This latter role includes  supervising revalidation (see below), supervision  of doctors' fitness to practise after qualification as  a general practitioner (GP) or specialist   • to enforce professional discipline - the ultimate  sanction is to 'strike a doctor off the register', either  temporarily or permanently. More often, however,  the GMC will issue a warning or recommend reme-  dial action, such as a supervised period of practise, or  additional training in the area of deficiency.    The GMC also administers the Professional and Linguis-  tic Assessment Board (PLAB) test, which doctors from  outside the European Union have to pass before being  allowed to practise in the UK.   The GMC sets out guidelines on what it deems to be  Good Medical Practice (Fig. 2.1). These guidelines are  important because any doctor who violates them may  be subject to disciplinary procedures and possible era-  sure from the register - effectively losing the ability to  practise as a doctor in the UK. Moreover, other countries  often require a certificate of 'good standing' from doc-  tors who emigrate, and therefore a doctor who is 'struck  off in the UK may also have difficulty finding work  abroad. Because Good Medical Practice represents a set  of rules with possible sanctions against those who break    Fig. 2.1 The duties of a doctor registered with the General  Medical Council.   Patients must be able to trust doctors with their lives  and health. To justify that trust you must show respect  for human life and you must:   Work with colleagues in the ways that best serve  patients' interests   Give patients the information they want or need in a  way they can understand   Respect patients' right to reach decisions with you about  their treatment and care   Support patients in caring for themselves to improve and  maintain their health   Act without delay if you have good reason to believe  that you or a colleague may be putting patients at risk   Never abuse your patients' trust in you or the public's  trust in the profession.    them, some authors (Fulford et al. 2002) talk of them  being quasi-legal. Others (Gillies 2004) would hold  the GMC duties to be an example of a deontological  framework (see Ch. 1) because they represent rules that  should not be broken.    The GMC also sets out duties for medical students. Med-  ical students have legal restrictions on the clinical work  they can do, but must be aware that they are often doing  things that a qualified doctor might do (such as 'taking a  history') and that their activities will affect patients.  Patients may see students as knowledgeable, and may  consider them to have the same responsibilities and  duties as a doctor. Students must be aware that their  behaviour outside the clinical environment, including  in their personal lives, may have an impact on their fit-  ness to practise (professional boundaries are discussed  later in this chapter).   • students have a duty to make sure that patients know  that they are students and not doctors. For example:  should medical undergraduates introduce them-  selves as medical students or as student doctors?  The title 'Student doctor' could mislead a patient that  the person seeing them is medically qualified   • students have a duty to behave in a professional way  in the clinical and educational environment, and are  subject to the same ethical duties as doctors, such as  maintaining confidentiality or not performing a pro-  cedure unless competent to do so   • students have a duty to avoid behaving in an antiso-  cial or criminal manner outside the clinical setting  (e.g. this could include taking recreational drugs,  drunken driving or disorderly behaviour in public).   Remember: Students have a professional duty to  make sure that patients know that they are medical  students and not doctors.    For full guidance, see Medical Students: Professional  values and fitness to practice, Medical Schools Council and  General Medical Council, November 2009. Online. Avail-  able at: http://www.gmc-uk.org/static/documents/con  tent/ GMC_Medical_Students.pdf   Students whose behaviour falls below an acceptable  standard may not be allowed to qualify and/or register  with the GMC. Currently, there is talk of introducing  student GMC registration.   The chief role of the Royal Medical Colleges is to set edu-  cational, professional and clinical standards for their  specialty. Trainees in a given specialty must now gener-  ally pass a membership examination from the relevant  college before obtaining a certificate of completion of  specialist training. Some newer specialties have their  standards set by a faculty of a Royal Medical College.  For example, forensic medical examiners have their  standards set by the Faculty of Forensic Medical Exam-  iners at the Royal College of Physicians. Now that doc-  tors will have to supply evidence of fitness to practise  after specialization (a process called revalidation), the  Royal Colleges will set specialty-specific standards on  behalf of the GMC. The colleges also pass comment  on issues relating to their specialty and the health ser-  vice. The colleges support research (e.g. with financial  grants and opportunities to showcase research at confer-  ences and in college journals) and will have a commit-  tee which produces specialty-specific ethical guidance.  For example, the Royal college of General Practitioners  has an ethics committee, which produces educational  material on ethics for GPs and reports to the RCGP  council.   The main function of the BMA (established 1832) is to  protect the interests of its members; it is the trade union  for doctors in the UK. It is involved in the negotiations  on behalf of doctors at national level as well as repre-  senting members at a local level in employment-related  disputes (English et al. 2004). Membership of the BMA  is optional. A doctor who is a paid-up' BMA member  has to raise a problem locally for industrial relations  officers to become involved in a local dispute over work  conditions (otherwise there would be no point in pay-  ing to be a member of a trade union). As well as repre-  senting members' interests, it also passes comment on  behalf of the profession on matters related to health  such as banning tobacco advertising, and on global  issues such as the role of doctors in executions and tor-  ture. The BMA also has a research unit and an ethics  department, which provides guidance on contentious  issues (see below). BMA members can seek personal  advice from the ethics department, and it also collects  data on the ethical issues of concern to doctors.   The top 10 issues for which doctors sought advice  from the BMA medical ethics department in 2010 (on  the BMA website each of these is hyperlinked to guid-  ance from the Ethics department) were the following:   1 . Under what circumstances can confidential health  information be disclosed?   2. Who can apply for access to a patient's health  records?    3. What should a doctor do when they have child pro-  tection concerns about a patient?   4. How much information should patients be given  in order for consent to treatment to be valid?   5. What should a doctor do if they are asked by a ter-  minally ill patient to write a medical report to use  abroad for assisted dying?   6. Does a patient have a right to see a medical report  written about them?   7. Under the Mental Capacity Act 2005, when is a per-  son judged to lack capacity?   8. How and when, can a doctor broach the subject of  private treatment with NHS patients?   9. Are GPs able to register asylum seekers and refuse  asylum seekers?   The BMA medical ethics committee has also asked the  BMA medical students' committee to make a list of com-  mon 'ethical dilemmas' faced by medical students (list  adapted from the BMA Handbook of Ethics and Law,  2004). The list they supplied comprised:   • Disclosure from patients that they have been sub-  jected to abuse   • When questions arise about the competence or  behaviour of fellow students   • Students being recruited to take part in the research  projects of their teachers.   Many of the above issues repeat the concerns of quali-  fied doctors, but not all. Some relate to the specific  duties of medical students (see above). Many of the  sources of support for medical students are the same  as for doctors - medical students are entitled to use their  medical indemnity body (see below) and the BMA    ethics department. As well as clinical advisors and other  responsible staff, some medical schools have student  clinical ethics discussion groups and medical ethics  societies. Think about what is available to you - if there  is no easy source of ethics support - consider setting  something up !   Doctors working in a clinical setting in the UK are  obliged to have medical indemnity (in other countries,  they may be obliged to have malpractice insurance).  Indemnity bodies have two key roles:   2. To compensate patients who have suffered as a result  of medical negligence.   Medical students may also join medical indemnity  organizations - at present, this is free for students and  a very small sum for Foundation Year doctors, but gets  much more expensive as doctors acquire responsibility  and experience. Indemnity organizations are an excel-  lent source of confidential advice on professional and  medico-legal issues for their members. If you are not  sure about the legality or the ethics of a clinical or pro-  fessional decision, all such organizations have a help-  line and will give advice to their members 24 hours a  day, 7 days a week in emergencies.   From ancient times until comparatively recently, lying  to patients was not necessarily disapproved of, or even  discouraged, provided it was for the patient's own good.   Current professional opinion is rather different; the  document Good Medical Practice and the Good Medical  Practice: Framework for Appraisal and Revalidation  (GMC 2011) states that doctors have a duty to be honest  and trustworthy. Dishonesty in general is viewed in a  particularly harsh light. Some of the behaviours below  have parallels at undergraduate level, e.g. allowing  patients to think you are a junior doctor or cheating  in exams.   • misleading patients into receiving treatment which  they do not need   • omitting or lying about information which would  affect the choice a patient makes   • making untrue statements in mortgage or job appli-  cations, passport or visa applications   • making fraudulent applications on claims forms in  relation to insurance companies, and other third-  party funding organizations   1 . The 'telling' part, which deals with the communica-  tion of information   2. The 'truth' part, which holds that the information  given has to be true.   From an ethical perspective, truthful information is impor-  tant for a number of reasons: even if the information does  not lead to a treatment decision, the patient may still wish  to know information about their health, because their  health is intricately linked with their sense of self.   It is generally accepted that truth-telling promotes a  sense of trust between both the doctor and their patient,  and in general between doctors and the public.   Medical schools spend a huge amount of time and  money teaching communication skills (the telling part,  above) so that doctors can break bad news and help  patients make difficult decisions, rather than be tempted  to avoid such encounters or even mislead patients.   It thus seems that, in general, truth-telling is a neces-  sary duty. However, is it an absolute one? Are there any  circumstances in which it might be right to he to  patients? What about not telling the whole truth? Is there  a difference between avoiding answering a direct ques-  tion, and telling a lie? The following scenarios illustrate  the general principles at stake.   The concept of 'telling the truth’ has two facets: the  'telling' part, or communication of information, and  the 'truth' part, which holds that the information  given has to be true.   A patient, Mrs X, is brought to the emergency depart-  ment after being caught in a house fire with her two chil-  dren, who have both died. Mrs X herself has sustained  burns which will be fatal in the next few hours. Mrs X  asks you, the doctor treating her, how her children are.   You fear that knowing the truth will distress her. Do  you deceive her, for the short period of time she has left  to live, and tell her that her children are alive?   If we use the four principles (see earlier) to look at  this case, we have a conflict of ethical principles:   1. Respect for autonomy holds we should not lie to  patients.   2. Beneficence holds that lying may be crucial in easing  the patient's distress.    The conflict in principles is mirrored by a conflict in dif-  ferent ethical theories as well. Utilitarianism might sug-  gest we should lie, because telling a lie is more likely to  make the patient happy (or ease her distress). Deontol-  ogy would oblige us to tell the truth because if people  lie, no-one can trust that what anyone says is true.  How can a compromise be reached? Virtue ethics might  see a conflict between honesty and kindness. Using the  four principles: beneficience and non-maleficence  could (if hope is good and distress is a harm) appear  at first glance to outweigh patient autonomy and right  to know the truth. However, we do not know, for exam-  ple if Mrs X wants in her final lucid moments to make  sure that her money and property are appropriately  inherited.   It has been suggested that lying to patients is justified  only 'if a person, acting rationally, were presented with  the alternatives, he or she would always choose being  lied to' (Gert & Culver 1979). But how can you know  that someone would choose to be lied to?   Mr Y has a poor (but not end-stage) prognosis due to  cancer. You are treating Mr Y, and are about to tell  him his diagnosis and prognosis.   Before you do so, his son, a local GP, who has  guessed the diagnosis, urges you not to tell his father  the truth, either that this is a cancer or that it has a poor  prognosis. The son explains that his mother, Mr Y's wife,  died a mere 2 months ago of a very aggressive cancer,  and he fears that if his father knows the truth, he will  'give in' because the father thinks that any diagnosis  of cancer is one without hope of recovery.   The deception which the son requests is not a short-  term one. The conflict of principles (if you believe the  son) is similar: If you respect Mr Y's autonomy and tell  him the truth, he may 'give in', become depressed and  refuse all treatment. He might also elect to have appro-  priate treatment and have a better opportunity to man-  age what remains of his life, given the prognosis. If you  truly respect Mr Y's autonomy, you may consider that he  has a right to 'give in' and refuse all subsequent help if  he chooses to.   If you do as the son suggests, following a beneficent  aim of allowing him to live his remaining days free from  despair, this may deny him the opportunity to have  appropriate treatment for any chance of cure or manage-  ment of symptoms. After all - why see a cancer specialist  if he does not have cancer? It may also produce more  distress if he ever finds out the truth. If doctors routinely  lied about serious illnesses, then reassurance might pro-  vide no comfort anyway.   You may consider that each of the above scenarios has  an obvious answer. However, a short-answer or essay  question in an exam should examine both sides of an  argument before deciding which decision to support.    In both cases above, actively deceiving a patient is clearly  problematic but telling the truth may also be difficult.   Therapeutic privilege is where a clinician withholds  information (usually during the consent process) from  a competent patient in the belief that disclosure of this  information would cause harm to the patient. Informa-  tion that a patient would ordinarily be told is deliber-  ately withheld for the patient's benefit, as perceived  by the healthcare professional. Therapeutic privilege  is recognized and discouraged by medical indemnity  organizations (Whitehouse 2011), as it would other-  wise suggest the erroneous belief that any form of  dishonesty (or incomplete honesty) can be condoned  if the patient benefits from not receiving the full truth.  Johnston and Holt (2006) argue that although clinicians  should have discretion as to how sensitive or distressing  information is disclosed, they are neither qualified nor  justified to make a judgement to deliberately withhold  information or deceive patients, because:   • in considering patient welfare, the clinician must  consider the patient's overall best interests (not just  the medical best interests)   • the law recognizes that a competent patient deter-  mines his or her own best interests   • therefore it is unlikely that any clinician will know  the patient well enough to make such a judgement   • withholding information about risks prevents the  patient from making an effective decision in his or  her own interests.   Informed consent, autonomy and disclosure of risks is  discussed in Chapter 3.    Whatever, in connection with my professional  practice ... I see or hear, in the life of men, which  ought not to be spoken of abroad, I will not  divulge, as reckoning that all such should be kept  secret.   The duty of confidentiality is a cornerstone of the  therapeutic relationship between patients and doctors.  It has been included in professional oaths and declara-  tions from Hippocrates to the present day. A duty of  confidentiality can be explicitly invoked by the patient  requesting that information provided be kept confiden-  tial, but more usually in clinical practice, there is an  implicit obligation on the part of doctors, and    expectation on the part of patients, that information  will not be disclosed to third parties (Slowther 2010).  The most common reason in 2009/2010 for doctors  telephoning the BMA for advice concerned whether to  disclose confidential patient details. It is important to  note that even the Hippocratic Oath has a 'get out'  clause, however. 'Which ought not to be spoken',  implies that some things ought to be!   The right to confidentiality derives ultimately from a  right to autonomy, in that self-determination includes  deciding who knows what about oneself. Medical con-  sultations consist of a disclosure of information to a  healthcare professional. The purpose of such informa-  tion is to treat the patient - it has not been given for  any other reason. That information in a sense 'belongs'  to the person who disclosed it and ought not to be  broadcast to third parties without specific consent. If a  healthcare professional does not treat patients as auton-  omous, she is not treating them as equals - in the sense  of being rational beings in control of their own lives.   When thinking about or discussing confidentiality, it  is helpful to think in terms of three categories:   • A theoretical basis for confidentiality - which can be  justified in terms of deontology (we have a duty to  respect autonomy by not disclosing information  without consent), consequentialism (if doctors keep  confidences, patients trust doctors and disclose more  relevant details), virtue ethics (sensitive and respect-  ful doctors keep their patients' private details confi-  dential), as well as other ethical theories.   • A professional basis for confidentiality - quasi-legal  codes of practice set down by the GMC, and advice from  the Royal Colleges and indemnity organizations serve  as a reminder of what the medical profession and the  public expect of doctors. The GMC asserts that 'Patients  have a right to expect that information about them will  be held in confidence by their doctors' and 'Confiden-  tiality is central to trust between doctors and patients.  Without assurances about confidentiality, patients  may be reluctant to give doctors the information they  need in order to provide good care' (GMC 2009).   • A legal basis, which asserts a duty to maintain confi-  dentiality exists and states where exceptions are made  (e.g. in the case ofXv. Y (UK) [1988]; a newspaper  that obtained confidential medical records identifying  two doctors with HIV was restrained from publishing  the information. The court held that the confidential-  ity of the medical records was more important than  protecting the public from the theoretical risk the doc-  tors might pose and the freedom of the press.).   Remember. The duty of confidentiality is a cornerstone  of the doctor-patient relationship.   This duty of confidentiality in law arises when a person  gains information in circumstances where there is an  assumption, or a specific agreement, that the information  is confidential. Such a duty is held to apply to doctors.  The Medical Protection Society describes three general  conditions that establish a duty of confidentiality and  what constitutes a breach of that duty (adapted from  MPS Guide to Ethics: a map for the moral maze, 2011):   1 . Information must have an inherent quality of confi-  dentiality, e.g. obtained during a medical history or  a treatment carried out   2. Information must be disclosed in circumstances  implying an obligation of confidence. If informa-  tion given to a doctor in a medical practice, hospital  or in a clinical area (including at the bedside or in a  patient's home), then those circumstances imply an  obligation of confidentiality   3. Unauthorized disclosure would cause some harm to  the provider. This is more likely to be psychological  other than physical harm. This could include financial  losses. Consider the criteria for a successful claim in  negligence (breach of duty, causation, loss; see Ch. 1).   Dr B is a GP in a small town. Three days ago, she saw  Miss X in her surgery. Miss X is a 20-year-old student  who had been feeling unusually tired for over a month.  Dr B had sent off a number of blood tests. Dr B is shop-  ping in the local supermarket when she bumps into  Miss X's mother, who asks what is happening with  her daughter. What should Dr B reply?   It is potentially a breach of confidentiality for Dr B to  even confirm that Miss X, an adult patient has been to  see her, let alone tell her mother the test results. Dr B  does not know what Miss X would wish her mother  to know, and might reply that she does not discuss  patients outside the surgery.   Later in the day, Dr B is back at work. While Dr B is  conducting a review of another patient, Mr R's blood pres-  sure medication, he says, 'While I'm here doctor can I pick  up my wife's prescription?' How should Dr B respond?   Again Dr B needs to be sure that Mrs R is happy for  her prescription to be collected by her husband and/or  that her husband knows its contents.   The Data Protection Act (DPA) 1998 is extremely rele-  vant to doctors and medical students. This is because it  sets down and describes the statutory duty to maintain    the confidentiality of medical records (as well as all  other personal information which might be stored  about a person). It applies to both computer records  and paper records. There are eight principles of the Act.  (Think about how these might relate to patient health-  care records.):   • Information is adequate, relevant and not excessive  in relation to the purpose for which obtained   • Information is not used in ways contrary to the rights  of the data subject (the patient in the medical  records)   • Appropriate measures are taken to prevent un-  authorized disclosure of information   • Information is not transferred to areas that cannot  provide the above assurances.   The Data Protection Act 1998 gives the patient a certain  number of rights with respect to their medical records.  These include:   • The right to be informed about what information is  being held, and why   • The right of access to personal data. Patients have a right  to a copy of their medical records. They also have the  right to have this information communicated to them  in a way they can understand it. However, in order to  obtain this information, the patient must make a  written request, and may be required to pay a fee   • The right to correct information that is inaccurate. If a  patient feels that the information about them is mis-  leading, they can ask for it to be changed   • The right to seek damages as a result of misleading  information.   The Data Protection Act 1998 is extremely relevant  to healthcare professionals. You should know  what rights it gives to patients and what duties it  creates for doctors.   Sokol (2008) considers that, if we want patients to be  really informed about confidentiality, hospital doctors  and GPs might tell patients at the outset that there are  limits to this. Otherwise, some patients may believe that  doctors are committed to absolute confidentiality.    Hence, a GP might start the consultation: 'Hello, I'm  Dr Jones. I don't yet know the reason for your visit,  but I must tell you something first. I shall respect your  confidences, but if doing so is likely to put others at risk  of serious harm, then I might need to violate your con-  fidentiality, even if you object'.   Sokol's statement above sounds a bit silly (this is  intentional), but think about these two statements, fre-  quently used by medical students:   'You can tell me anything, nothing you tell me  will leave this room' and   'I have an obligation to keep anything you tell  me confidential, everything you tell me will stay  within the healthcare team'.   The first statement is obviously misleading. The sec-  ond statement still omits the idea that confidentiality is  not absolute.   The GMC has outlined that confidential information  about a patient can be disclosed:   • with the patient's consent (or the consent of a person  properly authorized to act on the patient's behalf,  e.g. the parent of a young child)   • within healthcare teams: This is in order to provide  the best care possible, and the patient should be  informed so as to understand why and when infor-  mation may be shared between team members   • when disclosure is required for a procedure that has  been agreed to, explicit consent would not be  required, e.g. giving relevant clinical information  to the radiologist when sending a patient for an X-ray   • in an emergency, if a patient is unable to give con-  sent, disclosure of confidential information to mem-  bers of the healthcare team can be in the patient's  best interests.   It must be noted, however, that if a patient does not  wish you to share particular information with team  members, you must respect those wishes (provided that  this does not endanger the safety of others). It is  the responsibility of all members of the team to ensure  that other team members understand and observe  confidentiality:   • Confidential information should be disclosed to  employers and insurance companies, only with the  patient's written consent. The purpose of the consul-  tation (if on behalf of a third party) should be made  clear from the outset.   • For the purpose of education, audit or research: inform  the patient of the purpose of disclosure and that  the person given access to the records will be under  a duty of confidentiality. Seek their consent and as  far as possible, anonymize the data and keep the dis-  closures to the minimum required. Where research  projects are using identifying information, and it is    not practical to inform patients, then this needs to be  brought to the attention of the research ethics com-  mittee. Expressed consent should be obtained before  publishing case histories and photographs (many  journals now require written consent from the  patient).   In the patient's best interest: if a patient is unable to  give consent owing to immaturity, illness or mental  incapacity. However, the patient should, as far as  possible, be informed of your intention. If a patient  is a victim of neglect, physical or sexual abuse and  unable to give valid consent and you believe disclo-  sure will prevent further harm, you must disclose  information to the appropriate responsible person  or statutory agency.   In the interests of others: if not doing so will lead to a  risk of serious harm or death (e.g. contact tracing in  HIV). However, you should inform the patient of  your intention to make the disclosure.   If a colleague, who is also a patient, is placing  patients at risk.   If disclosure is required for the prevention or detec-  tion of a serious crime.   When it is recpdred by statute or the courts: for example  there is a requirement by statute to give information  under the Public Health (Infectious Diseases) Regu-  lations SI 1988/1546 about certain 'notifiable' dis-  eases (HIV is not a notifiable disease), if ordered to  disclose by a judge or the coroner. Doctors are  allowed to object to disclosure if an attempt is made  to obtain information about those not involved in a  particular proceeding or if irrelevant details are  requested.   After a patient's death: the obligation of confidential-  ity in general persists after the patient's death. There  are some instances when disclosure is appropriate.  For example, in order to assist a coroner, as part of  National Confidential enquiries or other clinical  audits, on death certificates or to obtain information  relating to public health surveillance.   To the Driver and Vehicle Licensing Agency (DVLA): the  DVLA is responsible for deciding if a person is med-  ically unfit to drive. If a patient has a condition that  impairs their ability to drive, you should explain to  them that they have a legal duty to inform the DVLA.  If the patient cannot understand this advice, e.g.  owing to dementia, you should inform the DVLA.  If patients refuse to accept your diagnosis, you should  advise them to seek a second opinion and refrain  from driving until that time. If a patient continues  to drive when they are not fit to do so, you should  make every effort to persuade them to stop; this can  include telling their next of kin. If they cannot be per-  suaded, you should inform the medical advisor at the  DVLA. Inform the patient that this is your intention  and write to confirm that a disclosure has been made.   There are a number of Acts of Parliament which either  permit or require that confidential information be dis-  closed in particular circumstances. These include:   1 . Disclosure in court, e.g. when a doctor is brought to  give evidence on the extent or cause of an injury   2. If the police request access to records in accordance with  the Police and Criminal Evidence Act 1984   3. 'Notifiable' disease must be reported to the authorities in  accordance with the Public Health (Infectious Dis-  eases) Regulations 1988 (SI1988, No. 1546). These  include, among others: cholera, meningitis, anthrax,  diphtheria, measles, mumps, rubella and tuberculo-  sis (neither HIV nor AIDS is a notifiable disease)   4. In accordance with the Terrorism Act 2000. All individ-  uals have a legal obligation to disclose to the police,  as soon as reasonably practicable, any information  that they know or believe might be of material assis-  tance in preventing the commission of an act of ter-  rorism anywhere in the world. It is a criminal  offence not to disclose such information, punish-  able by up to 5 years in prison   5. The Children Act 1989/2004 holds that information  pertaining to child abuse must be given if requested  by the local authority - it does not oblige doctors to  report suspected abuse, although both the GMC and  the BMA advise there is a duty to report   6. The Health and Social Care Act 2012 deals with the  regulation of patient information. It allows the Sec-  retary of State to make provision for the disclosure of  information in the interests of improving patient  care or in the public interest. In particular, this  allows for the disclosure of patient records to the  patient or a prescribed individual on behalf of the  patient.   You are a GP at a university student health centre. One  of your patients, Mr S, reveals in the course of a consul-  tation that he has thoughts about harming another stu-  dent, Ms L, who has rejected his romantic advances. You  are aware that Mr S has been under the care of mental  health services as a teenager, and has been before the  university's disciplinary board for disorderly conduct  while under the influence of drugs and alcohol. Mr S  says he expects you to keep the consultation confiden-  tial as he wishes to remain on his university course  and feels that disclosure of the consultation could result  in his being suspended or expelled. He agrees to be  referred for counselling. Should you warn the university  authorities, or Ms L?   1 . Without the assurance of confidentiality, Mr S may  be deterred from seeking assistance    2 . Confidentiality is essential in eliciting the full disclo-  sure necessary for effective treatment, and an integral  part of the trust between patient and physician or  therapist.   1 . The clinician-patient relationship - where there is a  relationship with someone whose conduct needs to  be controlled or the foreseeable victim of that con-  duct, the clinician has the discretion to break  confidentiality   2. Autonomy of the person at risk - given that the duty  of confidentiality is based on respect for autonomy,  we should also consider the loss of autonomy of the  victim and weigh that against the loss of autonomy  (to the patient) caused by disclosure, even if un-  warranted   3. Public interest in disclosure - there is a public inter-  est in the maintenance of confidence, but this could  be outweighed by a public interest in safety.   Mr L, an HIV-positive patient demands you tell no-one  else of his diagnosis, including others of the healthcare  team. Key points include confidentiality and preventing  risk to third parties.   What makes HIV/AIDS different from other diseases  is that there is still no cure for the disease, that patients  can live apparently unaffected for a long period of time  (but still be infective) and that there is a degree of stigma  associated with the disease.   The ethical thinking behind maintaining confidenti-  ality and not disclosing includes:   1 . The right to privacy, based on a respect for autonomy   2. The fact that the erosion of confidence in the med-  ical consultation will lead to worse consequences  (e.g. fewer people with HIV seeking treatment).   Factors that might persuade us in this case to break con-  fidentiality would include:   1. Not disclosing the patient's HIV status to the  patient's sexual partner could put the partner at risk  of infection if sex is unprotected   2. Other healthcare professionals might be unaware of  their risk of infection, and some procedures, such as  dentistry and surgery may involve accidental contact  with blood   3. Not telling other members of the healthcare team  may lead to the provision of inappropriate treat-  ment for Mr L or someone infected with HIV after  sexual or blood-borne contact.   In practice, a reasonable course of action would start  with explaining to the patient why you think it is neces-  sary that the healthcare team knows about his HIV sta-  tus. The patient should also be informed that all  healthcare staff (and students) are under a duty of    confidentiality and, in particular, a GP is not well placed  to manage the patient's condition unless informed  about the patient's HIV status. However, with regard  to informing a GP, if the patient continues to refuse a  disclosure, his wishes ought to be respected. If he  has communicated an intention to engage in risky  unprotected sex, there may be a duty to warn the  patient's partner. Contact-tracing for non-notifiable dis-  eases (see above) is at the discretion of the patient.  Rarely, e.g. if the patient is violent or severely mentally  disturbed, disclosure to the GP without consent may be  appropriate.   1. The harm in the breach of confidentiality lies in dis-  tress caused by ignoring the patient's wishes, and the  loss of trust that follows. The loss of trust may deter  the patient from seeking help in the future. There  may be additional consequential harms such as  break-up of the patient's relationship, and stigma,  as a result of the diagnosis becoming known.   2. The main benefit is the potential avoidance of a seri-  ous risk to the patient's partner's health. It seems rea-  sonable that preventing infection with HIV is a good  enough reason to breach confidentiality. The view  that doctors have a duty of care only towards patients  and as such, do not need to look out for the interests  of their partners or other relevant third parties, is not  generally accepted. The GMC advises that you  should disclose information in order to protect a  person from risk of death or serious harm (even with  significant improvements in the management of the  disease, contracting HIV is arguably a serious harm).  However, you must not disclose information to rel-  atives or others who have not been, and are not, at  risk of infection. The approach of the courts has been  to consider the public interest in maintaining confi-  dentiality (confidentiality encourages patients to  seek treatment) against the public interest in disclo-  sure (protection of people at risk).   3. For a discussion of legal issues linked to HIV, see  Yeoman 2007.    Doctors may hold personal beliefs or values which may  conflict with those of their patients and colleagues. There  is for example a conscientious objection clause in the  Abortion Act 1967 (amended 1990), which allows a  doctor to opt out of providing abortions (see Ch. 4).  Savulescu argues (2006) that where a service is provided  legally in the UK, doctors should be obliged facilitate    it, irrespective of their personal beliefs. Otherwise, some  people are unfairly denied a service they are entitled to,  purely because of their doctor's beliefs. Seale (2010) has  suggested that the medical profession is often not repre-  sentative of the general population in terms of ethnicity  and religion, in his study for example specialists  in geriatrics were more likely to be Asian, Hindu and Mus-  lim, and specialists in palliative care were more likely to be  white and Christian. The GMC guidelines (2008) state:   • you must not unfairly discriminate against patients  allowing your personal views to affect adversely  the professional relationship with patients   • if carrying out a particular procedure or giving advice  about it conflicts with your religious or moral  beliefs, and this conflict might affect the treatment  or advice you provide, you must explain this to  the patient and tell them they have the right to see  another doctor. You must be satisfied that the  patient has sufficient information to enable them  to exercise that right. If it is not practical for a patient  to arrange to see another doctor, you must ensure  that arrangements are made for another suitably  qualified colleague to take over your role   • you must not express to your patients your personal  beliefs, including political, religious or moral beliefs,  in ways that exploit their vulnerability or that are  likely to cause them distress.   Medical schools usually make some allowances for con-  scientious objection. For example students are not cur-  rently obliged to assist in abortions if they have a  conscientious objection. However, there is controversy  around whether a student stating a conscientious objec-  tion in an objective structured clinical examination  (OSCE) could pass or obtain full marks. Students  who have difficulty even offering simulated advice,  which conflicts with their beliefs or ethical position  should think about what other skills are being tested  (e.g. there may be as many marks for taking an adequate  sexual history as for offering contraceptive advice in an  OSCE station) . They should also discuss this issue with a  clinical advisor and/or find out what the position the  medical school takes on this issue. Attempting to evan-  gelise patients, whether real or simulated, is considered  to be an inappropriate use of a doctor's influence over a  potentially vulnerable patient (personal boundaries  and power imbalance in the doctor-patient relation-  ship are considered below).    Mistakes happen in all workplaces; however, given that  medicine does literally deal with matters of life and  death, the results of mistakes may be considerably more    grave than those made in other walks of life. The Bristol  Royal Infirmary Inquiry addressed the question of how  to learn from mistakes. This inquiry identified a 'culture  of blame and stigma' within the NHS. How then should  students and doctors react when they realize they have  made a mistake? How should they react if they become  aware that one of their colleagues is making mistakes or  behaving in an unprofessional way?   If you make a mistake, a reasonable course of action  may be to:   • with the agreement of your supervisor, apologize to  the patient and explain why the mistake was made -  also explain the consequences of the mistake. The  patient may wish to speak to a more senior doctor,  and depending on the gravity of the mistake, this  may be appropriate. Inform the patient what steps  are being taken to rectify the mistake.   ft is difficult to ethically justify not telling the patient  that a mistake has been made.   Remember: the GMC says that the safety of patients  must come first at all times.   If you believe that a colleague is behaving in a way  which calls into question his or her fitness to practise  there are a number of options:   • Consider whether or not patients are at risk: The GMC  guidance is that 'You must protect patients from risk  of harm posed by another colleague's conduct . . . The  safety of patients must come first at all times'   • If you feel able to, you could approach your colleague  directly and voice your concerns. You may be able to  reach an agreement whereby your colleague takes  time off work and seeks professional help   • If you are uncomfortable approaching your col-  league directly, or your colleague denies there is a  problem, you should voice your concerns to an  appropriate person from the employing authority,  e.g. your colleague's educational supervisor, the edu-  cational sub-Dean (if in a hospital) or the medical  director. If the concern is about a medical problem  such as drug/alcohol addiction, psychiatric illness  or a serious infectious disease, you may wish to  speak to a consultant in occupational health   • Remember that you still have obligations of confi-  dentiality towards your colleague and any patients  involved (see above)   • You may wish to discuss your options with your  defence organization or the GMC.   The Public Interest Disclosure Act 1998, which is some-  times called the 'Whistle-Blowing Act', aims to protect    those employees who report their concerns about the  performance of colleagues (to the appropriate authori-  ties). Employees who claim they have been dismissed or  passed over for promotion as a result of such a disclo-  sure, may bring the case before an employment tribu-  nal. It does not protect the 'whistleblower' from libel  proceedings if an allegation of misconduct turns out  to be false. The Act does not cover volunteers and self-  employed individuals.   It is important to determine whether or not patients are  at risk because of the behaviour or illness of a health  professional. What are the sorts of professional issues  which might arise from illness in clinicians? The GMC  is not completely specific, rather it talks about any con-  dition that leads to a colleague 'placing patients at risk as  a result of illness or another medical condition'. One  envisages that this could include the following:   • Serious communicable diseases: particularly HIV,  tuberculosis, hepatitis B and C. The GMC recom-  mends that if you believe a medical colleague has a  serious communicable disease and is continuing to  practise in a way which places patients at risk, you must  inform an appropriate person in the healthcare  worker's employing authority, such as an occupational  health physician. Of course, doctors with disease are  allowed to continue to practise; however, they may  be restricted in the invasive procedures they perform   • Psychiatric disorders, including depression (that  hinders the ability of the doctor to properly care  for his or her patients), personality disorders and  psychotic disorders   Occupational health staff may have conflicting respon-  sibilities. The well-being and confidentiality of the  worker may conflict with the needs of the employer  and protection of patients. Doctors have an ethical duty  to prioritize patient safety.    The GMC and indemnity organizations tell us that it is  always the doctor's responsibility to maintain appropri-  ate professional boundaries. Sheather (2011) argues  that, ordinarily, the primary obligation of a doctor is  to promote the best medical interests of their patients.  To an extent, therefore, the requirement to respect the  integrity of professional boundaries is allied to the eth-  ical requirement to avoid, as far as reasonably possible,  those circumstances in which conflicts of interest are  likely to arise.   The doctor-patient relationship may involve an imbal-  ance of power between the doctor and the patient. This  could arise, e.g. from the doctor having access to exper-  tise and healthcare resources which the patient needs, or  the possible vulnerability - emotional or physical - of a  patient seeking health care. This may be particularly  acute in some specialties such as psychiatry but can arise  in any relationship between doctor and patient. GMC  guidance (Maintaining Boundaries, 2006) states that  in successful doctor-patient relationships, a profes-  sional boundary exists between the doctor and patient.  If this boundary is breached, this can undermine the  patient's trust in their doctor, as well as public trust in  the medical profession.   Much literature about professional boundaries concerns  'improper' sexual behaviour. However, professional  boundary issues can include:   • Dealing with poorly performing colleagues or mis-  conduct by colleagues (see above)   The popularity of internet-based social media has  grown rapidly in recent years. There is widespread use  of internet sites such as Facebook and Twitter among  medical students and doctors and there are a growing  number of well-established blogs and internet forums  that are aimed specifically at medical professionals,  such as doctors.net.uk and the BMJ's doc2doc. The  BMA's ethical advice is summarized below:   • Social media can blur the boundary between an indi-  vidual's public and professional lives   • Doctors and medical students should consider  adopting conservative privacy settings where these  are available but they should be aware it is hard to  protect online information   • The ethical and legal duty to protect patient confi-  dentiality applies equally on the internet as to other  media   • It is inappropriate to post informal, personal or  derogatory comments about patients or colleagues  on public internet fora   • Doctors and medical students who post online have  an ethical obligation to declare any conflicts of  interest    • The BMA recommends that doctors and medical stu-  dents should not accept Facebook friend requests  from current or former patients   • Defamation law can apply to any comments posted  on the web made in either a personal or professional  capacity   • Doctors and medical students should be conscious  of their online image and how it may impact on their  professional standing.    The duty to protect patient confidentiality applies  equally on the internet as to other media.   The GMC, in its 2006 guidance 'Maintaining Bound-  aries', draws a number of distinctions regarding inti-  mate relationships.   With current patients they are prohibited: 'You must  not pursue a sexual or improper emotional relationship  with a patient'. The ban on sexual relationships with  current patients is absolute (Sheather 2011). Sheather  explains that this is because illness can still render even  the most self-assured person, temporarily vulnerable to  exploitation. Nor is it just a question of authority. Dur-  ing medical consultations, patients may need to reveal  the most intimate details. A relationship predicated  on such one-sided disclosure must raise questions  about the balance of power.   Sexualized behaviour has been defined as acts, words  or behaviour designed or intended to arouse or gratify  sexual impulses and desires. If a patient displays sexual-  ized behaviour, wherever possible, doctors are encour-  aged to try and re-establish a professional boundary.  Where this is not possible, sometimes doctors have to  end the professional relationship.   But what if I practise in a remote location and  everyone in the local community is my patient?   The GMC does not really answer this question. It states  that 'If circumstances arise in which social contact with a  former patient leads to the possibility of a sexual rela-  tionship beginning, you must use your professional  judgement and give careful consideration to the nature  and circumstances of the relationship . . .'. Take into  account the following:   • When the professional relationship ended and how  long it lasted   • Whether the patient was particularly vulnerable at  the time of the professional relationship, and  whether they are still vulnerable    • Whether the doctor will be caring for other members  of the patient's family.   If you are not sure whether you are - or could be seen to  be - abusing your professional position, it may help to  discuss your situation with an impartial colleague, an  indemnity organization, the BMA or (confidentially)  with a member of the GMC Standards and Ethics team.   One of the ways in which professional boundaries are  managed is with effective use of chaperones, where an  intimate examination is to be performed. In the medical  context, a chaperone is a person (who should be trained  for the role) who witnesses a doctor's conduct during  circumstances where either a patient is vulnerable  (mainly during intimate examinations) or to protect  the doctor against allegations of indecent assault. The  use of chaperones has been particularly encouraged  since 2000, when GP Clifford Ayling was convicted of  12 counts of indecent assault and accused of 23 others.  The case resulted in a Department of Health (2004)  investigation.    Remember: you may need a chaperone even if you are  of the same gender as the patient.   1 . Examination of the breasts, genitalia and rectum are  generally assumed to be intimate examinations.   2. Any examination where it is necessary to touch or be  close to the patient, can be considered intimate,  such as eye examinations in dimmed lighting, pal-  pating the abdomen or looking for an apex beat.   3. Cultural and religious factors may play a role in  whether an examination is intimate and whether a  chaperone is needed.   4. Patients may consider themselves, or could be con-  sidered, vulnerable - this is regardless of whether the  examining clinician considers them to be sexually  attractive.   The presence of a chaperone protects the doctor. It is  unlikely that a doctor will be accused of sexual assault  if a chaperone is present. A chaperone also may protect  potentially vulnerable patients and may be practically  useful: e.g. assistance might be needed with the exami-  nation, with undressing and dressing and the chaperone  may act as an interpreter or help answer questions.   However, there may not be an appropriate (or  indeed any) chaperone available. Also, the patient  may have cultural objections to another person being  present and has the right to decline a chaperone. The  patient may have concerns about confidentiality.   • Offer a chaperone if you think that there is a need for  an intimate examination.   • Obtain and record informed consent for the exami-  nation and the presence of a chaperone. Record the  name and role of the chaperone.   • If the patient declines but you would prefer a chap-  erone to be present, explain why this is the case and  try and get agreement from the patient. Record this  in the notes.   • Be sensitive to cultural differences - these may have a  bearing on the patient's decision.   • It is good practice to give the patient privacy to  undress and dress; use curtains if needed to maintain  a patient's modesty while they are being examined.   • Explain to the patient what you are doing, through-  out the examination. Avoid making irrelevant or per-  sonal comments.   • The chaperone should be present for the minimum  appropriate period. They do not necessarily need to  remain for the whole consultation.   • Record any concerns you or the patient have about  the examination.   • if the patient suggests explicitly or implicitly that  they find you sexually attractive   • if you find the patient sexually attractive, this can be  more obvious and threatening than you think   • patients of the same sex as the doctor may also  require a chaperone   • some examinations can be deferred (e.g. a non-  urgent presentation in general practice) if you are  concerned about a particular patient making allega-  tions or exhibiting sexualized behaviour.   Coldicott et al (2003) suggest that, 'The teaching of vag-  inal and rectal examinations poses ethical problems for  students and educators, and guidelines exist to protect  patients from unethical practice'. The findings of their  exploratory survey suggested that best practice is not  always followed and that in many cases, consent has  not been given for procedures. The GMC guidance is clear:   • Prior consent is needed, usually in writing, for the  intimate examination of anesthetized patients.   • Doctors supervising a student should ensure  that valid consent has been obtained before  they carry out any intimate examination under  anaesthesia.   • Students are also under an obligation to make sure  that consent is obtained.    Students in Coldicott's survey were still reluctant to  speak out if they found something inappropriate or  were experiencing ethical discomfort, fearing repercus-  sions. Intimate examinations performed with anaes-  thetic had a much higher anecdotal reportage of no  consent being gained (Coldicott et al. 2003). The GMC  guidance is that 'You must protect patients from risk of  harm posed by another colleague's conduct . . . The safety  of patients must come first at all times'. In this instance,  conducting an intimate examination on someone with-  out their consent is considered legally to be causing harm  to that person.   Another area where potential boundary problems  can arise, is in relation to financial dealings involv-  ing patients. These can include gifts from grateful  patients, patients telling doctors that they have been  made the future beneficiaries of their wills and doc-  tors having financial interests in care homes or other  healthcare providers to which they wish to refer their  patients.   Consider whether it would be appropriate for a doc-  tor to accept any of the following:   • A box of chocolates from a patient to Emergency  Department staff, just before she asks for a 2-week  supply of sleeping tablets   • A case containing six bottles of Champagne, from a  grateful patient after his GP spots a skin cancer in  time for it to be removed with clear margins   • Free educational meetings at a local private hospital,  led by consultants at that hospital   • A limited edition luxury car, from an elderly lady to  her favourite geriatrician   • A cheque for £300 towards a new piece of equipment  for a GP health centre from a patient who has just  been diagnosed with a terminal illness   • An all-expenses-paid trip to a dermatology confer-  ence in the South of France, courtesy of a leading  brand of topical steroids.   Although, on the face of it, a gift from a grateful patient  may be harmless enough, professional bodies urge cau-  tion. As the BMA says in Medical Ethics Today, 'doctors  need to be aware that in some rare cases gifts or loans  may be offered by patients as a means of establishing  an improper sense of closeness'.   Doctors also need to be sensitive to potential issues  arising where they are made beneficiaries to a patient's  will. They need to avoid, e.g. any involvement in asses-  sing the patient's capacity to make legal and financial  decisions, and be sensitive to the possibility that finan-  cial interests might be seen to have an impact on clinical  decision-making. Where such conflicts of interests can-  not be avoided, they should be disclosed to those with a  relevant interest.   You have come to work early at a busy suburban GP sur-  gery. Two of you colleagues are sick and there is a back-  log of paperwork. As you are about to read the first  letter, there is a knock on your office door. The recep-  tionist tells you that one of the local hospital consul-  tants, whom you know to be a good friend of the  senior GP partner, has popped in early on the 'off  chance' of seeing a GP before work. Would you make  special allowances for a colleague? Why might you  and why might you not do this?   Would you be more likely to see him before morning  surgery if:   Why would any of these influence your decision? If  there are good reasons which you might give preferen-  tial treatment to any of the above types of person, then  consider where you might set your limits. Doctors can  be put under pressure by those seeking to blur bound-  aries for their own interests. Friends and family mem-  bers short on time, or medical colleagues doubtful  about confidentiality or the impact of disclosures on  their careers can seek informal consultations. Sheather  (2011) suggests that the requirement to respect clinical  boundaries can therefore insulate doctors from pres-  sures that might otherwise be coercive.    The argument that research of some sort is necessary  runs as follows:   • Research can improve the human condition and/or  aims to reduce human suffering   • Medical research can increase the length and quality  of life.   Medical research has been regarded as a particularly wor-  thy activity. However, previous abuses, particularly under  the auspices of medical research, require us to remain vig-  ilant in order that the rights of the individual are not    ignored. Thus, there exists a tension between reducing  future suffering and the rights of the individual.   There is an ethical difference between research and  audit. Research ethics committees are generally reluc-  tant to give opinions on audits. Medical research is  the systematic acquisition and pursuit of medical  knowledge. A medical audit specifically assesses how  well an established standard is met in practice.  (Research and audit are covered in more detail in  Chapter 1 1 .) As such, this is an essential part of ensuring  quality in healthcare delivery. Even so, UK hospitals  have personnel dedicated to approving formal audits,  both to ensure the quality of the audit and to safeguard  patient information. The ethical boundary between  audit and research may sometimes be blurred, espe-  cially with regard to the use of patient information.   The current regulations around medical research have  largely arisen as a result of public outrage at human-  rights abuses conducted in the name of medical research  during the twentieth century.   The US Public Health Service undertook an experiment  to study the progression of syphilis. This took place in  Tuskegee, where up to 400 black men with syphilis were  studied. They were denied effective treatment (penicil-  lin) even after it became available.   Medical experiments were carried out in Nazi Germany  under the direction of Dr Josef Mengele. Human sub-  jects were treated like, or indeed worse than, animals  in medical research.   The Nuremburg Court specified 10 points - known as the  'Nuretnburg Code' - as a result of the case United States v.  Brandt. (Brandt was Hitler's personal physician -  although the case also heard 19 other Third Reich doctors  and three biomedical scientists; and the trial was con-  ducted under US military patronage.) The key points of  the Code are:   4. The avoidance of 'unnecessary physical and mental  suffering and injury'    6. The termination of the experiment if it becomes  clear that harm will result or if the human subject  wishes to bring it to an end.   The World Medical Association (WMA) adopted a Code  for Research and Experimentation that allowed proxy  consent; effectively a weakening of the position of the  Nuremburg Code.   The WMA's Declaration of Helsinki allowed for some  experimentation on human subjects, including the  very young, the unconscious and those who lacked  legal capacity such as the mentally ill. More popular  with the medical profession, as the Nuremburg Code  is more restrictive.   Informal research ethics committees (RECs) established  in the UK after a report by the Royal College of Physi-  cians; these are non-statutory bodies composed of  members drawn predominantly from the health profes-  sions (although there are some lay members) to con-  sider proposals for clinical trials. The role of RECs is  considered below.   Principal guidelines covering research in the UK issued by  the Royal College of Physicians require that experimenta-  tion be subject to ethical review prior to being carried out.  The guidelines make a number of recommendations  about the review process. Key points:   • It is ethical for a controlled trial to be undertaken  only if, at the outset, the investigator does not know  whether the trial treatment is more effective or less  effective than the standard treatment with which it  is to be compared (or than no treatment at all in  the case of a placebo controlled study).   • Withholding effective treatment for a short time can  sometimes be acceptable but patient consent is nec-  essary and the patient may agree that he need not  know precisely when this will take place.   • If a patient expresses a strong preference for a partic-  ular treatment, he is probably ineligible as a parti-  cipant.   • Randomization of treatment without the consent of  the patient is unethical.   Department of Health issued guidelines (HSG(91)5) to  local research ethics committees and (HSG(97)23) to    established multi-centre research ethics committees.  The document, 'Governance arrangements for NHS  research ethics committees' (2001) provided a frame-  work for the ethical review of proposals for research  in the NHS and social care.   International Conference on Harmonization - Guidelines  for Good Clinical Practice. This sets out an international  ethical and scientific standard for research on human  subjects. It is consistent with the principles of the Declara-  tion of Helsinki and it aims to provide a unified standard  for the European Union, Japan and the USA.   The Medications for Use (Clinical Trials) Regulations  aim to standardize the regulation of medical research  throughout the EU, including the factors that a research  ethics committee must consider before approving a clin-  ical trial. Responsibility for not breaking the law  remains with the researcher and the research institution.   The Integrated Research Application System (IRAS) is a  single online system for applying for permissions and  approvals for health and social care/community  research in the UK. In theory, the system allows all  the information relating to an NHS research project in  one site, from which other relevant forms such as Site  Specific Information forms for local approval in  multi-centre studies, can be generated.   Medical research in the UK is subject to ethical review by  an NHS research ethics committee. In 1991, The Depart-  ment of Health required that every health district set up  a local research ethics committee to scrutinize the ethi-  cal justification for local medical research. These com-  mittees require a multidisciplinary approach and  commonly consist of lay members, clinicians and often  a philosopher/theologian and/or a statistician/ scientist.  The main remit of NHS RECs is clinical trials such as tri-  als of new medications in the UK. What then do these  committees look for in research proposals? How do they  weigh potential public benefit against potential harm to  individuals?   1. The position of equipoise: In order to carry out medical  research, you must be in a position of equipoise - this  means that it isn't lmoum whether the experimental    treatment is any more effective than current treat-  ments. You should have reason to believe that, e.g.  it has been demonstrated to be more effective in ani-  mal studies, but have no actual evidence. This means  there is a responsibility to ensure that the research  proposed has not already been carried out.   2. A dear purpose: You must establish a need for doing  the proposed experiment - it is important not only  that there is a position of equipoise before the exper-  iment, but that when the experiment is completed,  the results will in some way be important. If the  experiment is not scientifically valid, then it is  unlikely that it will be ethically justifiable.   3. The printiple of least harm: You should ensure that the  experiment's design allows only the minimal  amount of harm to befall the individual. This usu-  ally means that experiments should compare a  new treatment against the current standard treat-  ment, rather than against a placebo. You must dem-  onstrate that the potential benefits are greater than  the potential risks of the treatment.   4. Consent: Before commencing research, the partici-  pants should give their fully informed consent to take  part. You must inform patients of the potential risks  and benefits, and, if appropriate, whether or not they  will randomly be allocated to a treatment or control  group. Patients should be informed that they can  refuse to participate - and their refusal will not affect  their level of care. Patients should also be aware that  they can withdraw from the experiment at any time -  and that their withdrawal will not affect their subse-  quent level of care. Valid consent needs to be  informed, voluntary and from a competent patient.   5. The difference between therapeutic and non-therapeutic  research: Therapeutic research involves giving  patients an experimental treatment in order to see  how effective it is. Non-therapeutic research  involves doing something to healthy individuals.  That is, therapeutic research has potential benefits    for the patient, whereas non-therapeutic research  does not. Many people believe that non-therapeutic  research should involve lower levels of risk - because  there is little area for benefit. This distinction has  been dropped from the 2000 Helsinki Revision,  but still has legal force with respect to children and  those decisions to include individuals in a trial in  their best interests.   6. The philosophical approach (see Ch. 1 ) one uses can  affect whether one considers medical research to be  ethical or unethical (Fig. 2.2).   7. Adults lacking capacity and other vulnerable groups  are considered below.   Research ethics committees have to ask: ‘Is the  research needed? Is the research sufficiently well  designed? Is the use of animals justified or is there  adequate consent for people? What is the possibility of  benefit or risk of harm to participants?’   In ethical terms, a vulnerable group is any group that  lacks the ability to make informed choices about them-  selves. Thus, vulnerable individuals include children,  the incapacitated, the mentally ill and groups that  may be easily exploited (e.g. prisoners or those in the  developing countries) .   The basic problem posed by the involvement of children  in research is that they are not always able to give valid  consent. They may be competent to make some deci-  sions, but not others. Children over 16 are presumed  to have competence to consent to medical treatment    Fig. 2.2 A comparison of three different ethical approaches to research.   Source; Adapted from Hope T , Savulescu J, Hendrick J 2003 Medical Ethics and Law: the core curriculum. Edinburgh: Churchill Livingstone.    and, therefore, possibly consent to therapeutic research.  Children under 16 may be sufficiently competent to give  such consent as well. However, if a child is incompetent,  consent to participate in research should be obtained  from an individual with parental responsibility. Further-  more, the risks of the research must be sufficiently low to  say that participating in the research is still in the best  interests of the child. Whether or not a child can take part  in non-therapeutic research is contentious. However, if  the research involves something relatively low-risk, e.g.  taking a blood sample, then it may be ethically defensible  to allow such research (assuming the other criteria above  were met) . If at all possible, it would be better to seek the  child's assent to the procedure, even if fully informed  consent cannot be obtained.   Research in this group has some parallels with that in  children, but unlike the situation with children, in UK  law, no-one can consent on behalf of adults. All treat-  ment, which includes being entered for a trial, is made  on the basis of the patient's best interests. However, it is  hard to justify proceeding with experimental treatment  on incapacitated adults (e.g. stroke victims) without  consulting relatives first, simply because this shows a  willingness to communicate and a desire to find out  what the patient's wishes would have been if they were  able to express them.   Research on adults lacking capacity is covered by sec-  tions 30-34 of the Mental Capacity Act (MCA) 2005, in  addition to the Clinical Trial Regulations 2004, The Data  Protection Act 1998 and the Human Tissue Act 2004.   • the research must be connected with an impairing  condition affecting the mind or brain of an adult  with incapacity   • if the research is therapeutic, the benefits must  clearly outweigh the risks and the REC must have  reasonable grounds to believe that the research can-  not be carried out as effectively with people capable  of giving consent   • if the research is non-therapeutic, the risks must be  minimal and not unduly invasive, restrictive or  interfere with a participant's freedom or privacy   • the research cannot do anything contrary to a valid  advance decision by a participant   • the research cannot proceed if the participant  appears to be unwilling or objects.   A range of animals are used in research and it is not  obvious that standards appropriate for treating mice    are necessarily the same as the standards we think ought  to exist for experiments on primates. Furthermore, there  are good and bad experiments; some with the potential  to provide significant benefits to science and health and  some without. As a result, it seems simplistic to either  say that animal experiments should be allowed or that  they should not. Rather more debate should be centred  on what sort of potential benefit justifies experimenting  on animals.   A useful list of points to consider when deciding  whether a particular experiment justifies the use of ani-  mals might be as follows:   1. Is the experiment well designed, and will it produce  significant results?   2. Could the experiment be done without using labo-  ratory animals?   3. Can animal suffering be reduced, e.g. if the experi-  ment involves new surgical techniques, will the ani-  mals used be given anaesthesia as well as agents for  anaesthesia and muscle paralysis?   4. When using primates for research, consider the fol-  lowing question, 'Is this the sort of research we  would be happy doing to humans with a mental  capacity that is equivalent to that of the animals  being used? If not, why are we happy to do it on pri-  mates but not the mentally ill?'   A Select Committee on Animals in Scientific Procedures  reported in 2002 that:   • it is morally acceptable for human beings to use  other animals for research, but it is morally wrong  to cause them unnecessary or avoidable suffering   • there is a continued need for animal experiments  both in applied research and in research aimed  purely at extending knowledge   • there is scope for the pursuit of the three Rs of animal  research.   Reduction in number of animals used to obtain  information of a given amount and precision  Refinement of procedures to produce a minimal  amount or severity of suffering experienced by  the animals used.   Invitations to take part in research are an almost daily  part of university life in the UK. Certain types of    university research (e.g. when doing social science  research for an intercalated BSc, MSc or MD) do not  strictly involve conducting studies in the healthcare set-  ting. This may include sociological, psychological and  educational research. These studies, however are also  required to go through an approval process by the uni-  versity (or other relevant) ethics committee. The same  considerations set down in the declaration of Helsinki  will apply. Students undertaking these kinds of projects  may need to consider additional factors:   1. What other kinds of harm can be caused by  research? Harm may include the distressing nature  of certain topics of conversation in social science  research. It may also include the duty of the  researcher to report unethical or illegal conduct dis-  closed by research participants.   2. Are there issues of safety for the researcher? Travel-  ling alone to interview people in their own homes  may involve risk if it involves travel to locations of  social deprivation, or where research participants  have the potential and opportunity to be violent.   3. How will the personal information of participants  be protected? This includes how the identity of par-  ticipants is anonymized in publications.   Publication ethics is an important part of ensuring that  we trust findings published in academic journals. Issues  considered include:   1 . Falsifying results, e.g. in order to support a theory or  minimize dangers of a new procedure - journals  have statisticians who advise if results are 'too per-  fect'. This can result in an article being retracted,  as well as loss of registration and possible legal pro-  ceedings against authors   2. Not disclosing financial interests - has the research  funding shaped the direction of research?   3. Authors (and reviewers) not disclosing other sources  of major bias, such as being a shareholder in a com-  pany (financial); on the board of a charity or other  campaigning organization linked to the area of  interest (personal). In recent times there has been  debate about whether political or religious views  should be considered as major bias   4. Gift authorship - putting someone's name on the  paper who did not contribute to any of the work   5. Plagiarism - using someone else's work as if it is  your own and claiming credit for it   The Committee on Publication Ethics (COPE, at: www.  publicationethics.org) was established in 1997 by a    small group of medical journal editors in the UK but  now has over 6000 members worldwide from all aca-  demic fields. Many of the leading medical journals are  members of COPE.   • What are the respective roles of the GMC, the BMA,  the Royal Colleges and Medical Indemnity  organizations?   • What are the duties of medical students as envisaged  by the GMC?   • What kinds of ethical issues are faced by medical  students?   • Outline why truth telling is important and describe a  situation where medical information might be  withheld.   • Discuss the statutes which provide exceptions to  confidentiality in the medical context.   • Give an example of conscientious objection in  medicine - what are the arguments for and against?   • What are the main ethical considerations when  conducting research on animals?   • What are the key requirements of the Mental  Capacity Act 2005 for research involving adults with  incapacity?   Coldicott, Y„ Pope, C., Roberts, C. : 2003. Education and  debate: the ethics of intimate examinations. Teaching  tomorrow's doctors. BMf 326, 97-101.   Department of Health, 2004. Independent Investigation into  How the NHS Handled Allegations about the Conduct of  Clifford Ayling. HMSO, London. Online. Available at:  http://www.dh.gov.uk/prod_consum_dh/groups/dh_  digitalassets/ @dh/ @ en/documents/ digitalasset/dh_  4089065.pdf.   English, V., Romano-Critchley, G., Sheather, et al., 2004.  Medical Ethics Today. The BMA's Handbook of Ethics and  Law, second ed. BMf Books, London.   Fulford, K.W.M., Dickenson, D.L., Murray, T.H. (Eds.), 2002.  Many voices: human values in healthcare ethics. In:  Healthcare Ethics and Human Values. An Introductory Text  with Readings and Case Studies. Blackwell, Oxford, pp. 1-19.   General Medical Council, 2006. Maintaining Boundaries.  Online. Available at: http://www.gmc-uk.org/guidance/  ethical_guidance/maintaining_boundaries.asp.    General Medical Council, 2008. Supplementary Guidance:  Personal Beliefs and Medical Practice. Online. Available at:  http://www.gmc-uk.org/static/documents/content/  Personal_Beliefs.pdf.   General Medical Council (GMC), 2011. Good Medical Practice  and the Good Medical Practice: Framework for Appraisal  and Revalidation. Online. Available at: http://www.gmc-uk.  org / doctors/revalidation/ revalidation_gmp_framework.asp.   Gert, B., Culver, C.M., 1979. The justification of paternalism.  Ethics 2 (199-210), 204.   Gillies, J., 2004. Practical ethics for general practice (book  review). Br. J. Gen. Pract. 54, 884.   Hope, T„ Savulescu, J., Hendrick, J., 2003. Medical Ethics and  Law: the core curriculum. Churchill Livingstone, Edinburgh.   Johnston, C., Holt, G., 2006. The legal and ethical implications  of therapeutic privilege - is it ever justified to withhold  treatment information from a competent patient? Clinical  Ethics 1 (3), 146-152.   Seale, C., 2010. The role of doctors' religious faith and ethnicity  in taking ethically controversial decisions during end of life  cases. J. Med. Ethics 36, 677-682.   Slowther, A., 2010. Confidentiality in primary care, ethical and  legal considerations. InnovAiT 3 (12), 753-759.   Whitehouse, S. (Ed.), 2011. MPS Guide to Ethics: A map for the  moral maze. Medical Protection Society, Leeds. Online.  Available at: www.medicalprotection.org/uk/booklets/MPS-  guide-to-ethics-a-map-for-the-moral-maze.   Biggs, H., 2011. Children and health-care research; best  treatment, best interests and best practice. Clin. Ethics  6, 15-19.   BMA, 2011. Using Social Media: Practical and Ethical Guidance  for Doctors and Medical Students. BMA Medical Ethics  Department, London. Online. Available at: http://www.  bma.org.uk/images/socialmediaguidancemay2011_tcm41-  206859.pdf.   Sidaway v. Board of Governors of the Bethlem Royal Hospital  and the Maudsley Hospital, 1985 AC 871, 889, per Lord  Scarman.   This chapter discusses two key themes in medical ethics  and law, namely consent and the ability to make auton-  omous choices (capacity). The discussion focusses on  areas where consent may be problematic in medicine,  including the treatment (sometimes without consent)  of children and patients without capacity. As well as lib-  erty and consent, the other key issue discussed in this  chapter is the vulnerability of those who are very young,  very old or less capacitous for other reasons. The chapter  concludes with a discussion of ethics and mental health  problems. Just as the ethical treatment of a person  depends on what we consider to be the criteria of  personhood (see Ch. 4), the ethical treatment of mental  disorders depends on what we consider to be a mental  disorder.    Consent is arguably the most important concept in  medical law. In Chapter 1, we discussed the central con-  cept of autonomy and self-determination - this is  reflected in law through the concept of consent. Usually,  medical treatment may only be lawfully undertaken  with a patient's consent. The provision of consent pre-  vents the doctor from being held liable for trespass to  the person (i.e. assault and battery). A doctor who gives  treatment without consent risks criminal prosecution  for assault, if consent is not valid, or may be sued for  damages, if consent is valid but not adequately  informed.   The law does not always require consent to be in  writing:   • Expressed verbal consent: where the patient explicitly  agrees to what the doctor proposes.   • Implied consent: where the patient's behaviour sug-  gests that she agrees. For example where the doctor  tells a patient she needs to have a blood test and  the patient holds out her arm to have this done.   • Written consent: this is likelier for more invasive treat-  ment such as any form of surgery. The patient explic-  itly agrees to the proposed treatment and then signs  a consent form to state that they have understood  and agree with what is proposed. A signed consent  form is only evidence (and not conclusive proof)  that valid consent has taken place.    A legally valid consent (or refusal) for treatment has  three elements:   1. The patient must be competent to consent to (or  refuse) treatment   2. The consent (or refusal) must be based on adequate  information   Remember: The law does not always require that  patient consent must be in writing. Also, a signed  consent form may not be valid if consent has not been  obtained properly.    Competence is the patient's ability to understand, delib-  erate, make choices and communicate them to the doc-  tor. A patient is competent to consent or refuse  treatment if they have 'capacity'. A patient has capacity  if he or she can:   2. weigh the relevant information in the balance to  make a choice   This test is enshrined in the Mental Capacity Act (MCA)  2005. It is sometimes referred to as the 'Re CTest'. It was  outlined in a case where a schizophrenic patient, C, who  was detained in a psychiatric hospital, successfully  brought a legal injunction to prevent the proposed  amputation of his gangrenous leg without his express  written consent (Re C [1994]). Despite having a number  of clearly delusional beliefs, C was able to comprehend  and retain, believe and weigh up the relevant informa-  tion in order to make the choice to refuse a potentially  life-saving amputation. The key difference between the  'Re C Test' and the test of capacity in the MCA is that  patients are not required to believe that medical informa-  tion is true in the MCA test. The MCA is an important  piece of legislation which affects many aspects of health  care. It is considered in a separate section below.   All adults of age 18 and over are presumed to have  the capacity to consent or refuse. A patient may have  the capacity to consent to or refuse a particular    treatment, while not having the capacity to make other  decisions. Mental illness does not necessarily diminish  capacity to consent or refuse (see below). Capacity may  be diminished by the undue influence of others. A  patient's capacity may also be diminished by exhaustion  or pain, as in the case of NHS Trust v. T [2004],   A patient must understand in broad terms, the basic  nature and purpose of medical treatment. Doctors have  a legal duty to provide enough information so that a  patient understands what will be done, why it will be  done and what the likely consequences will be. Consent  is invalid if it is obtained though fraud or misrepresen-  tation as to the nature of the medical procedure.   Just as she is about to receive a general anaesthetic for a  hysterectomy, a woman tells the anaesthetist that she  plans to start trying for children as soon as her gynaeco-  logical problem 'has been sorted'. She has a signed con-  sent form for the procedure. Should the operation go  ahead?   Remember. A signed consent form is not proof of  informed consent. If it is obvious that a patient does not  understand the nature of the procedure - the nature  of a hysterectomy is that it will render a woman  incapable of bearing children - then this casts the  patient's consent into doubt. The operation should be  postponed until the patient understands what it  involves.   Remember: Mental illness does not necessarily diminish  a person's ability to consent to or refuse treatment.    SOME LEGAL CASES  ILLUSTRATING THE BROAD  NATURE AND PURPOSE  OF TREATMENT    In the case of Appleton and Others v. Garrett [1997], a  dentist performed unnecessary treatments for the pur-  pose of making money. Because he misrepresented  the purpose of the treatment by telling patients they  needed the dental work (when in fact he knew they  did not), the claimants succeeded in an action for 'tres-  pass to the person' (a charge which includes 'battery'),  and were awarded aggravated damages.    The attributes (including the qualifications) of the  clinician are also relevant to consent. In the case of  R v. Tabassum [2000] a man was prosecuted for conduct-  ing breast examinations while falsely claiming to be  medically qualified - both the nature of the person con-  ducting the examination and its purpose were misrepre-  sented (Herring 2010).   Appleton and Others v. Garrett [1997] contrasts with  the case of Chatterton v. Gerson [1987], where a patient  developed neurological damage after a phenol nerve  block and argued that battery had taken place because  of inadequate informed consent. Because the patient  had been informed in broad terms of the nature of  the procedure, consent was held to be valid.    Consent (or refusal) must be given voluntarily. Capacity  to consent or refuse may be compromised if the patient  is subject to coercion or undue influence. In the case of  Re T [1992], a mother persuaded her daughter to forego  a blood transfusion on religious grounds. The court  overruled the patient's refusal on the grounds of undue  influence.    While only the 'broad terms' are needed for consent to  avoid a charge of assault and battery, doctors also have a  duty to make the patient aware of the inherent risks and  side-effects of treatment, but only as far as is reasonable.  But who decides what is reasonable? In the leading case  of Sidaway v. Board of Governors of the Bethlem Royal  Hospital and the Maudsley Hospital [1985], the majority  of the House of Lords held that the degree of disclosure  was an issue to be judged primarily on the basis of what  a responsible body of medical opinion accepted as  proper practice. However, regardless of the professional  standard, the court considered that disclosure of a par-  ticular risk may be so obviously necessary to an  informed choice on the part of the patient that no rea-  sonably prudent clinician would fail to make it. By con-  trast, in Pearce v. United Bristol Healthcare NHS Trust  [ 1 9 9 9 ] , it appeared that the Court of Appeal was moving  towards the idea that whether a risk is significant, and  therefore should be disclosed, should be measured from  the perspective of a 'reasonable patient' (Johnston &  Holt 2006).   If reasonable risks are not disclosed, the doctor may be  liable in negligence on the basis that they have breached  a duty to disclose reasonable risks. It is not necessary to  discuss every risk and possible side-effect (however rare),    but doctors need to keep three ideas in mind when dis-  cussing risks and side-effects (Garside 2006):   • How likely is the risk or side-effect? A side-effect  which is likely should be disclosed. In Sidaway  [1985], Lord Bridge gave the example of an inherent  10% risk of a stroke from an operation. A 1-2%  chance of paraplegia was deemed significant in  Chester v. Afshar [2004], However, the statistical risk  of 0. 1-0.2% of stillbirth was not considered by the  court to be 'significant' in Pearce [1999],   • How severe might the side-effect be? A risk of severe  disability of death should be mentioned.   • Is there any particular concern a patient might have?  For example a person who only has sight in one eye  might be particularly concerned with the side-effects  of any treatment on that eye. An opera singer might  be particularly keen to know of any treatment side-  effect that might damage his voice.   In order to sue a doctor for negligence with regard to suf-  ficient information (in the context of consent), a patient  has to prove that it was more likely than not that: the  information given was inadequate by accepted stan-  dards; the patient would have withheld consent at the  time, had adequate information been given; harm  resulted from the procedure for which informed con-  sent was inadequate.   The legal case often referred to in discussions about  sufficient information is Chester v. Afshar [2004], which  was ultimately heard in the House of Lords: A patient  developed cauda equina syndrome following spinal sur-  gery. The House of Lords held that it was sufficient for  her to prove that she would have postponed her deci-  sion and surgery, even if she might have consented to  undergo the procedure at a later date.    This provides a statutory framework to empower and  protect vulnerable people who are not able to make  their own decisions. It makes clear who can take deci-  sions, in which situations, and how they should go  about this. It enables people to plan ahead for a time  when they may lose capacity. The MCA 2005 only con-  cerns adults who are legally incapable [Note: In England  and Wales the Mental Capacity Act applies from the  age of 16).   Capacity is not present if a person is unable to do any  of the following: ( 1 ) understand relevant information;  (2) retain the relevant information; (3) use the informa-  tion to come to a decision; (4) communicate the deci-  sion (whether by talking, using sign language or any  other means).   1. Presumption of capacity - every competent adult  has the right to make his or her own decisions  and must be assumed to have capacity to do so  unless it is proved otherwise   2. The right for individuals to be supported in making  their own decisions - people must be given all  appropriate help before anyone concludes that they  are incapable of making their own decisions   3. Individuals retain the right to make what might be  seen as eccentric or unwise decisions   4. Best interests - anything done for or on behalf of  people without capacity must be in their best  interests   5. Least restrictive intervention - anything done for or  on behalf of people without capacity should be the  least restrictive of their basic rights and freedoms.   • It allows people to choose a person to whom they  give 'lasting power of attorney' or LPA. LPA allows  decisions to be made about health, wealth and social  care; however, the person who is choosing the LPA  decides what decisions the LPA can make. This must  be done in advance of a person becoming incapaci-  tated, e.g. a patient in the early stages of Alzheimer's  may decide who should be able to make decisions  on their behalf when they are no longer capable  and specify what decisions the LPA relates to. How-  ever, a person with LPA must still consider the inca-  pacitated person's best interests.   • The Court of Protection makes decisions on behalf  of those without capacity. Decisions on financial  and social care as well as medical care can be made.   • The Court of Protection delegates to the 'Office of  the Public Guardian' (OPG) the power to assign a  court-appointed deputy to make decisions on the  incapacitated person's behalf: this will usually be a  relative or friend.   • Those who have not appointed someone with LPA  and do not have a suitable carer are appointed an  Independent Mental Capacity Advocate (IMCA).   • An 'advance decision' means a decision made by  a person of 18 years or over, while that person  has capacity, which refuses a specified treatment  for a time when that person is no longer capable  of making such treatment decisions.   • Advance decisions must be 'valid' and 'applica-  ble': Advance decisions are invalid if the person  has withdrawn the decision at a time while capa-  ble of doing so, has given an LPA permission to  make decisions about the advance decision, or  behaved inconsistently with the advance deci-  sion being a fixed decision. Advance decisions    are not applicable if the treatment proposed is not  the one specified by the advance decision, or if  any circumstances specified in the advance deci-  sion are absent, or if circumstances that the per-  son did not envisage and that may have affected  that person's decision are present.   • Advance decisions are not applicable to a life-  sustaining treatment unless explicitly specified  in the advance directive.   An unconscious adult is brought into the emergency  department. He is bleeding from a stab wound to his  abdomen. The on-call surgeon says that he needs urgent  surgery if he is to survive. Is consent from the next of kin  needed before he is taken to the operating theatre?   In the UK, urgent treatment may be given to an adult  who is incapable of giving consent. Similarly, in an  emergency, children may also receive treatment without  parental consent. This is referred to as the 'doctrine of  necessity' and prior to the MCA 2005 would have been  the sole legal basis on which, e.g. an unconscious adult  might be treated in the emergency department. Treat-  ment must be in the patient's best interests. It is consid-  ered best practice, where this is possible, to consult  relatives and next of kin as to what the patient would  want, and what would be in the patient's best interests.  Only someone who holds a Lasting Power of Attorney  (LPA) for medical decisions or has been appointed as  an IMCA may consent or refuse treatment on behalf  of an adult. They may only make decisions in-line with  the patient's best interests and enduring prior wishes.  Procedures which are of debatable benefit (such as ster-  ilization) or withdrawal of life-sustaining treatment  should involve someone who is legally responsible for  making decisions on the patient's behalf - where there  is disagreement, a court declaration may be required as  to the lawfulness of the proposed treatment.   One of the ways in which institutional healthcare set-  tings can interfere with the autonomy of a patient is  by deprivation of liberty (Fig. 3.1). Specific safeguards  against the deprivation of liberty were introduced into  the Mental Capacity Act by the Mental Health Act  2007 (remember that an Act of Parliament may only  be amended or repealed by another Act of Parliament,  see Chapter 1). There are a number of situations which  should raise the possibility that there is a deprivation of  liberty in the care environment (adapted from Brindle &  Branton 2010):    • Restraint is used, including sedation, to admit a per-  son to an institution where that person is resisting  admission   • Staff exercise complete and effective control over the  care and movement of a person for a significant  period   • A decision has been taken by the institution that the  person will not be released into the care of others, or  permitted to live elsewhere, unless the staff in the  institution consider it is appropriate   • A request by carers for a person to be discharged to  their care is refused   • The person is unable to maintain social contacts  because of restrictions placed on their access to other  people   • The person loses autonomy because they are under  continuous supervision and control.   The use of sedation in an emergency situation to man-  age an individual's disturbed behaviour would proba-  bly not in itself constitute a deprivation of their  liberty. However, it may be, if: it is used to prevent a  patient's persistent attempts at leaving a hospital or care  home; it is used in a non-emergency situation; or the  purpose of the sedation is to protect people other than  the individual concerned.   • On account of physical and mental immaturity as  well as social (e.g. financial) inadequacy, children  may be unable to look after their own interests  and needs.   • The consequences of events in childhood (whether  physical or psychological) can last a lifetime.   Although children in general are considered to have less  autonomy than adults, this is transient. Children mature  into adults who have their own interests and preferences.  In order to preserve their 'open future', there is an argu-  ment that parents have a duty, as far as possible, to ensure  that children reach adulthood with all their options  intact (Rogers & Braunack-Mayer 2010: 154-155).   An argument against the routine circumcision of male  children is that this removes the option for personal  choice when the child reaches adulthood. The operation   Anyone who the supervisory body is satisfied is  eligible to be a best interests assessor (approved  mental health practitioner or other suitably  trained professional)   Would a DOL authorization conflict with another  existing decision-making authority, e.g. is there  a valid advance decision applicable to some or  all of the treatment in question? Is there conflict  with the valid decision of a donee or court-  appointed deputy?   Anyone who the supervisory body is satisfied is  eligible to be a best interests assessor (approved  mental health practitioner or other suitably  trained professional)   Does the relevant person lack the appropriate  decision-making capacity on whether they  should be accommodated in the hospital or care  home or receive the recommended treatment?   Registered medical practitioner approved under  Section 12 of the Mental Health Act or with  appropriate training and experience in diagnosis  or treatment of mental disorder. Or best interests  assessor (approved mental health practitioner  or other appropriately trained professional)   Does the relevant person have a mental disorder  within the meaning of the Mental Health Act  1983? How will the mental health of the person  being assessed likely be affected by being  deprived of their liberty? Must report their  conclusions to the best interests assessor   Registered medical practitioner approved under  Section 12 of the Mental Health Act or with  special experience in diagnosis or treatment of  mental disorder, e.g. GP with special interest.  Must have completed appropriate training   Is the relevant person not eligible for DOL  authorization because: they are detained under the  Mental Health Act 1983 or the authorization  would be inconsistent with an obligation placed on  them under that Act. If proposed authorization  relates to treatment of mental disorder then  whether they meet criteria for detention needs  to be considered   Approved mental health practitioner or  registered medical practitioner approved under  Section 12 of the Mental Health Act   To establish whether deprivation of liberty is  occurring or going to occur and if it is in the best  interests of the relevant person. Is it necessary to  prevent harm and is it a proportionate response to  the likelihood and seriousness of that harm?   Approved mental health practitioner or other  professional such as social worker, nurse,  occupational therapist or psychologist with  appropriate level of experience and  competencies    is not reversible and carries immediate risks such as pain,  bleeding and infection. The counter argument is that this  may allow a child to more fully engage in a particular  communities, and their options in this regard may be  increased.   It often assumed that young children are incapable of  deciding the best course of action. So parents usually  make decisions for their children, and this is supported  by the law in most countries. This is because:   • society expects that parents will act in their children's  best interests as part of the parenting role - granting  parents power ensures that children's interests are  protected   • there may be some shared values in families and  that children's values and beliefs may be similar  to those of their parents. Decisions made by    parents are likely to take account of these values  and beliefs   • parents are the ones (apart from the children them-  selves) most affected by decisions made about their  children - and this gives them a moral stake in those  decisions.   From the late 1960s to the early 1990s, the rights of chil-  dren have been made more explicit both in the UK and  internationally. The 1989 United Nations Convention  on the Rights of the Child, ratified by the UK in 1991,  creates positive obligations on states to ensure that  resources and services are made available to serve chil-  dren's needs and interests. It mandates every child's    right to dignity, respect and the opportunity to partici-  pate in decision-making (De Zulueta 2010).   1 . It asserts that the welfare of the child is of paramount  importance in court decisions about the future of the  child.   2. It outlines who has parental responsibility for a  child and how to make decisions where those with  parental responsibility disagree.   3. It outlines the arrangements that can be made in  order to protect a child from harm or to provide care  in the event of those with parental responsibility  being unable to.   4. The Act provides a 'child welfare checklist' in order  to guide the decisions made by the courts. In making  decisions, courts need to consider:   • the wishes and feelings of the child concerned  (dependent on age and understanding)   • the age, sex, background and any other relevant  characteristic of the child   • any harm this child has suffered or is at risk of  suffering   • the capability of each parent in meeting the needs  of the child.   The Children Act 1989 (s.105) defines a child as any per-  son under 18 years old. Under Section 8 of the Family  Law Reform Act 1969, minors of 16 and 17 years are  presumed to be able to consent to their own treatment.  Those with parental responsibility can consent to med-  ical treatment on behalf of a child - regardless of the  child's consent. The ability of children to consent to  their own treatment is discussed below. For young chil-  dren and older children who are unable to consent to  treatment, consent is usually provided by someone with  parental responsibility (Fig. 3.2).   Knowing who has parental responsibility is impor-  tant for healthcare professionals, as it is only these   Explanation-, appropriate for use with children of any  age - talking in a soothing manner may help to reassure  any child regardless of their verbal ability   Assent : should be sought from any child that can  understand the purpose of treatment:   7- 10-year-olds may begin to understand the need  for treatment, but not necessarily why it may be  painful   10-12-year-olds may start to take a more mature  approach to treatment-understanding that  investigations may be painful, but beneficial in the  long run   14-16-year-olds is the age group to which Cillick  competence is most likely to apply  16+ capacity to consent is presumed   Note: Where there is fluctuating capacity in a child, the child is  assessed with respect to their capacity when they are at the  least lucid, i.e. on bad days. This is inconsistent with the approach  to adults where it is the capacity at the time of the act that is  relevant.    individuals who can consent to non-urgent medical  assessment and treatment if the child is unable to do  so. Although a number of people may have parental  responsibility, a doctor requires consent from only  one individual (Fig. 3.3).   The authoritative case in relation the ability of children  to consent to medical advice and treatment is the Gillick  case. This case clarified two important points of law,  which are often confused:   1 . It clarified the idea that children under the age of 1 6  who demonstrate sufficient maturity can consent to  medical advice and treatment, and have their confi-  dentiality respected. This is what is referred to as  'Gillick competence'.   2. It clarified the idea that in the specific circumstance  of contraceptive and sexual health advice doctors  who provided treatment or advice to Gillick-  competent child would not be found guilty of being  an accessory to a sexual offence on the basis that the  legal age of consent for sexual intercourse in the UK  is 16. The Gillick judgement has been incorporated  into the 2003 Sexual Offences Act.   In the Gillick case, Lord Fraser produced guidelines  for clinicians who provide contraceptive advice or   The father - if currently married to the mother or was  married to the mother at the time of insemination or at  birth   If not married to the mother at the time of insemination  or birth, the father can acquire parental responsibility by:  marrying the mother   a written agreement with the mother (if not married  to her)  a court order   by registering as the father (with the mother) on the  birth certificate   Adoptive parents - in this case, the original parents  cease to have parental responsibility   Guardians - parents may appoint a person(s) to be  responsible for their children after their death   A person obtaining a residence order (by which a child  is placed in their care - often with grandparents or  other relatives) will also usually obtain parental  responsibility. The original parents do not lose parental  responsibility   An applicant granted an emergency protection order  (for the duration of the order)   Note; Parental responsibility, once acquired, remains even after  parents divorce and step-parents do not automatically acquire  parental responsibility.    treatment to children under the age of 16. The clinician  must be satisfied that:   • the young person cannot be persuaded to inform  their parents   • the young person is likely to begin, or to continue  having, sexual intercourse even without contracep-  tion   • unless the young person receives contraception,  their physical or mental health, or both, are likely  to suffer   • the young person's best interests require them to  receive contraceptive advice or treatment with or  without parental consent.   The Gillick case arose in response to a Department of  Health and Social Security circular that advocated the  preservation of confidentiality when the patient was  requesting contraception, even if the patient was less  than 1 6 years old.    Mrs Gillick had 1 0 children, anumberof whom were  girls under the age of 1 6, and went to court to challenge  the reasonableness of the Health Authority's ability to  give contraceptive advice to her children without her  knowledge or consent. The case went all the way to  the House of Lords, which finally decided against  Mrs Gillick. It was asserted that:   • the parental right to 'control a child' existed for the  benefit of the child not the parent; it was thus only  justified in the best interests of the child. In terms of  the law in the UK at least, children are not the prop-  erty of their parents   • the parental right should yield to the child's right  when the child reaches a sufficient understanding  and intelligence   • the sufficient understanding and intelligence may be  present in a child under the age of 1 6 years; it is up to  the doctor to assess whether the child is capable of  understanding the medical, social and moral aspects  of the proposed treatment. In effect, this applies an  adult test of capacity to children (see above).   This judgement allows only mature children under the  age of 1 6 to consent to medical treatment.   Remember: Gillick competence may apply to any child  under the age of 16 who demonstrates sufficient  maturity in agreeing to any type of medical treatment.  The Fraser guidelines refer to contraceptive treatment  and advice and protect the clinician from being an  accessory to a crime under the Sexual Offences  Act 2003.   If a person has the capacity to consent to treatment, then  it follows logically that they should also be able to refuse  treatment (Fig. 3.4). This can be problematic when ado-  lescents refuse necessary or life-saving treatment.   Legal action was withdrawn in Hannah Jones' case in  2008 and the case was not 'tested' in the courts. Accord-  ing to Johnston (2009), the courts have tended to con-  clude that a young person who makes an 'unwise'  decision is thereby not competent to make it. Compe-  tence is assessed on a sliding scale in proportion to  the importance or seriousness of the outcome and the  ratio of risks-to-benefits of the treatment. Court deci-  sions demonstrate that a high standard is required for  a minor to be considered competent to refuse. In the  case of Re E [1993], for example, a 16-year-old who  refused blood transfusions on the basis of his religious   In 2008, Hannah Jones, aged 13, came to public attention in the UK when she refused to consent to a heart transplant.  The operation carried significant risks and a recurrence of her leukaemia could be prompted by the postoperative  medication. Hannah convinced a child protection officer, called in by her local primary care trust, that she was able to  make an informed decision having endured six operations in the previous 2 years. Legal action was withdrawn and her  refusal was respected. Hannah was assessed to be competent to make the decision, even though she was only 13 years  old. Her understanding of the treatment was enhanced by her experience of illness and this had more impact than her age  alone. Although the heart transplant could perhaps be considered a 'one-off', recognition was given to the fact that  ongoing postoperative medication was needed, which could have adverse side-effects. While the treatment was  potentially life-saving, it also had risks and the long-term effectiveness was not certain. Most important was the issue of  the practicality of enforcing treatment against the wishes of a competent young person, who was supported by her  parents.   Controversially, case law in the 1990s (Re A [1992]  3 Med LR 30 and Re W [1993]) has shown that in some  circumstances, a refusal by a competent young person  can be overridden and treatment can be authorized by  a parent or the court. In the case of Re W [1993], this  appeared to be on the basis that the state has a duty  to see that children survive to the age of 18. Following  the 1998 Human Rights Act however, a failure to respect  refusal by a Gillick-competent minor could be in breach  of Articles 2, 3, 5 and 8 (see Chapter 1).   As far as the law is concerned, the interests of the child  are 'paramount' and this principle is enshrined in legis-  lation. Because of their relative physical and emotional  vulnerability, like other vulnerable groups (e.g. the very  old and sick and people with diminished mental capac-  ity), children are at risk of abuse. Child abuse includes:   Medical professionals may become involved with cases  of child abuse as a result of:   • a member of the public reporting their suspicions  about abuse   • being asked by the local authority to investigate a  child for evidence of abuse.   If abuse is suspected, a senior clinician should be consulted,  preferably one with expertise in child abuse. Making alle-  gations or reporting the suspicions to other agencies can  be a difficult decision. This is because an incorrect allega-  tion of abuse can be devastating for families and inappro-  priate examinations can be devastating for the child.  Collier et al (2006) list three 'dangerous' ethical questions:    1 . Could proving of abuse be more destructive of abuse  itself?   2. Is it better for a child to be loved and battered than  neither?   3. Is help from extended family better than help from  the law?   Collier et al (2006) remind us that even if the answer to  the above questions is Yes, society places a (legal) duty  to report abuse. The first aim is to avoid a child's death  or significant harm.   The responsibility for investigating abuse lies primar-  ily with the social services. The welfare of the child is of  paramount importance.   If you are worried that a child is at significant risk of  harm, what should you do?   • Clearly communicate your concerns with appropri-  ate members of your healthcare team and document  them clearly.   • Call the appropriate child protection worker. Social  services and a member of the child protection team  can be contacted 24 hours a day.   • Be familiar with your local guidelines and your duties  as a healthcare worker (www.everychildmatters.  gov.uk).   • Hospital admission may allow a full assessment and  provide a protective environment.   • If necessary (e.g. if parents refuse to have the child  assessed), social services may instigate an emergency  protection order (see below) or the police can  remove a child into police protection.   Remember : As far as the law is concerned, the safety  of a child is more important than other considerations  such as confidentiality.   There are two key sections of the Children Act 1989  (2004), which are relevant to child safeguarding:   • Section 47: Children at risk of significant harm  (allows parents to be overruled, e.g. in cases of child  abuse)   • Section 1 7 : Children in need of assistance to flourish  (parental consent is required for social services to  become involved).   The Children Act 1989 gives power to the courts to issue  a number of different orders that aim to safeguard  children.   This addresses a specific question that is in dispute. The  courts will resolve the issue by saying what they think  should be done. For example, if parents and doctors dis-  agree about the treatment a child should receive, the  courts will consider the question and decide one way  or the other (usually in favour of the doctors).   The courts may make this order to place a child at  risk of harm, or suffering actual harm, in the care of  a local authority and to give parental authority to the  local authority.   This is issued where there is an urgent need to move a  child at risk to a safe place.   This allows a court to have a child, believed to be at risk,  assessed by a doctor for evidence of abuse. However, if  the child is of sufficient understanding, the child can  refuse to submit to any such medical or psychiatric  assessment.   The Sexual Offences Act 2003 clarifies what is a sexual  offence against a child, especially what may be classed  as a sexual offence. The Forced Marriages Act 2007  protects children, among others, from becoming  coerced into marriage. The Education Act 1981 pro-  vides legal guidance on education standards and  provision of assistance for children with special educa-  tional needs.    In some older patients who may have mental or physi-  cal frailty, there may be numerous ethical and legal  issues to consider. Coni et al (2004) summarize legal  and ethical issues associated with age and aging:   • Driving in later life (legal issues, balancing public  safety against the benefit to the patient)   • Mental capacity for treatment (see above) and  research (see Ch. 2)   • Ethical issues relating to life-supporting interven-  tions (see Ch. 4)   • Death Certification and when to refer to the Coroner  (see Ch. 10).   Most of the above list is covered elsewhere in this book.  We will briefly examine driving, testamentary capacity,  age discrimination and elder abuse. Confidentiality is  also a perennial issue, because whether a person is com-  petent or incompetent, there may be concerns about  how much personal information is shared with carers.   UK law obliges everyone to surrender their driving  licence at the age of 70. A new licence is then issued,  which must be renewed every 3 years and requires a writ-  ten declaration of good health. Insurance companies  may insist on a physical examination and the Driver's  Vehicle Licensing Authority (DVLA) must be advised  by the patient of changes in health status. Certain condi-  tions will render someone unfit to drive. These include:   • Any episodic impairment of consciousness (e.g. epi-  lepsy or poorly controlled diabetes)   • Cardiac arrhythmias and angina (even after a myo-  cardial infarct or stroke with good recovery, a tran-  sient ischaemic attack or pacemaker insertion  means that a person needs to avoid driving for at  least 1 month).   1. A patient refuses to accept advice to stop driving in  spite of a condition which makes them unfit to drive.    2. A patient has some cognitive impairment, and while  their condition is not clearly on the DVLA's list of  conditions which proscribe driving, the doctor is  convinced that they are unsafe on the road.   In the first instance, the doctor has a clear legal obliga-  tion to inform the DVLA, in the event that the patient  really cannot be persuaded - and they should let the  patient know that they plan to do this. In the second  instance. Coni et al (2004) recommend involving rele-  vant family members or seeking advice from the DVLA  or a professional driving instructor. In both circum-  stances, doctors need to consider why an older person  is keen to continue driving and whether there is a com-  promise or solution, e.g.:   • Geographical or social isolation (is there any other  form of transport available?)   • Loss of independence and status (e.g. could the  patient get their weekly shopping delivered?).   The GMC has produced supplementary guidance on  confidentiality and disclosure of lack of fitness to drive  to the DVLA. This may be accessed at: http://www.gmc-  uk.org/Confidentiality_reporting_concerns_DVLA_20 1  09.pdf_27|49|42| 14.pdf   Testamentary capacity is the mental capacity required in  order to draw up (or revoke) a will or lasting power of  attorney. In order to do any of the above, a person needs  to understand the nature of the act, have a reasonable  understanding of their assets and be aware of who  might have a claim on them, and be free from delusions  which might distort their judgement. The Mental  Capacity Act (see above) has clarified this area, espe-  cially with regard to healthcare decisions. The Mental  Capacity Act has been discussed earlier.   Age discrimination, according to Coni et al (2004),  may be based on three rational and humane  misconceptions:   1 . Older people are denied access to high-tech medical  interventions on the basis that they do much less  well than younger people. Coni et al argue that there  is clinical evidence of the benefits of many such  interventions for older patients, and to use age to  discriminate rather than an appropriate medical or  mental-state assessment is unjust.   2. It is sometimes argued that the potential quantity  and quality of life is too low to justify the procedure  under consideration. The counter argument is that  life-expectancies for a healthy older person may be  surprisingly good, and that quality of life is best  assessed by the person living it. Coni et al (2004)    add that doctors persistently underestimate the  quality of life of older patients. Older people (like  disabled people) may be discriminated against by  measures like quality-adjusted life-years (see Chs 5  and 6).   3. Making high-tech interventions and healthcare  resources available to older patients denies them  to younger people. Coni et al (2004) argue that  resource allocation on the population level should  be the responsibility of elected politicians and not  doctors (this idea is explored further in Chapter 5).  Another argument is that today's younger person  will be tomorrow's older person.   • Neglect (e.g. withholding basic needs such as food  and drink)   • Financial (e.g. taking away an older person's assets in  a way which does not benefit them)   Risk factors for elder abuse may relate to the victim, the  carer or be shared by both:   • The carer: Drug or alcohol misuse; lifestyle adversely  affected by caring role; divided loyalties (e.g. older  relative and young child); physical or mental health  problems; role reversal (e.g. ageing child and aged  parent) and isolation (real or perceived)   • Shared: Poor housing; poor long-term relationship.  Warning signs may be difficult to substantiate and may  include:   • Bruises or burns in unusual areas or shaped like an  object   • Difficulty gaining access to the patient or refusal of  necessary support services by the patient or carer.   Elder abuse can be an ethically difficult area for clini-  cians. On the one hand, a competent older person  has the right to choose to remain in a vulnerable setting.  On the other hand, social services and/or the police may  need to be involved if a doctor suspects that a patient's  autonomy is compromised by reduced capacity or  coercion and elder abuse is suspected.    The question of what is mental illness is itself deeply  problematic. As with other problematic areas in medical  ethics, it is a question of what we believe to be true  rather than one of which acts are right or wrong.  For example, what we believe to be mental illness can  determine whether or not someone has their liberty  restricted or compulsory treatment given to them:   • The boundaries of mental illness have changed over  time: In 1851, 'drapetomania' was described as an  illness from which negro slaves suffered; it mani-  fested as a tendency to run away from their masters.  Homosexuality was listed as a mental disorder in the  US Diagnostic and Statistical Manual of Mental Dis-  orders, until 1973. Neither drapetomania or homo-  sexuality are now considered to be psychiatric  disorders in Western medicine.   • Those who maintain mental illness is a myth, argue that  people with such 'problems' - while they should receive  treatment if they so wish - should not be forced to have  treatment as they do not recognize mental illness as a  'real' disease. The most prominent advocate of this argu-  ment, Thomas Szasz, considered mental disorders to be  'problems with living' - dependent on the environment  or individual reaction to stressors - without a biological  cause. However, it has become progressively more dif-  ficult to maintain the assertion that mental illness is a  myth, given what is now known about the biological  correlates of illnesses such as depression and schizo-  phrenia and their responsiveness to psychotropic drugs.   • A particularly problematic aspect of mental illness, is  that it is arguably more value-laden and contains  more issues of morality than physical illness. Mental  illness excuses behaviours that might be considered  antisocial, immoral or criminal. Consequently, many  societies have sought psychiatric opinion to inform  decisions about who should be punished, who  should be subjected to compulsory medical treat-  ment, and who is so disabled by their beliefs, percep-  tions or behaviours that they require assistance in  daily living. A danger associated with this deference  to psychiatry is that, in the twentieth century, partic-  ular political regimes used psychiatry to suppress  dissent and to imprison or kill those who did not  fit with their vision of a perfect society.   Some conditions render people out of touch with reality  and cause suffering to the extent that they are the concern  of the medical specialty of psychiatry. Most Western    countries have special legislation to allow patients to  be detained and treated against their will. Such legisla-  tion, according to Hope (2004) addresses two issues:   1. When can treatment be imposed on patients with a  mental illness for their own sake, in situations where  they are refusing treatment?   2. How can society be protected from dangerous peo-  ple with mental illnesses?   So, how can society be protected from dangerous people  with mental illnesses? Hope argues that mental health  legislation discriminates against those with mental ill-  ness. Mental illness does not generally make people  dangerous to others. Mentally disordered people, if they  are considered to be dangerous to others (or to them-  selves), may be kept in a secure place for an indefinite  period. Those without a mental disorder, however dan-  gerous they may be, cannot be kept in a secure place if  they have either not yet committed a crime, or if they  have committed a crime and have served their prison  sentence (Hope 2004, Hope et al 2008). This criticism  appears weaker in countries where similarly dangerous  criminals receive less humane treatment or are executed  (historically this was also the case in the UK) .   Why should treatment be imposed on patients with a  mental illness for their own sake, in situations where  they are refusing treatment?   • If we say that someone is mentally ill, we imply that  they are not in control of their thinking; thus patient  autonomy appears less stable as a foundation from  which to base ethical reasoning. However, strange  behaviour is not conclusive evidence of incompetence  or necessarily a sign or symptom of mental illness.   • Powerful psychopharmacological treatment and  (much more rarely) surgical treatments such as deep  brain stimulation can be used to change the personal-  ity, and perhaps the identity of patients. This can raise  issues of whether this is a benefit. Furthermore, treat-  ments such as deep brain stimulation may ease distress  but render patients less autonomous - is this right?   • Others who accept mental illness as a real phenom-  enon argue that psychiatric treatment is only effec-  tive when the patient consents to treatment. This  view holds that coercion is never justified in the  treatment of the mentally ill.   • this ignores the effectiveness of coercion in some situ-  ations. An analogy could be drawn with an ill child  who refuses treatment because he fears needles. Men-  tal illness can reduce some individuals to a similar  child-like state, where long-term goals are not consid-  ered. In addition, experience shows that many patients  who are coerced into treatment are grateful for such  treatment after recovery, even if they refused treatment  at the time (adapted from Peele & Chodoff 1999).    Historically, the mentally ill have been a vulnerable  section of society. A core element of psychiatric ethics  is about not abusing this vulnerability. Psychological  therapy represents a relationship of unequal power  between doctor and patient, by encouraging patients  to reveal more highly personal and intimate details  about their life. Even today, media portrayal of the  mentally ill is predominantly negative, leading to  stigma and increased isolation of people with mental  illness. It seems unlikely that the stigma of mental ill-  ness can be entirely eradicated (although this does not  mean we shouldn't try).   Remember: People with mental illness may be  vulnerable to harm or coercion. A key element of  psychiatric ethics is the prevention of this vulnerability  being exploited.    Psychiatrists have been portrayed as 'double agents'. On  the one hand, they aim to help the distressed patient, and  on the other, they are responsible for informing court  decisions on who is punished and who is treated, who  is told to work and who receives benefits. Even patient  confidentiality may cause difficulties. Such a situation  was addressed in W v. Egdell [1989], In the case of Egdell  (an English case and therefore binding on subsequent  decisions) a psychiatrist voluntarily disclosed to the  authorities, a report on a person with paranoid schizo-  phrenia, who had been convicted of manslaughter but  had requested the report in order to seek less severe  detention. Public interest in disclosure that W was dan-  gerous was held to outweigh W's private interests.   In England and Wales, the major piece of mental health  legislation is the Mental Health Act (MHA) 1983  (amended 2007) and in Scotland, it is the Mental Health  (Care and Treatment) (Scodand) Act 2003. These Acts  enable the state to enforce the assessment and treatment  of patients with mental disorders with powers that go  beyond those of the 'common law'. They also provide  mechanisms to ensure that these powers are not abused.   The MHA primarily deals with compulsory assess-  ments and, if necessary, treatment or detentions of  patients with a mental health disorder.   There are two main justifications for the compulsory  detention of people:   2. To protect patients from harming others.  Compulsory admission is governed by two sections of  the MHA:    • Section 2 allows for admission for the purpose of  assessment - it cannot exceed 28 days. Patients can  be admitted if:    Essential Update: The 1983 Mental Health Act had four  categories of mental disorder which might come under  the Act: mental illness, severe mental impairment,  mental impairment and psychopathic disorder. These  categories were removed from the legislation when the  2007 Mental Health Act came into force. Only those  who sufferfrom a mental disorder are covered by the act-  treatment of people with learning disability and mental  impairment (such as from dementia or a stroke) is now  covered by the 2005 Mental Capacity Act.    • the patient is 'suffering from mental disorder of a  nature or degree that warrants the detention of  the patient'   • the patient ought to be so detained in the inter-  ests of his own health or safety or with a view  to the protection of other persons   • admission is supported by two registered medical  practitioners (often the psychiatrist and the  patient's GP) and an approved social worker or  relative.   • Section 3 allows for admission for the purpose of  treatment - which in the first instance should not  be for longer than 6 months (this can be extended  after a review tribunal first for another 6 months,  then 3-yearly extensions are possible - someone  may be detained under Section 3 for life). Patients  can be detained if:   • the patient is suffering from a mental disorder  of 'a nature or degree which makes it appropri-  ate for him to receive medical treatment in a  hospital'   • in the case of psychopathic disorder or mental  impairment, 'appropriate treatment is available';  this has replaced the 'treatability requirement';  patients should not be detained simply to protect  themselves or others, rather there must be some  treatment available. This has generated some dis-  cussion as to whether it allows people with psy-  chopathic disorders to be detained because  treatments are available, regardless of whether  they themselves respond to treatment - which  would amount in effect to detaining someone  purely for protection (Hope et al 2008)   • it is for the protection of the health and safety of  the patient or for the protection of others   • admission is supported by two registered medical  practitioners (often the psychiatrist and the  patient's GP) and an approved social worker or  relative.    So why do we need a Mental Health Act  in addition to a Mental Capacity Act?   Surely if someone's capacity (see above) is affected by  physical or mental illness, they should be treated  in their best interests? Why are two laws needed in  the UK?   When someone is not being detained for the assess-  ment or treatment of a mental disorder, the preferred leg-  islation is generally the Mental Capacity Act. Also, where  there is a requirement for treatment of someone (who  lacks capacity) for a physical disorder, the Mental Capac-  ity Act should prevail . There will, however, be individuals  who lack capacity and require treatment for mental dis-  order and therefore, may be subject to the provisions of  either of the Acts.   Circumstances where the Mental Health Act may be  required to detain and treat somebody who lacks capac-  ity to consent to treatment, rather than use the Mental  Capacity Act are as follows (adapted from Brindle &  Branton 2010):   • The relevant person is under 18 (the Children Act  1989 may be appropriate)   • It is not possible to give the person the care or treat-  ment they need without depriving them of their  liberty   • Treatment cannot be given under the Mental Capac-  ity Act because the person has made a valid and  applicable advance decision to refuse an essential  part of treatment   • The treatment would conflict with a decision of the  relevant person who has lasting power of attorney,  court-appointed deputy or a court ruling   • The person may need to be restrained in a way that is  not allowed under the Mental Capacity Act   • It is not possible to assess or treat the person safely or  effectively without treatment being compulsory, per-  haps because the person is expected to regain capac-  ity to consent and then to refuse to give it   • There is some other reason why the person might  not get treatment and they or somebody else might  suffer harm as a result.   • the MCA 2005 aims primarily to ensure the best  interests and maximize the liberty of people without  capacity   • the MTIA 1983 (2007) primarily is for the purpose of  compulsory assessment and treatment of people  who (because of their mental disorder) may be a  danger to themselves or others.   • What is the difference between invalid consent and  obtaining consent in a negligent manner?   • What are the five main principles of the Mental  Capacity Act?   • What key ethical issues arise in the treatment of  children?   • What does the Children Act 1989 say about the  welfare of the child?   • What ethical and legal issues may be associated with  the medical care of the older patient?   • What justifications are there for the compulsory  detention of the mentally ill?   • What is the purpose of Section 2 of the Mental  Health Act?   • What are the key differences between the Mental  Capacity Act and the Mental Health Act?   • We have discussed issues linked to care of the elderly,  children and people with mental disorder - can you  think of any other vulnerable group in society and the  ethical and issues associated with this group?   Brindle, N„ Branton, T., 2010. Interface between the Mental  Health Act and Mental Capacity Act: deprivation of  liberty safeguards. Advances in Psychiatric Treatment 16,  430-437.   Collier, J., Longmore, M., Brinsden, M., 2006. Non-accidental  injury. In: Oxford Handbook of Clinical Specialties, seventh  ed. Oxford University Press, Oxford.   Coni, N., Nicholl, C., Webster, S., et at, 2004. Legal and ethical  aspects of medical care of elderly people. In: Lecture Notes  on Geriatric Medicine, sixth ed. Blackwell, Oxford.    De Zulueta, P., 2010. Choosing for and with children: consent,  assent, and working with children in the primary care  setting. London: Journal of Primary Care 3, 12-18.   Garside, J.P., 2006. Consent. In: Law for doctors: principles and  practicalities, third ed. Royal Society of Medicine Press,  London, pp. 49-60.   Herring, f., 2010. Consent to treatment. In: Law Express:  Medical Law, second ed. Pearson Education, Harlow.   Hope, T„ Savulescu, ]., Hendrick, J., 2008. Children. In:  Medical Ethics and Law: The Core Curriculum, second ed.  Churchill Livingstone Elsevier, Edinburgh.   Johnston, C., 2009. Overriding competent medical treatment  refusal by adolescents: when 'No', means 'No'. Arch. Dis.  Child. 94, 487-491.   Johnston, C., Holt, G., 2006. The legal and ethical implications  of therapeutic privilege - is it ever justified to withhold  treatment information from a competent patient? Clinical  Ethics 1, 146-151.   Peele, R., Chodoff, P., 1999. The ethics of involuntary  treatment and deinstitutionalization. In: Bloch, S.,   Chodoff, P„ Green, S.A. (Eds.), Psychiatric Ethics, third ed.  Oxford University Press, Oxford, pp. 430-431.   Re W (A Minor) (Medical Treatment: Court's Jurisdiction), 1993  Fam. 64.   Rogers, W., Braunack-Mayer, A., 2010. Why do children raise  particular ethical issues? In: Practical Ethics for General  Practice. Oxford University Press, Oxford, pp. 154-155.   Sidaway v. Board of Governors of the Bethlem Royal Hospital and the  Maudsley Hospital 1985 AC 871.   Brazier, M., 1992. Medicine, Patients and the Law, second ed.  Penguin, Harmondsworth.   Grubb, A., 1997. Consent. In: Boyd, K„ Higgs, R., Pinching, A.J.  (Eds.), The New Dictionary of Medical Ethics, BMJ  Publishing, London, pp. 56-58.   Hoggett, B., 1996. Mental Health Law, fourth ed. Sweet and  Maxwell, London.   Medical ethics is often identified with issues at the  beginning and at the end of human life. This chapter  explores issues around the 'beginning' of life, such as  contraception, sterilization, abortion and reproductive  technologies. The second part of the chapter deals with  end-of-life decisions, euthanasia, the definition of death  and organ transplantation.    As far as the law in the UK is concerned, this is any treat-  ment which prevents fertilization of the human egg or  implantation of the fertilized egg in the womb. How-  ever this definition causes ethical difficulty for people  who believe that human life begins at conception (see  below). The National Health Service Act 1977 requires  the Secretary of State for Health to ensure that reason-  able requirements for treatment and advice on contra-  ceptive issues are met (see Chapter 1 for brief look at  the statutory basis of Medicine in the UK).   Ethical objections to types of contraception tend to  fall into two categories: a) One argument goes that con-  traception is wrong because it interferes with a natural  process (fertility) and promotes promiscuity (also seen  as wrong) by breaking the link between sex and repro-  duction. b) The other main (consequentialist) argu-  ment is that many forms of contraception fail to  protect the user against sexually transmitted diseases  and other consequences of sexual intercourse.   Contrasting arguments may be deontological, e.g.  that at the ecological level humankind has a duty to  contain its population so as not to exceed available  resources. Utilitarian arguments may include the idea  that at an individual level prospective parents may wish  to limit their family to size which they can support.  A utilitarian viewpoint might consider that undesired  pregnancy is a 'harm' and that therefore it is a benefit  that sex can be enjoyed without pregnancy as a  consequence.   There is a third key issue regarding the provision of  contraception and contraceptive advice: Is the person  using contraception in a position to give informed con-  sent to a) the contraception, b) sexual intercourse? This  is an issue regarding capacity rather than contraception  and is considered in Chapter 3.   In 2002 the Society for the Protection of Unborn Chil-  dren (SPUC) challenged the legality of government reg-  ulations permitting the sale of the 'morning after pill'  without a prescription. The 'morning after pill' can be  given up to seventy-two hours after unprotected sexual  intercourse and its contraceptive action is in preventing  the successful implantation of an embryo in the womb  lining. The SPUC claimed that the medication caused a  miscarriage or abortion, and therefore could only be  used lawfully if the criteria in the Abortion Act 1967  (see below) were met, such as the requirement for signa-  ture by two doctors. The government argued that the  medication was a contraceptive. The judge ruled that  a miscarriage could only occur once a fertilized embryo  had implanted in the womb, and that there would be  harmful social consequences if emergency contracep-  tion had to be subject to the same criteria as abortion  in the UK. Therefore the 'morning after pill' can be pro-  vided without a medical prescription, and is often  referred to as 'emergency contraception'. In effect the  case also underlines the legal principle that pregnancy  begins at implantation rather than conception ( R  (Smeaton on behalf of SPUC) v The Secretary of State  etal [2002] 2 FCR 193).   Remember: According to UK case law, pregnancy  begins when the fertilized embryo is implanted in the  womb. This means that the Abortion Act 1967  (amended 1990) does not apply to drugs which  prevent implantation of the fertilized embryo.    Sterilization is a medical treatment intended to make  a person permanently infertile. While a person may have  capacity, and autonomously decide to be sterilized, the  decision will also affect that person's partner - especially  if they want to have children. Sterilization can be  ethically problematic:    • Some religious groups consider sterilization to be a  form of bodily mutilation that goes against the nat-  ural function of humans to reproduce (similar to the  argument against contraception above).   • Some people who are sterilized may change their  mind, and regret the decision. Fully informed con-  sent is therefore crucial.   • Sterilizing particular people in society such as the  mentally incompetent, people with a history of sub-  stance misuse, or ethnic minorities, can be criticized  as a form of unacceptable eugenics. Coercing any  type of person to be sterilized is generally seen as  unacceptable. However, do incentives (e.g. giving  substance misusers a one-off cash payment on the  condition that they are sterilized) amount to a kind  of coercion? If the incentive is something a person  desperately needs, then this is arguably coercive.   Some of the issues surrounding sterilization are illus-  trated by cases of 'failed sterilization', which have gone  to court. These are considered as 'negligence' cases (see  Ch. 1) in the civil courts. The key issues here are:   • can conception (as a result of failed contraception)  be considered to be a harm?   As with other medical negligence cases, information given  must be in accordance with a responsible body of professional  practice. In the case of sterilization, this means telling the  patient both that 1) the operation is permanent and may  be non-reversible and 2) there is a failure rate of the oper-  ation, i.e. while sterilization is effective, it is not an absolute  guarantee of never conceiving.   Failure to give the above information would be con-  sidered a 'breach of duty' to warn about a foreseeable  risk of the woman becoming pregnant. While courts  are reluctant to award damages in the case of a failed  sterilization (or failed abortion) resulting in the birth  of a healthy child for the living costs of the child, they  may more readily consider the discomfort and financial  loss resulting from either a subsequent abortion or preg-  nancy and delivery. However, courts are much more  prepared to award damages towards the upkeep and  treatment of handicapped children born as a result of  failed sterilization and abortion. They are sometimes  referred to as 'wrongful conception' and 'wrongful birth'  cases (Kennedy & Grubb 2000).   Remember: A failed sterilization operation on a man  (if negligence is alleged) may result in a case being  brought to court by the woman who is his sexual partner.   As discussed in Chapter 3, lawful treatment for a men-  tally incompetent adult can only be given if what is  proposed is in their 'best interests'. Consequently, ster-  ilization for 'best interests' appears more likely to be  considered 'on behalf of' mentally incompetent women  than men. This is because pregnancy and indeed men-  struation have been seen as potential harms for women  with severe mental incapacity. By contrast, it is harder to  argue that a man with significant mental incapacity gets  a similar benefit from being sterilized.   The sorts of things that law courts have considered, in  deciding what is in the patient's best interests include:   • The likelihood of pregnancy - that is, is the individual  engaging or likely to engage in sexual intercourse?   • How well is the patient able to understand the con-  cept of pregnancy and its relation to sex?   • Would this patient be able to use any other form of  contraception?   • How would a sterilization operation affect the other  medical problems of the patient - e.g. will steriliza-  tion stop heavy periods from causing a female  patient distress?    A common thread of argument may run through a num-  ber of the issues in reproductive ethics. A person's eth-  ical stance on abortion, in-vitro fertilization (IVF),  cloning and genetic screening may largely be deter-  mined by his/her view on the moral status of the  embryo or fetus. Gillon (2001) goes so far as to say that  this question is not so much ethical (to do with right  and wrong) but epistemological (based on what you  believe, in this case about the status of the fetus).   Remember : Two people may agree that killing people is  wrong, but disagree over what counts as a person.   According to the law in England and Wales (adapted  from Herring 2010):   • a fetus is not simply part of the mother either   • it is not possible to bring legal proceedings in the  name of the fetus    • a fetus has interests which are protected by the law   • a fetus is not directly protected by the European Con-  vention on Human Rights.   The legal status of the fetus is clear: it has no legal rights.  However, the human embryo (or fertilized egg) does  not become a fetus until about the 6th week of preg-  nancy. How should we determine the moral status of  the embryo as it develops into a fetus and progresses  towards birth? A number of views, and objections, are  presented below.    The embryo is morally valuable  because it is a human organism   This view holds that the value of the embryo is situated in  the fact that it is human and as such deserves moral rec-  ognition. Therefore, as it is morally wrong to kill an adult,  it would have been equally wrong to kill that same per-  son when he or she was a child, fetus or embryo. All of  these entities are part of a continuous individual identity  that can be traced back to conception.   • is killing a zygote, or a primitive embryo, really as  morally bad as killing a child? One way of thinking  about this is to imagine a scenario where you are  able to save either an embryo (in a test-tube) or a  5 -year-old child from a fire in a laboratory. Would  you be morally justified in preferring to save the  embryo? If not, why not?   • why are human embryos more important than other  embryos? What characteristics do early human  embryos (e.g. at the 8- or 16-cell stage) have that dis-  tinguish them from other mammalian embryos,  apart from potential to develop into humans?    The embryo is morally valuable  because it is a potential human  being   This view accepts that the embryo is not morally valu-  able in and of itself. However, because it can potentially  develop into a human child, it deserves moral concern.  Killing an embryo is wrong because it deprives the child  that could have potentially lived its existence. This view  also generally holds that moral concern starts at  conception.   • if it is potentiality that important, are gametes  deserving of moral concern as well? For example, a  couple that uses contraception is effectively prevent-  ing a number of potential children being realized.   This view holds that there is some characteristic or  characteristics that morally valuable entities have.  Common characteristics of personhood include: con-  sciousness (or perhaps self-consciousness), sentience,  rationality, the ability to form future plans and the  capacity to value one's own life. Various religious views  may hold that embryos are not persons until the soul  enters the body, which may be at conception or at a  later stage.   In this context, 'being a person is not necessarily the  same as 'being a human being'. Some humans may not  qualify as persons, and some non-humans may qualify  as persons!:   • Some of these characteristics will confer the status of  personhood on embryos beyond a certain stage of  development; e.g. after 24 weeks, a fetus can proba-  bly feel pain, so would qualify as a person if sen-  tience was the criterion being used. However,  others, like self-consciousness or the capacity to  value one's own life, require a far greater degree of  development, and indeed may exclude newborns  and infants from 'personhood'.   • Some characteristics may also exclude individuals  with severe learning difficulties, leaving some ques-  tions as to how these individuals are to be treated  and their interests protected.   • Some characteristics may include other animals; we  have no reason to doubt that all other mammals are  able to feel pain in a similar way to humans, and  some higher primates may be self-conscious.    The embryo is morally valuable  because it is valued by others   This view holds that embryos are morally valuable  because they are the objects of moral concern to others.  This means that the value of the embryo is not intrinsic,  but is conferred by others. Thus, the wrong in killing an  embryo, fetus or even an infant is not the wrong done to  that entity, but is wrong because there exist individuals  (e.g. the parents) who care for it, and do not wish it to be  harmed. There also exists a broader concern that the kill-  ing of such entities would diminish the concern for  older children and human life in general.   • does this mean it would be acceptable to kill new-  borns if no-one around them cared? This idea  appears to clash with the idea of a right-to-life for  all humans from birth. Western society in general  is protective towards all children (see Ch. 3).    The moral value of the embryo  increases as it continues to develop   This viewpoint accepts that the moral value of the  zygote is less than that of the embryo, which in turn  is less than that of the newborn. This view does not spec-  ify a particular stage of development that is of over-  riding importance. This, however, does not provide  practical guidance on whether abortion at 12 weeks,  24 weeks or at term, is morally acceptable.    Abortion is the intentional termination of pregnancy  with the resulting death of the embryo or fetus (Hope  et al 2008). While the Hippocratic Oath appears to forbid  abortion in ancient Greek and Roman times both abor-  tion and infanticide were practised. The fetus and infant  were seen to be products of the mother and as such  'owned' by the husband, who was free to dispose of  the infant in any way he saw fit. In general, Christianity  forbade abortion, although arguments were put forward  between the fifteenth and eighteenth centuries that  claimed abortions prior to the mother feeling the fetus  move (a time known as the 'quickening') were permissi-  ble on the grounds that 'ensoulment' was yet to happen.  In the eighteenth and nineteenth centuries, 'medical  opinion' accepted 'preformism' - the idea that spermato-  zoa contained a fully formed, miniature, human being  (known as a homunculus ) and that the uterus simply pro-  vided a fertile environment for a diminutive person to  grow. Such a view was used to bolster anti-abortion argu-  ments and persisted into the first-quarter of the twentieth  century. However, abortion remained illegal in most  Western countries until the 1960s.   The Abortion Act 1967 (amended 1990) sets out cir-  cumstances in which clinicians have a defence to what  would be considered in law to be a crime.   1. Offences Against the Person Act 1861, ss. 58-59:  these sections make illegal:   b. A second person helping a woman to procure an  abortion   a. Makes it illegal to destroy the life of a child  capable of being born alive    b. The destruction of a 'child capable of being born  alive' is not a criminal offence if this is done with  the intention of saving the life of the mother.   3. Abortion Act 1967, amended by the Human Fertili-  sation and Embryology Act 1990.   The Abortion Act 1967 was designed to tackle two key  problems. The first was that illegal abortions carried out  in secret by often untrained and poorly qualified 'abor-  tionists', were leading to significant injury in women.  The second was the result of a common-law decision that  suggested that abortions were acceptable if the doctor  believed a continuation of the pregnancy would cause  severe harm to the physical or mental health of the  mother. This decision led to the problem of doctors think-  ing they were carrying out abortions in good faith, but at  the same time, running the risk of facing criminal charges.   Figure 4.1 shows an important section of the Abor-  tion Act 1967 (as amended 1990). The following points  are important:   1 . In general, the opinion of two doctors is needed -  only one doctor in an emergency.   2. ss.l,(la) allows an abortion to be carried out before  the 24th week of pregnancy for a wide variety of rea-  sons, including preventing harm to a woman's exist-  ing children. This clause is sometimes referred to as  the 'statistical clause', as statistically any normal  pregnancy carries more risk than a standard early ter-  mination - according to some, it effectively allows  any abortion to fulfil the criteria of the Act. Most  abortions take place under this section.   3. The Abortion Act does not give women the right to  demand an abortion. The power to decide whether  a woman qualifies for an abortion lies with the med-  ical practitioner. The woman's consent is necessary  and she can of course refuse to have an abortion,  even if it is thought necessary to save her own life.   4. If the woman is unable to give consent, then an abor-  tion can still be carried out if it is in the woman's best  interests and in accordance with good medical practice.   5. After the 24th week of pregnancy, risk to the life of  the woman, the prevention of serious disability or  fetal disability (most common) is required for an  abortion to be carried out.   7. The father of the fetus has no legal right to prevent  the woman from having an abortion.   8. The Abortion Act gives doctors the right to make a  'conscientious objection' to participating 'in any treat-  ment authorized by [the] Act' except in an emergency.  However, the doctor must not prevent the woman  from obtaining access to abortion services. For exam-  ple, if a patient sees her GP and requests an abortion,  the GP must either refer her (if she meets the criteria of  the Abortion Act), or be sure she has access to informa-  tion about abortion services and the ability to use the   1 . Subject to the provisions of this section, a person shall not be guilty of an offence under the law relating to  abortion when a pregnancy is terminated by a registered medical practitioner if two registered medical practitioners  are of the opinion, formed in good faith:   a. that the pregnancy has not exceeded its 24th week and that the continuance of the pregnancy would involve  risk, greater than if the pregnancy were terminated, of injury to the physical or mental health of the pregnant  woman or any existing children of her family   b. that the termination is necessary to prevent grave permanent injury to the physical or mental health of the pregnant  woman   c. that the continuance of the pregnancy would involve risk to the life of the pregnant woman, greater than if the  pregnancy were terminated   d. that there is substantial risk that if the child were born, it would suffer from such physical or mental abnormalities as  to be seriously handicapped.   2. In determining whether the continuance of a pregnancy would involve such risk of injury to health as is mentioned in  paragraph (a) or (b) of sub-section (1) of this section, account may be taken of the pregnant woman's actual or  reasonably foreseeable environment.    information if she wishes, even if the GP personally  thinks abortion is morally wrong.   9 . If in a late abortion the fetus is born alive, then doctors  have a legal obligation to try and save it, if it is the  newborn's best interests. This is because a child gains  independent human rights upon birth.   • The ' pro-life ' position: the extreme version of this  view holds that all human life is sacred and an  embryo counts as a human life from the point of  fertilization. Therefore, abortion is the moral equiv-  alent of murder. Arguments are in general made  either from the position that all human life is  valuable and that the fetus is human, or that the fetus  is a potential human being and should be protected  for that reason (see above for the different views  about the human embryo).   • The 'pro-choice' position: this view holds that ending a  pregnancy is a choice that ought to be made by the  individual woman involved. The value of the life of  the fetus is not always seen as zero, but as being  subordinate to the rights of the mother to determine  what happens to her own body. There are conseque-  ntialist and rights-based reasons for this argument:   Consequentialists argue that harms that may occur  if there was no legal option of a safe termination includ-  ing the following:    • Pregnancy may be a risk to the health of some  mothers   • Women may seek unsafe terminations - putting  themselves at even greater risk.   Rights-based arguments include the idea that: restricting  access to abortion is an infringement of a woman's  autonomy to exercise control over her own body and that  to refuse an abortion also infringes a woman's right to  health and the pursuit of a satisfactory life. The validity  of these arguments in part depends on the acceptance  of the 'pro-choice' perspective that fetuses are not human  persons with rights of their own, or at least not rights that  are equivalent in force to those of the pregnant woman.   Miss F has a history of mental disturbance and drug abuse.  She is pregnant for a second time - her first child is cur-  rently in care. She wishes to continue smoking, drinking  and taking drugs throughout this pregnancy. She has  not been found to be incompetent. Can (and should)  the unborn child be made a ward of court in an attempt  to curb the mother's harmful behaviour towards it?   This scenario is based on a real case. Re F (in utero)  [1988]. It is an example of where the autonomy of the  mother (to live the lifestyle she wishes) conflicts with  the interests of the fetus to be born healthy. Smoking  and excessive alcohol consumption have the potential  to cause a number of problems in the baby that will con-  tinue outside of the uterus. Drug use may lead to with-  drawal symptoms in the newborn and may also be  associated with problems of child development.    As we have discussed above, the fetus does not have  personhood or rights as far as the law in the UK is con-  cerned. The Congenital Disabilities (Civil Liability) Act  1976 (as amended by the Human Fertilization and  Embryology Act [HFEA] 1990) holds that a mother can-  not be held liable for any harm that occurs to the fetus  in ntero (apart from harm due to negligent driving). UK  courts have expressed the view that if the behaviour of  pregnant women was to be controlled in order to safe-  guard the health of their unborn children, this would  have to be expressed by an Act of Parliament.   It has been said that if we agree that termination is  ethically acceptable how can we object to harmful  behaviour to the fetus that doesn't kill it? However, this  objection ignores the difference between a pregnant  woman going to term, and a pregnant woman who is  going to abort. The former is responsible for harmful  consequences to both the fetus and the future child.  The latter is only responsible for the harmful conse-  quences to the fetus. There is arguably a much greater  moral duty upon the woman who intends to give birth.   Clearly from a virtue or consequentialist perspective,  it would be 'better' if Miss F did stop smoking, drinking  and taking drugs, not only for the health of her unborn  child, but also for her own health. However, this does  not necessarily mean that such a moral duty should also  be a legal one. Imagine a further development in the  scenario.   Miss F is now 2 weeks past her due date; the baby is in a  breech position and is showing signs of fetal distress. It  is thought that a caesarean section is the only way of sav-  ing the life of the baby. Miss F refuses to have the oper-  ation, saying she wants a 'natural' birth. She is still  found to be competent. What should her doctor do?   A number of cases have gone to court in order to  force women to have caesarean sections - either to pre-  serve the mother's life or the life of the unborn child.  Fegally, if the woman is competent, then her refusal  (whatever her reasons) is sufficient to prevent the oper-  ation. However, the moral acceptability of refusal may  depend on the nature of her reasons. Is it morally  acceptable for the woman to refuse a caesarean because  she does not want a scar? What about religious reasons?  What about no reason at all?   There is a growing consensus among Western clini-  cians and bioethicists that overriding a competent  woman's refusal is almost never justified. The following  are a few reasons why:   • A caesarean might involve some risk to the mother  (though in a complicated labour, the procedure  may reduce the overall risk to the mother).   • Courts would not order a mother to donate a kidney  to an ill child in need of a transplant. So it seems    unfair to force a woman to undergo a caesarean sec-  tion (consider whether a caesarean section and oper-  ation to donate a kidney are fair comparisons).   • If a woman continued to object would doctors be  expected to forcibly restrain and anaesthetize a  pregnant woman?    To begin with, there are problems relating to whether  'infertility' or 'sub-fertility' are 'illnesses', and whether  treatment should be provided for anyone who needs  it, irrespective of the ability to pay (Chapter 5 considers:  What is need?) . The answers to this sort of question may  turn on whether or not we consider that people have a  right to have children, and whether such a right applies  equally to everyone (including same-sex couples, single  women, poor women, post-menopausal women or  even single men) .   Remember. Whether or not we believe people  should have a right to assisted conception depends  on whether we believe that there is a right to have  a child or whether infertility is an illness - AS WELL  AS whether the particular method of assisted  reproduction is ethically acceptable.    What then are the different ways in which infertility can  be treated?   This can take the form of egg donation or artificial  insemination (AI), either from the husband/partner  (AIH) or from a donor (AID). Some of the ethico-legal  problems of gamete donation are concerned with:   • the number of children a man can father by AI   • whether or not payment can be made for donor  sperm or eggs   • who the father of the child is if donor sperm is used   • who the mother of the child is when one woman  provides the genetic material, and another gives  birth to the child.   This requires the fertilization of an egg outside of the  human body. In-vitro fertilization (IVF) requires the  stimulation of ovulation in the woman and the    harvesting of eggs. The eggs are incubated with the  sperm in a petri dish, and in some cases a single sperma-  tozoon may be injected under the covering of the egg.  Finally, the fertilized egg (usually more than one) is  transferred to the woman's uterus. The ethical problems  particular to IVF include:   • The production of excess embryos that must subse-  quently either be stored (by cryopreservation) or  destroyed   • The increased likelihood of multiple pregnancies  and the subsequent increased demand for obstetric  and neonatal services   • The potential for embryo selection to avoid genetic  disease, but also potentially to choose the sex, or  other characteristics of the embryos   • Discrimination in the provision of the service  against poor, single or older women.   • Partial - in which the surrogate (or carrying)  woman's ovum is fertilized by the husband/partner  from the commissioning couple, either via IVF, AID  or sexual intercourse, so she not only carries the  baby, but has a genetic link with it   • Full - in which the commissioning couple provide  both the ovum and the sperm, so that while the surro-  gate carries the child, it is not genetically related to her.   • It represents a separation of genetic, gestational and  social parenting   • It raises the issue of the commodification of human  life and the threat of 'baby selling'   • There are fears of the exploitation and/or coercion of  women into being surrogates.   General arguments against in-vitro fertilization and  other reproductive technologies are given below.   This argument generally relies on an underlying belief  either in natural law theory or a religious principle. A  version of natural law theory might claim that the func-  tion of sex is reproduction and, therefore, the separation  of the two represents an unnatural use of medical tech-  nology. But:   • the problem with this and all 'it's unnatural' argu-  ments is that nature is not always a good guide in  showing what is ethically right and wrong. Much  of modem medicine is in a sense unnatural, but this  does not mean it is wrong. Similarly, argument-based  principles from any one religious viewpoint may be   IVF and the other reproductive technologies enable sin-  gle women or lesbian couples to have children. The  claim has been made that such individuals are less suit-  able parents than a heterosexual couple. An additional  argument is sometimes made that each partner in  homosexual relationship is not necessarily infertile  and therefore could have simple donor insemination.   Flowever, it is yet to be conclusively shown that het-  erosexual couples are 'better' parents or raise 'better'  children, however that may be measured. It is accepted  that children thrive in a loving environment, but it has  not been shown that either single parents or same-sex  couples are unable to provide such an environment.  In the face of such a lack of evidence, we should be cau-  tious in denying the ability to raise children to these sec-  tions of society.   This is the argument that there are positive social atti-  tudes towards women who have children, and negative  attitudes towards those who either do not have children  or do not want children. Such attitudes place pressure  on women to become mothers. The presence of IVF  and other reproductive technologies increases this pres-  sure. Rather than perpetuate such attitudes, the state  should encourage acceptance of childlessness within  society.   Flowever, while there is the possibility of social atti-  tudes factoring in the reasons why a woman might wish  for IVF, it is not clear that this would be an overriding  reason. Furthermore, it seems to disregard the auton-  omy of individual women to make their own reproduc-  tive choices.   IVF is an expensive technology and occasionally,  patients have been asked to donate eggs in return for  treatment. Furthermore, surrogates might ask for large  sums of money to cover the costs of 'being pregnant'.  This argument focuses on the danger of less-well-off  women being exploited.   However, the plausibility of this argument relies on  how one thinks about luxury goods and capitalism in    general. Most luxury goods are provided by the less well-  off for consumption by the well-off; whether or not this  is exploitation is debatable.   Assisted reproduction is not  sufficiently important to be  provided on the NHS   This argument focuses on the resource issue surrounding  the provision of IVF and related services on the NHS. Does  providing infertility treatment deny resources to other  more urgent and worthy NHS services? Indeed, what obli-  gation, if any, does the NHS have to provide treatment  for infertility?   Being infertile however, is a profoundly distressing  condition for many individuals. Being able to become  pregnant, give birth and raise a child can be substantial  'goods' in leading a fulfilled life. The provision of IVF  may lower the associated psychological morbidity of  being childless.   Also, IVF is provided by medically qualified personnel  in a clinical setting. This suggests that it is a medical treat-  ment. Infertility is characterized as a health problem.  Therefore, it is arguable that IVF should be considered  with other treatments for provision in an NHS setting.   IVF enables embryos to be screened. At present in the  UK, this is allowed in order to prevent embryos that will  manifest a genetic disease from being implanted. In the  case of X-linked diseases, IVF can be used to select only  female embryos. However, the potential exists for sex  selection for social reasons. In the future, there may  be the potential to select embryos on the basis of height,  intelligence, sexuality, hair or eye colour. The creation of  such 'designer babies' is considered wrong because it  plays into the idea that children are a commodity.   The social selection of embryos argument uses the  threat of a slippery slope - it implies that by allowing  one type of selection now, we will end-up with an unac-  ceptable eugenic programme. However, the fact that we  allow some kinds of selection does not mean that we will  inevitably allow all kinds of selection - sex selection is  currently legal in the UK on medical grounds (to avoid  sex chromosome-linked serious disease), but not on  social grounds.   To an extent, eugenics is already practiced when  genetic disease is screened for. If better (normal)  embryos can be selected, then why shouldn't embryos  with genes for attributes like intelligence, long life and  disease resistance be selected?   A useful way of thinking about the ethics of assisted  reproduction is to consider the interests of:   • the (potential) child: for example, what are the conse-  quences to the child of being born to a particular  couple? The HFEA 1990 endorses this approach  (see below), requiring that account be taken of the  'welfare of any child who may be born'. This approach  may be criticized in that it assumes that it is better  for a child never to have existed rather than to be born  in a particular set of circumstances.   • the parents: is having children who are genetically  related a human right ?   • the state: assisted reproduction is an expensive  treatment. Are the state's limited resources best  spent on this sort of health care? Is infertility a  disease ? Should the state only allow those indi-  viduals who are financially capable of supporting  a child to have IVF? Is IVF more expensive  than supporting children with disabilities into  adulthood?   Hint: A useful way of thinking about the ethics of  assisted reproduction is to consider the interests of  the potential child, the parents and the state  (or society in general).   The most important piece of legislation in the area of  reproductive medicine is the Human Fertilization and  Embryology Act (HFE Act) 1990.   1. The creation of embryos in vitro, i.e. outside the  human body   This means it forms the basis for legislation on artificial  insemination (in a clinic), egg donation and IVF.   The HFE Act 1990 (s.5) stipulates the creation of  the Human Fertilization and Embryology Authority  (HFEA): a body charged with the responsibility of:   2. granting licences to carry out activities specified in  the Act   • No licence required unless gametes need to be stored  or frozen. This usually occurs only if the husband is  to undergo treatment that may render him infertile  (e.g. chemotherapy).   • The HFE Act 1990 requires that adequate written con-  sent is obtained. It is good practice for clinics to  ensure couples consider and agree on what should  happen to gametes in relation to:   C. neither one of the couple losing the capacity to  revoke consent   D. how long they would like them stored (the  amended I IFE act stipulates a maximum time  limit of 10 years for gametes and 10 years for  embryos).   The case of R v. HF&E Authority, ex parte Blood [1997]  involved a married man who had developed meningitis  and lapsed into a coma. I lis widow, Diane Blood con-  vinced the doctors treating her husband to remove  sperm from her unconscious husband prior to his  death: this act was considered to be unlawful as there was  no evidence of consent. The sperm were stored at a  licensed clinic and thus came within the remit of the  HFE Act. The HFEA refused her permission to use the  sperm in order to conceive a child - even though Diane  Blood claimed she and her husband had been trying for  a child. The Court of Appeal held that insemination in  Britain would be illegal, but agreed that under European  Law, Diane Blood was entitled to seek medical treat-  ment in another member state. A Belgian clinic agreed  to carry out artificial insemination, and the HFEA agreed  to allow the transport of the sperm to that clinic. How-  ever, the Court of Appeal stated that this case should not  set a precedent, as the taking and storing of the sperm  without consent was illegal.   • Does require a licence when it is done in a clinic  under s.4 of the HFE Act 1990   • Does not always require a licence: all it requires is a  suitable male to 'donate' sperm and the woman to  self-inseminate; this is often referred to as the 'turkey  baster' method or 'do-it-yourself insemination'. If no  clinic is involved, it is unregulated. The UK court  case, MacLennan v. MacLennan [1958] asked the  question of whether such donor insemination con-  stitutes adultery. The courts found that without a sex-  ual relationship, it does not    • Sperm donors should be over 1 8 years and under 55,  and egg donors over 18 years and under 35.   • Must be screened appropriately if used in a clinic  setting; s.44 of the HFE Act amends the Congenital  Disabilities Act making it possible to bring an action  against a clinic should negligent screening of gam-  etes take place. Potentially, donors can also be liable  if they lie about their family/medical history when  they donate.   • If a married couple have AID, the husband/civil  partner is the legal parent   • If a cohabiting couple both seek AID, the partner  is the legal parent   • If a woman receives treatment without the con-  sent of her partner, even if she is in a relationship,  there is no legal father   • If treatment occurs outside the remit of the HFE  Act, for example do-it-yourself inseminations or  AID in another country, then the donor becomes  the legal father   • Treatment carried out within the remit of the HFE  Act accords no rights and no responsibilities to  the gamete donor.   • The child's right to access information is dealt with  under ss. 31-35 of the HFE Act:   • At 18, an individual who suspects they may have  been fathered by donor insemination can find  out if their suspicions are true.   • At 16, an individual who wishes to get married  and suspects they may have been fathered by  donor insemination can find out if they are  related to their intended spouse.   Activities which are unlawful under  the HFE Act 1 990 (Amended 2008)   • The creation or use of any embryos outside the  human body (however they are created) except by  licensed clinics   • The creation of 'human admixed embryos' except for  research in licensed facilities   • Use or storage of embryos beyond the 14 days after  the gametes have been mixed   • Modification of the genetic structure of any cell  which is part of an embryo   • Sex-selection of offspring for non-medical reasons  (sex selection to avoid having a child with a serious  sex-linked disease is allowed).   welfare of any child who may be born as a result of    the treatment, including the need of that child for 'sup-  portive parenting' (replaces 'a father').   Section 38 of the 1990 FIFE Act states that: no person  who has a conscientious objection to participating in  any activity governed by the Act is under any duty, how-  ever arising, to do so.   Huntington's chorea is a hereditary disease caused by a  single gene inherited as a dominant characteristic. The  children of patients with this condition have a 50%  chance of having the disease, which does not appear  until later in life. A GP has cared for a woman during  the early stages of Huntington's chorea. Her son, also  a patient and aged 48 years, has repeatedly refused  any test to establish whether or not he is affected. He  remains asymptomatic.   The man is on the point of re-marrying. His fiancee is  a 34-year-old woman who also happens to be a patient  of the GP, and the GP knows that she desperately wants  to have children. The man angrily rejects an invitation  from the GP to discuss matters.   The man's daughter from his first marriage is 20 years  of age. She too is a patient of the GP. She approaches the  GP and asks to be tested for Huntington's chorea before  starting a family herself. She does not want her father to  know. She does not want the results put in her clinical  records, as it may affect her application for a life insur-  ance policy.   We can try to approach this scenario by looking at the  duties of care and confidentiality the GP has to each of  his patients involved.   The father in the scenario does not wish to be tested. At  face value, it seems that in order to treat this patient as  an autonomous agent, his wishes should be respected.  To remain ignorant of his genetic status with regards  to Huntington's chorea is a valid stance.   • respect for autonomy can be challenged by compet-  ing moral obligations, as when respecting someone's  autonomy would cause significant harm to another,  or where one person's autonomy inhibits or dimin-  ishes that of another. We are told the man is about to  re-marry and his fiancee is desperate to have chil-  dren. So, does the father have any responsibility to  tell his fiancee of the increased risk of Huntington's  that any of their children may have? If the father is a  carrier of the Huntington's chorea allele, then any of  his children have a 50% chance of inheriting it. He    himself has a 50% chance of being a carrier; as his  status is unknown, the probability of any of his chil-  dren being carriers is 1 in 4 or 25%.   • we do not know whether the man wishes to have fur-  ther children at all. If he does not and discusses this  with his fiancee and takes the necessary precautions  to avoid the situation, there is no reason why the  father should be tested or even why he should tell  his fiancee of his family history of Huntington's cho-  rea. (Although, many would argue he has a duty to  his fiancee to be truthful - in order to establish a rela-  tionship based on trust.)   • if the man does decide he wishes to have more chil-  dren with his new wife, and does not inform her of  his family history of Huntington's, then the GP is  faced with a conflict of moral duties.   The fiancee and future children  The fiancee is one of the GP's patients, so the obligation  of veracity asks of the GP to be truthful with her. We can  assume that the fiancee is keen to be informed of all the  possible risks to her children. The GP possesses some  information that is relevant to the woman and child,  but perhaps ought not to disclose it. Were the woman  informed of all the facts she might feel it prudent to have  a pre-natal screening done for Huntington's should she  fall pregnant. Perhaps by choosing to have further chil-  dren, in the knowledge that there is a 1 in 4 chance of  them being affected by Huntington's, the father's auton-  omy and thus his right to confidentiality, are dimin-  ished in favour of the children, as the health and  autonomy of third parties are introduced.   The daughter is a fully autonomous individual and,  therefore, does not require consent from her father to  be tested - even though a positive test result will indi-  cate that the father also is positive for Huntington's.  Although he does not wish to know his status, he cannot  prevent his daughter from finding out hers. If the  daughter is determined to know whether or not she is  a carrier of Huntington's, there is no reason why the  GP cannot encourage her to discuss the implications  of the testing with her father, although if she does not  wish to do so, she cannot be coerced into this or have  her test made conditional on this.   If her test result is positive for Huntington's, the  daughter introduces a greater degree of certainty into  the scenario. It will be known to both the daughter  and the GP that the man is also a carrier and thus any  future child of the man will have a 50% chance of  developing Huntington's. The daughter now possesses  knowledge about her own condition that implies infor-  mation about her father's genetic status. Her father has  no rights over this knowledge - it is information that is    'owned' by his daughter. The father's right to privacy has  been curtailed because of the third parties involved and  the fact that his carrier status is deduced via a test on rel-  atives rather than actually on him. For the daughter to  discuss this with her father's fiancee could be seen as  a breach of his privacy, although perhaps the fiancee's  right to be informed overrides this. This right to be  informed, however, may not override the GP's duty of  confidentiality, so it may be that there is less of a moral  dilemma if the daughter informs the fiancee of her fam-  ily history of Huntington's, rather than the GP doing it.  With regards to situations like this, John Harris (1994)  says that: 'While it will always be open to individuals to  refuse tests for themselves, they may not be able to so  effectively shield themselves from the increased knowl-  edge of their own chances, which will come from rela-  tives who do opt for the test. They will also have to  consider whether they are justified in having children  who will certainly, or probably, have the disease'. This  shows that the greatest responsibility lies with the  father - it is he who must decide if he is justified in  having children that may have Huntington's.   The end of the scenario mentions the daughter's wish  for the test not to be recorded on her clinical records, as  it might adversely affect her life insurance. If the test is  done, it seems important that it is recorded. There is no  reason for the GP to break any confidences and inform  any insurer - it is up to the patient what information  they give to the insurer. On a broader scale, we can  ask whether genetic screening should cause people to  be liable for higher insurance premiums. If we are happy  for this to occur with other diseases such as familial  heart disease and diabetes, should genetic tests not be  just as acceptable? This debate would of course depend  on the reliability of such tests.    On 23 February, 1997, aged just 6 months, Dolly the  sheep was revealed to the world's media by the Roslin  Institute, Edinburgh. Dolly had been cloned directly  from a single cell from the breast tissue of an adult  sheep. In December 2001, the UK Parliament passed  the Human Reproductive Cloning Act to make human  cloning illegal. Given this apparent consensus against  cloning, how as medics, should we approach the ethical  debate?   One starting point is a variation of Mill's Liberty Prin-  ciple. We can reasonably argue that individuals should be  free to act as they please as long as their actions do not  harm anyone. Along these lines, John Harris talks of a  'procreative autonomy', which extends to reproductive  cloning. This is the idea that individuals should be  allowed to control how they reproduce. Such a freedom    is especially important when the choices made cause  little harm to either the children produced or society  as a whole, and in addition, extends a principle such as  respect for autonomy. In essence, this argument, when  applied to the question of cloning, requires that in order  to restrict choice and freedom, we present a strong case as  to why cloning is unacceptable for human reproduction.   • the technology is unsafe at present, and could give  rise to a large number of fetal abnormalities, and  children with a shortened lifespan or who suffer   • it would be a psychological harm to those born as a  result of it   The loss of genetic variation argument runs that sexual  reproduction is essential in producing variation within  the human species; cloning removes this variation and,  thus, reduces genetic diversity - this may in the long-  term threaten the survival of the species.   • if only used in situations where infertile parents  wished for genetically related offspring, it is likely  that only a minority of people would use cloning  technology, and this surely would not be sufficient  to threaten species survival   • even if everyone in the world were to be cloned,  genetic diversity would not change from what it is  now - in fact it would stay exactly the same. (This  assumes that only one clone of each person is  made.) However, problems involving reduced diver-  sity could arise if some individuals produce vast  numbers of clones, e.g. if a 'crazy dictator' decides  to create clone armies.   • this objection is really to do with a misuse of a tech-  nology rather than an objection to the technology  itself. Baseball bats can be used when mugging  someone, but this doesn't mean we should ban  baseball.   If reproductive cloning were to be used, then it would  have to be regulated, as IVF and abortion are currently  regulated. At the root of this sort of concern may be  the fear that once we allow certain procedures that  involve tampering with the human genome, there is a  slippery slope to unacceptable eugenic policies being    introduced. This type of concern affects a number of  genetic techniques, including sex selection, pre-natal  genetic diagnosis and selective terminations.   A more common accusation is that cloning is  'unnatural' - it arouses a feeling of uneasiness that  cannot easily be clarified. This is sometimes called the  'yuck factor'. However, 'unnatural' does not always  mean 'morally wrong'. An objection to cloning must  involve something over and above a sense of being  unnatural, or simply prompting a sense of disgust.  The crux of the 'it is unnatural' argument may be to  defend the notion that technological developments  should be used in such a way as to improve humanity  without destroying or detracting from what it is to be  human.   Can clones be unique if they are 'copies' of other peo-  ple? We know that identical twins have identical copies  of DNA, and at the same time they exist as unique indi-  viduals with differing personalities. If we think of clones  as 'vertical twins', rather than 'horizontal' ones, there is  no reason to suppose that they will be any less unique  from their vertical twins than identical twins are from  their horizontal twins. In fact, given the different envi-  ronments in which they are raised, we could suppose  that clones would be rather more different than hori-  zontal twins are.   Next, there are those who object to human cloning on  the grounds of the harm that might be inflicted on the  child. Indeed, the HFEA, which governs IVF treatment  and the use of embryos, indicates that the good of the  child is paramount. The sentiment of the Act is clear,  but what exactly is the nature of the harm that may  be visited upon a clone? The harm is often described  as psychological and may have at least two aspects.   First, there is said to be the burden a child would  have of seeing exactly how they would appear at various  ages, by seeing photographs (or home videos) of their  'parent' at those ages. However, many sons and daugh-  ters already look at their parents and resign themselves  to the same fate, without suffering too greatly for it.  Granted, the similarity will be greater between clones,  but the idea that that fact will lead to intolerable suffer-  ing, such that we consider it is better that child doesn't  exist, is unsubstantiated.   Second, there is the objection that the 'parents' may  expect too much of their clones. For example, a concert  pianist may clone himself and expect (to an unreason-  able degree) his clone to possess a similar talent for    music. Many parents may place unreasonable demands  on their children in this way. The children of doctors  often feel pressurized into medical careers, but no-one  suggests that doctors don't have children; what they sug-  gest is that children be accorded the freedom to flourish  in areas of their own choosing. Parents of clones may be  more likely to expect too much of them (because of cer-  tain preconceptions), but this is not an inevitable conse-  quence of cloning. Any harm that is isolated, if it  exists, is located in the parenting, not the act of cloning.  Indeed, it may be that a planned child who is cloned may  be more cherished than one conceived accidentally.   Finally, there is the objection that cloning represents a  commodification of children and this in itself is wrong.  Implicit in this claim, is that there is no morally admi-  rable reason for producing a clone. The standard reason  given for wanting to clone oneself is that cloning re-  presents the only chance that a particular individual  can have a genetically related child. The strength of this  reason depends on whether people have a right to have  genetically related children. Thus, is the desire to have  a genetically related child simply a selfish one - a desire  that treats children simply as a consumer product? Is  there in any sense a healthcare need for cloning that can-  not be satisfied by the reproductive technologies already  available? Tied in with this question is that of what kind  of person would desire to have a clone? And, are they  the kind of people who should be able to have clones?  It may be that while cloning in principle is morally  acceptable (i.e. for good purposes), in practice the only  people who would want clones would want them for  morally unacceptable reasons (e.g. unreasonably wanting  to replace a dead child) .    The treatment of those people of advanced age or with  terminal illnesses is perhaps one of the more distressing  aspects of medicine. Ethical questions in this area not  only include when it is appropriate to stop treatment,  but whether hastening death is something which should  take place in a clinical setting. The definition of death is  another 'epistemological' question, which has major  implications, such as when efforts to maintain a body's  vital functions can be withdrawn and whether organs  may be taken from a body for use in transplants.   Is life 'sacred' or intrinsically valuable? Is it always  wrong to deliberately end someone's life?    The most extreme version of the principle of sanctity  of life is sometimes referred to as vitalism. According to  vitalism, human life is of absolute value and should be  maintained whenever possible and by whatever means,  irrespective of the quality of a person's life. A less  extreme version of the principle holds life to be a basic  but not an absolute good. This still means that there is  value to a person simply being alive, no matter what  state that person is in.   Other thinkers, such as Doyal, think that the value  of life is self-determined in accordance with respect  for autonomy. In addition to this, Doyal and others  think that life is only instrumentally valuable. We  can say that something is instrumentally important if  its value depends on its usefulness for something else,  e.g. pleasure, money or medicine, and some lives are  therefore not worth living.   'Quality of life' arguments are also used in a similar  manner to 'value of life' arguments. Some people argue  that their quality of life is so poor, either because of pain  and suffering or because their ability to flourish as indi-  viduals is so diminished (e.g. because of a severe disabil-  ity), that continued existence is not in their best  interests. Consequently, they may argue that life-saving  treatment should not be provided, or ask for assistance  in dying.   The act/ omission debate centres on the question of whether  actions are more culpable than omissions. In the euthana-  sia debate, the question is whether there is a moral differ-  ence between killing someone (actively) and allowing  them to die (passively), where their death is avoidable.  The distinction between killing someone and allowing  someone to die is maintained in English Law.   • intuitively, there seems to be a difference between  killing and allowing to die   • we make omissions all the time, e.g. by not giving  £50 per month to charity, I may consequently allow  the deaths of five people overseas, yet this does not  seem as bad as actively killing five people   • in practice, the courts are easily able to distinguish  acts from omissions, and find it useful to do so.   • to the consequentialist, it does not matter whether  the death was brought about by an act or an omis-  sion; both are choices we make and are ultimately  responsible for   • some omissions can be relabelled quite easily as acts  and vice versa. For example, is switching off a venti-  lator an act or an omission? If this is done by a    patient's relative, it would be an act (and the relative  could be charged with murder). If done by a doctor,  it is seen as an omission (see below).   The deliberate omission of care in order that (i.e. it is  'intended') someone dies (in that person's best inter-  ests) is referred to as 'passive euthanasia'. However,  the ethical and legal justifications for withholding or  withdrawing a treatment are more likely to be on the  basis of futility, refusal of consent (such as an advance  decision) or an argument that the burdens of the treat-  ment are disproportionate either the benefits or the  likelihood of success.   Remember that if a competent adult refuses treat-  ment, even if this is life-saving, the law in the UK states  that the refusal must be respected. Consequently, many  of the decisions discussed below are for people who do  not have capacity (see Ch. 3).   The BMA, in-line with the decisions of the courts,  has produced guidance on withholding and withdraw-  ing life-sustaining treatment (including artificial nutri-  tion and hydration). According to the guidance, use  of nasogastric tubes, percutaneous gastrostomy and IV  fluids are considered to be medical treatment. There is  no obligation to provide treatment which will not ben-  efit the patient and it is also permissible to withdraw  treatment which is not benefiting the patient. Where  there is any disagreement regarding what is beneficial  or the patient's wishes, it may be advisable to seek court  approval before doing so.   Remember: No method of feeding is risk-free: oral  feeding may result in choking or aspiration. NG tubes  may be associated with risk of reflux and aspiration  and gastrostomies with skin infection and tube  blockage.    Two recent legal cases illustrate the idea that a patient  may refuse life-sustaining treatment even if it will result  in death, but cannot demand any treatment which the  medical team deem not to be beneficial:   • In Re B [2002]: a 41-year-old woman was paralysed  from the neck down and dependent on a ventilator.  She asked for the ventilator to be switched off. The  medical team felt unable to comply on the basis that  they felt she had a worthwhile life. The court held  that Miss B was competent and well informed and  therefore her refusal of ventilation had to be  respected, even if this meant her death.    • In R (Burke) v. GMC [2005]: Mr Burke, a man with  cerebellar ataxia predicted that at some point in  the future, he would need artificial nutrition and  hydration (ANH). He was concerned that if he lost  capacity a doctor would decide that ANH was no  longer in his best interests and he would die of thirst  and starvation. He wanted to be able to demand  these in advance. The court held that a patient has  no right, whether he is competent or incompetent,  to demand a treatment which is not in his best  interests.   Since the decision of the House of Lords in the case of  Airedale NHS Trust v. Bland [1993], artificial nutrition  and hydration (ANH) are considered in law to be a form  of treatment, which can be withdrawn (see above).  Basic care includes oral feeding (where appropriate)  as well as washing and maintaining the basic dignity  of patients who are unable to do this for themselves.  Whether ANH is treatment or basic care has been hotly  debated in medical ethics circles for decades. However,  classifying ANH as treatment means that it can be given  as part of treatment for conditions such as severe  anorexia nervosa.   The 'do not attempt resuscitation' order (DNAR)  involves making an advance decision to withhold  cardiorespiratory resuscitation from a patient in the  event that they have a cardiac or respiratory arrest.  DNAR should be considered only when:   • resuscitation is not in the best interests of the patient;  that is, it is likely to cause a quality of life that is con-  sidered to be worse than death   • resuscitation is contrary to the informed wishes of a  competent patient; that is, resuscitation is not con-  sented to   Remember: a DNAR order is not the same thing as  withdrawing all treatment. It only relates to  cardiorespiratory resuscitation. In fact there have been  suggestions (Sokol 2009a) that DNAR should be  replaced by ‘Allow natural death’ (AND).   The usual reason for considering a request for a bed in  the intensive care unit is to provide artificial ventila-  tion for life-threatening respiratory failure, e.g. due to    pneumonia or drug overdose. The dilemma is to avoid  deaths when the condition is reversible (such as asthma  or Guillain-Barre syndrome) but also to avoid the pro-  longation of life when the outlook is hopeless (such as  end-stage motor neurone disease). The other consider-  ations are similar to those governing CPR - the endur-  ing wishes of the patient and an assessment of the  quality of life (advice from friends and family as to what  an unresponsive patient would have wanted is also rel-  evant, see Chapter 3 ) . Many illnesses which end in respi-  ratory failure, such as chronic obstructive pulmonary  disease, have a long course, so an advanced care plan  may be put in place and the patient's wishes ascertained.   Jonsen et al (2010, adapted from Sokol 2009b) dis-  tinguish three types of futility:   1 . Physiological futility is when the intervention cannot  physiologically achieve the desired effect. This is the  most objective, and least controversial, type of futil-  ity. If a patient is in cardiac arrest, for example, it  would be physiologically futile to administer shocks  from a defibrillator for a 'non-shockable' rhythm  such as asystole, or pulseless electrical activity.   2. Quantitative futility is when the intervention has very  little chance of achieving the desired effect. If a  patient goes into cardiac arrest and CPR is initiated,  it may be quantitatively futile to continue if the  patient remains in asystole after several minutes.  The probability of achieving the goal, namely restor-  ing breathing and circulation, is minimal.   3. Qualitative futility is when the intervention, even if  successful, will produce such an undesirable out-  come that it is best not to attempt it. In the above  example, doctors may decide that, even if the  patient's breathing and circulation are restored after  30 min of CPR, the extent of the neurological dam-  age will be such that the patient's quality of life will  be unacceptable.   There have been a number of cases where disabled  newborns have had treatment withdrawn or withheld.  The courts have tended to take the approach that aggres-  sive treatment for gravely handicapped children need  not be pursued, especially if there is only a short gain  in life expectancy anticipated from treatment.   In the case of Airedale NHS Trust v. Bland [1993] Tony  Bland was injured at the Hillsborough football ground  in April 1989 after being crushed in the crowd. He was  diagnosed as being in a persistent vegetative state  (PVS) with no signs of recovery. He was not ventilated,    but was fed via a nasogastric tube. The hospital treating  him sought court approval to discontinue nasogastric  feeding, on the basis that this was a form of treatment  and not in his best interests. His family were in agree-  ment. The case was finally decided at the House of Lords.  Key points of the Bland case were as follows:   • This case confirmed the act/omission distinction in law  (see below for an ethical discussion).   • Withdrawal of treatment is not a legally culpable  omission if in the patient's best interests.   • The case was decided on 'futility' of care, although  some would argue feeding is not futile.   Euthanasia is often defined as a gentle and easy death or  the act of bringing about this, especially in the case of  incurable or painful disease. It comes from the ancient  Greek for 'good' (eu) and 'death' ( thanatos ). The term  has changed its meaning over time. Huxtable (2007)  provides a modem working definition: The intentional  ending of life (whether the recipient wants this or not)  of someone which is motivated by the belief that this  will be in some way beneficial for them.   The act of euthanasia is conventionally classified in  the following ways:   1. The person whose life is at stake: may want help in  dying, not want help in dying or be unable to form  or communicate any decision on the matter; these  positions are, respectively, called voluntary, invol-  untary and non-voluntary euthanasia.   2. Positive acts (active) euthanasia vs. negative omis-  sions (passive) euthanasia; e.g. intentionally failing  to provide hydration to a patient so that they die  might be considered passive and giving someone a  lethal injection with the intention that they die is  clearly active. However, what about pulling out a  nasogastric feeding tube with the intention that a  patient dies? Is the action of pulling out the tube  active or does ceasing to feed the patient make this  passive euthanasia?   In Huxtable's definition there are six versions of eutha-  nasia: active voluntary, active involuntary and active  non-voluntary, passive voluntary, passive involuntary  and passive non-voluntary. To be called euthanasia,  rather than murder, this must always be considered to  be in the best interests of the person who dies (in tech-  nical legal terms, euthanasia remains indistinguishable  from murder, as it is the intentional killing of another  person). In addition, there is assisted suicide: one  may passively or actively facilitate the suicide of  another. To commit suicide is defined as to kill oneself  intentionally. To commit suicide oneself is not illegal,  but to encourage or assist the suicide of another is a    crime according to the 1961 Suicide Act, as amended  by the Coroners and Justice Act 2009. Assisted suicide  may include a variety of acts including giving advice  on ways to commit suicide; prescribing a medication  with the intention that the patient will choose to take  it in lethal dosage; as well as setting up devices to deliver  a lethal drug which are activated by the patient, rather  than the clinician.   Remember : Arguments about the rightness or  wrongness of different types of euthanasia may depend  on: what we consider to be alive or dead; who we  consider to be a person; what we considerto be a medical  treatment and even what we consider to be an intention.   • Suicide is accepted: it is commonly held that it is possi-  ble to rationally decide to kill oneself. Why then,  should those who are unable to physically kill them-  selves be denied the right to choose how and when  they should die, if in their opinion their life is no lon-  ger worth living? Perversely, it is the most disabled and  ill who are least able to end their own lives. Do these  people not deserve assistance if they wish to die?   • From passive to active euthanasia: the law currently  allows the withdrawal and withholding of life-  saving medical treatment. In the case of withholding  nutrition (as in the Tony Bland case) death comes  about due to dehydration and may take days or  weeks to occur. If this kind of death is morally per-  missible, why should we not also permit active  euthanasia, which by common intuition would  seem to cause less suffering?   • From painkillers to lethal injections: if we allow the giv-  ing of painkillers that shorten life as well as relieving  pain, and are unconvinced by the doctrine of  double-effect (see above), then why should we not  give drugs that simply shorten life?   • Autonomy: respect for autonomy should mean assist-  ing patients in bringing about their death when they  so request.   • Beneficence: euthanasia is often described as 'mercy'  killing. Death is seen as preferable to continued life  with a high degree of suffering.   • It is argued that palliative care is adequate to prevent  suffering, and if the major argument for euthanasia is  the reduction of suffering, the need for it is obviated.   • It is argued that, if people with terminal or distres-  sing illnesses are helped to die, there will be less of  a drive to find cures and treatments for those dis-  eases, especially if those new treatments are initially  expensive or burdensome.   • It is thought that some elderly or disabled people  would consider themselves to be a burden on their  family and carers, and while they may personally  prefer to continue living, would request euthanasia  in order to relieve their carers. It is also suggested that  some people would be encouraged to request eutha-  nasia by their families.   • A slippery-slope argument starts with something that  some argue is acceptable, e.g. assisted suicide for capa-  citous, able-bodied people and ends with something  we currently consider unacceptable such as involun-  tary euthanasia (murder) of people with mental ill-  ness and old people. So if we permit assisted-suicide  then people who cannot take their own life will ask  that we permit voluntary euthanasia (for people  who have capacity) - after all, to do otherwise discrim-  inates against the disabled. If we permit voluntary  euthanasia, then people will ask that they have this  service at a time when they are have lost capacity. Soci-  ety will ask if people who are capable can have this as a  good thing, then why should this not be provided to  people who have poor quality of life but cannot ask  for it, such as people with dementia or severe learning  needs. If we permit non-voluntary euthanasia on the  basis that it is a good thing, perhaps we should also  provide this benefit to all people who have a poor  quality of life and are a financial burden on society,  such as people with mental health problems and  the elderly or even unwanted children? If we accept  that people who are a burden to society should be  helped to die, perhaps we should also arrange a pain-  less death for people who are using resources that  could be much better used by healthier people, even  if those who are a burden to society object.   • Some healthcare professionals are opposed to  assisted-suicide and euthanasia on the grounds that    it is not what they consider to be part of the aims  of medicine. In their view, health care is about  prolonging life and reducing suffering, not causing  death. Furthermore, patients may not trust their doc-  tors, if part of their role is carrying out euthanasia.  Participating in assisted suicide and euthanasia  may consequently result in demoralized clinicians  who try less hard to heal and cure patients.   The key legal issue with euthanasia is that it represents  the intentional killing of another human being. If a cli-  nician, whether through an act or an omission, caused  the death of a person, they could face a number of crim-  inal charges, most notably: murder or attempted mur-  der, manslaughter or aiding and abetting suicide.   Someone is guilty of murder if they caused the death  of the victim, and intended to kill or to cause the victim  grievous bodily harm, and cannot raise a defence (a rea-  son which is acceptable in the eyes of the law for doing  so, such as self-defence). Because murder, manslaughter  and aiding and abetting suicide are all criminal charges,  a jury must be convinced beyond all reasonable doubt  before a conviction occurs. There are two key issues in a  murder charge against a clinician:   • Did the clinician cause the deceased to die? This  includes hastening the death of a patient by a few  hours. However, it can often be uncertain whether  the patient has died because of a doctor's actions  or despite them (i.e. from natural causes). If cause  of death cannot be proved, e.g. in the case of R v.  Cox [1992], the patient had been cremated before  the charges were brought, then a conviction for  attempted murder can still be sought.   • Did the clinician intend the death of the patient?  This is mainly direct intention, where it was the cli-  nician's purpose or aim to kill the patient. The courts  may also recognize indirect intention, where the cli-  nician realizes that death or grievous bodily harm  will arise as a result of his actions. In theory, indirect  intention may be relevant to treatments, where  death or the hastening of death is virtually a certain  side-effect of the treatment.   • In the case of R v. Can (1986), Dr Carr was charged  with murder of a terminally ill adult after he admin-  istered a massive dose of phenobarbitone. Though  the prosecution drew attention to Dr Carr's interest  in voluntary euthanasia, he was acquitted on the  basis that the overdose had occurred 'by mistake';  the judgement held that 'every patient was entitled    to every hour that God had given him, however seri-  ously ill he might be'. In this case, the courts did not  find intention (see above).   • In the case of R v. Cox [ 1992], Dr Cox gave a 70-year-  old woman with rheumatoid arthritis and multiple  other pathologies an injection of potassium chloride  (at her repeated request to die). He was convicted  with attempted murder and given a 1-year suspended  prison sentence. The GMC cautioned him, but  allowed him to continue practice conditional on  additional training in palliative care, as it believed  him to have acted in good faith. The court found  intention (in part because the drug used in order to  end the patient's life was not one with well-known  and accepted painkilling properties. Had Dr Cox used  an opiate or sedative, he might have tried to argue that  his intention was to relieve pain and hastened death  was a side-effect or 'double-effect').   In 1994, a House of Lords committee considered the  ethical legal and clinical implications of end-of-life  decision-making. Their recommendations were as follows:   • The law should not be changed to permit active  euthanasia   • The right of competent patients to refuse medical  treatment was strongly endorsed   • The law on suicide (and assisting suicide) should not  be changed   • There should be no new offence of 'mercy killing' (as  opposed to murder)   The government at the time accepted all but the last rec-  ommendation. An example of a lesser offence would be  that 'Assisting suicide' (maximum penalty of 14 years  imprisonment, whereas murder carries a mandatory life  sentence) .   The 1961 Suicide Act was recently simplified and mod-  ernized in line with recent case law by the Coroners and  Justice Act 2009. Sub-section (2) of the Coroners  and Justice Act 2009 replaces Section 2( 1 ) of the Suicide  Act 196 1 . It provides that a person commits an offence if  he or she does an act which is capable of encouraging or  assisting another person to commit or attempt to com-  mit suicide, and if he or she intends the act to encourage  or assist another person to commit or attempt to com-  mit suicide. The person committing the offence need  not know, or even be able to identify, the other person.  So, for example, the author of a website promoting sui-  cide who intends that one or more of his or her readers  will commit or attempt to commit suicide is guilty of  an offence, even though he or she may never know    the identity of those who access the website. The offence  applies to whether or not a person commits or attempts  suicide.   • Arranging for someone else to encourage or assist  suicide is also an offence.   • Even if the encouragement or assistance does not  result in suicide, it is an offence to attempt to assist  or encourage suicide.   • The act does not actually need to be capable of encour-  aging or assisting a suicide attempt if the person com-  mitting the offence believes it to be so (i.e. the wrong  advice is given ora harmless medication is prescribed) .   • Encouragement or assistance of suicide may include  threatening of another person or otherwise putting  pressure on another person to commit or attempt  suicide. This may include a course of conduct.   • Providers of information society services (such as  'right to die' websites), established in England, Wales  or Northern Ireland, are covered by the offence of  encouraging or assisting suicide even when they  are operating in other European Economic Area  states. There are exemptions for internet service pro-  viders from the offence in limited circumstances,  such as where they are acting as mere conduits for  information that is capable, and provided with the  intention, of encouraging or assisting suicide or  are storing it as caches or hosts.   The Director of Public Prosecutions is responsible for  instigating public criminal charges. In 2010, he pub-  lished guidance (see paragraph below) on the prosecu-  tion policy relating to charges brought under the Suicide  Act 1961 in England and Wales (as amended by the  Coroners and Justice Act 2009). There is a potentially  heightened risk of prosecution that doctors now face.    Public interest factors (summary) affecting  the decision over prosecution with  potential relevance for doctors (Director  of public prosecutions guidance)   • The victim did not have the capacity (as defined in  the Mental Capacity Act 2005) to reach an informed  decision to commit suicide.   • The suspect gave encouragement or assistance to  more than one victim, and these victims were not  known to each other.   • The suspect was acting in his or her capacity as a med-  ical doctor, nurse, other healthcare professional, a pro-  fessional carer or as a person in authority, such as a  prison officer, and the victim was in his or her care.   • The victim had reached a voluntary, clear, settled and  informed decision to commit suicide.   • The actions of the suspect, although sufficient to  come within the definition of the offence, were of  only minor encouragement or assistance.   • The suspect had sought to dissuade the victim from  taking the course of action that resulted in his or her  suicide.   • The actions of the suspect may be characterized as  reluctant encouragement or assistance in the face  of a determined wish on the part of the victim to  commit suicide.   Probably the most important recent case in the law  courts was that of Dianne Pretty. This case went beyond  the House of Lords and was heard in the European  Court of Human Rights (ECHR). Dianne Pretty was suf-  fering from motor neurone disease and wanted a decla-  ration from the DPP (see above) that her husband  would not be prosecuted if he assisted her to die. The  court considered her argument in terms of the European  Convention on Human Rights (see Ch. 1).   Herring (2010) summarizes the findings of the  House of Lords and ECtHR:   • Article 2 (The Right to Life) could not be interpreted to  include the right to control the manner of your death.   • Article 3 (The Right Not to Suffer Torture or Inhuman  or Degrading Treatment): The ECtLIR held that even if  a medical condition amounted to torture or inhuman  and degrading treatment, it could not be argued that  the state was inflicting it. For the state to authorize  killing would also bring it into conflict with Article 2.   • Article 8 (The Right to Respect for Private and Family  Life): The ECtHR held that even if prohibiting  assisted suicide did interfere with this, it was a justi-  fiable interference. The state had a right to protect  vulnerable people from being manipulated into  committing suicide.   • Article 14 (The Right to Protection from Discrimina-  tion): Mrs Pretty argued that if she was able-bodied,  she would be able to kill herself and that the law  would not be able to prevent that, but now that  she needed assistance, the law prohibited it. She  claimed that this amounted to discrimination on  the grounds of disability. The ECtHR held that if  there was discrimination, then this was justified by  the need to protect vulnerable people.   Much ethical and legal debate around end-of-life  decision-making, and whether it is a criminal act to    cause or hasten a person's death, revolves around the  concept of intention (see above). By doing something,  does the doctor intend that the patient will die, or is this  merely a foreseeable consequence?   This doctrine of double-effect (DDE) is first notably  mentioned in English Law in R v. Bodkin Adams. The  DDE, in essence, claims that it is sometimes morally  permissible to carry out an action that has bad conse-  quences which are foreseen but not intended. In the  case of end-of-life treatment, this means that doctors  may give strong painkillers to alleviate pain (intended  consequence), even though such medication may  shorten life (foreseen, but unintended consequence).   The DDE holds if, and only if, four conditions are  met (Hope et al 2008):   1 . The action (e.g. relieving pain) is good in itself   2. The intention is solely to produce the good effect  (i.e. the intent is to relieve pain, not to kill the  patient)   3. The good effect is not achieved by the bad effect (i.e.  killing the patient isn't the method by which the  pain is relieved - it is a side-effect of giving the pain  medication)   4. There is sufficient reason to permit the bad effect  (i.e. the relief of pain - that is the increase in quality  of life - justifies the reduction in quantity of life).   There are a number of criticisms of this doctrine put for-  ward by Glover (1977). The DDE has a distinction with-  out a difference. This is a criticism often levied by  utilitarians who claim that the DDE creates a distinction  between foreseen and unintended consequences in sce-  narios where the outcomes are without difference.  For example, if a pregnant woman with carcinoma of  the uterus required the surgical removal of the uterus  to save her life, with the foreseen but not intended death  of the fetus, the doctrine would find this morally  permissible. I lowever, if treatment involved the direct  killing of the fetus, this would not be acceptable, even  though the consequences (death of the fetus and life-  saving treatment of the mother) would be the same.   The DDE also suffers the problem of clarity. Acts can be  described in different ways according to one's view-  point. For example, a suicide bombing on a bus may  be described as making a political protest or as killing  a busload of innocent people. Furthermore, it is unclear  as to whether the deaths of the people on the bus are  intended or merely foreseen consequences.   In the case of R v. Bodkin Adams [1957], Dr Adams was  tried for murder after the death of a patient who had  made him a beneficiary of her will. He had prescribed  heroin and morphine to an 80-year-old woman follow-  ing a stroke. It was not the first patient who had left him  items in their wills. The judge in this case held that:   The defence in the present case was that the treat-  ment given by Dr Adams was designed to promote  comfort, and if it was the right and proper treat-  ment, the fact that it shortened life did not convict  him of murder.   1. It is uninformed, in that the incidence of double-  effect is overstated and the dangers of appropriate  medication are overplayed.   2. 'Double-effect' has unclear legal status: Does it mean  there is no intention to kill, there is no killing or  there is a justified killing?   3. It is unfair in that it appears to be applied selectively  by courts.   4. It is dangerous in that it may overlook killing  patients (where painkillers or sedatives are used)  or deprive patients of relief from pain or distress  through inadequate analgesia or sedation (because  staff are afraid of being accused of murder).    Doctors traditionally diagnose people as dead on the basis  that they are pulseless, apnoeic, with fixed pupils and no  heart sounds. However, in order to be able to diagnose  someone on a ventilator as dead, the concept of brain-  death or brainstem death was developed. From a legal  point of view in the UK, death is equated with irreversible  loss of brainstem function. The UK Medical Royal Colleges  put forward criteria for brainstem death in 1976  (Anonymous 1976, 1979). Hypothermia and drug intoxi-  cation must be ruled out as differential diagnoses, and the  tests must be repeated (criteria include the absence of spon-  taneous respiration or brainstem reflexes). The doctor  making the diagnosis must be a consultant and a second  opinion must be sought from another doctor (both must  be 5 years post-full GMC registration). The official time of  death is the time of completion of the second set of tests.  The concept of brain death was accepted as the legal defi-  nition of death in the UK in the legal case Re A [ 1992] .   In the USA, the term 'brain-death' infers that the neo-  cortex has also been destroyed (the concept of 'whole  brain death'). 'The Harvard Criteria', a protocol for  defining brain-death, includes four major criteria for  'brain-death':    Brainstem death (the UK version of brain-death) is a  compromise between two views:   1 . That a person (or 'self) ceases to exist when they irre-  versibly lose the capacity for consciousness   2. The human organism dies only when it ceases to func-  tion in an integrated way (biological death).   Remember. Brainstem death criteriaare generally applied  to patients who cannot be pronounced dead without  switching off a ventilator, NOT to everyone who dies.  Confirmation of death is usually done by junior doctors or  specially trained nurses in UK hospitals. But think -what  makes you decide to pronounce one person dead, and  call the cardiac arrest team for someone else?   of the brain as the organ critical to identifying the death   • after irreversible cessation of brain function, all  other organ systems will inevitably cease to function   • unlike other organ systems, brain function, once  lost, is irreplaceable   • irreversible loss of brain function is synonymous  with permanent loss of consciousness   • loss of sentience is a feature of loss of brain function   • the integrative function of the brain is lost if the  brain ceases to function   • death on the basis of loss of brain function is doing no  more than recognizing overtly the reason underlying  the traditional diagnosis of death following cessation  of the blood circulation. In other words, someone  whose heart or lungs fail, dies when the brain dies -  in theory, the heart and lungs can be replaced   • if a patient is brain-dead, but their body is main-  tained on an artificial ventilator, the cardiovascular,  gastrointestinal and urinary systems continue to  function. The body is warm, consumes oxygen and  has a pulse. This is not a 'dead body', even if the  patient is categorized as dead. The patient as a person  is dead, but the body in some very important senses,  is alive. A brain-dead, ventilated body is still recog-  nized as a living organism.    Organ transplantation is considered here in terms of  end-of-life issues, consent and other issues concerning    the process of transplantation in and of itself. It is also  considered as a resource-issue in the Chapter 5.   Notably, the 1998 Department of Health code of  practice for diagnosing brain-stem death also deals  extensively with the issue of seeking organs for trans-  plantation. The most suitable cadaveric donors are  brainstem dead individuals who have died in intensive  therapy units (ITU), who are younger than 35 years (40  for women), and who have no history of organic heart  disease. In the UK during 1989 and 1990, an audit  (Gore et al 1992) found that of 24000 people dying  in intensive care, 3200 had a possible diagnosis of  brain-death by conventional definition. However, only  37% of these went on to become organ donors. Some of  the reasons given for the loss of potential donors  included:   • Brainstem death tests were not carried out in 39% of  the cases   A majority of patients in the UK would accept a trans-  plant if they really needed it; only a small minority  would refuse one on cultural, moral or other grounds.   A number of surveys asked respondents about their will-  ingness to donate their oum organs and their findings  were very consistent, with 7 in 10 people (70%) willing  to donate, and only 14% against donating their own  organs. This indicates a widespread willingness among  the UK population to donate their organs after they die.  However:   • only one in five people regularly carried a donor card  in the early 1990s (shown consistently throughout  the three surveys), and approximately 70% did not  have a donor card. The OPCS survey showed that  only 27% of people without a card at that present  time would think about getting one in the future.  This leaves a large section of people who claim to  be in favour of organ donation, but are unwilling  to act   • The NHS central organ donor register was launched  in October 1994, yet 5 years later, less than 14% of  the population had registered.   The legislation governing organs and tissues has been  incorporated into the Human Tissue Act 2004:    • The Human Tissue Act 2004 is a framework for reg-  ulating the storage and use of human organs and tis-  sue from the living, and the removal, storage and use  of tissue and organs from the deceased, for specified  health-related purposes and public display. It  extends to England, Wales and Northern Ireland.   • The Human Tissue Act 2004 repeals and replaces the  Human Tissue Act 1961, the Anatomy Act 1984 and  the Human Organ Transplants Act 1989 as they  relate to England and Wales, as well as legislation  in Northern Ireland.   • The Act was produced in the wake of the Alder Hey  Inquiry, and as a result, places emphasis on the  importance of consent when storing or utilizing tissue  samples.   • Cell-lines are excluded from the Act, as are hair and  nail from living people. Live gametes and embryos are  excluded as they are already regulated under the  Human Fertilisation and Embryology Act 1990.)   • The Act provides for the institution of the ‘Human  Tissue Authority', a regulatory body charged with the  responsibility of inspecting and licensing those  organizations involved in the storage and use of  human tissue.   • The Act specifies criminal punishments for those  acting outside the legislation.   • The Act prohibits the sale of any human material,  thereby making a transplant organ market illegal.   • The Act permits cold perfusion of cadaveric organs to  improve the success of subsequent transplants   • The Act does not affect the rights of coroners to  demand a post-mortem and retain tissue without  consent if they deem it necessary.   • A new offence of DNA ‘theft’ applies throughout the  UK, as the act makes it illegal to take samples  (including gametes and embryos, hair and nail)  without consent for the purpose of analysing  someone's DNA.   • the deceased gave express consent during their life-  time, provided that: there is no suspicion they may  have changed their mind, and the deceased did  not have religious views forbidding the removal of  organs from the body after death. There is no legal   requirement to respect the wishes of the next of kin if  they object and the deceased is on the organ donors'  register, but this is respected in relevant codes of  practice   • the person 'lawfully in possession of the body' may  authorize transplantation if there is no recorded dec-  laration by the deceased. This can occur only when  'having made such reasonable enquiry as may be  practicable' he/she can be sure neither the deceased  nor the 'surviving spouse, or any surviving relative'  has any objection.   • the person 'lawfully in possession of the body' is usu-  ally the Hospital Authority - it is not the relatives,  until the deceased's legal representative (e.g. relative)  has claimed the body   • what 'reasonable enquiry' entails is vague and, tech-  nically, 'any' surviving relative - however remote -  can object to transplantation. As can a 'surviving'  spouse, even if the couple has been separated for  many years. In practice, hospitals usually seek the  opinion only of those they consider to be 'close  relatives'   • there is no specific penalty for breach of this statute.  However, healthcare professionals are most likely to  be sanctioned by the GMC for professional miscon-  duct, should they act in a manner inconsistent with  professional guidance.   Remember : A person has no legal right in common law  to determine what happens to their body after death.   A body, or part of it, cannot be the subject matter of  ownership.   The field of organ transplantation raises a huge number  of ethical questions. One way of thinking about the eth-  ical dilemmas raised is by considering the problems  caused by:   There are ethical questions about the definition of death.  Should the point of death be brainstem death or death    of the entire brain cortex? Should we be allowed to keep  brain-dead patients indefinitely ventilated, if there is no  need for their organs at the time of their death or to use  them as self-replenishing blood banks? Should we  choose to intubate dying patients in order to ventilate  them when they die - even if it is of no benefit to them?  There are also questions about supply. Cadaveric dona-  tion has often in the past relied on young healthy people  who have died as a result of accidents - now fewer acci-  dents as a result of better safety measures (e.g. laws on  seatbelts and motorcycle helmets) mean fewer available  organs for transplantation.   Organ transplants legislation is strict with regard to  unrelated donations - perhaps because it assumes that  altruistic donation is less likely between unrelated indi-  viduals. However, it seems plausible that family mem-  bers may be under significant pressure to volunteer to  donate an organ to an ailing relative. Children in partic-  ular may be pressured into donating to an ailing sibling.  This is chiefly problematic, in that it may undermine  autonomy and consent, and tissue donation. This and  other ethical issues must be considered when thinking  about how to increase organ supply.   There are a number of different propositions for increas-  ing organ supply. These include:   One of the problems with the current system (an 'opt-in'  system) is that often no-one knows how the donor would  have felt in life about donating organs, so relatives are  consulted at a time when they are newly bereaved. The  mandated choice would force citizens to answer whether  or not they wish to donate their organs after death; this  choice would be held on a central register and then held  to be binding in the event of their organs being suitable  for donation. People could be asked when registering  with a GP or via electoral registration.   This system would not require everyone to be asked,  rather it would assume that organs will be available  for donation after death, unless individuals had regis-  tered the choice not to donate organs after death. At pre-  sent, the wishes that the deceased had expressed in life  are usually subordinate to those of the relatives. There  has traditionally been more concern for the grieving  process of the newly bereaved rather than for the need  of those on the organ waiting list. Yet, if we weigh the    interest of the relatives (in not having organs removed  from their loved one) against that of patients who need  organ transplants in order to remain alive, we are hard-  pressed to justify being in favour of the relatives.   There are a number of ways this might work. Money could  be paid to living donors - to donate kidneys for example.  Or certain rewards could be given to the families who  agree to the donation of organs from their relatives, e.g.  help with funeral expenses. Utilitarian arguments would  support an organ market if it led to more lives being saved  at a reduced cost; such a system might well benefit donors  (or their families) and those in need of treatment. How-  ever, arguments against this method include:   • It is contrary to human dignity to commodify the  human body by allowing the sale of organs   • It would lead to exploitation of the poor by coercing  the least well-off to sell their body parts. This is cur-  rently illegal in the UK.   This is the transplantation of organs from animals to  humans. Disadvantages of xenotransplantation may  include:   • The cost of producing sterile transgenic animals  (probably pigs) - which will have to be researched,  tested and pass stringent safety requirements.   • Whether it is appropriate to spend limited resources  researching this technology when there are other  methods to increase organ supply - such as an  'opt-out' system   • Whether the risk of introducing animal pathogens  into the human population is justified   • The ethics of treating animals as disposable com-  modities in this manner - raising animals simply  as a source of spare organs. However, the widespread  acceptance of factory farming and other livestock  practices demonstrates a readiness to treat animals  as commodities (although this is not necessarily  an ethically justifiable position).   • Outline five views on the moral worth of the human  embryo.   • What are the ethical and legal issues in contraception  and sterilization?    • What are the flaws in the ‘it is unnatural'  argument in cloning and other reproductive  technologies?   • What is the difference between voluntary, non-  voluntary and involuntary euthanasia?   • What is the key legal guidance for doctors on the  issue of assisting suicide?   • What is the difference between an act and an  omission in health care?   • What is the relevance in ethics and law of having a  definition of death?   • What are the key ethical issues in human organ  transplantation?   Anonymous, 1976. Diagnosis of brain death. Statement  issued by the honorary secretary of the conference of  Medical Royal Colleges and their Faculties in the United  Kingdom on 11 October 1976. Br. Med. Bull 2 (6045),  1187-1188.   Anonymous, 1979. Diagnosis of brain death. Memorandum  issued by the honorary secretary of the conference of Medical  Royal Colleges and their Faculties in the United Kingdom on  15 January 1979. Br. Med. Bull. 1 (6159), 332.   Coroners and Justice Act, 2009. Explanatory Notes: Section 59.  Online. Available at: http://www.legislation.gov.uk/ukpga/  2009/25/notes/division/5/l/2/l/8 (accessed 15.04.12.).   Department of Health, 1998. A Code of Practice for the  Diagnosis of Brain Stem Death. HMSO, London.   Gillon, R., 2001. Is there a 'new ethics of abortion'? J. Med.  Ethics 27, 5-9.   Glover, J., 1977. Causing Death and Saving Lives. Pelican  Books, Harmondsworth (Chapter 6).   Gore, S.M., Cable, D.J., Holland, A.J., 1992. Organ donation  from intensive care units in England and Wales: two year  confidential audit of deaths in intensive care. Br. Med. J. 304  (6823), 349-355.   Herring, J., 2010. Death and dying. In: Law Express: Medical Law,  second ed. Pearson Education, Harlow, pp. 96-107.   Hope, T„ Savulescu, J., Kendrick, J., 2008. Medical Ethics and  Law: The Core Curriculum, second ed. Elsevier, London.   Human Tissue Act, 2004. Explanatory notes. The National  Archives. Online. Available at: http://www.legislation.gov.  uk/ukpga/2004/30/notes/contents (accessed 02.01.12.).   Huxtable, R., 2007. Euthanasia, Ethics and the Law: From  Conflict to Compromise. Routledge-Cavendish, London.   Jonsen, A., Siegler, M., Winslade, W., 2010. Clinical Ethics,  seventh ed. McGraw-Hill, New York.    Kennedy, I., Grubb, A., 2000. Actions for damages by children  and parents arising from occurrences before birth. Medical  Law, third ed. Butterworths, London.   Re B (Adult: Refusal of Medical Treatment), 2002 2 FCR 1.    R (Smeaton on behalf of SPUC) v. The Secretary of State et al. , 2002  2 FCR 193.   Sokol, D.K., 2009a. The death of DNR; can a change  of terminology improve end of life care? BMJ 338, 1043.  Sokol, D.K., 2009b. The slipperiness of futility. BMJ 338, 1418.   Harris, J., Holm, S. (Eds.), 1998. The Future of Human  Reproduction. Oxford University Press, Oxford.   McHale, J., Fox, M., Murphy, J., 1997. Health Care Law: Texts  and Materials. Sweet & Maxwell, London.   This chapter takes a broader look at the rights and wrongs  of the provision of health care in society. To a certain  degree, all healthcare professionals will have to make  healthcare allocation decisions in the context of finite  available resources. The first decade of the twenty-first  century has seen a global financial recession, with cuts  to many public services, including health care. While  this book cannot predict what will happen over the next  10 years, it is worth considering the ethics of commis-  sioning and resource allocation in health care.   This chapter examines the difference between  commissioning and rationing, and examines relevant  ethical concerns with the commissioning process.  The chapter then looks at the ethics of resource alloca-  tion and concludes with a suggestion of how these  kinds of decisions might be challenged (and defended)  in court.    Commissioning is more than just a resource allocation  process: it involves four stages:   2. Identify capacity to meet the need (referred to as  tendering)   3. Delivery of service from that capacity (referred to  as procurement)   4. Evaluation of the service (referred to as contract  management). Evaluation should be linked to  ways of improving or replacing a service which is  inadequate.   By contrast, resource allocation is concerned with  catering to established need as much as possible, using  existing resources. 'Rationing' is a word which implies  that there are not enough resources to meet every-  body's wants or needs, and, therefore, however well  resources are allocated, someone will be dissatisfied.  Consider for example the idea that resources are best  allocated according to local priorities. If local priorities  mean that, e.g. people in Oxford do not get a service  that is provided in London, a dissatisfied person in  Oxford might use a phrase like 'postcode lottery' to  describe the unfairness of being denied something  because of where he lives.   A need is what is necessary for a person to exist (e.g. air,  food, shelter) or to flourish (health). As well as biological  needs, there are culturally specific needs such as educa-  tion. Needs are often contrasted with desires. Many reli-  gions and world views endorse the idea that people with  excess have a duty to help the needy. The concept of need  is linked to the concept of justice and rights (see below).  For example access to health care has been argued to be a  human right. Consider how we decide what is a need and  what is a desire. If there is a need, then who should  address that need? For example the need for health care  in the UK is addressed by the State and funded by means  of taxation. This can then raise the question of what is a  healthcare need? Is, for example, the ability to found a  family a healthcare need on the grounds that infertility  treatments are delivered by healthcare professionals?  Who should address this need and to what degree? These  are questions debated when deciding the proportion of  NI IS resources allocated to infertility treatments.   There are a number of things which contribute to public  health which are not in the remit of healthcare provi-  ders, and therefore are not paid for out of money allo-  cated for health care. These might include:   • Traffic calming measures such as speed bumps to  reduce road traffic accidents   • Long-term care to assist the elderly and chronically  infirm with activities of daily living   • Health education in schools, advocating healthier  lifestyles and the avoidance of risky behaviour.   However, there are a few areas that are open to dispute,  either because they are provided in the healthcare setting  but not necessarily seen as part of health care (e.g. chap-  laincy services in hospitals) or where the theoretical basis  for the treatment or evidence of effectiveness is ques-  tioned (e.g. homeopathy or crystal healing).   1. Micro-allocation: decisions about treatment between  patients. Doctors tend to be concerned with deci-  sions of micro-allocation, i.e. deciding which pa-  tients get which treatments.   2. Macro-allocation: decisions over the share of a  society's total resources that are devoted to health,  and the division of the healthcare budget between  possible uses. Health authorities and the govern-  ment make decisions regarding macro-allocation.   Decisions about commissioning and rationing must be  ethically 'sound'. According to Gillon (1994) we should:   • resources must not be wasted - e.g. do not give treat-  ments we know do not work   • respect patients' rights (e.g. to receive what they are  entitled to) and respect their choices as far as  possible   • obey morally acceptable laws. Gillon suggests that  the best way to change morally unacceptable laws  is via the democratic process, e.g. lobby the govern-  ment to change the law or vote for a government that  will change the law.   Consider the overlap between ethics and law: if a deci-  sion followed the above points well, it might be harder  to challenge that decision in court.   Providers of services should not direct the commission-  ing process. This is because they may prioritize their  own service or their own patients over those of others  without valid justification. Sheehan (2011) and others  argue that doctors should act as patient-advocates rather  than prioritize resources at a financial level, as this  might compromise the doctors' desire to obtain the best  care for each and every patient.   If resource allocation in the UK previously depended on  implicit choices between which patients and which dis-  eases to prioritize, choices made by committees behind  closed doors, then it was surely associated with a high  degree of trust in the people who made the decisions  (often but not always doctors). While trust in UK GPs  remains high, at a personal level, dilemmas of funding  are increasing as individual patients are denied health-  care interventions on the basis of cost-effectiveness or    finite resources. Spicer (2010) suggests that trust may  not survive an environment of financial constraint  if GPs motives are unclear. Patient involvement in  decision-making may assist in this spirit of openness.  Part of the problem is that the patient depends on the  provider for information about which service or treat-  ment is needed. The provider (who is trained in medi-  cine) has a potential influence over the choices made  by the patient (who usually is not).   The closer commissioning and resource allocation is to  the end-user, the better, surely? But should people be  allowed to make selfish decisions, whether the commis-  sioning agenda is dominated by one powerful lobby  group, or more local decisions determined by the loud-  est and most articulate people rather than the neediest?  Sheehan (2011) argues that choice and empowerment  are irrelevant in decisions about scarce resources. He  uses the following scenario:   A baker has one loaf and three customers. Each  customer has autonomously chosen to purchase  a loaf of bread before they enter the bakery. In sell-  ing the loaf to any one of his customers, the baker  would respect that customer's autonomy. His  problem is precisely that he cannot respect all  of their autonomous choices. He must decide  which customer gets the loaf and so which person's  autonomy he should respect. He might sell the loaf  to the first person into the shop, adopting a first  come, first served principle of justice. He might  divide the loaf into three so that everyone gets an  equal but unsatisfying share. One might argue that  he should sell the loaf to the hungriest customer!   There are many more ways of approaching distributive  justice here, each of which decides between autono-  mous choosers rather than respecting their choices.  Resource allocation decisions in the NHS are necessarily  decisions between patients and so do not involve con-  siderations of respect for patient choice. Instead, justice  is a relevant consideration in deciding how to distribute  resources fairly (Fig. 5.1).   The key concern with the involvement of commercial  companies in a health service provided by the state  for patients, is a conflict of duties and interests. The pri-  mary legal duty of company directors in the UK is to act,  'for the benefit of the members [of the company] as a  whole' (Companies Act 2006 s.172) and non-financial  considerations are made subsidiary to this within  (s.172). The only benefit from a company for share-  holders is financial; profits paid out as dividends.   In 1 989, the State of Oregon (USA) passed the Basic Medical Service Act. The Act required all those in employment to be  covered for health insurance by their employers, and extended state health insurance provision cover for the poor  unemployed from 42% to 100% of healthcare costs.   The price of this universal coverage was an explicit, democratically led, system of healthcare rationing. Around 700  medical conditions were paired with treatments, and a state Health Services Commission decided on priority setting  between them. In doing so, they used a measure of cost utility analysis, but also input from community meetings and  ‘Citizen's juries' to aid their deliberations.   The State of Oregon embraced at least two ethical approaches to distributive justice: cost-utility and public  participation, in a way that had not been done before. This was done in an open and transparent manner, in that the  way decisions were made was open to scrutiny.   • private providers favour more routine treatments,  like hip replacements and cataract operations,  leaving the NHS to deal with more complex, costly  treatments, and have often been guaranteed pay-  ments, even if they have not treated enough  patients   • private companies pay dividends to their share-  holders, taking money away from patient care or  investment in training or research   • as NHS hospitals lose routine procedures to  commercially ran clinics, students and junior doc-  tors get fewer opportunities for practical training.   • having more providers of care than is actually  needed is wasteful and an expense the country can-  not afford. Some NHS Trusts may have to advertise  to attract patients, money which should and could  be spent on patient care   • patients are now able to choose where to have any  elective treatment. Included in this choice will be  commercially ran clinics or private hospitals which  are contracted to provide NHS work. If a patient  chooses to have that treatment in one of these  private hospitals or clinics, the funding for that treat-  ment is taken out of the NHS. A possible consequence  may be that some NHS services do not have enough  funding to continue    • the private sector is also involved in the building and  running of NHS hospitals in England under a  scheme called Private Finance Initiative. They build  the hospitals which the NHS then pays for over a  period of 25-30 years. But these costly contracts  have left many hospitals with crippling debts.    The usual answer to this question is that resources  (money, doctors' and other health professionals' time,  equipment and so on) are not infinite. When demand  exceeds the available resources, there comes a need to  decide who receives treatment and who does not.   While resources are not infinite, a budget can be traded  off other budgets - priorities can be reassessed - so if this  year, the budget for the NHS is f 130 billion, it could be  increased next year if people are happy to pay higher rates  of tax. Demand for a service is not inevitably infinite -  rather, 'the amount demanded of a free service is deter-  mined at the point where customers see no additional  benefits to be gained from additional recourse to the ser-  vice in question'. This could be at quite modest levels  (Harris 2001).   Having said this, it is generally accepted that some deci-  sions have to be made with regard to the allocation of  resources. If this is the case, what are the grounds  (Fig. 5.2) upon which rationing decisions could be made?   Hippocratic duty - prioritizing the common good over the individual is morally wrong! The hippocratic doctor makes the  care of his patient his first concern   Aristotle: treat equals equally and unequals unequally according to morally relevant inequality  Utilitarianism: act to maximize welfare for the greatest number (at the least cost)   Libertarianism: (the right not to be killed and to possess property) - in simplistic versions, each for him/herself   Marxism: (not communism) - take from each according to ability and give to each according to need   Rawls theory of justice: A rational person who makes a decision behind a veil of ignorance (without knowing who will  benefit) will look after the least well-off    The following are some suggestions regarding the grounds  upon which we could choose between claimants upon  resources (these grounds are more specific to health care  rather than the bakery example used above):   • Increase in quantity of life as a result of treatment   • Increase in quality of life as a result of treatment   • Prognosis - treat those with the best chance of a suc-  cessful outcome   • Past contribution or future (expected) contribution to  society - who has paid the most taxes? Or will do  in the future? Should criminals receive poorer health  care?   • Personal responsibility - should smokers and alco-  holics have equal access to health care to people  without such harmful habits? What about skiers  and people injured while, e.g. quad biking? What  about risky professions, such as firemen?   • Moral character and fault - de-prioritize treatment for  those seen to be at fault or make them pay more, e.g.  would you charge a person for attendance at an emer-  gency department for a minor complaint (e.g. nausea  or cuts and bruises) related to alcohol overuse?   A number of alternative theoretical foundations for  deciding how to allocate scarce resources will be  explored below.   The quality-adjusted life years (QALY) theory is an  approach to cost-effectiveness and is a utilitarian theory  (see also Ch. 1), in that it attempts to assign numerical  values to types of health care so that the interventions  producing the cost-effectiveness and therefore the greatest  good to the greatest number may be identified. It attempts  to bring two considerations into a single framework  when assessing the cost-effectiveness of healthcare  interventions:   These two criteria are used because both are thought to  be central to the purpose of health care. Medicine is not  seen simply as a method of saving lives (increasing life  years); part of its role is to alleviate suffering, that is  improve quality. QALYs combine both criteria in a single  measurement.   The essence of a QALY is that it takes a year of  healthy life expectancy to be worth 1, but regards  a year of unhealthy life expectancy as worth less  than 1. Its precise value is lower the worse the    quality of life of the unhealthy person (which is  what the 'quality-adjusted' bit is all about).   This theory allows healthcare interventions to be scored  according to how many QALYs they result in. When this  is considered along with the cost of an intervention,  health interventions can be considered in terms of cost  per QALY. This allows cost-effective analysis to take  place. Without such a system, it can be hard to compare  widely divergent medical treatments.   QALYs allow two sorts of decisions to be made when  choosing health care. These are:   1 . to determine which therapy is given to an individual  patient: this is effectively a decision made according  to the rules of evidence-based medicine   2. to determine which patients receive treatment at all:  a cost-effective analysis.   Like utilitarianism, QALYs are popular because they tap  into two main moral intuitions. First, that we ought to  promote well-being as measured - the 'quality' part, and,  second, that we ought to maximize the amount of well-  being - the 'quantity' part. They are also useful to health  economists, who can assign a financial cost per QALY.   2. QALYs are arguably difficult to calculate practically.  The quality part can be derived from conducting sur-  veys of a large number of people to determine what  is beneficial, and this can vary depending on who  you speak to.   The argument from justice claims that QALYs are sys-  tematically biased against certain sections of the popu-  lation and that this means they are an unfair basis upon  which to allocate resources. Those groups which are not  favoured by the QALY system include the disabled, the  chronically ill and the elderly. This bias is illustrated by  considering the following scenario.   Imagine Tom, Dick and ITarry are in a car crash.  Tom is 20 years old, with no previous disabilities.  Dick is also 20 years old and is blind. Harry is 40  and was previously well. The car crash results in all  three sustaining similar injuries. They all arrive at the  Accident and Emergency (A&E) department at the  same time, but the hospital has enough resources  for only one patient to be treated.   Assuming that all three patients could be returned to the  same level of health they had before the accident, the    QALY system would oblige the hospital to treat Tom  over the other two. The reasons for this are that Tom will  live longer than Harry (assuming both have an average  life-span), therefore, even though both can be returned  to perfect health, treating Tom will lead to a greater  number of QALYs being accrued. (Assuming the average  life expectancy to be 75, treating Tom will lead to 55  QALYs vs 35 QALYs for Harry.) While many people  think that we should treat children in preference to  the very old, it becomes less clear whether we should  treat 20-year-olds instead of 40-year-olds, or indeed  30-year-olds instead of 35-year-olds.   Tom will also be treated in preference to Dick,  although both have the same life expectancy. Because  Dick already has a disability, treating him will not  restore him to perfect health. Each year of life after treat-  ment will be worth less than 1 on the QALY scale - so  his total expected QALY score will be less than 55. John  Harris (1995) has called this problem 'double jeop-  ardy'; not only does Dick have the misfortune to be  blind, but this disability can also, under the QALY sys-  tem, adversely affect the priority assigned to him in  receiving treatment for an unrelated injury.   The problem of calculating QALYs is a more practical  difficulty. For example, how can we compare the quality  of life of being blind as against that of being paralysed?  The answer tends to depend both on how the question  is asked and which groups of individuals answer the  question. Disabled groups tend to rate the quality of life  of disabled people much higher than do non-disabled  groups.   John Rawls (1972) utilizes a hypothetical device he calls  the 'veil of ignorance' - this is part of an explanatory  model to explain an ideal social contract - for Rawls this  is the type of contract it would be rational to choose if  we had been given the chance. Unlike the QALY theory,  the supreme goal in Rawls' theory of justice is not max-  imization of welfare as such, but treating those who  have the greatest need for treatment. This theory empha-  sizes fairness rather than absolute welfare.   Thus, in order to further fairness (justice), steps must be  taken to avoid selfish interest in the original position  (from which the social contract is made) as follows:   1. If people are self-interested, they will seek advan-  tages at the expense of others whenever they can   2. If people did not know how to advantage them-  selves, they would not 'rationally' try to advantage  themselves   3. The veil of ignorance disguises salient information  that they could use to advantage themselves   4. If we can suppose what the social contract would  have been, had it been designed from behind a veil  of ignorance, it would be fair   5. If we could be sure of this, it would also be fair to  hold people to this in the real world.   • People would choose to have an equal right to the  most extensive basic liberties compatible with every-  one having those liberties: that is, there would be  MAXIMUM FREEDOM.   • As people don't know where they will be in society,  they will accept the prudence of making the situation  of those on the lowest rung as good as possible (MAXI-  mum welfare for the MINimally well off). Because  people are rationally self-interested, they will adopt  a MAXIMIN POLICY (i.e. a worst-case scenario).   Len Doyal (adapted from Berney et al 2005) argues that  the following principles should apply to healthcare  resource allocation:   • Healthcare needs should be met in proportion to  prevalence of the needs   • Those in similar need should have an equal chance  to access health care   • Scarce resources should not be provided for ineffec-  tive health care   If rules have to be set up to guard NHS resources by not  providing or restricting particular services to particular  cases, patients or their advocates (and that may be  you) need to argue why the rule is unreasonable or  the case is exceptional. In the UK, funding panels  (sometimes called 'low priorities panels') often decide  whether a case should receive NHS funding.   While it is unlikely that medical students could be  tested on this in a multiple-matching question, this  can be discussed in class, or tested in a short answer  or essay in the following way:   You are on a funding panel and have been asked to  consider the following cases:   • A 34-year-old woman has developed an apron of  skin after successful weight reduction treatment.  She says that she is depressed by the effect of this  on her body image and she has undergone counsel-  ling. She states that it is also affecting her marriage.   • A 1 4-year-old girl wants leg-lengthening surgery. She  would like the chance to be an air-hostess when she  is older and her short stature is likely to prevent this  being a possibility.   • A 48-year-old married father of three children wants  to be given a new chemotherapy drug for lung  cancer. Local oncologists think this may improve  his 5-year survival chances by 10%.   • The mother of a 2-year-old boy with eczema which is  affecting his development and is unresponsive to  standard treatments, would like to take him to a  homeopathic hospital.   You have the funds for one of the above treatments.  Why would you fund any of the above cases' treatment  and what would be your reasons for not funding the  others? Remember that your decisions should be consis-  tent and fair. This is helped by having a process (such as  using the four principles of bioethics to look at each case) ,  and having consistent policies (such as only funding treat-  ment for which there is an evidence base unless you have a  good reason to make an exception). Remember that you  need to have rules in order to make exceptions!   The ethics of transplantation has been discussed in  Chapter 4 from the point of brain-death, end-of-life  decision-making, consent and the law. Here, organ  transplantation is discussed in terms of resource alloca-  tion. Transplants are often seen as expensive, heroic  experiments, rather than life-saving or life-improving  procedures; it is perceived that they drain resources from  routine and more cost-effective treatments. One argu-  ment against allocation of resources to transplant sur-  gery would be that many of the diseases which lead to  the need for transplants are modifiable by lifestyle  and early intervention.   • kidney transplants were quoted as costing £4710,  whereas hospital/home haemodialysis costs an extra  £21 970/£17 260 (respectively).   • a heart transplant costing £7840 may be the only  recourse to save a patient's life, whereas to remove  a malignant tumour from the brain (which is a reg-  ularly performed life-saving intervention) would  cost £107 780.    Although these figures (prior to 2004) are relatively  crude, they show that transplantation compared well  with other interventions that NLIS resources already  covered. If you consider the earlier argument about fair-  ness and consistency, this makes it harder to argue that  kidney transplants should not be provided based on  cost-efficiency alone. If you argue against organ trans-  plantation based purely on economic cost efficiency,  then, by the same argument, heart transplants and  brain tumour surgery should be abandoned as well.   Transplant organs are a good example of a resource  which has to be rationed, as there are many more people  who claim a need to them than can have them. At the  end of March 2011, 7800 patients were on the waiting  lists in the UK (with a further 2783 temporarily sus-  pended because they were unfit or otherwise unavail-  able for a transplant). Several thousand more who  could benefit were not on the waiting list. This is  because only those who are considered to have a 'rea-  sonable chance' of receiving a transplant are put on  the list. The figure of about 1000 people dying per  year (or three deaths per day) due to the shortage of  donor organs is usually quoted (BMA Medical Ethics  Committee 2012).   Organs for transplantation are a good example of a  resource which has to be rationed, as there are many  more people who can claim a need for them than can  have them. While it is worth thinking about ways to  decrease the demand on organs, and/or to increase the  supply of organs, it is essential to have a fair and  consistent way to decide who receives an organ for  transplantation (i.e. to ration them) while the need  exceeds the supply.   Given that there is a shortage of organs, who should  get priority in receiving a transplant? Currently, chil-  dren receive organs in preference to adults, on the  basis that they will derive greater benefit. So a 16-  year-old will receive a new kidney in preference to a  19-year-old. However, a 19-year-old will not be trea-  ted in preference to a 59-year-old. Both are adults  and therefore have an equal right on the basis of age  to an organ transplant, as the age of 60 has been the  arbitrary age at which someone is deemed too old to  receive a transplant on the NITS. This seems inconsis-  tent, as the 59-year-old has less life to gain and greater  chances of surgical complications. However, the 59-  year-old might argue that he has an equal right to life,  and should not be discriminated against solely on the  basis of age, and the 60-year-old may argue that he is  healthier than many 59-year-olds, with just as much  life expectancy.   If a decision about resource allocation in healthcare  were to be challenged in court, two key questions would  be asked about that decision:   • Was the procedure for making the decision reason-  able? (This might suggest the decision-making pro-  cess is consistent and fair)   • Were the grounds for making the decision reasonable  and relevant?   According to Hope et al (2008) there are some key ways  that the courts might be involved.   For example a patient might claim that in not funding a  particular service, the NHS failed in its statutory duty. If  the claim succeeds, the court would strike down the  decision not to fund and ask the decision-maker to  re-think the decision using relevant criteria and with  due process. Judicial review may also be used to ques-  tion legislation as well as policy (see Ch. 1).   This would involve a private claim to the effect that the  decision-making process had been negligent in some  way, in that it fell below the standard of a reasonable  and responsible body. While there would not necessar-  ily be an obligation to reverse the decision, a successful  claim would necessitate compensation for the claim-  ant's loss.   The Human Rights Act 1998 brings the articles of the  European Convention on Human Rights into British  law and could also conceivably be invoked in challeng-  ing resource allocation decisions:   • Article 2 (right to life) could be used to challenge  refusal of life-saving treatments   • Article 3 (protections from inhuman or degrading  treatment) could be used to challenge refusal of  treatment to alleviate conditions which cause pain  and suffering   • Article 8 (right to respect private and family life)  could be used to challenge refusal of treatments like  assisted conception, or resources which allow pri-  vacy (such as those which protect patient confiden-  tiality or unreasonably restrict a patient's ability to  follow their religious beliefs, see below)   • Article 9 (right to freedom of thought, conscience  and religion) might be used to challenge refusal  of treatments that unreasonably restrict a patient's  ability to follow their religious beliefs (e.g. funding  for chaplains, prayer spaces in hospital)    • Article 14 (protection from discrimination) could be  used to challenge any decisions which appear based  on discrimination such as on the basis of age, gen-  der, lifestyle or sexuality.   Increasingly, doctors need to be able to justify any con-  troversial decision, often to patients and their represen-  tatives, and possibly even to a court (see Ch. 1). As with  clinical decisions, resource allocation needs to be con-  sistent and fair (process). They also need to be reason-  able (grounds) - you must be able to justify your  decision, whether it is to give someone a cheaper med-  ication or to make regional resource decisions.   • What is need and how is this linked to rights and  justice?   • What does commissioning involve how does this  differ from rationing?   • What are the advantages and disadvantages  to patient involvement in healthcare  commissioning?   • What interventions can you think of which the  state provides in order to improve health but which  are not provided by the health service?   • Would you choose to fund more services for the  medical management of diabetes or put more money  into the national transplant service? Outline reasons  for and against.   • What are the ways in which commissioning and  rationing decisions might be challenged in the  courts?   Berney, L., Kelly, M., Doyal, L„ et al., 2005. Ethical principles  and the rationing of health care: a qualitative study in  general practice. Br. J. Gen. Pract. 55 (517), 620-625.   BMA, 2011. Look after our NHS. Online. Available at: www.  lookafteroumhs.org.uk (accessed 25.07.11.).   BMA, Medical Ethics Committee, 2012. Building on Progress:  Where Next for Organ Donation Policy in the UK? British  Medical Association, London.   Gillon, R., 1994. Four principles plus attention to scope. BMJ  309 (6948), 184-188.   Harris, J„ 1995. Double jeopardy and the veil of ignorance - a  reply. J. Med. Ethics 21, 151-157.    Harris, J., 2001. Micro-allocation: deciding between patients. In:  Singer, P.A. (Ed.), Companion to Bioethics. Blackwell, Oxford.  Hope, T„ Savulescu, J., Hendrick, J„ 2008. Resource allocation.  In: Medical Ethics and Law: The Core Curriculum. Churchill  Livingstone Elsevier, Edinburgh pp. 202-216.   Rawls, J., 1972. A Theory of Justice. Oxford University Press,  Oxford.    Sheehan, M., 2011. Personal view: it's unethical for general  practitioners to be commissioners. BMJ 342, dl430.  Spicer, J., 2010. Oregon and the LIK: experiments in  resource allocation. London Journal of Primary Care 2,  105-108.   Williams, A., 1985. The value of QALYs. Health Soc. Serv. J.  (Centre 8 Supplement), 3-5.   The second half of this book deals with another area  which students are sometimes tempted to give less pri-  ority to but is nonetheless an important part of the  undergraduate curriculum. Chapters 6-8 deal with  some key areas in sociology, as applied to medicine.  Chapters 10 and 11 introduce two areas which overlap  with sociology in undergraduate teaching: public health  and clinical governance.    We are born into a society. Society provides: language  and values; influences our knowledge; and influences  our thoughts and behaviour. Sociology is accordingly  the scientific study of society. Its wide scope contributes  to the study of medicine as, arguably, the role of  healthcare professionals is to provide holistic care - that  is caring for the whole person ; therefore, medical students  ought to be learning how to accomplish this. Armstrong  (2003a) outlines three key aspects of sociology:   1. Sociology in medicine: Sociology takes a look at the  ways in which social factors impinge on individuals  and groups to influence their health and behaviours.  For example: How do people decide that they are ill  or whether to consult a doctor?   2. Sociology of medicine: Sociology can explore how  the concepts of health, disease and medicine are  themselves socially established. For example differ-  ent societies have different concepts of health and  illness.   3. Sociology can look at the ways in which health care  is provided and evaluated. This may overlap with  epidemiology, social policy and economics, among  other disciplines.   Sociology research can involve both quantitative  (e.g. surveys) and qualitative (e.g. interviews and focus  groups) data. Qualitative data tend to involve closer  analysis of smaller sample sizes, and thus rely on differ-  ent measures of validity to quantitative studies.   Being an effective doctor means being able understand  the different social processes that lead patients to    present in a particular place and time and in a particular  way. Knowing that particular social groups' lifestyles  predispose them to particular illnesses is one of many  ways in which an understanding of society can assist  medical practice. At a more strategic level, an  understanding of how social groups might behave can  assist in the planning and delivery of effective  healthcare services.    Western medicine has been based upon what is known  as the biomedical model. This makes the following  assumptions:   1. The mind and body can be treated separately -  mind-body dualism   2. The body can be treated as a machine - the mechan-  ical metaphor   3. Technological interventions are generally successful  in the treatment of disease - the technological  imperative   4. Explanations of disease focus on biological changes  rather than social and psychological factors - that is,  they are reductionist in nature   5. In the nineteenth and early twentieth centuries, edu-  cationist explanations led to the doctrine of specific  aetiology - where it was assumed that every disease  is caused by a specific identifiable agent or 'disease  entity' (the biomedical view has since become con-  siderably more nuanced).   The success of the biomedical model has been, in part,  attributed to its claim that it is an objective science - with  a gradual increase in the truth of explanations provided.  Medicine has, thus, claimed to be the only valid  response to the understanding of disease and illness.  Sociology has sought causes of disease beyond the  reductionistic - or simply biological - level (Fig. 6.1).   A cause is generally understood to be the one thing that  brings about a change in another. For example we can   The reduction in disease in the Western world has more to do with improved social conditions, i.e. sanitation, housing,  availability of fresh food, etc., than with medical advances such as vaccinations and antibiotics   Focussing on the biological changes has underestimated the links between material circumstances and illness. An under-  appreciation of the social factors may have led to a failure to account for the inequalities of health    Biomedicine has failed to account for sociocultural interpretations of disease that influence an individual's perception  and experience of health and illness   Sociologists have suggested that some disease is socially constructed, and, therefore, by attempting to examine only the  biological dysfunction, biomedical models miss much of the cause and, therefore, potential cure. Even apparently  biologically based disease may be directly brought about by social factors    say atheroma causes ischaemic heart disease. This is a  monocausal model. It can be written as:   A — > B : where A is the cause and B is the effect.   Of course, the causality of ischaemic heart disease is  more complicated than atheroma - because this simple  model begs the questions: 'What causes atheroma?' and  'How does atheroma cause ischaemic heart disease?'  Atheroma can be increased or decreased by promoting  or inhibiting factors. A multicausal model is more appro-  priate. Factors such as genetic predisposition, poverty,  poor diet, smoking, diabetes and oral contraceptives  may be promoting factors, whereas physical activity,  access to medical health care and polyunsaturated fats  may be inhibitors. The possible multicausal model is  illustrated in Figure 6.2.   In order to establish a cause, there are three condi-  tions that need to be fulfilled:   1. Temporal sequence: the cause must precede the  effect - if it does not, the relationship cannot be  causal   2. Association between cause and effect: the effect should  vary with the cause - so increased atheroma should  lead to increased incidence of ischaemic heart disease   3. There should be no confounding variable: e.g. cases  of gout might increase with the number of cars    owned per family. The third variable here might  be increased affluence, which may lead to a richer  diet which may be a factor in symptomatic gout  (Fig. 6.3).   • Germ theory was established during the late 1800s,  when scientists such as Ehrlich, Koch and Pasteur  isolated various disease-causing organisms.   • Koch (who isolated the bacillus that causes TB)  established the idea that a disease agent must always  be found with the disease in question, rather than be  found with other diseases.    • The purpose of medical practice was to identify these  agents, then neutralize them.   • Exposure to the disease agent is necessary for the dis-  ease to manifest - but not sufficient.   • The disease can be prevented by modifying factors  that influence exposure and susceptibility. This is a  'multicausal' model.   • More useful in understanding causation of infec-  tious diseases than chronic, degenerative ones.   • Disease results from the complex interaction of  many risk factors.   • Any risk factor can be implicated in more than one  disease.   • This theory has grown out of the observation that  certain groups (e.g. the lower social classes or people  who have been divorced) are more susceptible to a  number of diseases (see Ch. 7).   • It is not concerned with the individual risk factors -  rather the general susceptibility to disease and death.   • General susceptibility is probably a result of the  complex interaction of environment, lifestyle,  behaviour and genetic predisposition.   • This refinement of the 'general susceptibility' theory  recognizes social and physical environments have a  heavy effect on health and disease.   • Identifies socioenvironmental risks, physiological  risks, behavioural risk and psychosocial risks   • The interaction between the above types of risks  affects health status.   • Suggests the importance of protective/vulnerability  factors that help to explain why some people are  less/more at risk than others.   The sociologist Emile Durkheim argued that industriali-  zation had led to a loss of social integration, due to  an emphasis on individualism, division of labour and  specialization of tasks. He supposed that suicide could  be explained in terms of how individuals were inte-  grated into their social group and that suicide would  be associated with very excessive or very deficient social  integration. In industrialized societies where under-  integration is a primary hazard, the greatest risk of sui-  cide would be in those who were most isolated. He  hypothesized that:   • single people, widows and widowers would show a  higher rate of suicide than similar, married indi-  viduals   • protestants, who were less well integrated into their  religious community, would have a higher rate of  suicide than Jews or Catholics.   Other studies have also shown the wider benefits to  health of social support. Gove (1973) showed that  the single, widowed and divorced people had higher  rates of mortality, and a number of diseases (Fig. 6.4).   There are a number of reasons why marital status  might make an indirect difference to health:   • Married couples may be happier, or experience less  stress and are less likely to be socially isolated.   • Marriage might confer meaning upon the lives of  individuals imbuing them with a sense of purpose.   • The trauma of separation or not being married may  lead to risky behaviours such as smoking or drinking.   • The presence of a partner may encourage medical  advice to be sought early on in disease.    • Single, never married people may have started off as  less healthy - thereby failing to get married.   Other studies have looked into social support and its  effect on health:   • Social support was defined in terms of marital status,  number of contacts with friends/relatives and mem-  bership of religious/social groups - to give a social  network score.   • Low social network scores were associated with  increased risk of early mortality (two to three times  above those with high network scores).   • Church attendance was related to low mortality  scores Berkman and Syme (1979). (Armstrong  2003b, cites other work which suggests the effect  may not be as simple as perceived social support.)   • Increased complications in pregnancy were associ-  ated with low social support.   • A lack of social support, social isolation and being  unmarried reduced men's life expectancy following  an initial myocardial infarction.   • A higher risk of suicide was found in divorced men  and was twice that of married men.   However, in a study of women and depression, the fol-  lowing was found:   • Social support was protective in the context of a  severe life event but was not so beneficial in other  circumstances.   The lack of consistency and clarity of the findings may be  due to the difficulties associated with accurate measure-  ment of 'social support'. The relationship between social  support and health may be due to the following factors:   • Support acts as a buffer against the negative effects of  adverse life events (this suggests that social support  is not beneficial in itself - rather it is protective  against life problems).   The association between severe life events, such as  bereavement, and illness, such as depression, led to  the idea that life events may be important in the aetiol-  ogy of a variety of diseases.   Holmes and Rahe (1967) developed the Social Read-  justment Rating Scale (SRRS). This consisted of a num-  ber of life events that were given a score depending on  how life changing each event was, e.g.:   the score of a life event and adverse health conse-  quences. Problems with this scale include:   • Life events can be of variable meaning to individuals  - moving house may be a positive or a negative expe-  rience, as could retirement.   • The scale neglects minor, but perhaps more frequent  or chronic problems.   The sociologist Emile Durkheim suggested that  people who are more isolated from society may be  more at risk of suicide, while events that improve  community spirit can have a positive effect on reducing  the risk of suicide. He suggested that industrial  (modern) society makes people more isolated from  communities.    Some of the earliest social factors studied dealt with  industrialization and the rural to urban migration of  large populations. In Britain, this happened during  the eighteenth century. (A similar process is now hap-  pening in much of the developing world.) Prior to that  time, few families were entirely wage-dependent - rather,  they worked the land tied to the home and exchanged  produce for necessities. The industrial revolution trans-  formed the workforce into large groupings of employees  who were solely dependent on the wages they received.  Subsistence became increasingly difficult - purchasing  power became dependent on employment. Aside from  the changes in employment, migration has further effects  on health and disease.   Geographical mobility encourages the spread of  infectious diseases, but its effect on non-communicable  diseases is less clear-cut. This may be because people  migrate for different reasons, and this may affect the  impact of mobility on morbidity. Migrants are thought  to suffer from higher levels of depression, insomnia  and anxiety. This may be explained by factors such as  language difficulties, hostility in the host country,  new cultural practices and so on. However, this  level of illness associated with migration may be depen-  dent on the reasons for migration (more illness in refu-  gees than economic migrants) and the ability of the  migrants to adopt local lifestyles - a process known as  'acculturation'.    In a study looking at the health of Japanese migrants  in California was compared with the health of Japanese  people in Japan:   • There was large variation within the migrants - with  those continuing to follow traditional Japanese cus-  toms having lower heart disease.   • Coronary heart disease was increased in those who  had adopted Western lifestyles.   Another study showed that the proportion of South  Asians undergoing coronary artery revascularization  was much lower than that of the Caucasian population,  even though they suffer from more severe angina. In a UK  study, it was shown that Asian, West Indian and African  immigrants as a whole had about twice the rate of British-  born subjects of having a first admission to the hospital  for mental illness (Carpenter & Brockington 1980). From  observations of women from ethnic minorities or from  non-English-speaking backgrounds, another study con-  cluded that these women should be regarded as a high-risk  group for postnatal depression (Onozawa et al. 2003).    Illich (1978) argued, in his famous book, 'Limits to Med-  icine', that there are three levels of iatrogenesis (doctor-  induced disease). Medical treatment may obviously have  adverse side-effects (Illich calls this 'clinical iatrogene-  sis'), sometimes as a result of negligence and malpractice  (see Chs 1-5); sometimes as a result of error (see Ch. 11)  and sometimes because it is currently impossible to a pre-  dict the effect that a medical intervention will have on  every single person. However, knowledge is accumulat-  ing on the side-effects of treatments and investigations.  Some iatrogenic disease may paradoxically represent  therapeutic advances, which allow people to live longer,  fuller lives. These people may have side-effects of the  treatment (such as steroid therapy for Addison's disease)  or experience greater problems when older.   Illich also argued that the greater availability of  health care created an increasing dependence on doc-  tors (social, cultural and structural iatrogenesis). In  the past, people dealt with minor conditions them-  selves, whereas today patients attend healthcare settings  for reassurance and advice, medications and a variety of  services. According to Armstrong (2003c), GPs in the  UK have found that when they attempt to reduce the  pressure for appointments by taking on another doctor  or extending the length of their clinics, the consultation  rate tends to rise and the consultations tend to take lon-  ger. Illich argued that this gradual increase in depen-  dence on health services is a form of sickness.   Remember : Many of the treatments that doctors  prescribe can cause direct harm to the patient, whether  though a medical error or because of a recognized side-  effect. However, a worse kind of harm might be caused  by encouraging excessive dependence on medical  services. Think about ways in which doctors educate  patients to manage their own health.    There are two ways in which health care may make peo-  ple feel less healthy:   • Unrealistic health goals, such as the World Health  Organization's definition of health as a state of com-  plete social mental and physical well-being, are used  to convince people that they could be healthier or  are 'by definition' unhealthy.   • Persuading people that good health equates to con-  sumption of healthcare services. Screening (see  Ch. 10) is one way in which 'healthy people' can  become 'people at risk'. According to Illich, the main  outcome has been increasing dependence on health  care and iatrogenic disease.   While Illich's vision of a society where everyone is  his or her own healer is probably not practical at pre-  sent, Illich sounds a cautionary note and reminds us  that health care can have negative as well as positive  effects (Armstrong 2003c).   • Describe the relevance of sociology to the  understanding of health and illness.   • List the theories of disease causation and their key  points.   • Discuss the changing patterns of disease from the  pre-agricultural era to modern-day living.   • Compare and contrast the prevalence of diseases in  the developing world with those in the developed  world.   • Discuss the effects of family, marriage and life events  on an individual's health.   • Describe how social and cultural change has led to a  change in the patterns of disease.   Sociology as Applied to Medicine, fifth ed. Hodder Arnold,  London, pp. 1-2.   Armstrong, D., 2003b. Social support. In: An Outline of  Sociology as Applied to Medicine, fifth ed. Hodder Arnold,  London, pp. 34-36.   Armstrong, D., 2003c. Evaluating healthcare. In: An Outline of  Sociology as Applied to Medicine, fifth ed. Hodder Arnold,  London, pp. 125-137.   Berkman, L.F., Syme, S.L., 1979. Social networks, host  resistance, and mortality a nine year follow-up study of  Alameda County residents. Am. J. Epidemiol. 109, 186-204.   Carpenter, L., Brockington, I.F., 1980. A study of mental illness  in Asians. West Indians and Africans living in Manchester.  Br. J. Psychiatry 137, 201-225.   Gove, W.R., 1973. Sex, marital status and mortality. Am. J.  Sociol. 79, 45-67.   Holmes, T.H., Rahe, R.H., 1967. The social readjustment rating  scale. J. Psychosom. Res. 213-218.   Illicit, I., 1978. Limits to Medicine. Caldar Boyars (subsequently  published and reprinted by Penguin Books), London.    Locker, D., 2008. Social determinants of health and disease. In:  Scambler, G. (Ed.), Sociology as Applied to Medicine, sixth  ed. Saunders Elsevier, Edinburgh, pp. 18-37.   Nettleton, S., 2003. The Sociology of Health and Illness, second  ed. Polity Press, Cambridge, pp. 5-6.   Onozawa, K., Kumar, R.C., Adams, D., et al., 2003. High  EPDS scores in women from ethnic minorities living in  London. Arch. Womens Ment. Health Aug(Suppl. 2),  S51-S55.   Donaldson, L.J., Donaldson, R.J., 2000. Essential Public  Health, second ed. Petroc Press, Berkshire.   Fitzpatrick, R., 2008. Society and changing patterns of disease.  In: Scambler, G. (Ed.), Sociology as Applied to Medicine,  sixth ed. Saunders Elsevier, Edinburgh, pp. 3-17.   Gray, A., 2001. World Health and Disease, third ed. Open  University Press, Buckingham.   Iphofen, R., Poland, F., Campling, J., 1998. Sociology in  Practice for Health Care Professionals. Palgrave, Basingstoke.    In Chapter 6, we looked at how disease patterns have  changed over time, and how social and environmental  factors have played a causative role in the experience of  disease. In this chapter, we look at the processes that  motivate individuals to utilize health services and  how people experience health and illness.   2. Advice or consultation with friends/relatives -  known as 'lay referral'   3. Consultation with a doctor - to confirm subjective  illness and gain objective diagnosis of disease. This  stage legitimizes a sick role   Each of these stages can be affected by differing cultural  and social factors, which are discussed below. However,  it is first worthwhile noting how the biomedical model  defines differences between illness, disease, sickness  and problems of living or 'predicaments' (Fig. 7.1).   The traditional medical model held that when peo-  ple experienced symptoms - that is they felt ill - they  sought medical help to identify a disease process.  However, work done in the 1950s illustrated that many  individuals with symptoms - even potentially serious  ones - did not seek medical help (Fig. 7.2). This was  referred to as the 'clinical iceberg' to indicate that the  majority of community illness was not seen by medical  professionals. In addition, and somewhat conversely, it  was noted that many people who do consult their GP do  so with trivial or minor complaints.   Remember : Patients may have 'consulted' friends and  relatives, or sought advice from the local pharmacist  before seeking medical advice.   The notion of 'illness behaviour' was introduced in  1960 by Mechanic and Volkart to describe the ways in    which symptoms were evaluated and acted upon, or  not acted upon, by different kinds of individual.  Mechanic (1978) outlined a number of variables that  influence illness behaviour. Each variable may be con-  sidered in relation to its impact on others, and in its  impact on the 'patient':   1 . Visibility, recognizability, or perceptual salience of signs  and symptoms, i.e. how obvious the symptoms are.  Individuals with a sudden headache or acute  abdominal pain may consult their GP more fre-  quently than those with a slow-growing lump. In  the same way, if illness causes a change in behav-  iour, which is obvious to those close to the patient  (e.g. expressed hallucinations), medical help may  be sought more quickly than with an insidious  change (e.g. increasing depression).   2. The extent to ivhich the symptoms are perceived as seri-  ous: if a symptom is familiar, an individual may be  more reluctant to visit a GP. Smokers may not  attend a GP for a cough if they think 'it's just a  smoker's cough', whereas a non-smoker might.  Another example is if someone has a backache,  and knows it was caused by heavy lifting, they  may be less likely to attend the GP than if it had  arisen 'out of the blue'.   3. The extent to which symptoms disrupt family, work and  other social activities: the heavy drinker with a family  is more likely to present to health services due to  pressure from those around him, than a solitary  drinker. Similarly, if an individual is unable to play  his weekly round of golf because of breathlessness,  he may consult a GP before a less active individual  in a similar stage of disease.   4. The frequency of signs or symptoms, their persistence or  their frequency of recurrence: frequent or persisting  symptoms are more likely to lead to a consultation  than rarely occurring ones.   5. The tolerance threshold to the deviant signs and symp-  toms: an individual's tolerance of pain and attitude  towards it may determine when he consults a GP.  This may be dependent on his cultural back-  ground. Zborowski (1952) showed that individ-  uals of Irish or old-American descent were more  stoical in their illness behaviour, compared with  Italian and Jewish individuals, who more readily  courted sympathy. However, more recent studies  do not support this work.   'the behavioural part of illness, e.g. obtaining sick notes  from the doctor, or adhering to the sick role'   defined, but are not accepted by the medical community  as being part of disease'   Source: adapted from Banks et al. 1975 (as reproduced in  Armstrong 2003)    6. Available information, knowledge and cultural assump-  tions and understandings of the individual: lay individ-  uals have a wide range of knowledge about medical  conditions. Those who are unaware of how changes  in their body may relate to disease processes may take  longer to present to their GP. Those who are more  fearful of diseases such as cancer, arthritis and birth  defects tend to know more about them and may pre-  sent earlier. For example, people who present to hos-  pital within 4 hours of chest pain are more likely to  see themselves as at risk from a heart attack, know  more symptoms of a heart attack and are less likely  to use drugs to treat their symptoms than those  who delayed presentation. Psychosis in the lower  social classes shows a greater tendency to present  to healthcare professionals via the courts or the  police. Psychosis in the higher social classes tends  to present via family, friends and self-referral.   7. Basic needs that lead to denial: anxiety, guilt and fear  may lead individuals and their families to deny the  existence of signs and symptoms of disease. How-  ever, this can be quite complex. Mechanic notes  that, while anxiety about cancer can lead to shorter  delay in presentation, high levels of fear may lead  to the opposite.    8. Needs competing with illness responses: individuals  may feel that their symptoms do not warrant over-  riding other needs that may be more pressing.   9. Competing possible interpretations that can be assigned  to the symptoms once they are recognized: friends and  relatives may 'normalize' the symptoms of disease.  Individuals who work long hours may not see tired-  ness as a symptom of illness - rather they expect it.   10. Availability of treatment resources, physical proximity,  and psychological and monetary costs of taking action:  the resumption of good health is not always a  supreme priority - rather its attainment must be  weighed against the other costs of going to see a doc-  tor. The costs include (adapted from Mechanic  1978, pp. 268-87):   c. Self-blame and fear of being chastised for risky  behaviour, e.g. smoking   d. Concern that the doctor will form a negative  judgement about them if they present with  something 'trivial'.   The benefits of going to see the doctor are twofold.  There is therapeutic benefit, and there is an endorse-  ment of the 'sick role'.   Illness behaviour is the process by which  individuals with symptoms seek (or don't seek)  medical advice.    Zola (1973) identified five 'triggers' that precipitate an  individual with symptoms to consult a medical  practitioner:   5. 'Temporalizing of symptomatology' - the setting  of deadlines before visiting the doctor, like 'if  this headache comes back . . .' or 'if 1 still feel ill  on Monday . .   When an individual becomes aware of symptoms, they  are presented with a number of options. They can:   This section deals with options (2) and (3). Given the  quantity of symptoms in the community that do not  lead to a consultation, it seems apparent that individ-  uals undertake a great deal of self-care. Most people  have ways of dealing with bruises, muscular aches  and pains, headaches, cuts and colds without needing  to consult a doctor. Hannay has shown that the propor-  tion of people with significant medical symptoms who  do not consult a doctor is higher than the proportion of  people with medical symptoms who do consult a doc-  tor. It has been reported that twice as many people take  non-prescription medicine as prescription medicine,  and this self-medication was associated with a lower  consultation rate. Encouraging self-care for self-limiting  illnesses has clear benefits for healthcare costs. How-  ever, Armstrong (1989) identified two problems that  could arise if this policy were to be pursued too  vigorously:   1. If people are encouraged to take responsibility for  their health, they may also be seen as responsible  for their illness. This 'victim-blaming' may be a par-  ticular problem for the lower socioeconomic  groups, as they are least likely to be able to 'look  after' their health.   2. Health is not just an individual problem - rather it is  contingent on social and economic factors as well.  The placing of responsibility upon the individual  may deflect attention from the responsibility of wider  society to prevent social deprivation and inequality.   Up to three-quarters of patients consulting a medical  practitioner will have already discussed their symptoms  with some other person. This 'lay referral' system can  either increase or decrease the likelihood of an individ-  ual seeking professional help. One Scottish study  showed high interlocking kinship and friendship net-  works 'inhibited' women from social class V seeking  antenatal care. Lay members may also take it upon    themselves to initiate medical consultation. This is  more likely if the symptoms are serious, or if the sufferer  is incapable of self-help (e.g. a parent acting on behalf of  a child, or a wife acting on behalf of a husband with  epilepsy).   Beyond the 'lay referral' system exists a vast number  of self-help groups. Self-help groups 'gather together peo-  ple with a similar problem in order to help them by a  personal approach, preferably to solve the problem,  and where that is impossible, to teach them how to live  with their constraints' (Damen et al. 2000).   The first such group, Alcoholics Anonymous, started  in 1935. Today, groups exist for a vast range of illnesses  including multiple sclerosis, hypertension, all manner  of cancers and depression. By the end of the 1970s,  there were thought to be over half a million self-  help groups in the USA alone. Previously, many self-help  groups were both characterized as and perceived them-  selves to be anti-medical - an alternative to professional  medicine. This perception has broadly changed, and  self-help groups are widely seen to be supplementary  to professional assistance - able to act as expert bodies  in the experience of diseases that is unrivalled by health-  care professionals.   1. An informative aspect - they provide information  about the condition, be this in leaflets, lectures, or  through discussions with other individuals with  the same condition.   2. An emotional aspect - they provide mechanisms to  help the members to put their condition into perspec-  tive. Part of the role of such groups is to alleviate per-  ceived stigma and aid narrative reconstruction (p. 98).   In general, self-help groups are seen as beneficial -  reducing stress, increasing patient control and improv-  ing self-esteem. In particular:   • self-help groups are, next to family, the most impor-  tant pillars for the chronically ill   • the long-term impact of group membership, e.g. in  cancer patients, can lead to a significant reduction  in anxiety and depression.   However, there have been some studies that have found  the supportive or emotional side to self-help groups to  be lacking. One study, reporting on newly diagnosed  cancer patients, found that, although 66% used other  patients as a source of support, only 39% found this  to be a positive source. A number of factors could lead  to negative experiences in such groups, e.g.:    Self-help groups for breast cancer have been found to  be beneficial in relation to the informative aspect; how-  ever, in practical aspects of how to cope with breast  cancer, many people found the emotional support  aspect was less useful, for the following reasons (Damen  etal. 2000):   • They perceived that such support from strangers was  for people who had few other social ties (such as no  partner or family)   • They felt there existed too great a gap of severity  between themselves and the other group members   • They felt there existed too great a gap of age between  themselves and the other group members.   Aside from self-help, individuals may choose to visit  practitioners of alternative medicine or use complemen-  tary medicine.   As the names suggest, alternative is used as a replacement  for conventional medicine and complementary is used  alongside conventional medicine, often through referral  (see http://nccam.nci.nih.gov/health/whatiscam for a  full definition). Alternative medicine can be seen as part  of a wider societal shift of attitude towards natural and  'organic' choices: this includes the green movements  and the increased interest in organic foods vs pesticide-  treated foods; holistic vs mechanistic approaches, and  so on. Such popular support for alternative and comple-  mentary medicine has led to political support - with the  appointment of junior ministers with responsibility for  alternative medicine and the unveiling of plans to set  up the Complementary Medical Council along the same  lines as the General Medical Council.   There has also been a shift in perception by the med-  ical community itself - with complementary medicine  increasingly being practised in conventional medical  settings - particularly with regards to acupuncture for  pain, and massage, music therapy and relaxation ther-  apy for mild anxiety and depression. This has largely  been ascribed to the increasing amount of evidence in  favour of certain complementary therapies.   Proponents of alternative and complementary med-  icine argue that the following benefits are offered:   • It encourages the patient to take on some individual  responsibility for the outcome of the procedure and  healing.    For patients, the common reasons given for attending a  practitioner of alternative or complementary medicine  include:   • A greater amount of time and continuity in the consulta-  tion-. this allows the development of a deeper thera-  peutic relationship than the kind that can be forged  in the average GP or hospital consultation   • The attention to personality and personal experience:  treatment is 'individualized' in the sense of making  it dependent on the patient's emotions, psychology  and response to illness - rather than focussed on the  disease itself   • Greater patient involvement: the patient is able to  choose the type of therapist that they think would suit  them, e.g. a homeopathist, reflexologist, acupuncture  practitioner and so on. There is also the greater sense  of being active in one's own treatment as compared  with conventional medicine, which can make  patients adopt a rather passive role to treatment   • Hope: patients may come to alternative or comple-  mentary medicine after having tried all that conven-  tional medicine has to offer   • Touch: many of the alternative or complementary  therapies involve a degree of physical contact with  the patient that would perhaps be out of place in  conventional medicine. This aspect can be impor-  tant in facilitating a more open and trusting relation-  ship between patient and practitioner   • Dealing with ill-defined symptoms: alternative or com-  plementary medicine may be better placed to deal  with nonspecific syndromes and symptoms, e.g.  chronic fatigue and irritable bowel syndrome   • Making sense of illness: alternative or complementary  medicine may provide explanations for patients'  conditions that they find easy to understand. The  treatment may fit with a patient's own personal  beliefs or seem less threatening than 'orthodox' med-  icine by presenting a 'natural' alternative. The objec-  tivity of such explanations may on occasion be  questionable; however, if they accord with the prior  beliefs of the patients, they may be beneficial   • Spiritual and existential concerns: such concerns are  often not addressed by conventional practitioners.  However, one study has shown that 66% of Ameri-  cans would like their doctors to be aware of their reli-  gious or spiritual beliefs. Practitioners of alternative  or complementary medicine may be more comfort-  able addressing these sorts of issues.   The above reasons represent a number of 'pull' factors  towards alternative and complementary medicine; how-  ever, patients may experience a number of 'push' or neg-  ative factors that lead to a loss of faith in conventional  medicine. These include being less confident about the  conventional medicine, and less satisfied by it, as well as  being more sceptical of its efficacy.   • Safety and competence: a lack of regulation may lead  to unqualified practitioners. In addition, herbal  medications are not subject to the same level of test-  ing as conventional drugs - even though they may  contain pharmacologically active components with  significant side-effects   • Guilt and blame: when patients are encouraged to  feel more responsible for their own health, they  may be made to feel guilty for their past activities  that have led to ill health, or to feel blame for not  getting better   • Financial risk: there is a danger of exploiting the vul-  nerable who are willing to try multiple alternative  or complementary therapies to find a successful  outcome. Alternative medicine is a form of private  practice   • Missed diagnosis or delayed presentation: conven-  tional practitioners worry that alternative practi-  tioners may miss serious diagnoses. This is only a  risk in alternative medicine where it replaces the con-  ventional medicine; however, most patients are  most likely to consult conventional prior to alterna-  tive or complementary therapy   • Conflicting advice may lead to the abandonment of  conventional therapy with potentially serious  consequences   • The remedies provided by the alternative practitioner  may react adversely with conventional medicines.   When individuals talk about health, there are perhaps  three commonly understood components of what  health is. These are (Blaxter 1990):   2. A functional element: an ability to cope with day to  day life   All these elements are overtly dependent on social values  and criteria. However, when individuals talk about dis-  ease, it is in terms of biological criteria. Why does such a  difference exist? A definition of 'disease' as a group  noun, is more difficult than defining the criteria of indi-  vidual diseases. This may be because: a) there is no  agreed definition of disease; b) some diseases do not  appear to have an apparent biological basis, e.g. some  psychiatric diseases; c) if disease is simply some patho-  logical state - that is some biological set of conditions -  how can it be distinguished from a non-diseased  biological state? That is, what differentiates a 'normal'  biological state from an abnormal one?   Normality in medicine may be decided on a number  of bases, as outlined below.   One example of this is the 'normal' range of blood  biochemistry, which is based on samples of the 'healthy'  population and will fall in a 'normal' or Gaussian distri-  bution. Levels that are outside a certain number of  standard deviations from the mean are considered to  be abnormal - even if they are not associated with  symptoms. There are a number of problems with this  approach:   1. The cut-off point may be somewhat arbitrary, e.g.  diagnosis of diabetes or hypertension relies on what  is effectively an arbitrary point in a spectrum of  disease.   2. Certain biological states might be considered to be  disease states, yet are statistically 'normal', e.g. the  presence of atheroma is 'normal' in Western popula-  tions, but is still considered to be a disease process.   3. Certain biological states might not be considered  to be a disease state, yet be statistically 'abnormal',  e.g. being 7 ft tall, or having a 'genius' I.Q.   This is a variation of the statistical basis that aims to find  a way around the problems mentioned above. This the-  ory still holds that disease is an objective status, that not  only can it be defined regardless of whether the patient  'feels' ill, but regardless of whether or not society nega-  tively or positively values that particular biological state.  This theory has been advocated by Boorse (1975). He  asserts that disease is not an evaluative concept; rather,  disease is an abnormality that hinders the attainment  of 'natural goals'. An analysis of a large enough sample  will lead to a bio-statistical analysis of what constitutes  a natural and thus factual goal. This goal becomes the  basis for judgements on what is and what is not a disease.   He claims that: an organism is healthy at any moment  in proportion as it is not diseased; and a disease is a type  of internal state of the organism which:   1 . interferes with the performance of some natural  function, i.e. some species-typical contribution  to survival and reproduction, characteristic of  the organism's age   2. is not simply in the nature of the species, i.e. is  either atypical of the species or, if typical, mainly  due to environmental causes.   However, a fundamental problem still exists. Namely,  Boorse wishes to use terms like 'natural function' and  'biological disadvantage' as objective, descriptive terms,  which are then used to elicit what doctors ought to treat  without a need for moral analysis. However, it seems  that inherent within the terms there is a moral judge-  ment. 'Natural function' is that which is 'good' and    'biological disadvantage' is 'bad'. This assumption is not  obviously true. As Toon (1981) writes: 'This tendency to  find moral values creeping in under the cloak of a scien-  tific definition is a central problem in the definition of  disease, and it merely leads to confusion'. It is thus more  prudent to accept that 'disease' in both its professional  and its colloquial usage incorporates a degree of moral  evaluation.   This view holds that normality is defined in the way in  which society finds acceptable or desirable. It is often  equivalent with those that are statistically normal, but  not always. Some of the advantages of this approach are:   • it better accords with many of our intuitions about  disease   • by defining normality in relation to socially accepted  or desired criteria, disease becomes those states with  socially deleterious consequences   • psychiatric disease, such as 'mania', is more readily  understandable as a state that by (our) collective  values is considered undesirable - even if the patient  doesn't consider himself to be ill. Another example is  homosexuality which, until the 1980s, was generally  considered a mental illness.   Conditions such as 'dyslexia' only exist as 'diseases' in  literate societies - the same biological state may exist  in pre-literate cultures, but it is not a disease because  it does not confer any social disadvantage.   With this conception of disease as a socially definable  phenomenon, the sick role and illness can be under-  stood as forms of social deviancy (deviancy in the sense  of being different from what is the social 'norm', rather  than in a pejorative sense or in the sense that the 'devi-  ant' is morally responsible for 'not being normal'), as  can certain diseases that carry with them considerable  stigma - which essentially is social disapproval (see  below).   Prior to the 1950s, deviance was simply used to  describe those who were responsible for behaving in a  way that did not accord with social and cultural norms,  e.g. youth crime. Parsons (1951) defined deviance on  the grounds that 'it disrupts the social system by inhibit-  ing people's performance of their customary or normal  social roles'. The sick role, according to Parsons, has the  function of minimizing such social disruption, control-  ling the deviant illness behaviour. The sick role consists  of two rights and two responsibilities (or duties).   1. The sick are not obliged to perform their normal  social roles.    2. The sick are not considered responsible for their  own state.   1 . The sick are obliged to want to get well as soon as  possible.   2. The sick are obliged to consult and cooperate with  medical experts.   Remember : According to Parsons' 'Sick role’, someone  who is ill gains rights, e.g. to medical help, sympathy  and time off work, but also has duties, to comply  with medical treatment and get better as quickly  as possible.   Failure to successfully carry out the responsibilities of  the sick role means that the sick may forfeit the rights  associated with their role. Someone who appears not  to want to get well may be considered a malingerer or  a hypochondriac. Someone who does not cooperate  with medical experts is seen as non-compliant. The  non-compliant patient may be seen as responsible for  his illness in a way that other patients are not, e.g. the  patient who continues to smoke after bypass surgery.   The sick role is in general a temporary role into which  all people can be admitted. The gatekeepers to the sick  role are doctors who decide whether or not individuals  have a disease. In doing so, they must draw upon gen-  eral and objective criteria. However, it is possible to  have a medical diagnosis, but not be admitted into  the 'sick role'. For example, many people in Africa  may suffer from constant diagnosable medical condi-  tions such as malaria or malnutrition, however, because  their economies cannot support non-productive indi-  viduals for any length of time, they are not considered  sick and must carry out their social roles.   The main functions of the 'sick role' are to control ill-  ness and to reduce the disruptive effects on the social  systems by returning the ill to good health as quickly  as possible.   Labelling refers to the process whereby individual  characteristics are identified by others and given  a negative label.   The act of making a diagnosis is the process by which  people become 'patients' and are labelled as ill or devi-  ant. In this sense, labelling creates disease. This should    not be confused with causing disease, which it does not.  Rather it enables the normal to be reaffirmed and the  deviant to be identified. Labelling serves to delineate  the boundaries of what are considered to be normal  social values and behaviour.   Secondary deviance refers to the changes in behav-  iour as a result of labelling an illness (primary devi-  ance). Strong social attitudes or stereotypes about  how a blind, epileptic or alcoholic person should act  may lead to self-fulfilling prophecies. The pressure upon  patients derives from the expectations associated with  the label (or diagnosis) a patient has been given. The  blind may be seen as quiet and docile; the alcoholic  as unkempt and incorrigible. People they encounter,  and even medical professionals who deal with them,  may present such stereotypic attitudes to the individual  patients. This reactive attitude towards them may lead  the patients to conform to the stereotype imposed upon  them (either by others or self-imposed because they  believe such stereotypical behaviour is appropriate for  their illness).   The idea of secondary deviance has been most con-  troversial in the field of psychiatry. Three main views  exist as to the impact of labelling primary deviance,  and secondary deviance:   1 . Psychiatric disease is a consequence of the labelling of pri-  mary deviance. This view claimed that psychiatric illness  only existed because certain behaviours were labelled  as 'illness'; 'real' psychiatric illness did not exist.   2. Psychiatric illness is a consequence of the labelling of pri-  mary deviance and the resulting secondary deviance.  This view holds that psychiatrists identify a slightly    unusual behaviour in individuals (which is still  within the normal range) and label it as psychiatric  disease (that is primary deviance) . The result of the  labelling (that is secondary deviance) is the induc-  tion of the mental illness that was first diagnosed.   3. Psychiatric illness can be exacerbated by labelling and  secondary deviance. This view holds that labelling  and secondary deviance lead to some behaviours  that are 'abnormal'. This is most evident in patients  who have lived in institutions for many years. Such  patients may develop certain behaviours that, while  they are normal behaviours within the institute, may  be seen as incongruous in the 'normal' world.   The concept of stigma requires us to accept that the  labels given in a medical diagnosis have significance  beyond the medical consultation and into wider society.  'Stigmatizing conditions [are] those that set their pos-  sessors apart from "normal" people [and] mark them  as socially unacceptable or inferior beings' (Scambler  2008). Some of the most stigmatizing conditions are  those that are generally visible, e.g. being deaf or blind  or being seen to have an epileptic fit or being an ampu-  tee. However, many other non-visible conditions also  have considerable stigma attached to them by virtue  of strong social emotions related to the condition; for  example, cancer (and the associated fear of dying),  colostomies (and the social taboo about handling fae-  ces) and HIV/AIDS (and the 'moral' condemnation of  homosexuality and/or intravenous drug use) (Fig. 7.3).   At risk Pre-stigma and This does not correspond to a stage of the disease trajectory. It denotes a time of   the 'worried well' uncertainty when an individual thinks behaviours might have put him at risk of HIV.   He may cope through denial or disassociation. Much depends on the support  available. The phase may end with testing for HIV.   An individual may be diagnosed early or late in the disease trajectory. A typical stress  response involves disbelief, numbness and denial, followed by anger, acute turmoil,  disruptive anxiety and depressive symptoms. Identity and self-esteem may be  threatened, stigma becomes salient and decisions on disclosure have to be negotiated.   This is when the disease is asymptomatic and perhaps at its least disruptive.  Individuals may normalize, conceal and even deny their positivity. They may choose  to pass as normal, thereby avoiding 'enacted stigma', but 'felt stigma' can exact a  heavy price.   There may be no fixed disease course because of widespread individual variation.  However, there are fewer symptom-free periods and opportunistic infections  accumulate. Stigma tends to be less salient as matters surrounding social and  biological death become paramount. Intense felt stigma may, nevertheless, be  associated with isolation and withdrawal as means of concealing 'abominations of the  body'. Courtesy stigma may extend to carers who hesitate to reveal cause of death.   The process of labelling and stigma involves a negative  evaluation about a condition or its causes with respect  to what is considered to be socially normal and  acceptable.    Goffman (1963) described several strategies that a per-  son with a stigmatizing condition could pursue. He  described stigmatizing conditions as either:   • discrediting - if they were obviously visible (e.g.  being in a wheelchair)   Having a stigmatizing condition that was discrediting,  limited one's options; however, the patient with the dis-  creditable condition had the option of trying to keep the  condition hidden. Coping with stigmatizing conditions  could be achieved in one of the following ways:   1. Passing: by trying to 'pass as normal'. This would  depend on the degree and nature of the stigmatizing  condition. Problems that might occur revolve  around the need for various forms of deception  and the risk of being exposed.   2. Covering: a person with a discrediting condition  could still try to hide the condition from view, or  avoid situations where it is particularly obvious.   3. Withdrawal: at extremes, individuals may withdraw  from social circumstances where attention may be  drawn to their stigmatizing condition.   Scambler and Hopkins (1986) identified a distinction  between two components of stigma:   1 . Felt stigma: the shame associated with the condition,  and the fear of being discriminated against because  of the imputed cultural unacceptability or inferiority   The same authors noted that often the 'felt stigma' is  greater than the actual or 'enacted stigma', and led to  greater disruption of people's lives (in attempting to  hide their medical condition) than probably would  have been the case of enduring the enacted stigma.    Morgan (2008) refers to the meeting of patients with  their doctors as the 'essential unit of medical practice'.  There are estimated to be over half a million consulta-  tions between patients and GPs in the UK every day.    The utility and success of these consultations depends  on the competence and expertise of the doctor, and  the social relationship between doctor and patient:   • The doctor-patient relationship reflects and reinforces  wider social relations and structural inequalities -  especially those of gender, 'race' and socioeconomic  class.   • The relationship and values maintained within them  form a key dimension to social control.   • The quality of the doctor-patient relationship  impacts on the health outcomes.   In the eighteenth century, physicians treated upper class  patients. The status difference and the need for physi-  cians to compete meant that the doctor-patient rela-  tionship was characterized by doctors attempting to  please their patients. The lack of technical knowledge  meant the doctor's role was that of attending to symp-  toms and experiences.   Throughout the nineteenth century, doctors were  most often in some form of private practice. However,  they frequently practised charitable medicine in the  newly created public or voluntary hospitals. Their  patients were often their social inferiors and more pas-  sive in accepting medical advice. Hospital patients were  often sicker and frequently died. The biomedical model  emerged in the eighteenth and nineteenth centuries as  hospital doctors were able to conduct autopsies on dead  patients and relate the post-mortem findings to signs  and symptoms during life. The biomedical model set  up the doctor as the expert on disease, and left little  room for the patient's opinion, especially if the patient  was socially inferior to the doctor. It became normal for  the doctor to occupy the dominant role within the  doctor-patient consultation.   The 1950s were characterized by the paternalistic  doctor-centred approach, typified by Parsons' 'sick-role'.   From the 1960s onwards there has been a general  trend towards a relationship involving greater patient  participation. In sociological terms, this has been  described by relationships of mutuality rather than  paternalism. In ethical terms, this has been discussed  in terms of patient autonomy (see Chs 1 and 3).   In 1992 (updated in 1997), the Patient's Charter was  introduced in the UK. This formally gave patients a  number of rights and affirmed what standards the pub-  lic can expect from the NHS. The rights patients are enti-  tled to include:   • A clear explanation of treatment, its alternatives and  associated risks   • To be seen within 30 minutes of an appointment  time   • To be seen immediately at A&E or have need for  treatment assessed   • To have their privacy, dignity, religious and cultural  beliefs respected.   All the current changes seem to be increasing the con-  sumer power of the patient. This is partly reflected by   As mentioned above, Parsons (1951) was the first soci-  ologist to deal with the relationship between doctors  and patients. Parsons believed that social functioning  was achieved in part by the fulfilment of social roles -  each of which had certain prescribed or expected behav-  iours. This meant that we know what to expect when  interacting with mothers, teachers and doctors, and  how we in turn are expected to behave in the role of chil-  dren, pupils and patients. Just as Parsons held that the  'sick role' had certain rights and responsibilities, he  believed the 'doctor role' had a number of rights and  obligations as well. These are summarized in Figure 7.4.   Parsons viewed the sick role as both temporary - only  for as long as it takes to get better; and universal - the  obligations and rights apply to all regardless of gender,  race or socioeconomic class. Parsons thought of the  doctor's role as complementary - but not equal - to  the sick role. The asymmetry in the relationship was  not thought to be problematic due to the expectations  or obliged attitudes of the doctor, namely:    • Affective neutrality - to remain emotionally detached  and objective in the diagnosis and treatment of  disease   • Functional specificity - the doctor should be concerned  only with those matters that are of direct medical rel-  evance to the patient.   This is of course an 'ideal' model of the doctor-patient  relationship. Everyday, reality departs from this ideal.   1. Consensual models: such as the Parsons model -  where both the doctor and the patient have the same  goals framed within the perspective of the biomed-  ical model. That is, even if the doctor and patient  don't agree on how best to produce a cure, they have  agreed on their aims - specifically to produce a cure.   2. Conflict models: where the patient and the doctor  have different agendas and perspectives that may  often be in conflict - and are often not addressed.   3. Negotiation models: where it is recognized within the  consultation that the doctor has a biomedical  agenda and the patient a psychosocial agenda, and  attempts are made to understand the patient's view  and integrate their lay beliefs into a workable plan  for treatment.   These models represent different types of relationship  between doctor and patient. The Parsons' model is a  paternalistic one; ultimately, the patient in the 'sick role'  is obliged to cooperate with the doctor (Fig. 7.5). Other  types of relationship occur when different levels of  power and control are exercised by doctors and patients  (Fig. 7.6).   In the paternalistic relationship, the doctor is author-  itative, acting in much the same way as a parent deciding   1. Apply a high degree of skill and knowledge to the problem of illness   1 . Granted right to examine patients and enquire into intimate areas of  physical and personal life    Fig. 7.5 A comparison of Parsons' doctor-patient  relationship and the GMC's Duties of a Doctor.   Act for the welfare of patient and community rather  than self-interest   Be objective and emotionally detached (not judge  patient's behaviour in terms of personal value system  or become emotionally involved with them).   Make sure that your personal beliefs do not prejudice  your patients' care    what is best for their child. The agenda for the consulta-  tion is determined by the doctor, who assumes patient  values without enquiring after them. For example, a  doctor may assume all patients who have a sore throat  desire antibiotics, when in fact they may simply want  reassurance or vice versa. Recognition of patient auton-  omy means that consultations are leaning away from  this paternalistic approach, although it may still be  the most prevalent style of consultation. However, some  sections of the population such as the elderly may prefer  a paternalistic approach. Paternalism may also be more  prevalent in other cultures (e.g. Japan is reported to have  a more paternalistic medical profession).    A relationship of mutuality sees doctors and patients  in a 'meeting of experts'; the doctor with clinical skills  and knowledge, and the patient with experience and  expectations of the illness and possibly complex ideas  about its causation. This is the sort of relationship  that is encouraged in the Western practice of modem  medicine.   A consumerist relationship may develop if the patient  becomes demanding, and the doctor acquiesces to their  demands, e.g. for antibiotics for a viral infection or an  unnecessary referral. This type of relationship is more  prevalent where patients are paying to see the doctor.  This type of consultation is characterized by the patient  setting the agenda, and the doctor acting as little more  than a facilitator. The patient's values are unexamined  by the physician, which may lead to the patient having  an ongoing false impression of his or her condition.   A default relationship occurs when neither the doctor  nor the patient takes an active role in the consultation.  The danger here is that the consultation is undirected  and the appropriate decisions may not be made.   Of course, these types of consultation represent  extremes; a single consultation may contain a mixture  of styles, the doctor being paternalistic with an issue  she considers important, and the patient being more  demanding with others.   A 'patient-centred' consultation style is increasingly  advocated in all settings, but especially in primary care,  where there is a high degree of psychological and social  aspects to the consultation. What then is 'patient-  centredness?   Mead and Bower (2002) describe the following five  dimensions of 'patient-centred care':   1 . The biopsychosocial perspective: this takes into account  the biomedical, psychological and social factors that  lead to a patient consulting   2. The ' patient-as-person this dimension invites the  doctor to consider the personal meaning of the ill-  ness for that individual patient   3. Sharing power and responsibility: the aim of this per-  spective is to remind doctors to be sensitive to  patient preferences, and understand the reasons  and values that guide their actions   4. The therapeutic alliance: this aims to develop com-  mon goals and agendas that take into account both  the patient's and the doctor's preferences. The idea  of developing a mutual goal is that it is more likely  to be achieved than one that is simply dictated by  the doctor.   5. The 'doctor-as-person': this aspect reflects a need for  doctors to be introspective to a degree - being aware  of how their own personal qualities and their sub-  jectivity affect their practice of medicine. Doctors'  assumptions of patients' preferences may have more    influence than the actual preferences of patients -  resulting in actions deemed unnecessary by the  doctor and unwanted by the patient.   The term 'patient-centred consultation' is used to draw  attention to the importance of the patient in the consul-  tation. However, it is characterized by mutuality as  described above - where both patient and doctor are  partners in the process treating the patient - rather than  a consumerist relationship, which the term 'patient-  centred consultation' might suggest. Some authors pre-  fer to describe this as 'relationship-centred care' in order to  avoid this problem and to recognize the importance  of the reciprocal relationship between the doctor and  the patient, and the integration of the biomedical and  real-life or personal perspective of the patient. Such  consultations (whatever we choose to call them) are  characterized by being:   • medically functional - the consultation must work  within the framework of a healthcare system.  History-taking, examination, diagnosis and treat-  ment are expected of the consultation   • informative for the patient - in general, patients  want to know as much information as possible  about their conditions. Some studies have shown  that when patients are better informed (e.g. what  the symptoms of a heart attack are) they are more  likely to seek appropriate medical care   • facilitative - that is the doctor should aim to elicit  the full concerns of the patient and their pre-  consultation agenda. The majority of patients do  not discuss their full agenda during a single consul-  tation, the consequences of which can be a number  of misunderstandings   • responsive - in addition to being experts in health,  doctors need to respond to patients at a human  level - offering 'support, empathy, concern and legit-  imation' (Roter 2000) to patients. This helps to build  a rapport with the patient, and make them feel that  they are being listened to and understood   • participatory - this implies that patients should take  a responsible and active role in medical decision-  making. The degree to which they are able to do this  will be dependent on the patient's desire to be  involved in their health care and the encouragement  they receive from their doctor to do so.   The patients' agendas are their ideas, concerns and  expectations. Agendas may include:   • Symptoms - the patient may have multiple symp-  toms, but through embarrassment or uncertainty  about the significance of symptoms, may not men-  tion all of them   • A request for a prescription/or a desire not to have a  prescription - some patients may feel that a    prescription represents a positive step towards treat-  ing illness, others may feel a prescription treats the  symptoms without addressing the cause of illness   • Worries about diagnosis or prognosis - patients  often have questions about their health, or need clar-  ifications, but feel unable to ask   As mentioned above, conflict may arise in a consulta-  tion due to different expectations - the doctor wishing  to pursue biomedical goals, and the patient seeking the  resolution of a social problem and a degree of reassur-  ance. However, conflict may also be imposed on the  relationship by a number of other factors:   • Competing demands of many patients for limited  resources such as doctors' time   • The knowledge that some diagnoses are unhelpful,  and some treatments ineffective   • The conflict between the present and future interests  of the patient, e.g. when should the doctor reveal a  poor prognosis?   • The conflict between the patient's interests and those  of his/her family or the state, e.g. whether to inform  the DVLA about a newly diagnosed epileptic   • The inability to resolve social problems, such as  damp housing, or problem neighbours, which lead  to stress and the somatic symptoms   • The conflict with the doctor's other roles, e.g. the  doctor's role as a mother and her responsibility to  collect her children from nursery.   • Doctor’s practice style: The doctor's practice style can  be described as doctor-centred or patient-centred.  The doctor-centred style is paternalistic and is charac-  terized by the use of closed questions, and active  information gathering (e.g. 'do you have any pain?'  and 'is the pain burning or stabbing?'). The patient  may be intermpted and is expected to be passive.  The consultation is limited to the medical problem  the patient has and may not address any psychosocial  concerns of the patient. By contrast, the patient-  centred approach is characterized by open-ended  questions (e.g. 'how do you feel?' and 'tell me about  the pain'). The process requires greater patient partic-  ipation and reflects a relationship of mutuality.   • Influence of time: Lack of time is often cited by doctors  as hindering their attendance to the psychosocial    concerns of patients, and 'feeling hurried' is a reason  given by patients for not mentioning all their symp-  toms (or sometimes their major complaint). How-  ever, a doctor's practice style may have more  important influence on the content of consultations.  By adopting a patient-centred approach (which does  tend to take longer) doctors are more likely to fully  understand the patient's perspective and provide a  treatment that is acceptable to both parties. The sug-  gestion has been made that by initially spending  extra time with the patient, the doctor may reduce  subsequent visits and increase compliance, so saving  time in the long run, and benefiting the patient's  health. It has also been suggested that a doctor's  practice style, rather than length of consultation,  is a better predictor of patient satisfaction and the  eliciting of complete patient agendas.   • Influence of structural context: Consultations with the  same patient may vary between the primary and  secondary care settings. Patients may adopt a more  passive role when seeing a specialist or in an acute    setting, but prefer a more active role when consulting  the GP. Private patients may be more demanding in  their consultations, and their doctors, who are more  reliant on the goodwill of the patient, may be more  passive.   • Patients' expectations and participation: the role the  patient takes may change as the consultation pro-  cess goes on. It has been reported that patients  who were passive in their first consultation had  increased participation and were more critical by  the third.   • Communications skills: Communications skills are  important in eliciting information from patients in  order to get a good history, discovering the patient's  concerns, and in conveying information back to  the patient about the cause of their illness and its pro-  posed management. The following considerations  may be of use in improving these aspects and in  avoiding any misunderstanding (see also Fig. 7.7):   • Removing physical barriers (such as desks)  between the doctor and patient   Britten et al. (2000) studied the sorts of misunderstandings in prescribing that occurred in general practice.   Of 35 consultations, 28 had some degree of misunderstanding. The common reasons are outlined below:   a. The patient doesn't mention previous medical history (e.g. side-effects from a previously tried medication)  wrongly believing the doctor is already aware of it   b. The doctor has an inaccurate perception of what the patient wants (e.g. the doctor assumes the patient  wants antibiotics, when in fact they merely want reassurance)   c. The doctor is unaware that the patient is taking over-the-counter medication (either due to failure to ask, or  active concealment)   a. Patient does not understand why they have been prescribed a certain medication and therefore takes it  incorrectly or not at all   b. Patient is unaware of the correct dose or is confused about the correct dose   a. The patient is confused by receiving different information from the doctor and other sources, e.g. the  hospital specialist or the pharmacist   a. The patient may not understand, remember or accept a diagnosis (e.g. a patient who was receiving two  sorts of injections stops taking the wrong one, because he/she misunderstood which one the doctor had  advised him/her to stop)   b. The patient may not understand how treatment can be prescribed in the absence of a diagnosis   a. The doctor may write a prescription, not because he thinks it is necessary, but in order to preserve a  relationship (e.g. either because it is a repeat prescription by a partner in the practice the doctor  does not wish to challenge, or in order to maintain a good relationship with the patient who desires a  prescription)   The misunderstandings in prescribing tended to be associated with a patient's lack of participation in the consultation,   and in many cases were based on inaccurate assumptions by both doctors and patients   From Britten N, Stevenson FA, Barry CA et al 2000 Misunderstandings in prescribing decisions in general practice. British Medical   • Use of body language (maintaining eye contact,  adopting a relaxed, but not too relaxed posture,  appropriate facial expressions)   • Giving instructions and advice before other  information - this is known as primary effect -  people are more likely to remember the first bits  of information they are given   • Repetition - this can be used to clarify parts of the  history, or to ensure the patient is confident  about how to take their medication   • Providing written information - booklets or leaf-  lets that are relevant   Alongside the shift in attitudes about the doctor-patient  relationship, from doctor-centred to patient-centred,  there has been a shift in the attitude towards those  patients with differing agendas to those of their doctors.   Compliance has been described as 'following doc-  tor's orders', and thus, non-compliance has been used  to describe any behaviour that is seen as disobedient,  for example not taking prescribed medication. Other  terms such as adherence and cooperation have been  used, but were also criticized for not being far away  enough in meaning from compliance.   Qualitative studies have shown that the three main  reasons for non-compliance are:   • perceived or real stigma: feeling that taking the medi-  cine isn't 'normal', so patient keeps testing out whether  they can stop taking drug and become 'normal'.   In 1997, a report published by the Royal Pharmaceutical  Society of Great Britain's working party on medicine-  taking, recommended that 'concordance' should replace  the term 'compliance'. Concordance is 'a process of pre-  scribing and medicine-taking based on partnership'  (Medicines Partnership 2003) between the doctor and  the patient.   The need for this sort of approach has arisen subse-  quent to research showing that many people, especially  those with chronic conditions, do not take their medi-  cines as prescribed. Two-thirds of older patients pre-  scribed statin for coronary artery disease will have  given up treatment within 2 years, and half of people  diagnosed with hypertension do not take the drugs that,  as prescribed, may benefit their health. However,  Misselbrook and Armstrong (2001) point out that the  Medical Research Council trial of treatment of mild  hypertension found that 850 patients had to be treated  for 1 year for one patient to avoid a non-fatal stroke.    They ask whether mild hypertension should be treated,  and who should decide? Heath (2003) points out that a  concordance model does not necessarily mean that  patients will follow medical advice, or indeed that  they should be compelled by the weight of medical  evidence.   • Compliance refers to a specific patient behaviour,  namely did the patient do what was requested by the  doctor?   • Concordance refers to a consultation process  between a healthcare professional and a patient and  is based on the ethos of a shared approach to  decision-making rather than paternalism.    The advocates of concordance suggest that it is dif-  ferent from compliance, adherence and cooperation,  in that it promotes a sharing of power in the doctor-  patient relationship. Concordance recognizes the  patient's expertise in their experience of illness and  response to treatment. While this expertise is different  from that of the clinician's, it is of equal relevance and  value in terms of deciding on best management. The  idea is that doctor and patient will embark on joint  decision-making processes to reach a clinically effec-  tive treatment that is acceptable to the patient's beliefs,  values and ideas about their disease. It is hoped that  the ethos of concordance will lead to less drug wastage  and fewer hospital admissions due to the iatrogenic  effects of drugs.   Establishing whether a patient is taking medications as  prescribed, exploring their beliefs about their  medication, and formulating a plan based on shared  decision-making has been a regular theme in both  undergraduate and postgraduate clinical examinations.  Think about why the patient might want or not want to  take a particular medicine, as well as why you want  them to be on a particular treatment.   Joint decision-making of this sort requires certain com-  petencies of both doctors and patients (Fig. 7.8). Joint  decision-making of this kind is considered to be impor-  tant (Cox et al. 2003) because it leads to:    Fig. 7.8 Competencies for doctors and patients to facilitate joint decision-making.   2. Find a doctor and establish, develop and adapt a partnership   3. Establish the patient's preference for the role  in decision-making and any uncertainty   3. Articulate (for oneself) health problems, feelings, beliefs,  and expectations in an objective and systematic manner   4. Communicate with the physician in order to understand  and share relevant information clearly and at the appropriate  time in the medical interview   5. Identify choices and evaluate the research  evidence in relation to the individual patient   6. Present (or direct patient to) evidence, taking  into account (2) and (3). Help patient to reflect  on and assess the impact of alternative decisions  with regard to his/her lifestyle and values   7. Make or negotiate a decision in partnership  with the patient and resolve any conflict   7. Negotiate decisions, give feedback, resolve conflict, agree  on an action plan   Towle A, Godolphin W 1999 Framework for teaching and learning informed shared decision making. British Medical Journal 319: 766-771,  with permission.   However, it has also been suggested that concordance  may not be as successful as anticipated. It is reported  that leaflets and other aids may increase satisfaction  and knowledge but rarely improve physical outcome;  even if patients are well informed, doctors may consider  patients' decisions to be irrational. Patients tend to over-  estimate the risks of common complications; patients  could not assess the meaning of outcome statistics  and some patients have little interest in choice while  others are too emotionally compromised.   Morgan (2008) comments that concordance is least  problematic when there are several equally appropriate  or effective treatments available from which the patient  may choose according to personal preference, such as  for treatment of menopausal or prostatic symptoms.  Problems can arise when a patient demands a new  and expensive or ineffective treatment where treatment  is being allocated on the basis of cost-effectiveness.  Problems may also arise when patients refuse poten-  tially life-saving therapy, such as immunosuppressant  medication following a transplant.    Over the last 30 years, the rates of hospital admission  have increased, despite the reduction in the number of    beds. This has been achieved by decreasing the length  of stay in hospital of each patient, e.g. in 1984, repair  of a groin hernia necessitated a stay of 5 days. It is now  commonly done as day surgery. When patients are  admitted to hospital, they may find themselves disem-  powered by the experience. Medical staff, by virtue of  their technical expertise, good health and familiarity with  the practices on the wards, are in a considerable position  of power and authority over the patients. The experience  is commonly a source of anxiety and stress, due to:   1. the fact that there is 'something wrong' with them  that has necessitated their admission   6 . uncertainty about the process of care, procedures on  the ward and which investigations will be necessary   7. uncertainty about the pain and risk involved in  investigations and treatment   8. what to expect post-surgery - how long they will  have to stay in hospital   1 0. concern about employment and when they can get  back to work.   Attempts to combat this negative experience include  providing information about what to expect in hospital  prior to admission. However, the experience of inpa-  tient care gives rise not only to anxiety, but also to    feelings of a de-personalization or loss of self-identity.  This is due to:   • the sense of being part of a 'batch' of patients being  treated   • an institutionalized schedule - being told when to  eat, when to get up, when visitors are allowed   Patients who remain in hospital for long periods of time  may be at risk of 'institutionalization'. Institutionaliza-  tion refers to the process by which patients in 'total insti-  tutions' (those where individuals are wholly separated  from social interaction with the outside world, e.g.  old-style psychiatric hospitals, monasteries and  prisons) become apathetic and unable to make simple  decisions for themselves. This was relatively common  in long-stay psychiatric hospitals - and was one of the  reasons for the development of 'care in the community'  for people with mental disorders.   The psychological well-being of patients also impacts  on their physical illness. If patients become anxious,  stressed or depersonalized while in hospital, there is a  risk that their recovery from their physical illness will  be delayed. Patients' beliefs about their illness seem to  influence recovery and rehabilitation on discharge from  hospital: one study showed that the early identification  of illness perception could improve patient outcome  following a myocardial infarction.    Remember: Assessing a patient's fitness for discharge  home includes an assessment of whether they will cope  at home and not just whether they are managing well in  the institutional environment of a hospital. This is  particularly important with frail and very elderly patients.    Chronic disease has been identified as an increasing  problem for modern medicine. This is partly due to  the ageing population, but also due to the success of  medicine in averting death, but not always avoiding per-  manent injury. Chronic disease often requires a 'caring'  approach rather than a 'curative' one. By its very nature,  chronic disease is a long-term affliction, and as such has  a profound influence on those who suffer with it.  Chronic diseases include arthritis, heart disease, some  forms of cancer, ulcerative colitis, psoriasis, dementia,  multiple sclerosis, asthma and epilepsy. A chronic dis-  ease may or may not eventually be fatal, in fact the sever-  ity of many of the diseases mentioned fluctuates greatly,   both between sufferers and between days (or even  hours) for the same sufferer.   Chronic disease poses a problem for Parsons' 'sick  role' (see above), which expects the sick to want to get  better and to only occupy the sick role temporarily.  For the chronically ill, the 'sick role' must be modified  slightly. Sufferers must maximize their ability to carry  out social roles within the confines of their illness,  and only be accepted to the 'sick role' when their capa-  bilities drop below what they are usually able to do.   Study of the 'experience' of those living with chronic  disease and their families has been undertaken since  the 1980s in order to bring about a sound, effective  and ethical approach to chronic illness. A few of the  common problems experienced by the chronically ill  and disabled are mentioned below (adapted from  Locker 2008):   • Uncertainty: chronic disease can be shrouded in  uncertainty. Symptoms may be present for many  years before a definitive diagnosis is given (for exam-  ple in multiple sclerosis). However, being given a  diagnosis doesn't end the uncertainty. Patients  (and doctors) may be unsure of how a disease will  progress and at what speed. In addition symptoms  may vary from day to day, with little rhyme or rea-  son. One such disease is rheumatoid arthritis - pain  level may vary throughout the day, often without a  precipitating factor. The uncertainty means it is dif-  ficult to make even short-term plans, and living  arrangements may need to be constantly revised.   • Strained family relations: often family members  become carers for those who are chronically ill. The  ability of individuals to cope with their role is varied  and the carer (as well as the sufferer) may find them-  selves being excluded from their wider social contacts.  Strain may also be placed on marital relationships. In  a study of the effects of having a colostomy post rectal  cancer, most individuals reported a loss of sexual  capacity and a decline in the marital relationship.   • Problems relating to self-esteem and identity: the develop-  ment of a chronic disease can lead to a fundamental  rethinking of a person's biography and self-concept  (Lawton 2003). This has been termed 'biographical  disruption' by Bury (1982). Bury argues that such dis-  ruption can take place on many levels - including  physical discomfort as well as a rethinking on one's  mortality and existential sense. Charmaz (1983) out-  lined a similar perspective that describes a profound  effect on the sense of self-worth, referred to as a loss  of self, where individuals separate off the person they  may have become as the disease progresses from a  cherished view of how they were prior to the disabil-  ity. Subsequent to the disruption and loss of an earlier  conception of oneself comes the rebuilding of one's  identity, which incorporates the chronic disease.    Williams (1984) refers to this as 'narrative reconstruc-  tion'. This describes the strategies people employ 'to  create a sense of coherence, stability and order in  the aftermath of the 'biographically disruptive' event  of illness onset'. The view of oneself may become  linked almost exclusively with that of the disease -  to the exclusion of other social roles - so, a patient  with multiple sclerosis views themselves as 'an MS  sufferer' rather than a mother, a teacher, a theatre-goer  or any other role she plays.   • Problems relating to medical regimes: patients with  chronic diseases need to manage both their symptoms  and their medical treatments on a daily basis. Often  the treatment may be complicated, e.g. patients in  renal failure who have dialysis, and time-consuming.  Everyday life must be centred around the routine of  medical Ueatment. This may prevent spontaneity  and flexibility within the lifestyles of the chronically ill.   • Unemployment and economic problems: the most vul-  nerable groups in the face of chronic illness are those  from low socioeconomic groups, ethnic minorities  and women. Lower amounts of disposable income  mean that individuals have fewer resources to sup-  port themselves through their disease. However,  employment is important for reasons beyond simple  economic benefit. Being able to be employed is sig-  nificant in giving purpose and a focus for individuals  and being 'included' in a social role may provide  valuable benefits in terms of self-esteem.   • Information, awareness and sharing: information is a  significant resource for the chronically ill. This  may be about the disease from which they suffer,  about the benefits they are entitled to, or coping  strategies, or potential symptomatic treatments.  The arena where such information sharing may  occur is often a self-help group. The ability to meet  others with the same disorder, and similar experi-  ences, may also be beneficial.   In 1970, the Chronically Sick and Disabled Persons Act  was passed. This obliged local authorities to identify  people with disabilities, determine their needs and  provide appropriate services to meet those needs.   The ability to adapt to living with a chronic illness can   1 . Coping - the cognitive processes of learning how to  tolerate or put up with the effects of illness    2. Strategies - the actions people take, or what people  do in the face of illness   Factors that may aid individuals with chronic disease  include (Verbrugge & Jette 1994):   • Medical care and rehabilitation - surgery, physi-  cal therapy, speech therapy, counselling, health  education, job retraining, etc.   • Medication and other therapeutic regimens -  drugs, recreational therapy, aquatic exercise,  biofeedback meditation, rest/energy conserva-  tion, etc.   • External supports - personal assistance, special  equipment and devices, day care, respite care,  meals-on-wheels, etc.   • Build, physical and social environment - structural  modifications at home or work, access to buildings  and public transport, health insurance and access  to medical care, laws and regulations, employment  legislation, social attitudes, etc.   • Lifestyle and behaviour changes - overt changes  to alter disease activity and impact   • Psychosocial attributes and coping - positive  affect, emotional vigour, locus of control, cogni-  tive adaptation to disability, personal support,  peer support groups, etc.   • Activity accommodations - changes in kinds of  activities, ways of doing them, frequency or  length of time doing them.   Chronic disease is often associated with a degree of  impairment in functioning. How this relates to terms  like disability and handicap is set out by the Interna-  tional Classification of Impairments, Disabilities and  Handicaps (ICIDH) (Fig. 7.9). Crucial to the ICIDH  definitions is the idea that handicaps are disadvan-  tages that are not inherent in the individuals, rather  they are imposed by the environment. However, the  ICIDH definitions have been criticized for using the  term 'handicap', which to many is considered a pejo-  rative term.   Disability campaigners over the past 20 years have  advocated a theory known as the 'social model of disabil-  ity'. This approach stands in contrast to the 'medical  model of disability', which sees disabilities and handi-  caps as directly and inevitably derived from impairments.  The social model of disability states that:   • there is a difference between the impairments people  have and the oppression they experience   • 'disability' can be defined as the social oppression,  not the form of impairment    Fig. 7.9 International Classification of Impairments,  Disabilities and Handicaps (ICIDH) definitions.   Impairment Any loss or abnormality of psychological,  physiological or anatomical structure or  function, e.g. osteoarthritis causing  painful, stiff joints   A restriction or lack (resulting from an  impairment) of ability to perform an  activity in a manner or within the range  considered normal for a human being,  e.g. difficulty climbing stairs   A disadvantage for a given individual,  resulting from an impairment or a  disability, that limits or prevents the  fulfilment of a role that is normal  (depending on age, sex and social and  cultural factors) for that individual, e.g.  an inability to access certain buildings  within the community with steps - thus  perhaps being unable to visit certain  cinemas, libraries, banks and so on    This model describes disability as something imposed  upon those with impairments by unnecessarily isolating  and excluding them from full participation in society.  Disability is the 'social situation' encountered by people  with impairments. The importance of this model is two-  fold: 1) it identifies the proper approach to disability as  being the removal of those barriers that prevent people  with impairments from fully participating in society,  rather than the previous medicalized approach, which  was to cure and 'normalize' impairments and 2) it liber-  ates and empowers the disabled community by locating  fault with society rather than with disabled individuals.   However, the social model of disability has been crit-  icized on the following grounds:   1 . The denial of the link between physical impairment  and social disability has been overstated - denying  that disabled people are not also people with  impairments is to ignore a major part of the biogra-  phies of disabled people.   2. Emphasis on criticizing the need for a 'cure', as stated  by the medical model, has led to some disabled  groups opposing measures designed to 'normalize'  their conditions or maximize their function. For exam-  ple, the refusal of artificial limbs for amputees and  hearing aids for the hearing impaired. This has led  to certain conditions having a greater impact on peo-  ple's lives than might otherwise have been the case.   3. The social model is too rigid in creating an artificial  distinction between disability and impairment - the  two can be seen as part of a continuum.   4 . Some impairments cannot be helped by the removal  of environmental or social barriers (e.g. phantom  limb pain and significant intellectual impairment) .   In 1995, the Disability Discrimination Act was passed,  which begins to address many of the social issues  identified in the social model of disability (see www.  disability.gov.uk).    The way in which death is perceived is determined by  personal and cultural factors. In an increasingly secular  culture, death is seen as a finality, beyond which there is  no existence. However, many religions agree in some  sort of afterlife, be it reincarnation or a spiritual para-  dise. In some traditional societies, it is believed that  the dead do not really die, at least not in a social sense,  rather they remain as an invisible spirit that is still a  member of the family and can help, protect, hinder or  punish those who continue to survive in an earthly way.   Our perception of death changes as we age. Young  children see death as a sleep or departure, not under-  standing the finality of death until about the age of 7.  Children are at first matter of fact and then fearful of  corpses. The perception and understanding of death  within Western culture is one that tends to incorporate  feelings of loss, separation, pain and punishment.   One hundred years ago, less than 10% of people died  in hospitals. It is thought that about 75% of people now  die (in the UK) in institutions such as hospitals, hospices  and nursing homes. The general trend has been for death  and the process of dying to be removed from the public  domain. Part of the reason for this is the greater ability of  medical technology to prolong life; as a result, the pro-  cess of dying is more drawn out, leading to 'slow deaths'.  Figure 7.10 compares slow dying in the modern era with  'quick deaths' in the pre-modern era.   The typical stages of dying were described in 1969 by  Elizabeth Kubler-Ross, an American psychiatrist:   1. Denial and isolation: on being told they are dying,  patients may enter a state of shock, expressing feel-  ings like, 'It can't be me'. Denial is usually a tempo-  rary defence, although it can be sustained. Patients  may 'shop around' for a more positive second opin-  ion. A deep feeling of isolation is 'normal' at this  stage.   2. Anger: shock may be replaced by feelings of anger,  resentment and rage. The medical staff - often the  nurses - may be subjected to outbursts of 'Why  me?' and Why can't you help me?'   Complex definition of death (e.g. irreversible cessation of  higher brain activity)   Customary killing or suicide of, or fatal passivity towards,  the person once he or she has entered the 'dying' category   Customary curative and activist orientation toward the  dying with a high value placed on the prolongation of life   Lofland L 1978 The Craft of Dying: the Modem Face of Death. Beverly Hills: Sage (as reprinted in Scambler G 2003 Dying, death and  bereavement. In: Scambler G (ed.) Sociology as Applied to Medicine, 5th edn. Edinburgh: Saunders, p. 93)    3. Bargaining : the terminally ill may attempt to negoti-  ate with caregivers or God. They may endeavour to  be a 'good' patient in order that the doctor might  extend their lives.   4. Depression-, as patients confront their fate, their anger  or shock may give way to depression; it may be  reactive - to the condition, or preparatory - based  on the impending loss of life itself.   5. Acceptance: dying patients may find a sort of peace,  an acknowledgement of the inevitability of death.  At this stage, the family may need more help, sup-  port and understanding than the patient.   Kubler-Ross' model rapidly gained acceptance, accord-  ing to some, because it filled a void in healthcare theory  and re-awakened the topic of dying that had previously  been taboo. However, it was criticized because it  assumed too mechanistic an approach, with the dying  person moving through all five stages in one direction,  while the experience of those caring for the dying sug-  gested an oscillation between periods of calm, fear, hope,  depression, anger and withdrawal. It also focussed on the  psychological aspects of dying, at the expense of physical  and spiritual dimensions.   Subsequent authors have modified the stages model of  dying by increasing the mixture of emotions and re-  sponses exhibited by a person facing death (Fig. 7.11)  and marking a patient's progress by the resolution of these  emotions, rather than their change. However, this model  still suffers from the criticism that it focusses only on the  psychological aspects of dying.   Corr (1992) developed a theory that states that indi-  viduals who are dying confront tasks in four dimensions  of coping with death. These are:   • Physical: satisfying bodily needs - such as thirst and  pain   Resolution  of those  elements  of the initial  response  that are  resolvable   Not an essential state  provided that the  patient is not  distressed, is  communicating  normally and is making  decisions normally   Buckman R 1993 Communication in palliative care: a practical  guide. In: Doyle D, Hanks GWC, McDonald N (eds) Oxford  Textbook of Palliative Medicine. Oxford: Oxford Medical.    • Social: this includes sustaining and enhancing inter-  personal attachments of significance to the person,  and addressing the social implications of dying;  for example, wanting to know that dependants will  be cared for after their death   • Spiritual: for many people, identifying and reaffirm-  ing a sense of spirituality may foster hope or bring  reassurance.   Corr maintained that individuals have unique circum-  stances leading to unique tasks they must cope with  in each of these dimensions. The advantage of this  model of dying is that it encompasses different aspects  of the process rather than focussing on the psychologi-  cal aspect alone. However, its generality and lack of  empirical data limit its usefulness.    The Debate of the Age Health and Care Study Group  (Age Concern 1999) produced the following principles  necessary for a 'good death':   • To know when death is coming, and to understand  what can be expected   • To have control over pain relief and also symptom  control   • To have choice and control over where death occurs  (at home or elsewhere)   • To have access to information and expertise of  whatever kind is necessary   • To have access to any spiritual or emotional support  required   • To have access to hospice care in any location, not  only in hospital   • To have control over who is present and who shares  the end   • To be able to issue advance directives that ensure  wishes are respected   • To have time to say goodbye, and control over other  aspects of timing   • To be able to leave when it is time to go, and not to  have life prolonged pointlessly.   As mentioned earlier, over the past 1 00 years there has  been an increasing trend in dying outside the home.  This has led to a situation where most people die in hos-  pitals or other institutions. Each location has certain  advantages and disadvantages associated with it.   To many, the home remains the proper and natural  place to die. Dying at home may be more costly and  physically and emotionally demanding for carers. For  this reason it requires good communication between  hospital services and the carers. Additional support, in  the form of respite care, meals on wheels, and Macmil-  lan nurses may be welcomed.   This accounts for around only 4% of deaths. The hospice  philosophy is one that concentrates on promoting qual-  ity of life over prolonging life. Dying in a hospice may  bring reduced levels of anxiety and depression when  compared with similar care in hospitals - this may be  due to a culture of frank and honest communication.   Hospitals have not historically been especially quick to  have wards dedicated solely to the treatment of the ter-  minally ill, fearing the stigma that may be attached to    such 'death wards'. However, this has led to some termi-  nally ill patients dying on busy general wards, which is  unsatisfactory for all patients, families and staff. One  study has demonstrated that many patients' symptoms  are not adequately controlled, and many received inad-  equate nursing care. Furthermore, terminally ill patients  may receive only minimal care from senior medical and  nursing staff on general wards.   In North America, retirement villages have been set up  and some have been associated with specialist nursing  facilities that are available to those requiring terminal  care. This sort of facility has allowed elderly residents  to talk among themselves about death, and has enabled  a shared perspective and collective concern to develop.  Residents feel a greater degree of control over the pro-  cess of dying. It differs from traditional nursing homes,  where the dying person is isolated from other residents.   Glaser and Strauss (1965) described four different types  of 'awareness context' in the management of dying  patients in San Francisco Bay area hospitals in the  1960s. These were:   1. Closed awareness: where patients were kept ignorant  of their impending death by staff and family alike   2. Suspicion awareness: where patients had begun to sus-  pect that they were dying and had tried to obtain con-  firmation of this suspicion from both staff and relatives   3. Mutual pretence: where all parties knew that the  patient was dying, but no-one acknowledged this fact   4. Open awareness: where all parties knew that the  patient was dying and were able to talk about dying.   Since the 1960s, there has been a progressive move away  from the closed awareness context towards one of open  awareness. Open awareness is now seen as a prerequisite  for a 'good death'. There is a general consensus that hon-  esty within the medical consultation is necessary, even  when the patient has a terminal disease.   In the past decade or so, the concept of conditional open  awareness has developed. This stresses that disclosure  can take place over a period of time and that full disclo-  sure of terminal prognoses is conditional on what is  desirable for particular patients. Some individuals  may not wish to discuss their terminal prognosis. Con-  ditional open awareness is characterized by a shared  approach to confronting death, or if the patient wishes  to do so, denying a terminal prognosis. The aim is to act  in such a way as to produce a positive psychological out-  come for the patient.   One-quarter of GP consultations have been identified as  relating to some type of loss - these include separations,  incapacitation, bereavement and job loss. Any loss can  lead to a detrimental effect on physical and mental  health. A major bereavement, such as the death of a  spouse or child, can increase the risk of death from heart  disease and suicide as well as increasing the likelihood  of anxiety and depression.   Even though mourning can be expressed in a variety of  ways, there is still a pattern to grieving, and it can make  sense to talk of a 'normal pattern of grief'. Worden  (1991) outlines a number of tasks that need to be achieved  in the course of mourning if it is to be completed:   • Task I: To accept the reality of the loss - the bereaved  is initially shocked, and may experience numbness,  disbelief or relief at the death.   The pattern of mourning varies from community to  community. For some Creek-Cypriots, there is a  ‘socially patterned period of weeping and wailing',  followed by a defined period of mourning and wearing  black. In Orthodox Jewish communities, there is a  prescribed timetable to mourning - in the first 7 days,  the bereaved remain at home and are visited by  consolers. Mourning dress is worn for 30 days, and  recreation and amusement are forbidden for 1 year.    • Task II: To work through the pain of grief - the   bereaved may experience anger, sadness, guilt, anxi-  ety, regret, insomnia and even transient auditory or   Age and sex of bereaved person - older widowers are at  greater risk than widows and younger individuals.  Similarly, the death of a parent is associated with greater  risk if the bereaved person is still a child or adolescent, as  opposed to an older individual, with their own family   Level of perceived social support, e.g. an absent or  unhelpful family   • Task III: To adjust to an environment in which the  deceased is missing - this may be characterized by  despair and a loss of direction. The bereaved may per-  ceive themselves as helpless, inadequate and childlike.   • Task IV: To emotionally relocate the deceased and  move on with life - during this phase, the bereaved  may start to develop new relationships and interests.  The deceased is no longer central in the bereaved  person's emotional life.   There is evidence that losses can help to foster maturity  and personal growth; however, there are a number of fac-  tors that are associated with a poor outcome (Fig. 7.12).   • Why do you think the use of alternative medicine has  been increasing?   • What sorts of problems are experienced by people  with chronic illness?   Alonzo, A., Reynolds, N., 1995. Stigma, HIV and AIDS: an  exploration and elaboration of a stigma strategy. Social  Sciences in Medicine 41, 303-315.   Armstrong, D., 1989. An Outline of Sociology as Applied to  Medicine, third ed. Wright, London.   Armstrong, D., 2003. Outline of Sociology as Applied to  Medicine, fifth ed. Arnold, London.   Banks, M.H., Beresford, S.A., Morrell, D., et al., 1975. Factors  influencing demand for primary medical care in women  aged 20-44. Int. I. Epidemiol. 4, 189-195 (as reproduced in  Armstrong D 2003 Outline of Sociology as Applied to  Medicine, fifth ed. London: Arnold).   Boorse, C., 1975. On the distinction between disease and  illness. Philos. Public Aff. 5, 49-68.   Boorse, C., 1976. What a theory of mental health should be.   Britten, N„ Stevenson, F.A., Barry, C.A., et al., 2000.  Misunderstandings in prescribing decisions in general  practice: qualitative study. Br. Med. I. 320, 484-488.   Bury, M., 1982. Chronic illness as biographical disruption.  Sociol. Health Illn. 4, 167-182.   Charmaz, K„ 1983. Loss of self: a fundamental form of  suffering in the chronically ill. Sociol. Health Illn. 5,  168-195 (as reported by Nettleton S 1995 The Sociology of  Health and Illness. Cambridge: Polity Press, p. 87).   Corr, C.A., 1992. A task based approach to coping with dying.  Omega 24 (2), 81-94 (as reproduced in Copp G 1998 A  review of current theories of death and dying. J. Adv. Nurs.  28(2): 382-390).   Cox, K., et al., 2003. A systematic review of communication  between patients and health care professionals about  medicine-taking and prescribing. GKT Concordance Unit,  King's College, London (as quoted in Weiss M, Britten N  2003 What is concordance? Pharma. J. 271: 493).   Damen, S., Mortelmans, D., Hove, E„ 2000. Self-help groups in  Belgium: their place in the care network. Sociol. Health Illn.  22 (3), 331-348.   Age Concern, 1999. Debate of the Age Health and Care Study  Group 1999. The Future of Health and Care of Older People:  The Best is Yet to Come. Age Concern, London.   Goffman, E., 1963. Stigma: Notes on the Management of  Spoiled Identity. Penguin, London.   Hannay, D., 1988. Lecture Notes on Medical Sociology.  Blackwell Scientific, Oxford.   Heath, I., 2003. A wolf in sheep's clothing: a critical look at the  ethics of dmg-taking. BMI 327, 856.   Lawton, J., 2003. Lay experiences of health and illness:  past research and future agendas. Sociol. Health Illn. 25,  26-27.   Locker, D., 2008. Living with chronic illness. In: Scambler, G.  (Ed.), Sociology as Applied to Medicine, sixth ed. Saunders  Elsevier, Edinburgh.   Mead, N., Bower, P., 2002. Patient-centred consultations and  outcomes in primary care: a review of the literature. Patient  Educ. Couns. 48, 51-61.   Mechanic, D., Volkart, E.H., 1960. Illness behaviour and  medical diagnosis. J. Health Hum. Behav. 1, 86-94.   Medicines Partnership, What is concordance? Online.  Available at: http://www.medicines-partnership.org/  aboutus/concordance (accessed 20th October 2003).   Misselbrook, D., Armstrong, D., 2001. Patients' response to risk  information about the benefits of treating hypertension.   Scambler, G. (Ed.), Sociology as Applied to Medicine, sixth  ed. Saunders Elsevier, Edinburgh, p. 55.   Parsons, T„ 1951. The Social System. Free Press, Glencoe, IL  (as quoted by Morgan M, In: Scambler G (ed.) 2003 Sociology  as Applied to Medicine, fifth ed. Edinburgh: Saunders).   Roter, D., 2000. The enduring and evolving nature of the  patient-physician relationship. Patient Educ. Couns. 39  (5-15), 8.   Royal Pharmaceutical Society of Great Britain, 1997. From  compliance to concordance: towards shared goals in  medicine taking. RPS, London.   Scambler, G., 2003. Deviance, sick role and stigma. In:  Scambler, G. (Ed.), Sociology as Applied to Medicine, sixth  ed. Saunders Elsevier, Edinburgh, pp. 205-220.   Scambler, G., Hopkins, A., 1986. Being epileptic: coming to  terms with stigma. Sociol. Health Illn. 8, 26-43 (as reported  in Scambler G 2003 Deviance, sick role and stigma. In:  Scambler G (ed.) Sociology as Applied to Medicine, fifth ed.  Edinburgh: Saunders, p. 196).   Sheldon, 1998. ABC of palliative care: bereavement. Br. Med. J.  316, 456-458.   Toon, P.D., 1981. Defining 'disease' - classification must  be distinguished from evaluation. J. Med. Ethics 7,  197-201.   Towle, A., Godolphin, W., 1999. Framework for teaching and  learning informed shared decision making. Br. Med. J. 319,  766-771.   Verbrugge, L.M., lette, A.M., 1994. The disablement process.  Soc. Sci. Med. 38, 1-14 (as reproduced in Locker D 2008    Living with chronic illness. In: Scambler D (ed.) An Outline  of Sociology as Applied to Medicine, sixth ed. Edinburgh:  Saunders Elsevier).   Williams, G., 1984. The genesis of chronic illness: narrative  reconstruction. Sociol. Health Illn. 6, 175-200.   Zborowski, M., 1952. Cultural components in response to  pain. Journal of Social Issues 8, 16-30.   Zola, I., 1973. Pathways to the doctor: from person to patient.  Soc. Sci. Med. 7, 677-889 (as reported in Scambler G 2003    Health and illness behaviour. In: Scambler G (ed.)  Sociology as Applied to Medicine, fifth ed. Edinburgh:  Saunders).   Barry, C., et al., 2000. Patients' unvoiced agendas in general  practice consultations: qualitative study. Br. Med. J. 320,  1246-1250.   Scambler, G. (Ed.), 2008. Sociology as Applied to Medicine,  sixth ed. Saunders Elsevier, Edinburgh.   This chapter considers the strengths and weaknesses of  the UK National Health Service. Beyond passing exams,  it is important for medical students and doctors to  understand how health care is provided. This under-  standing is improved by considering how health care  was provided in the UK prior to the NHS, as well as  alternatives to a UK-style NI IS.   If you understand how health care is provided and paid  for, you will have a deeper understanding of the  services which you can provide both as a doctor and as  a possible future leader in health care.    Prior to the National Health Service (NIIS) there were  several elements to healthcare provision in the UK:   • General practitioners (GPs) - mainly for those who  could afford them, were also part of insurance  schemes, e.g. the Friendly Societies (non-profit-  making, mutual benefit organizations) or were  affiliated with trade unions.   • Hospitals - primarily used by the poor. They were  either voluntary (run by charitable foundations) or  municipal (local authority) hospitals. The latter pro-  vided services for the more chronic illnesses.   • Public health and community health services (CHS) -  aimed to improve the water supplies and sewerage.  Eventually, they attempted to control and treat  infectious diseases. Public health and CHS (and hous-  ing) were under the control of the local authorities, not  health services, and this continued until the early  1970s.   Another crucial aspect to remember is that, in the nine-  teenth century, hospitals were considered very danger-  ous places owing to the lack of anaesthesia and  aseptic techniques. For those who could afford it, a  fee-for-service consultation with a qualified practitioner  in the surgery or at home was possible. Friendly Socie-  ties (see above) and trade unions allowed other groups,  e.g. skilled workers, to use GPs.   The same period also saw the Poor Law system being  practised. The 'poor laws' were enacted at the time of    Queen Elizabeth I and represented the oldest form of  government intervention in welfare. The poor laws  catered for the needs of the very poorest people and  the unemployed. However, patients had to be 'deserv-  ingly poor' to qualify for treatment. Even though the  standards of these hospitals rose in the 1930s when they  were taken on by local authority health departments,  their status always remained low, owing to their origins.    In 1 9 1 1 , the UK government took over and extended the  role of the Friendly Societies by introducing a 'National  Health Insurance' (NF1I) scheme for GP services. Insur-  ance premiums were paid to the government in the  form of deductions from pay packets; these premiums  then funded general practice cover for that person.  Workers who earned under £ 160/year had to insure  themselves by paying fourpence; the employer paid  threepence; and general taxation paid twopence (The  Prime Minister at the time called it the 'ninepence for  fourpence'). The NHI scheme covered manual workers  between the ages of 16 and 65 years and also provided  funds for sickness, accident and disability benefits in  cash. Hospital and specialist care were not included.  National healthcare services were extended to all the  population in 1948 when the NHS came into being.  With the inception of the NHS, the government moved  from being the organizer of the insurance system to  being the provider of healthcare services to all citizens  as a civic right.    During the Second World War, it emerged that the state  could have a positive impact on the lives of its people by  intervening in many areas of public life. All hospitals  had been brought under state control as part of the  Emergency Medical Service. The landmark Beveridge  Report (1942) established the principles for a post-  war 'welfare state'. In 1944, the Ministry of Health  set out its plans for a comprehensive health service. After  a series of negotiations between the government and the   Open to the whole population purely on the basis of  healthcare need   Equality in provision of health services irrespective of  means, age, sex and occupation  Funded almost entirely by general taxation revenues  collected by the government    British Medical Association (BMA), the National Health  Service Act 1946, created the NHS in 1948 (Fig. 8.1).   Interestingly, the financial estimates that were put to  Parliament along with the White Paper setting up the  NHS anticipated a fall in the cost of the NHS, based  on the assumptions of effective health promotion and  improved public health leading to improved health of  the population.   The NHS has proved to be a fairly dynamic system  undergoing continuous reform, particularly since the  1970s. Its ultimate goal has always been to improve  the quality of patient care.    1. Hierarchical (1948-1979) - totalitarian control by  officials and politicians (and, some would argue,  senior doctors) at a national level. A classic example  of 'top-down' regulation   2. Market (1979-1997) - introduction of market  mechanism, dividing purchasers from providers  and encouraging the competitive tendering of sup-  port services, e.g. cleaning   3. Network (1997-present) - amalgamating the pros  and cons of (a) and (b) above. Encouraging collab-  orations and partnerships within the system  (Fig. 8.2).   This chapter is based on the organization of the NHS in  England. There are variations in other areas of the UK.  The organization of the NHS is based on giving the pri-  mary care organizations (PCOs) greater freedom to  make the purchasing decisions for local health services.  All GPs are members of PCOs. It also strives to stream-  line the system overall, while being user-friendly for the  patient (Fig. 8.3).   The NHS has several strengths and weaknesses. These  need to be understood so that as decision-makers of the  future, we know what areas to tackle (Fig. 8.4).    Fig. 8.2 Chronological list of landmark events in the shaping of the NHS.   Inequalities in the geographical  distribution of hospital beds and staff  requirements   More integrated structure with regional health authorities  overseeing area health authorities so correct dispatch of  finances to hospitals and community health services  CPs remained independent   Hospital plan for England and Wales proposed the  creation of a modern district general hospital (DGH) that  could treat 250 000 people   Difficult for central government to set  policy, oversee expenditure and monitor  performance   Single general manager appointed at every level in the  NHS with powerto undertake executive decisions over the  resources they managed   Demand greater than supply  Inadequate funding resulting in poor  maintenance of infrastructure, low staff  pay and lowering standard of care  Increasing waiting lists   Community Care Act 1 990 became law  Internal market introduced to separate the roles of  purchaser and provider   New GP contract giving autonomy to larger GP practices  Medical audit made compulsory for both hospitals and GPs  Health authorities streamlined   Poor implementation of internal market  Too much control by central  government   Too much emphasis on quantity  rather than quality of health care  Internal market getting chaotic   A new system based on 'partnership' and 'collaboration'  Regional autonomy - separate White Papers introduced  for England, Ireland, Wales and Scotland  Individual funding for GP practices abolished, instead they  got their funding from their local Primary Care Group  (PCG) or Primary Care Trust (PCT)   National Institute for Clinical Excellence (NICE) set up in  1999 to assess the best available evidence on the  effectiveness and cost-effectiveness of treatments, drugs  and technologies (old and new) and to produce official  guidance on whether they should be funded as part of the  NHS   Commission for Health Improvement (CHI) set up in 2000  to monitor and improve the quality of NHS services   Making the NHS more receptive to the needs of its users  Establishment of NHS Direct and NHS walk-in centres  Setting NHS plan performance targets  Public-private partnerships encouraged  ‘Choose and book' system allows patients to choose  (within limits which hospital they are referred to (this  includes a number of non-NHS facilities)   The Heath and Social Care Act 2012 aims to reduce costs  by reducing a layer of management (abolishing PCTs) and  making groups of CPs (commissioning consortia)  responsible for local funding decisions  Government plans to remove geographical boundaries for  access to a CP. Access to most types of health care based  on which GP patients are registered with rather than  where they live   Proposed personal budgets for patients, who might be  allowed to choose how their personal allocation is spent    A major issue that continues to confront the NHS is  the imbalance that occurs between healthcare funding  and usage. This has possibly been exaggerated by what  Heath (2008) called the 'credibility gap', where govern-  ments promise services and quality standards without  considering the context or providing additional  resources. The result, according to Heath, is that patients  are ever more demanding while healthcare profes-  sionals become less vocational and more business-  orientated.   One of the main demands on the NHS, which  appears to be increasing, relates to an ageing population  in the UK. It is estimated that one-third of all men aged  between 50 and 65 years old do not work. This is due  partly to early retirement and pension incentives or to  employer-based age discrimination. Furthermore, the  all-cause death rates have decreased in the last 20 years.  People are living longer. According to the government's    own estimates, the number of people aged 65 years or  older will double by the year 2036. NHS services to peo-  ple in this age group account for a large proportion of  NI IS resources.   Inevitably, there will be increased spending by the  government. However, the birth-rate has also been  declining, meaning that there will be fewer young  people entering the job market. If current trends con-  tinue, there will be a shortage of future taxpayers rel-  ative to the elderly. Other sources of finance will have  to be sought apart from possible increases in general  taxation.    Fig. 8.3 Structure  of the NHS in  England 2007. From  Talbot-Smith and  Pollock 2006, with  permission.   Lack of receptiveness to the needs of the patient coupled  with lack of choice   Increased demand for greater spending budget has not increased  proportionately to demand or in line with other European countries   Parallel privately financed companies may compromise the fairness of  the NHS in providing health care   Initial assessment in hospitals often conducted by junior and  inexperienced doctors    Funding and provision of health care varies greatly in dif-  ferent countries. Over the course of the twentieth century,  governments have taken an active role in trying to provide  the best possible health services. Patients also have indi-  vidual rights and expectations of their healthcare system.   According to Fitzpatrick (2003) and Field (1973),  healthcare systems can be divided into four categories  (Fig. 8.5):   a. several non-integrated methods of providing  funds, e.g. insurance, fee-for-service, etc.   a. third party gathers resources in the form of com-  pulsory insurance.   b. independence of doctors, despite the fact that  they receive most of their income from the  government.    A vast number of professional groups provide health  care in modern Britain. These include hospital doctors,    nurses, radiographers, GPs, community nurses, care  assistants, pharmacists and social workers, to name  but a few. With so many professionals looking after  the patient, there are bound to be problems, such as  misunderstandings, poor communication, mistrust  and sometimes conflict.   The medical profession as we currently know it in  the UK, historically began as three different types of  practitioner: physicians, surgeons and apothecaries.  Physicians needed to have a university degree in medi-  cine and had to be members of the Royal College of  Physicians. A physician was not allowed to cut into  the body, but had to direct a surgeon to do so. Surgeons  were trained by apprenticeship, and had to be members  of the Royal College of Surgeons (for a discussion of  what the Royal Colleges do today, see Chapter 2).  Apothecaries made the medicines which the physicians  prescribed but were not allowed to give medical advice.  From 1815, apothecaries were obliged to obtain a  licence from the Worshipful Society of Apothecaries  (this involved 6 months of hospital experience as  well as courses in pharmacy and medicine). During  the eighteenth century, 22 different licensing bodies  allowed individuals to practise medicine. Conflict arose  between the different groups of practitioners, all of  whom wanted the right to practice independently  and to regulate 'official' healthcare provision. In  1858, the Medical Registration Act created the General  Medical Council (GMC), and united doctors into a sin-  gle professional group. Even towards the end of the  twentieth century, however, doctors could qualify for  practice in three ways: a medical degree, a conjoint  diploma from the Royal Colleges of Physicians and   Lack of access - many people cannot afford it  Medical monopoly resulting in increased cost  Individual access and lack of public-health initiatives   Everyone is equal and no  other option, e.g. no private  care for patients   Difficult to maintain quality and keep up with latest technologies  Rationing    Surgeons, or a licence in medicine and surgery from the  Society of Apothecaries.   The boundaries between doctors and nurses have  changed. Nurses now take on prescribing and treatment  roles. Also in the UK, the reduction in the number of  working hours for junior doctors means that nurse prac-  titioners have assumed some of the roles previously  undertaken by doctors. Many types of healthcare pro-  fessional look after patients. There has been strong  appreciation for the roles played by social workers,  pharmacists, physiotherapists and nutritionists. Medi-  cal students' knowledge of the roles of other healthcare  professionals can be tested in both written and clinical  examinations.   Carr-Saunders and Wilson (1933) defined 'profes-  sionals' according to their characteristics or traits:   • Possession of altruistic values - these are integral for  functioning and performance is valued more than  financial reward   • Discrete body of knowledge over which members  have complete control   • Able to regulate their own working conditions inde-  pendent of the state   • Lengthy period of training, the quality and content  of which is determined by the profession itself   While the 'trait-approach' has received criticism, it does  serve to highlight the independence and power of some  professional groups, particularly doctors. Larson (1977)  introduces the idea of a 'professional project', which  entails developing claims to a privileged social position  and the ability to sustain this over time. MacDonald  (1995) argues that professionals attempt to build up  assets or capital in three ways:   1. Economic assets - including prestigious properties  owned by The Royal Colleges   2. Organizational status - healthcare professionals are  given power by the state to control large-scale orga-  nizations, e.g. the NHS   3. Cultural assets - adequate scientific knowledge, repu-  tation and credentials supported by the activities of  the professional bodies, e.g. the Royal Colleges allow  members to be key advisors to the government.   In general, the medical profession accumulated a lot of  power up to the middle of the twentieth century. Profes-  sional groups are under continuous scrutiny by the gov-  ernment, the public and the media. The entire medical  profession has been shaken by high-profile cases of  medical negligence and malpractice.   Remember: Medical students' knowledge of the roles  of other healthcare professionals can be tested in  both written and clinical examinations. For example, do  you know the respective roles of the occupational  therapist, physiotherapist and district nurse in  facilitating the discharge from hospital of an elderly  patient?    A holistic model of care involves all aspects of patient  needs being addressed. The services provided by social  workers, physiotherapists, pharmacists, nutritionists  and occupational therapists are all important in provid-  ing a 'holistic' model of care for the patient. Some of the  roles of the doctor are now performed by nurses. These  include prescribing and treatment roles.   In the UK and elsewhere, some operations can be  performed by surgical care practitioners (SCPs). SCPs  are experienced nurses who have undergone further  training to perform specific procedures, thereby giving  the surgeons time to deal with more complicated  cases.    The term 'community care' describes how society  should meet the health and social needs of dependent  people - specifically, care in the community (i.e. not  in hospital) by the community (i.e. by carers/commu-  nity healthcare practitioners). It also refers to the ser-  vices that are currently provided to dependent groups.  Dependent groups include:   Since the 1980s, informal care from family, friends, rel-  atives and voluntary organizations has become more  significant and public, as the shift from institutional  care to community care has been enacted. The key  obstacles to implementation of effective community  care are a lack of resources, managerial difficulties and  coordination between social and health services. All  healthcare professionals should acknowledge the rise  of carers and provide them with sufficient information  and support to both help the person they care for and  help themselves.   The NHS and Community Care Act 1990 dictated  the working together of local authority social services  and the NHS, so as to harmonize packages of care  with other agencies and users. Subsequent legislation  requires these services also take account of the needs of  informal carers.   • Reduction in hospital beds - their number has been  diminishing for a long time, partly due to improve-  ment in techniques and policies that allow short  stays in hospital, and also to reduce costs. There  has also been an increase in the use of day surgery  and reduced stay for acute medical conditions   • Patient and client groups - all patients can benefit  from good community care. In particular, depen-  dent groups can be treated more effectively in this  manner and reduce the time spent at institutions,  e.g. hospitals (Fig. 8.6).   Community care can, to a certain extent, be funded by  the reduced costs brought about by the closure of bigger  institutions, but sufficient bridging funding must be  established so that appropriate community care is set  up prior to discharging people from bigger institutions.   • Political accountability - the government determines  the healthcare system that a nation adopts and as  such decides how much funding it gets   • Diversity - how many services can the organization pro-  vide, e.g. podiatry, psychiatry, community nursing, etc.   • Complex and rapidly changing external environment -  economic, sociological, technological and political   Value for money, flexibility of  community services and minimal  fixed costs   More can be done at home by the  GP and community nurses   • Changing technologies - unlike hospitals, which have  the latest technology, human skills in community-  care settings have been taken for granted and it is  only recently that the latter has benefited from  advances in information technology   • Working conditions - stakeholders in community care  need to recognize the factors that motivate their  health professionals and support staff.   Basing more health care in the community has been one  of the arguments behind the 20 1 2 Health and Social Care  Bill, as well as putting GPs in charge of much of the NHS's  £106 billion annual budget (at time of writing).    A range of government departments - apart from the  Department of Health (DoH) - have responsibilities  that impinge on health, and work in partnership with  the NHS. They include:   • Communities and Local Government: responsible  for housing, regional and local government. See:  www.communities.gov.uk   • Home Office: lead responsibility for progress on the  drug strategy; the Home Secretary chairs the cross-  government Cabinet ministerial subcommittee on  drugs policy, local crime and disorder reduction  partnerships. See: www.homeoffice.gov.uk/drugs   • Department for Education: responsible for children's  social care policy, child safeguarding and initiatives  to improve health, education and emotional devel-  opment for young children in disadvantaged areas.  The Healthy Schools programme is run jointly with  the DoH. See: www.education.gov.uk   • Department for Environment, Food and Rural Affairs:  responsibilities include: water, farming, fisheries,  horticulture, and some aspects of rural health and  well-being. Protection from the effects of pollution  or toxic chemicals is a particular concern. See:  www.defra.gov.uk.   • Describe the evolution of the NHS since its birth in  1948, including the major reforms undertaken.   • Outline the strengths and weaknesses of the NHS  system in the twenty-first century.   • Show how the boundaries between medical, nursing  and other healthcare professions have changed since  the early twentieth century.   • What government departments besides the  Department of Health have health-related  responsibilities?   Field, M., 1973. The concept of the 'health system' at the  macrosociological level. Soc. Sci. Med. 7, 763-785.  Fitzpatrick, R., 2003. Organizing and funding health care. In:  Scambler, G. (Ed.), Sociology as Applied to Medicine, fifth  ed. Saunders, Edinburgh, pp. 292-307.    Heath, I„ 2008. The mystery of general practice. In: Matters  of Life and Death: Key Writings. Radcliffe, Oxford,  pp. 87-123.   Larson, M.S., 1977. The Rise of Professionalism: A Sociological  Analysis. University of California Press, Berkeley, CA.   Talbot-Smith, A., Pollock, A.M., 2006. The NHS: a guide to its  funding, organization and accountability. Routledge, London.   Armstrong, D., 2003. Organizing health care. In: Outline of  Sociology as Applied to Medicine, fifth ed. Arnold, London.   Jones, I.R., 2003. Health professions. In: Scambler, G. (Ed.),  Sociology as Applied to Medicine, fifth ed. Saunders,  Edinburgh, pp. 235-247.   Langmuir, A.D., 1963. The surveillance of communicable diseases  of national importance. N. Engl. J. Med. 268, 182-192.   Mays, N„ 2008. Origins and development of the national  health service. In: Scambler, G. (Ed.), Sociology as Applied to  Medicine, sixth ed. Saunders Elsevier, Edinburgh.   Scambler, G. (Ed.), Sociology as Applied to Medicine, sixth ed.  Saunders Elsevier, Edinburgh.   This chapter is co-authored with Elizabeth Morrow, PhD  Student, Dept of Political Economy, King's College London.   This chapter considers inequalities in health and  healthcare provision by social class, gender, ethnicity  and age.    There is a long tradition in Britain of analysing national  statistics to shed light on the nature and causes of social  inequalities in health (Figs 9.1, 9.2). In 1837, William  Farr set up the General Register Office. Farr, as the first  Superintendent of Statistics, clearly believed that it was  the responsibility of the national office not just to  record deaths, but to uncover underlying linkages which  might help to prevent future disease and suffering.   In the nineteenth century, the associations between  various occupations and health were put down to:  specific work-related hazards and variation of income -  which affected the provision of nutrition and housing.   In 1942, the Beveridge Report set out a national  programme of policies to combat the 'five giants of Want,  Disease, Ignorance, Squalor and Idleness'. In 1977, the  Research Working Group on Inequalities in Health,  chaired by Sir Douglas Black, was established. The result-  ing 'Black Report' presented in 1980 attempted to explain  trends in inequalities in health. It argued that inequalities  in health were a result of inequalities in society. While the  recommendations of this report had a significant effect in  academic circles, it arguably failed to produce meaning-  ful change in political policies (health inequalities grew  throughout the 1980s).   In 1997, the recently elected 'New Labour' govern-  ment set up an independent inquiry chaired by Sir  Donald Acheson. The Acheson Inquiry, published in  1998, identified the following as areas where policy  could redress health inequalities by tackling socio-  economic factors:    The Acheson Inquiry, which published its Report in  November 1998, confirmed that for many aspects of  health, inequality had worsened throughout the  1980s and early 1990s. The Report recommended that  many government departments - not just the Depart-  ment of Flealth - should collaborate in order to reduce  health inequalities (see Chapter 8 for a list of depart-  ments which have an impact on health in the UK).   In 1999, the government outlined its strategy for  addressing health inequalities in the document 'Saving  Lives: Our Healthier Nation' (DoH 1999). The strategy  aimed to improve the health of everyone generally and  of the worst-off in particular. More specifically, the strat-  egy set targets to be achieved by 20 1 0 in four major areas  of health. These were:   • cancer - to reduce the death rate in people under 75  by at least 20%   • coronary heart disease and stroke - to reduce the  death rate in people under 75 by at least 40%   • accidents - to reduce the death rate by at least 20%  and serious injury by at least 10%   • mental illness - to reduce the death rate from suicide  and undetermined injury by at least 20%.   Social stratification refers to the way in which an indi-  vidual who is disadvantaged in one area of life tends  to be disadvantaged in others as well. Thus, an indi-  vidual with a low income probably also has a reduced  access to quality housing, education and healthcare  services. The concept of 'social class' has been used  to describe social stratification within British society.  The stratification most widely used in current  official UK statistics is the National statistics: socio-  economic classification (NS-SEC, Fig. 9.3). Although  the NS-SEC is an occupationally based classification,  it can also be applied to the adult population at large  (ONS 2010).   Classically, discussions of social stratification in the  general population refer to:   • 'working-class' - characterized by earning weekly  wages in manual jobs; renting homes, mainly from  a local authority; and the aspiration of getting their  children in a good job as soon as they are allowed to  leave school   A boy bom to one of the two lowest social classes has a life expectancy of 70 years in the UK - 5 years less than a  boy born to one of the highest two classes.   Each of the main disease groups shows a wide health gap among men, with those in the highest two social classes  experiencing lower mortality than men in the lowest two.   Men aged between 20 and 64 years from the bottom social class are three times more likely to die from coronary heart disease  and stroke than those in the top social class.   Mortality from all major causes has been found to be consistently higher than average among unemployed men;  unemployed women have higher mortality from coronary heart disease and suicide than employed women.   Children from the households of manual workers are more likely to suffer from chronic sickness and tooth decay than  children from the households of non-manual workers.   Men in manual classes are about 40% more likely to report a longstanding illness that limits their activities than those in  non-manual classes.    • 'middle-class' - characterized by earning monthly  salaries in non-manual jobs; borrowing money to  buy their own homes; and encouraging their chil-  dren to gain as much formal education as possible.  Because the use of the NS-SEC is relatively new, many  examples of social stratification in teaching still use  the older Registrar General's classification. This divides  the population into five social classes based on occupa-  tion according to skill level and general social standing  (Fig. 9.2). Within this classification:    • men are allocated a social class according to their  occupation   • married women are allocated a social class according  to their husband's occupation   • single women are allocated a social class according  to their own occupation   • children are allocated a social class according to that  of their father   • the unemployed/retired are allocated a social class  according to that of the last significant period of  employment.   1 . The classification is a measure of social status rather  than income.   2. Each class is not internally homogeneous, e.g. for  example, 'manager' in social class II includes the  owner of a corner-shop and the managing directors  of multinational companies.   3. The classification is inadequate in the way it deals  with women. A married woman is classified accord-  ing to the class of her husband, even though her  income may be decisive in determining the standard  of living of the family.    4. The classification is increasingly irrelevant given the  flexible nature of labour markets, job insecurity and  unemployment rates.   Even though overall death rates have fallen consider-  ably over the past 200 years, the difference between  'rich' and 'poor' has persisted. The Acheson Inquiry  observed that:   Inequalities in health exist, whether measured in  terms of mortality, life expectancy or health status;  whether categorised by socioeconomic measures  or by ethnic group or gender. Recent efforts to  compare the level and nature of health inequal-  ities in international terms indicate that Britain  is generally around the middle of comparable  western countries, depending on the socioeco-  nomic and inequality indicators used.   • Over the previous 20 years, death rates had fallen  among both men and women and across all social  groups.   • The difference in death-rates between those at the  top and bottom of the social scale had widened.   • In the early 1970s, the mortality rate among men  of working age was almost twice as high for those  in class V (unskilled) as for those in class I (profes-  sional). By the early 1990s, it was almost three  times higher (Fig. 9.4). This increasing differential  is because, although rates fell overall, they fell more  among the high social classes than the low social clas-  ses . Between the early 1970s and the early 1990s, rates  fell by about 40% for classes I and II; about 30% for  classes IIIN, IIIM and IV but by only 10% for class V.   • Both class I and class V represent only a small propor-  tion of the population that falls at either extreme of  the social scale. Combining class I with class II and  class IV with class V allows comparisons of larger  sections of the population. Among both men and  women aged 35-64 years, overall death rates fell for  each group between 1976 and 1981 and 1986-1992  (Fig. 9.5). At the same time, the gap between classes  I and II and classes IV and V increased. In the late  1970s, death rates were 53% higher among men in  classes IV and V compared with those in classes I  and II. In the late 1980s, they were 68% higher. Among  women, the differential increased from 50% to 55%.   • These growing differences across the social spectrum  were apparent for many of the major causes of death,  including coronary heart disease, stroke, lung cancer  and suicides among men; and respiratory disease  and lung cancer among women.    • Death rates can be summarized into average life  expectancy at birth. For men in classes I and II com-  bined, life expectancy increased by 2 years between  the late 1970s and the late 1980s. For those in classes  IV and V combined, the increase was smaller: 1.4  years. The difference between those at the top and  bottom of the social class scale in the late 1980s  was 5 years; 75 years compared with 70 years.   • In the 1970s and 1980s there was a 2-year improve-  ment in life-expectancy for women in classes I and II,  yet for women in classes IV and V there was only a 1  year improvement in life expectancy.   • A good measure of inequality among older people is  life expectancy at age 65 years. Again, in the late  1980s, this was considerably higher among those  in higher social classes, and the differential increased  over the period from the late 1970s to the late 1980s,  particularly for women.   • There is little evidence that the population is  experiencing less morbidity or disability than 10 or  20 years ago. There has been a slight increase in self-  reported long-standing illness and limiting long-  standing illness.   • Among men, major accidents are more common in  the manual classes for those aged under 55 years.  Between 55 and 64 years, the non-manual classes  have higher major accident rates. For women, there  are no differences in accident rates until after the age  of 75 years, when those women in the non-manual  group have higher rates of major accidents.   • 10% of men in classes IV and V were dependent on  alcohol compared with 5% in classes I and II.   In addition, the 1997 Health Inequalities Decennial  supplement (ONS 1997) showed the following:   • There is a social class gradient in the prevalence of  hypertension (Fig. 9.6).   • The manual classes consult their GP more often than  non-manual classes.   • In both sexes, members of social class I had more pos-  itive health- related behaviours - such as not smoking,  regular dental and ophthalmic check-ups, eating well  and exercising regularly - than social class V.   The 1977 Black Report (Black et al., 1980) proposed  four explanations as to why there was an association  between social class and health. These were:   1. Artefact: the association is spurious because of the  way the concepts involved are measured:  a. One example of this is numerator-  denominator bias: this comes about because    Fig. 9.4 European standardized mortality rates by social class, selected causes, men aged 20-64, England and Wales,  selected years.    mortality rates (in the Black Report) relied on  figures from two different sources. The number  of deaths in each social class came from death  registration. The number of individuals in each  class came from census data. Any attempt to    'promote' oneself in the census would lead to  artificially increased rates in social classes IV  and V. However, longitudinal study of 1% of  the 1971 census population showed this is  unlikely.    Fig. 9.5 Age-standardized mortality rates per 100000 by social class, selected causes, men and women aged 35-64, England  and Wales, 1976-1992.    b. Infant mortality and social class: a number of fac-  tors were originally used to assign each occupation  to a social class, which included housing, behav-  iour, education and wealth - factors that are  known to have an influence on infant mortality.  So those factors that cause infant mortality are    used to determine a low social class status. To then  claim that low social class status itself causes  increased infant mortality is artefactual. However,  social class grading depends on a number of factors  (which are linked to worse infant mortality) - so it  is not entirely artefactual.    2. Social selection: this explanation argues that rather  than social class determining health, health deter-  mines social class. The proposed mechanism for this  is that if people fall ill, they are unable to secure  employment in classes I and 11. For example, a  schizophrenic with active disease may not be able  to work as a doctor or lawyer, but could probably  find some semi- or unskilled work. It seems proba-  ble that the healthy are socially mobile upwardly,  and the unhealthy move downwards. However, this  explanation is unlikely to be sufficient to account for  the whole of the social class gradient. Scambler and  Blane (2003, p. 118) observe that:   a. the gradient is already present in children before  social mobility has had a chance to occur   c. the class differences are roughly the same for  acute and chronic diseases - if the gradients were  due to social mobility, it would be expected that  they would be steeper in chronic diseases where  there is more time to move downwards   e. incapacity does not always lead to downward  mobility - it may involve early retirement, unem-  ployment or moving to less-demanding jobs, which  might lead to a reduction in income but not a reclas-  sification on the Registrar General's classification.   3 . Behavioural/cultural: Some consider that the middle and  working classes have different cultures. As Armstrong  (1989) points out: 'they have different habits, read dif-  ferent newspapers, watch different television pro-  grammes, have different leisure activities, have  different oudooks on life, and so on'. Therefore differ-  ent classes may have different health-related behav-  iours. Relevant health-related behaviours include:   i. In 1974, 50% of men and 40% of women  smoked cigarettes   ii. In 1996, less than 30% of men and women  smoke - this breaks down into: men, 12 %  (social class I) and 4 1 % (social class V) ; women  1 1 % (social class I) and 36% (social class V)   i. The proportion of women who drank more  than 14 units of alcohol a week rose from  9% in 1984 to 14% in 1996   ii. In spite of the major class differences in  dependence on alcohol in men, there are very  small differences in the reported quantities  consumed. The implication is that social  harms linked to alcohol are more evident in  lower social classes. By contrast, higher class  women have been reported in the past to con-  sume more alcohol than lower class women.   i. Women - similar rates in levels of physical  activity are reported across the social classes.   ii. Men - the manual classes report a higher  level of physical activity than the non-  manual classes. However, the manual classes  could be engaging in work-related physical  activity, in contrast to the non-manual clas-  ses, who are more likely to participate in lei-  sure physical activity.   i. People in lower socioeconomic groups tend  to eat less fruit and vegetables, and less food  that is rich in dietary fibre.   ii. One aspect of dietary behaviour that affects  the health of infants is the incidence of  breast-feeding. Six weeks after birth, almost  three-quarters of babies in class I households  are still breast-fed. This declines with class to  less than one-quarter of babies in class V. The  differences between classes in rates of breast-  feeding at 6 weeks narrowed slightly between  1985 and 1995.   The implications of cultural explanations for the  health inequalities are twofold:   • Health inequalities may not be reduced by  improved economic equality.   • Perhaps certain health inequalities should not be  eradicated - as Armstrong points out: 'If . . . a  working class man smokes because he finds plea-  sure in the activity, and he is less concerned  about the long-term consequences, do middle  class health professionals have a right to tell  him that his values are mistaken and that he  should substitute deferred gratification . . .?  There is evidence that cigarette smoking is an  integral component of the lifestyle of many  working class people; is it morally right to try  and change this for a middle class value?'   4. Materialist: this explanation was favoured by the  Black Report as being of the greatest significance.  The Acheson Inquiry also subscribed to this sort of  explanation, barely mentioning artefact and social  selection. The materialist argument holds that the  association between social class and health is caused  by the associated levels of material deprivation.  Examples of this include:   a. Lack of essential material possessions such as  clothes and food   b. Poor (e.g. damp, overcrowded and cold)  housing which can (especially for older peo-  ple) contribute to poor health. Housing may  be situated in areas with high levels of atmo-  spheric or environmental pollution and there  may not be suitable areas for children to play  outside    c. Poor access to education and health care. Hous-  ing prices tend to increase in areas with good  schools, whereas lower-achieving schools are  located in areas of poor housing. The children  of poor families are therefore less able to use edu-  cation as a route out of the cycle of poverty.  Tudor Hart (1971) introduced the concept of  the 'Inverse Care Law', which claims that health  care is least available where it is most needed (i.e.  in areas inhabited by the working class) and,  therefore, it is under-utilized by the lower social  classes. This is somewhat supported by data  showing that the lower social classes are less  likely to use services such as screening, dental  care and postnatal examinations.   A GP called Julian Tudor-Hart (1971) introduced the  concept of the ‘Inverse Care Law’, which claims  that health care is least available where it is most  needed (i.e. in areas inhabited by the working class).  Others have suggested that even where healthcare and  other services are available, they are less accessible  to people from lower socioeconomic classes and,  therefore, under-utilized.    Further study has lent support to the materialist expla-  nation. It has been demonstrated that physical and  social disadvantage accumulates over the course of a  lifetime to produce poor health:   • Low parental social class is associated with health  disadvantages in utero and in the early years of life,  e.g. poor nutrition, increased incidence of chronic  illness in childhood, failure to thrive and slow  growth that leads to short stature for age and sex.   • Children from low parental class families fare less  well at school with poor educational achievement  resulting in poorer job prospects and an increased  likelihood of long-term unemployment. Childhood  disadvantage can thus lead to disadvantaged socio-  economic status in adulthood.   • Low educational achievement is also associated with  early parenthood, and lone parenthood (mostly  lone mothers), which in turn is associated with  increased poverty. The new generation of children  born to young or single parents are in turn exposed  to significant disadvantages. In the 1970s, 10% of  children in the UK lived in poverty, by the late  1990s, the proportion was 35%.   • Government policy, particularly regarding taxation  and social security benefits, has played a significant  role in this increase in child poverty.    • State benefits have declined in relative value in com-  parison with the incomes of higher earners. Relative  deprivation (rather than absolute deprivation) has  been increasing in the LIK. That is, the gap between  the rich and the poor has been getting bigger.   An important concept is the ‘cycle of poverty'. In  Victorian times (mid-nineteenth to early twentieth  century), it was said that ‘poverty caused disease which  caused poverty'. With the welfare state, this is arguably  less of a problem; however, being disadvantaged in  one area of life is associated with being disadvantaged  in others.   Marmot (2003) discusses the importance of social gra-  dients within societies leading to ill-health. He argues  there are three ways in which socioeconomic position  could be linked to health (Fig. 9.7):   Lie argues that although a high income is associated  with good health, it is merely an indicator for position  within society (status). For Marmot, it is status rather  than high income which is the most important predic-  tor of health. He draws a comparison between men in  Costa Rica (average income $2000 per annum and life  expectancy of 74 years) and Black American men (aver-  age income $26000 per annum and life expectancy of  66 years). Even adjusting for the fact that more can be  bought for less in Costa Rica than in the USA ($2000  in Costa Rica could buy the equivalent goods and ser-  vices of around $6600 spent in the USA), LIS Black  men still have a lower life expectancy, even though they  have an income that is almost four times greater. Mar-  mot argues that this is due to the relatively low status  occupied by Black American men within US society,  rather than due to absolute poverty. The mechanism  by which this occurs is the relative disadvantage in terms  of income within a society. Marmot suggests that this  'relative inequality . . . may correspond to absolute dis-  crimination and social exclusion'.   Marmot describes how health differences occur  along a social gradient even within a single socioeco-  nomic group. In his studies of civil servants (known  as the 'Whitehall studies'), he demonstrated that an  increased mortality and morbidity was associated with  progressive loss of power and control over their jobs.   In November 2008, Professor Sir Michael Marmot  chaired an independent review to propose the most    Fig. 9.7 The main determinants of health. (From Acheson 1998, with permission.)    effective evidence-based strategies for reducing health  inequalities in England from 2010.   The Marmot Report of health inequalities in England  post-2010, 'Fair Society, Healthy Lives', was published  in 2010. It highlights six policy recommendations  (Marmot 2010):   1 . Giving every child the best start in life (highest pri-  ority recommendation)   2. Enabling all children, young people and adults to  maximize their capabilities and have control over  their lives   As mentioned above, the Acheson Inquiry isolated six key  areas where policy improvements could help to reduce    the health inequalities in this country. In the paper 'Sav-  ing Lives: Our ITealthier Nation' (DoIT 1999), the LIK  government at the time addressed the Acheson Inquiry's  six areas and made policy recommendations as follows:   a. The 'Healthy Schools' programme, which involves  partnerships between local health and education  authorities to provide 'healthy' school environ-  ments and information for children about health   b. Establishment of educational resources, such  as a health website for children, see: www.  wiredforhealth.gov.uk   c. 'Cooking for kids' - an in-school educational  programme, which teaches the basics of healthy  eating and cooking.   a. the 'New Deal' - to encourage people to leave  welfare and enter the workforce    b. 'The Healthy Workplace Initiative' (1999) to  encourage healthy practices in the workplace.   c. The 'New Deal for Communities' provided  money to neighbourhoods to be used for devel-  oping social cohesion and strong social networks.   a. Encourage local authorities to prioritize trans-  port improvement in disadvantaged areas   b. Encourage local service providers, e.g. GP prac-  tices, pharmacists, to establish services in disad-  vantaged areas.   a. Improve access to affordable healthy foods for  people on low incomes   b. Restrict advertising of food high in salt, fat and  sugar targeted at children   c. 'Five-a-day' advertising campaign to increase the  amount of fruit and vegetables people eat   Many of these policies are 'upstream' policies designed  to have a wide range of consequences - including benefits  to health. The Acheson Inquiry recommended both  'upstream' and 'downstream' policies - those that deal with  wider (upstream) influences on health inequalities such as  income distribution, education, public safety, housing,  work environment, employment, social networks, trans-  port and pollution, as well as those which have narrower  (downstream) impacts, such as on healthy behaviours.   • The materialist perspective contends that health  inequalities are due to inequalities in wealth   • Inequalities in health are associated with a variety of  social and environmental factors   • The Acheson Inquiry did not consider artefact and  self-selection to be significant causes of inequalities in  health between social classes - research in the 1980s  and 1990s showed that materialist and behavioural  explanations are more useful tools for understanding  health inequalities   • Social inequality leads to a life-time accumulation of  disadvantages that contribute to poor health  outcomes. On this, the Department of Health  relevantly concluded that it is likely that cumulative  differential exposure to health damaging or health  promoting physical and social environments is the  main explanation for the observed variations in health  and life expectancy.    Like social class, gender influences long-term health.  This is not simply due to the different biological aspects  of the two sexes, rather it is due to the combined effects  of biological, social and cultural influences.   It has often been said that 'women get sick and men die'.  In general, this is true; however, it belies a rather more  complex picture of the gender biases in mortality and  morbidity (Fig. 9.8). Mortality is the easier of the two  to measure - death being a far more objective measure.  Men die younger and in greater numbers in all age groups:   In childhood, the mortality in males is raised due to  accidental deaths - especially due to poisoning and  injury caused by drowning, road-traffic accidents and  fire (Fig. 9.9). The difference between male and female  deaths rises to a maximum in the 20-24-year-old group,  where male mortality is 2.8 times that of female. The  major causes of this disparity are road-traffic accidents,  other accidents and suicide (Fig. 9.10). Figure 9.11 out-  lines the different causes of death in men and women.   In general, the gender differences are greatest in areas  of relative deprivation, and least in affluent areas.  Remarkably, affluent men still have a greater risk of  mortality than deprived women.   Morbidity highlights an apparent paradox: males have  higher mortality rates, but females have higher rates  of morbidity. However, the broad assumption that  females experience more ill-health than males conceals  specific gender differences in both directions.   • Boys are more likely to report long-standing illness  (18% M:15% F).    Fig. 9.8 Standardized mortality rates,  by gender, all ages, England and  Wales, 1971-1996. (From Acheson  1998, with permission.)    Fig. 9.9 Age-specific mortality rates,  children, England and Wales,  1991-1995. (From Acheson 1998,  with permission.)   • Boys are 30-40% more likely than girls to have con-  sulted at a general practice for serious conditions,  but about 10% less likely to have done so for minor  conditions.   • While boys have higher rates of chronic physical  illness in childhood, this pattern is reversed in early  to mid-adolescence, when there are higher rates  for girls.   • It is thought that there was a substantial male advan-  tage in longevity in the sixteenth and seventeenth  centuries.   • In the first half of the nineteenth century, male and  female life expectancies were more or less equal.   • By the 1960s, women were living about 6 years lon-  ger than men.   • The major change in female mortality is due to  changing patterns of child-bearing and the reduction  in maternal mortality.    • The levels of female mortality in the developing  world resemble nineteenth-century mortality rates  in the UK.   • For psychological disorders, mostly neurotic, an  excess in boys is replaced by an excess in girls by  mid-adolescence.   • Women have more morbidity than men from poor  mental health, particularly from anxiety and depres-  sive disorders.   • Men have higher rates of schizophrenia and alcohol  and drug dependence.   • Women are more likely to consult their GP than men  (ratio of 6:4 consultations per year).   • GPs see women more frequently for consultations  regarding cancer, obesity, anaemia, migraine, osteo-  arthritis and back pain.   • GPs see men more frequently for consultations  regarding diabetes, heart attacks and angina.   • Women are placed at greater iatrogenic risk, e.g. by  taking the oral contraceptive pill and undergoing    Fig. 9.10 Major causes of mortality  under 65 years, by gender, England  1996. (From Acheson 1998, with  permission.) *Deaths occurring under  28 days of age are included, but not  allocated to a specific cause, included  in 'Other'. The major categories here  are those identified as priority areas for  ‘Our Healthier Nation'. All remaining  causes assigned to 'Other' category.   hysterectomies, they may be at greater risk of condi-  tions such as deep venous thrombosis.   • Osteoporosis is more common in women. The life-  time risk, from the age of 50 years, of fracture of the  hip, spine or distal forearm - for which osteoporosis  is a major determinant - is 14%, 11% and 13%,  respectively, for women compared with 3%, 2%  and 2%, respectively for men. The causes of the dif-  ferences in fracture rates between men and women  are not fully understood, but differences in bone  density, size and architecture, together with a differ-  ence in the rates of falls between the sexes, are likely  to be major contributors.   • Women have much higher rates of disability than  men, especially at older ages. For instance, 80% of    men over 85 years were able to leave the house  and walk down the road, compared with just over  50% of women.   • Of women over the age of 65 years, 14% suffer from  functional impairments that require help on a daily  basis to remain living in the community, compared  with only 7% of men.   • By the age of 85 years and over, these figures have  risen to nearly 40% for women and 21% for men.   • Some 64% of women over 65 years of age live in  communal homes, compared with 3% of men.   There are three different explanatory models for under-  standing the health differences between men and women:   The artefact explanation suggests that the differences  were created by the method used to collect the data.  The implication is that women may self-report more ill-  ness because they have a greater awareness of their  symptoms and/or less cultural stigma in 'admitting'  disease:   • It has, however, been found by clinical observation, that  men are more likely to overrate their symptoms (of a  cold) in comparison to women - this suggests that  women in fact underestimate their symptoms.   Some of the differences have been put down to solely  biological factors, e.g. women have greater resistance  to heart disease because of endogenous female sex hor-  mones. Male babies are more likely to die than female  babies because their lungs tend to be less developed  than those of girls of a similar gestation. Furthermore,  conditions such as menstruation, pre-menstrual syn-  drome, morbidity due to pregnancy and childbirth, dis-  eases of the female reproductive organs and the  menopause are specific to women. However, genetic    and biological differences cannot explain the full range  of differences in morbidity and mortality between men  and women.   Social causes reveal that men and women lead very dif-  ferent lives, and social expectations and stereotypes are  well established. A few explanations for the observed  health differences based on such expectations and ste-  reotypes include:   1 . Men lead lives that make them more vulnerable to  death from accidents and violence, e.g. men tend  to drive faster than women.   2. Women may suffer more illness because they under-  take more social roles. Even in couples where both  are in full-time employment, women still undertake  the majority of domestic work. Women are also  more likely to undertake a 'caring' role with regard  to their children and spouses.   3 . Women are more likely to suffer poverty than men -  women tend to be employed in part-time work that  pays less and has fewer benefits.   4. Health-related behaviour also differs between the  sexes. Historically, men drank and smoked more  than women. This has resulted in their higher rates  of liver cirrhosis and lung cancer. It is expected that  the rates of lung cancer will equalize between the  sexes now that levels of smoking have equalized.    Remember: Like social class, gender influences long-term  health. This is not simply due to the different biological  aspects of the two sexes, rather it is due to the combined  effects of biological, social and cultural influences.    The Patient's Charter codifies the expectation that those  receiving treatment from the NIIS can expect their  privacy, dignity, religious and cultural beliefs to be  respected. The GMC issues guidelines that 'personal  beliefs' should not prejudice patient care and that doctors  'must never discriminate unfairly' against patients or col-  leagues. However, there are noticeable differences in the  health status of different ethnic groups. Sociological and  epidemiological studies have tried to find out whether  these differences arise from biological differences, or  whether they are the result of social discrimination.   The idea of 'race' first appeared in the English language  in the early seventeenth century. However, the idea of  race being used as an 'explanation' for differences in  observed behaviour only became popular later on. By  the mid-nineteenth century, the idea that there were  'distinct' races, each with a 'biologically determined  capacity for cultural development' was etched into the  collective consciousness.   Eighteenth-century estimates put the African popula-  tion in England at 0.2% (mostly former slaves),  although by the early nineteenth century, this began  to decline due to the abolition of slavery. Immigration  in England began to increase as a result of the following:   • The earliest large-scale migration was probably the  post-famine Irish in the 19th Century   • Caribbean immigrants began arriving after the Sec-  ond World War in response to labour shortages,  and often ended up working for the transport indus-  try or in other low-paid jobs   • The health service actively recruited from India and  Pakistan shortly after its foundation   • Thousands of doctors who had trained overseas  immigrated in the 1950s, 60s and 70s   • The 1962 Immigration Act placed restrictions on  entry into this country   • East-African Asians expelled from Kenya and  Uganda in the 1970s travelled to the UK - many  were professional or business families    • Modern-day immigration by refugee populations has  occurred from Iraq, the Balkans and Afghanistan.   • Ethnic minorities make up approximately 8% of the  UK population - the majority of this number are  British-born ethnic minorities   • Ethnic minorities tend to be based in urban environ-  ments - often within minority communities. Over  half the ethnic population lives in south-east  England - forming 20% of Greater London   • The age and gender distribution of minority ethnic  groups is different from the majority population:   • Some minority ethnic groups have more men  than women, and all are relatively young   • Afro-Caribbean and South Asian communities  have a higher proportion of households with  children than the white population   • Pakistani and Bangladeshi households are also  larger because they are more likely to have three  or more adults, while Afro-Caribbean households  are more likely to be headed by a lone parent.   Generally, the research on ethnic minorities has  focussed on ethnicity. Key features about the health of  immigrant populations include:   1. A higher rate of mortality than people bom in the  UK   2 . A lower rate of mortality than those from their home  country. (Although the Irish are an exception here.)   The reason for this has been described as the 'healthy  migrant' factor - which claims that immigrants tend  to be healthier than average for their home population  but not as healthy as the population they move into. It  has been suggested that the mortality rates are higher  than for those born in the UK because they bring with  them the risks of mortality of their earlier life, and then  adopt the risks associated with British society.   • Ethnicity - refers to social groups who often share a  cultural heritage with a common language, values,  religion, customs and attitudes. The members are  aware of sharing a common past, possibly a  homeland, and experience a sense of difference.   • Culture - reflects ethnicity, and refers to habits of  thought and beliefs, diet, dress, music, art.    Race - is a construct based on phenotypical biological  differences (usually skin colour); social assumptions  (often negative) are attributed to biological  differences.   • Ischaemic heart disease accounts for the largest pro-  portion of deaths among men regardless of country  of birth.   • Men born in East Africa, the Indian subcontinent  and Scotland show higher mortality, and those from  the Caribbean lower mortality, compared with the  UK average.   • Cerebrovascular disease was the next major cause of  death for men from the Caribbean, West/South  Africa and the Indian subcontinent.   • Lung cancer is the next main cause of death for Scot-  tish and Irish men, among whom mortality was 46%  and 57% higher than the average, respectively.   • Irish and Scottish men showed higher mortality  from accidents, injuries and suicides. For both of  these causes, mortality of Scottish and Irish men in  class IV/V was more than twice the national rate.   A nationwide survey, 'The Health Survey for England -  The Health of Minority Ethnic Groups 1999' (Erens  et al., 2001), looked in depth at the health of minority  ethnic groups, including minority individuals born both  outside and in England. The survey findings included:   • Chinese men and women were less likely to report  long-standing and limiting long-standing illness  than both the general population and all other  groups.   • The prevalence of limiting long-standing illness was  higher for Pakistani, Bangladeshi and Irish men  (35-65% above the general population) and for  Afro-Caribbean and South Asian women (20% and  44%, respectively above the general population).   • Chinese men and women were much less likely to  report acute sickness than those in the general pop-  ulation and all other minority ethnic groups.   • For all the above-mentioned conditions with the  exception of diabetes, Chinese men and women  had lower rates than the general population, and  for diabetes the Chinese rates were not significantly  higher than those of the general population.   • All South Asian groups showed higher rates than the  general population for most conditions, and both  Pakistanis and Bangladeshis showed higher rates  than Indians.   • Afro-Caribbean men (but not women) had signifi-  cantly lower prevalence of angina and heart attack  than the general population, and both men and  women had higher prevalence of diabetes.   • Irish people did not differ substantially from the  general population in the prevalence of CVD  conditions.   • For some of the main CVD risk factors examined, the  differences between people with and without CVD  varied within minority ethnic groups and between  these groups and the general population. Risk factors  where age-adjusted risk ratios were higher in those  with CVD than in those without, included having  a raised waist-hip ratio (except Bangladeshi men);  being overweight/obese (Indian and Bangladeshi  women only); and high blood pressure, while risk  ratios for cigarette smoking were higher among  those without CVD than among those with CVD.   • When all risk factors (such as high blood pressure,  cigarette smoking and obesity) were taken into  account simultaneously in logistic regression  models, the differences in prevalence between each  minority ethnic group and the general population  were small, and none was significant.   • Compared with men in the general population,  mean systolic blood pressures (SBP) were signifi-  cantly low for Chinese, Pakistani and, in particular,  Bangladeshi men.   • Compared with women in the general population,  mean SBP were significantly low for Bangladeshi  and Chinese women, and high for Pakistani women.   • Pakistani women (risk ratio 1.25) and Afro-  Caribbean women (1.21) were significantly more  likely to have high blood pressure than women in  the general population.   • Within minority ethnic groups, there was no clear  and consistent relationship between high blood  pressure and either social class or equivalized house-  hold income, for either men or women.   • Pakistanis and Bangladeshis of both sexes showed  rates over five times higher than the general popula-  tion and Indians almost three times higher.   • Mortality is three to four times greater in Caribbean-  born individuals, three times greater in Asians, and  double in African-born individuals.   • Even though Afro-Caribbeans have higher rates of  diabetes and hypertension, they have lower CVD.   1. Insulin resistance hypothesis: The association of insu-  lin resistance and heart disease is well recognized.  Diabetes and heart disease are both raised above  the levels of the general population for Bangladeshi,  Pakistani and Indian immigrants. Insulin resistance  is associated with patterns of fat deposition -  specifically abdominal fat. However, it is not clear  that most immigrants from South Asia who have  heart disease also have diabetes.   2. Social stress: This theory claims that the stress associ-  ated with any migration and living with ongoing  stressors (such as social deprivation and racism)  leads to an increased rate of CVD. It is claimed that  the prevalence of CVD across social classes within  South Asian immigrants is evidence for this theory.  However, the presence of CVD across social classes is  suggestive of a biological reason for increased  prevalence. Also, if the stress association with mig-  ration was responsible, then all immigrants would  be expected to show raised levels of CVD, but,  Caribbean-born men - who are perhaps subject to  even more stress (as a population in terms of social  deprivation) than South Asian immigrants - had the  lowest rates of CVD.   • Irish immigrants are the most likely to be hospital-  ized for mental illness, followed by Caribbean-born  immigrants.   • South Asian immigrants have a lower rate of hospital  admission compared to the general population.   • Women are admitted more frequently than men in  all immigrant populations except Caribbean  populations.   • Admissions due to schizophrenia and paranoia are  three times greater for men and two times greater  for women from Caribbean-born populations than  the general population. This group is also more  likely to present to mental-health professionals via  the police, or courts, and as a group are more likely to  be subjected to compulsory detention, compulsory  administration of psychotropic drugs and electro-  convulsive therapy. This group is less likely to be  given psychotherapy (or other 'talking' therapies).   • Due to ‘real' differences - some people have argued  that the stress caused by migration and by subse-  quent racism leads to increased schizophrenic epi-  sodes in Afro-Caribbean populations.   • Due to misdiagnosis and exaggeration of minor symptoms -  others have claimed that the higher levels of men-  tal illness are due to cultural misunderstanding.  Annandale (1998) notes that schizophrenia in  Afro-Caribbeans is thought of in terms of 'threats  to the white community, rather than the distress of  those who experience mental health problems',  and has linked this to a 'predisposition on the part  of white people in Britain to interpret Black people's  behaviour as signs of insanity and danger'.   • South Asian and Afro-Caribbean men were more  likely than the general population to have consulted  their GP in the past 2 weeks and to have had more  than one consultation over this period.   • Among women, contact rates were significantly  higher for South Asian and Irish women.   • Relative to the general population, consultation  ratios for psychological distress were significantly  higher for Irish men (1.5 times) and lower for Chi-  nese men and women (0.59 and 0.41 times) and for  Bangladeshi women (0.64 times).   • Relative to the general population, levels of pre-  scribed medicine use by men were low among Chi-  nese men (0.5 times) and high for South Asian men  (1.26-2.04 times). Indian and Bangladeshi men  who had been prescribed medicines were also likely  to be taking more drugs per person on medication  than the general population on medication. Chinese  women were low users of medication (0.59 times),  while Bangladeshi (1.37 times) and Pakistani  women (1.42 times) were relatively high users.   • Afro-Caribbean and South Asian men were two to  three times more likely to be on drugs prescribed  for endocrine disorders. For example, about one-  third of drugs dispensed in this group relate to dia-  betes control.   As mentioned above, the inequalities seen in any pop-  ulation, when compared with the general population,    The inequalities of the ethnic population are probably  due to a combination of all of these influences. Artefacts  may arise due to the use of census data, which tends to  underestimate the size of ethnic populations. Material  inequality is common among immigrants; however, with  some diseases, such as CVD, there is not as steep a gradi-  ent across social classes of South Asian immigrants as  there is for the ethnic majority population, which may  indicate a biological difference (e.g. increased central  obesity and insulin resistance). Finally, cultural differ-  ences, such as the 'somatization' of psychological distress  in South Asian women, may account for increased GP  consultations and reduced diagnosis of mental illness.    Mortality is related to age. This fact seems self-evident:  the older you are, the less life you have to live. However,  the relationship between mortality and age is not alto-  gether linear, rather it is a lopsided U-shape - a high rate  in the first year (i.e. infant mortality) - a rapid decline  and a flat area before rising gradually in middle age and  then steeply in older people. Diseases that are predom-  inant in the West are also predominantly associated  with ageing such as coronary artery disease and cancer.   1 . Environmental influences - such as diet, degree of  physical activity and smoking, contribute to the dis-  eases of old age.   2. Societal treatment of older people may lead to their  'disengagement' from social roles. This withdrawal  may be associated with psychological distress such  as anxiety and depression, which in turn may lead  to physical sequelae.   During the 20th century, life expectancy rose, and the  birth rate fell. These changes have led to an increase  in both the absolute number of older people and the  proportion of older people within the general popula-  tion. Within 20 years, nearly a quarter of the UK popu-  lation will be aged 65 or over. People are now spending  an average of 7 years longer in retirement than in the  1970s, and it is unclear what proportion of these extra  years will be healthy (Banner 2011).   Followingthe implementation of the Equality Act 2010,  the Default Retirement Age (DRA) is being phased out.    From 6 April 2011 it was no longer legal to issue  notifications of retirement using the DRA procedures,  unless the employer can provide objective justifications  for compulsory age-based retirement. These measures  are intended to prevent age discrimination in the  workplace, and to allow capable older workers the right  to continue if they so choose. The Pensions Bill 2011  sets out a timetable for increasing the state pension age  (SPA). It proposes that women's SPA will be equalized  with men's, reaching 65 by November 2018. SPA for  both men and women will then increase to 66 between  2018 and 2020.    Older people (i.e. those over 65 years) have been  classed as the largest 'dependent' group in society, and  they outnumber children. The word 'dependent' is used  because the conventional view is that older people do  not work and are, therefore, 'dependent' on the propor-  tion of society that does. This classification reveals a  generalized view that considers ageing and older people  to be a 'problem'. This view has been challenged - a  Royal Commission on the long-term care of the elderly  in 1999 (Sutherland 1999) stated:   There is now a clear opportunity to see old age for  what it is, a stage of life where we have the gift of time  to be able to acquire knowledge and experiences for  which there may not have been time during working   in older people, and the value to society in using its  ingenuity to help older people to continue to realise  their potential more effectively.   There are good reasons to challenge the idea that old age  and older people are problems or threats:   • Many people expect to live 20 or 30 years beyond  retirement.   • Only 5% of older people either live in a care home or  receive care at home from a local authority.   • While acute health problems (e.g. colds and acci-  dents) do increase with age, they still only affect  20% of males and 25% of females in the very oldest  age groups.   • Almost 50% of those over 75 years do not have any  illnesses or disabilities that impair their activity level.   However, there are some 'medical' problems of old age.  These include:   • A progressive inability to undertake 'activities of  daily living'. These activities include washing one-  self, dressing oneself, feeding oneself, climbing stairs  and going to the toilet    • Multiple pathology - elderly people are more likely  to have more than one concurrent medical problem  than younger people   • Polypharmacy - the oldest 16% of the population  receives 40% of the drugs. Many elderly patients take  more than one type of medication - this can lead to  poor compliance (especially if the patient is con-  fused) and a greater number of drug interactions   • Dementia - only affects 2% of the 65-75 year group,  but affects 10-20% of 80+ year olds   • Use of health services - rates of hospital admissions  are greater for older people than for other groups  and this is also true for most hospital specialties.  Older people are also more likely to consult their  GP. It has been estimated that the cost of long-term  care for older people will rise from £11.1 billion  (1995) to £45.3 billion (2051).   • Older people are more likely to be living in pov-  erty compared with the general population. This  is especially true of elderly women.   • State pensions in the UK are not generous in  comparison with the rest of the European Union.   • Older people from social classes IV and V experi-  ence more respiratory problems and hyperten-  sion compared with older people from social  classes I and II.   • On average, a 6 5 -year-old man from social classes  I and II can expect to live 2.6 years longer than a  65-year-old man from social classes IV and V.   • Poor older people may be less likely to receive  some healthcare services, or may have poorer  health outcomes after receiving these services  than wealthier elderly individuals. For instance,  severe visual problems are more likely to remain  unrecognized and untreated in older people from  low socioeconomic groups.   • Older people tend to live in older housing - this  is associated with problems such as increased  heating costs and damp. This means that many  elderly individuals end up with the dilemma of  choosing whether to have adequate heating or  adequate food. Hypothermia or malnutrition  may result.   • Degenerative disease, such as osteoarthritis, can  lead to restriction of access to:    • Goods - an inability to drive may mean that  older people are reliant on small local shops.  Prices may be higher, and the availability of  fresh fruit and vegetables may be reduced.   • Services - such as those provided by their GP,  may be difficult to attend. Elderly women as a  group commonly require home visits by the GP.   • Social contacts - immobility can hinder the  participation of an individual with wider soci-  ety - this may lead to isolation.   • Older people may fear crime more than younger  people. This fear may cause older people to  restrict their activities, which can result in further  social isolation.   The ageing population has created a need for specific  health policies on how best to provide for older people.  One problem that has hindered policy creation is a lack  of certainty as to what demands will be made on the  state by the ageing population. Moody (1995) has  argued that there are four possible scenarios:   1. Prolongation of morbidity - the increase in life years is  not accompanied by an increase in quality of life -  although absolute lifespan has increased, healthy  lifespan has not   2. Compression of morbidity - good health is experienced  almost up to the end of peoples' lives, when a 'termi-  nal drop' of health rapidly leads to death   3. Lifespan extension - the healthy lifespan is extended  due to advances in medical science and preventative  medicine   4. Voluntary acceptance of limits - this scenario aims for  the development of a shared 'meaning of old age',  which informs views on which health interventions  are appropriate (in the sense of being beneficial)  and which are futile or merely life-extending.   Higgs (2003) outlines three theories that have been  used to account for the position of older people within  society:   1. Disengagement theory: This American theory claims  that old people gradually disengage from a range  of social activities until they become unable to fulfil  the roles they had previously held and ultimately  become dependent. Dependence may be:   b. domestic - needing help to wash, dress, cook or  shop    d. social - older parents become less central to the  lives of their children as the children themselves  become parents.   As people disengage from social roles - especially  upon retirement - they may experience initial relax-  ation followed by a period of turmoil, depression  and anxiety. This reaction to the loss of status may  be similar to the grief of bereavement and has been  called desolation.   However, questions have arisen as to whether  elderly people choose to disengage or are forced  to do so by society. Theories that suggest that older  people are forced by society to disengage include:   2. Structured dependency theory: This theory stresses the  importance of social structures in creating the cir-  cumstances elderly people find themselves in:   a. Financial - retirement marks the formal with-  drawal from the labour force. In addition, the  poverty of older people is a result of poor state  pensions.   b . Labelling and ageism - if older people are seen as  'disengaging' from society and are expected to do  so by society, then this becomes a self-fulfilling  prophecy. The placement of older people in  'old people's homes' compounds this problem  by removing older people from communities.  In effect, such elderly people become 'out of  sight and out of mind'.   c. Cultural emphasis on 'youth' almost by defini-  tion excludes older people. For example the  'Cool Britannia' movement pioneered by the  New Labour Government in the 1990s and early  2000s tailored its approach to 'young, modern  Britain', which may be inappropriate in light of  population demographics.   3. Third ageism: This theory is at odds with the previous  two, and holds that in fact older people are able to  enjoy relatively good health and affluence. 'Third  ageism' observes that retirement is forming an  increasingly large part of people's lives. There is a  blurring between middle age and old age, and older  people are increasingly undertaking activities, such  as travelling and learning a new skill, that were once  seen as the younger preoccupations.   Once again it is useful to consider inequalities through  the lenses of artefact, biological and social causation.  Clearly, biology has a considerable role to play, with  increasing age associated with increasing disease. How-  ever, this is not the sole cause of health inequalities  between young and older people. The elderly are,  through a number of mechanisms, deprived of social    benefits that help to prevent worsening of health. Rele-  vant deprivations include a lack of material benefits  such as wealth, housing and access to services. Addition-  ally, there may be cultural constraints, which lead to  older people being less likely to demand the health care  or support services available to them. This might  include a dislike of strangers in the house; concerns  about modesty; or not wanting to complain, leading  (respectively) to refusing home help for housework;  refusing assistance with activities of daily living such  as washing and dressing; or generally not seeking help  when problems arise.   • What areas for redress of health inequalities did the  Acheson Inquiry highlight?   • What are the aims of the government document  ‘Saving Lives: Our Healthier Nation’?   • What are the categories of the Registrar General's  classification of social classes?   • What explanations for health inequalities between  social classes did the Black Report consider?   • What explanations for health inequalities between  social classes did the Acheson Inquiry consider?   • In what ways could health inequalities between social  classes be reduced?   • What types of explanation exist for gender  inequalities in health?   • Why do immigrants in general have a higher mortality  than people of similar ethnicity who are born in the UK?   • What general explanations can be given for variations  in mortality and morbidity in ethnic minorities?   Acheson, D. (Chairman), 1998. An Independent Inquiry into  Inequalities in Health Report. TSO, London.   Annandale, E„ 1998. The Sociology of Health and Medicine: A  Critical Introduction. Polity Press, Cambridge.   Armstrong, D., 1989. An Outline of Sociology as Applied to  Medicine, third ed. Wright, London.   Banner, N., 2011. An Ageing Workforce. The Parliamentary  Office of Science and Technology, London, postnote 391,  October 2011. Online. Available at: http://www.parliament.  uk/business/publications/research/briefmg-papers/POST-  PN-391 (accessed 29.04.12.).   Bartley, M., Blane, D., 2008. Inequality and social class. In:  Scambler, G. (Ed.), Sociology as Applied to Medicine, sixth  ed. Saunders Elsevier, Edinburgh, pp. 116-132.   Inequalities in Health: Report of a Research Working Group.  Department of Health and Social Security, London.   Department of Health, 1999. Saving Lives: Our Healthier  Nation. HMSO, London, Cm 4386. Online. Available at:  http://www.archive.official-documents.co.uk/document/  cm43/4386/4386-uk/document/cm43/4386/4304.htm.   Erens, B., Primatesta, P„ Prior, G. (Eds.), 2001. The Health  Survey for England - The Health of Minority Ethnic Groups  1999. The Stationery Office, London. Online. Available at:  http://www.archive.official-documents.co.uk/document/  doh/ survey99 /hse99 .htm.   Higgs, P„ 2003. Older people, health care and society. In:  Scambler, G. (Ed.), Sociology as Applied to Medicine, fifth  ed. Saunders, Edinburgh, p. 167.   Hillier, S., 2003. The health and health care of ethnic minority  groups. In: Scambler, G. (Ed.), Sociology as Applied to  Medicine, fifth ed. Saunders, Edinburgh, p. 146.   Marmot, M., 2003. Understanding social inequalities in health.  Perspect. Biol. Med. 46 (3), S9-S23.   Marmot, M., 2010. Fair Society, Healthy Lives: Strategic review  of health inequalities in England post-2010. The Marmot  Review, London.   Moody, H., 1995. Ageing, meaning and the allocation of  resources. In: Scambler, G. (Ed.), 2003 Sociology as   Office for National Statistics (ONS), 1997. Health Inequalities.  Office for National Statistics, London, Decennial  Supplement. Online. Available at: http://www.statistics.gov.  uk/StatBase/Product.asp?vlnk=1382&More=Y.   Office for National Statistics (ONS), 2010. The National  Statistics Socio-economic Classification. ONS, London  (NS-SEC rebased on the SOC2010).   Scambler, G., Blane, D., 2003. Inequality and social class. In:  Scambler, G. (Ed.), Sociology as Applied to Medicine, fifth  ed. Saunders, Edinburgh, pp. 107-123.   Sutherland, S. (Chairman), 1999. With Respect to Old Age: Long  Term Care - Rights and Responsibilities. A Report by The  Royal Commission on Long Term Care. Online. Available at:  http: / / www. archive, official-documents, co .uk/ document/  cm4 1/4 192/4 192. htm.   Tudor Hart, 1971. The inverse care law. Lancet i, 405-412  (as described by Armstrong D 1989 An Outline of Sociology  as Applied to Medicine, 3rd edn. London: Wright,  pp. 112-114).   Scambler, G. (Ed.), 2003. Sociology as Applied to Medicine,  fifth ed. Saunders, Edinburgh.    Epidemiology is the study of the distribution and the  determinants of health or ill-health in populations, and  its application to modify this distribution. In other words,  epidemiologists are concerned with the health of the pop-  ulation as opposed to the health of the individual patient.   Public health is the systematic application of epide-  miology, i.e. the promotion of health and disease  prevention, thus prolonging life and improving the  quality of life through the concerted efforts of society.   Since the 1960s, epidemiology has become impor-  tant in assessing risk factors for, and reducing the inci-  dence of, multifactorial diseases such as heart disease.  The epidemiological approach studies:   • How disease spreads/occurs - the risk factors in indi-  viduals both within the population and in the  environment   • Assessing the effectiveness of preventive and thera-  peutic interventions (this is sometimes known as  clinical epidemiology)   Prior to 1968, smallpox disease killed approximately 10  million people worldwide per year. The eradication of  this disease in 1979 was heralded as the single greatest  achievement of the public health initiatives (Fig. 10.1).    Epidemiological studies, regardless of type, seek to  understand the frequency, pattern and causes of disease  in populations. They all permit comparing the experi-  ence of disease in terms of time, person or place.    The main types of study-design that one will be con-  fronted with as a clinician are:   Another useful way of classifying the various types of  studies is shown in Figure 10.2.   Ecological studies use groups or populations rather than  individuals as units of observation. They include studies  of geographical differences and time trends in disease  incidence and prevalence. While ecological studies pro-  vide useful information on exposure, disease and mod-  ifying factors, they are in most cases inadequate to  establish causal relationships. An example of such a  study would be one that compares the incidence of skin  cancer for people living at different latitudes.   • Useful for healthcare providers to allocate resources  efficiently and plan effective prevention   • Providing clues leading to hypotheses that can be  tested in analytical studies   • Status of individuals with respect to absence or pres-  ence of both exposure and disease assessed at the  same point in time.   • Confounding is high and hence it is difficult to prove  causality   Overcrowding, excessive mobility of  population due to political instability and  extreme poverty leading to poor hygiene  and poor nutrition   Risk factors could not be altered  adequately, so decided to eliminate virus   Administer smallpox vaccine en masse  Also continuous surveillance and  containment of infected patients    An example of a cross-sectional study would be studying  the different reasons for people consulting their GPs in  three different cities by using a cross-section of the indi-  vidual populations in the three cities.   A case group with disease is compared with a control  group without disease and the proportion of exposure  in each group is compared.   • Can examine multiple aetiological factors for a sin-  gle disease.   • Measurement consistency as exposure and disease  collected at the same time.   • The temporal relationship between exposure and  disease may be difficult to establish   An example of a case-control study would be the occur-  rence of eosinophilia-myalgia syndrome (EMS), and the  previous use of a specific brand of L-tryptophan.   Subjects are classified according to presence or absence  of exposure to one or more factors and followed for a  specific time period to determine the development of    disease. There is a follow-up period of several years to  allow an adequate number to develop the outcome.  Advantages include:   The choice of study type (prospective or retrospective)  depends upon whether the outcome of interest has  occurred at the time the investigator initiates the study:   • Prospective cohort study: exposure may or may not  have occurred but disease has not occurred yet   • Retrospective cohort study: investigation initiated  after both exposure and disease have occurred:   • A cohort study can start retrospectively by defin-  ing cohort and exposures and then follow-up  cohort (e.g. congenital malformations and later  cancer).   • Retrospective cohort studies are cheaper and thus  better for diseases with a long latency.   • Retrospective studies require information from  pre-existing records (confounder information  may be missing).   An example of a cohort study would be dividing 100 000  doctors into four cohorts: non-smoker, light, moderate  and heavy smoker, and following them for 10 years to  assess their causes of death. The idea is to show that  the more you smoke, the greater your chances of acquir-  ing lung cancer.   Evidence-based medicine (EBM) has been very success-  ful at identifying and promoting effective treatments  (EBM is considered in Chapter 11). The gold standard  of evidence-based medicine has historically been the  randomized controlled trial (RCT). Two important tech-  niques used to collate the information from trials are  meta-analyses and systematic reviews. Meta-analysis  combines the results of many (possibly inconclusive)  trials to generate a more precise understanding of the  effectiveness of an intervention. Systematic reviews  use rigorous selection and analysis of papers to draw    the most valid conclusion about whether or not an  intervention works.    Doctors and patients, Armstrong (2003) argues, do not  necessarily have the same view of health. This can be a  problem when trying to measure health status for the  purposes of: research (e.g. is a new drug better than  the existing standard?); evaluation (e.g. does this service  improve patient health?); or resource allocation (e.g.  which group of patients is in most need of care?). In  practice, there is a variety of different measures, each  with advantages and disadvantages.   The simplest form of mortality measure is the crude  mortality rate (CMR):    The main advantage of using the CMR is that mortality  can be expressed as a single figure. This is useful when  comparing mortality within an area over a period of time.  However, the main disadvantage is that it does not take  into account that the chance of dying varies according to  age and sex. In fact, standardization is usually aimed  at age and sex alone because the effects of these are nor-  mally taken as given, whereas possible differences in rela-  tion to race and social class are issues for research.   Specific mortality rates refer to the number of deaths  occurring in a sub-group of the population. To aid this,  there are age-specific and gender-specific mortality  rates. These help to detect which parts of the community  are most affected by mortality:    No. of deaths in each age/  sex group in a period  Average no. of people in age/  sex population in a period    Standardized rates take into account the different age/sex  structure of two populations so that their mortality  experience can be compared directly. Hence, we elimi-  nate the confounding factors of age and sex.   The most common means of comparison is the stan-  dardized mortality ratio (SMR) , which is the ratio of observed  deaths to expected deaths expressed as a percentage:   An SMR of 100 indicates that observed deaths equals  the expected number of deaths (average mortality). An    SMR >100 indicates observed deaths exceed expected  deaths, and an SMR <100 indicates observed deaths  lower than expected deaths.   It is worth noting that the process of standardizing  mortality rates is complex. There are two methods of  standardization, indirect and direct.   • The potential years of life lost (PYLL) is an indicator  of premature mortality. It represents the total num-  ber of years NOT lived by an individual who died  before age 75 years.   • This indicator gives more importance to the causes  of death that occurred at younger ages than those  that occurred at older ages.   • The upper age limit of 75 years is used to approxi-  mate the life expectancy, as that is considered the  average life-span for someone in good health.   • Deaths occurring in individuals aged 75 years or  older are NOT included in the calculation.   • Infant deaths - deaths among infants under 1 year of  age - are not included in the calculation due to their  very small numbers. Other methods exclude these  deaths since they are often due to causes that have  different aetiology from deaths at later ages.   Quality-adjusted life years (QALYs) is a single health  state measure combining quantity and quality of life  (see also Ch. 5). It is a generic measure that sums years  spent in different health states using weights (on a scale  of 0 (dead) to 1 (perfectly healthy) for each health  state). So, 5 years of perfect health = 5 QALYs; 2 years  in a state measured as 0.5 of perfect health followed  by 3 years of perfect health = 4 QALYs.   • Used in cost utility analysis - which allows compar-  ison between interventions that nominally differ in  terms of outcomes.   • Theoretical questions: good and bad are qualitative  ideas which are assigned a quantitative value.   • 111 people are likely to put values on health that are  different from people without illness.   • Calculation is dependent on who is asked - patient,  doctor - and how they are asked.   While death is (generally) a certain and countable event,  mortality rates do not tell us much about illness or  health in a population. Morbidity, illness and health  are, however, considerably more difficult to define,  and hence to measure, than death. The following mea-  sures are commonly used.   These suffer from the problem that access to healthcare  providers affects rate of usage.   Each of these has its own limitations in terms of cover-  age. For example, sickness-absence rates do not include  people who are not working, such as pensioners or the  unemployed. Despite being more difficult to measure,  when used carefully, morbidity rates can tell us much  about ill-health in specific groups of the population.    Two basic measurements are used to assess the fre-  quency of ill-health events: incidence and prevalence  (Figs 10.3, 10.4).   Incidence quantifies the number of new cases of a dis-  ease within a specified time-interval. It measures a  change from a healthy state to a diseased state. Hence  it can only be assessed using follow-up studies, e.g.  cohort studies. There are two categories of incidence  rate: cumulative incidence and incidence density.   Cumulative incidence (Cl) is the proportion of unaffected  individuals who, on average, will contract the disease in  question over a period of time:   A (no. of new cases of disease  _ in a given period of time)   Cumulative incidence assumes that the entire popula-  tion at risk at the beginning of the study has been fol-  lowed-up for the entire specified period of time.  Often, however, some participants will enter the study  years after the start, and some will be lost to follow-  up before the study ends. This is a dynamic population.  In these circumstances, the length of follow-up will not  be uniform for all participants.   Incidence density (ID) accounts for these varying time-  periods of follow-up and the denominator can be calcu-  lated to represent the sum of the individuals' times at  risk, i.e. the sum of time that each person remained  under observation and was at risk. This is called the  person-time (PT):   PT = average size of population at risk  x average length of observation    The ID measures the rapidity with which newly diag-  nosed cases of the disease develop:   This indicates the number of existing cases of the  disease of interest in a population. As it is often mea-  sured at a particular point in time, it is called point  prevalence (P):   C (no. of cases in a defined  p_ population at one point in time)   N (no. of persons in a defined  population of the same size)   Prevalence is a proportion. It is the only measure of dis-  ease occurrence that can be obtained from cross-sectional  studies. It measures the burden of disease, i.e. the status  of a condition in the population.    Association is the statistical dependence between two  variables, i.e. the degree to which the rate of disease  in persons with a specific exposure is either higher or  lower than the rate of disease without that exposure.   Even the best-designed RCTs may contain errors.  Even if no errors can be found, it is still necessary to crit-  ically evaluate any observed association before reason-  ably concluding that it is a causal one.   Four main areas must be looked at when evaluating a  statistical association:   1. Chance - we usually draw inferences about the total  population from the sample that we have studied.  However, it is unlikely that the estimate from our  sample is equal to the estimate in the total popula-  tion and, in fact, different samples from the same  population will yield different estimates due to sam-  pling variation, i.e. just as a result of chance. To  assess the effect of chance, we perform appropriate  statistical significance tests and calculate confidence  intervals.   2. Bias - leads to an incorrect estimate of the effect of  an exposure on the development of a disease or out-  come of interest. There are different types of bias:  a. Selection bias - occurs when there is a systematic   difference between the characteristics of the peo-  ple selected for a study and the characteristics of  those who were not, e.g. all patients who enrol  for an exercise ECG experiment will probably  be health conscious.   Results must be consistent with other knowledge, e.g. animal experiments, biological  mechanisms, etc.   There should be other studies that replicate the results of the study in question   Measured by the magnitude of the relative risk. Stronger associations are more likely to be  causal   If increasing levels of exposure lead to increasing risks of disease, the higher the chance of  causality   If a particular exposure increases the risk of a certain disease but not the risk of other  diseases, then this is strong evidence in favour of a cause-effect relationship   When the removal of a possible cause results in a reduced disease risk, the likelihood of the  association being causal is strengthened    b. Measurement or information bias - occurs when  measurements or classifications of disease or  exposure are inaccurate and do not measure cor-  rectly what they are supposed to measure. Errors  in measurement may be introduced by the  observer (observer bias), by the study individual  (responder bias) or by the instruments (e.g. ques-  tionnaire or sphygmomanometer) used to make  the measurements. Observer bias can also occur  if a doctor tends to favour a particular treatment.  For example, a doctor may judge the outcome  for the patients undergoing a new treatment in  a more favourable way than for those in a pla-  cebo group. Recall bias occurs when patients'  recall of their past exposure to risk factors differs  from the recall of the controls. If patients with  breast cancer are more likely to remember hav-  ing ever used oral contraceptives than healthy  controls, a spurious association between oral  contraceptives and breast cancer will result.   3. Confounding - occurs when an estimate of the asso-  ciation between an exposure and the disease is  mixed up with the real effect of another exposure  on the same disease - the two exposures being cor-  related. For example, a report was published that  made the claim that coffee consumption is associ-  ated with the risk of cancer of the pancreas. The  importance of this association was disputed because  it was pointed out that coffee consumption was cor-  related with cigarette smoking, and cigarette smok-  ing was known to be a risk factor for pancreatic  cancer. Therefore, smoking confounded the associa-  tion between coffee and cancer of the pancreas. For a  variable to be a confounder, it must be associated  with the exposure under study and it must also be  independently associated with disease risk in its  own right.    4. Cause - The Bradford-Hill Criteria, (Bradford-Hill  1965) are pivotal in identifying a causal relationship  between two variables (Fig. 10.5).   Remember : In epidemiology, it is rare that one study  alone will provide sufficient proof that a certain  exposure affects the risk of a particular disease.  However, the confidence with which you believe in the  association between the risk factor and the disease will  also depend on whether the correct type of study  design is used to demonstrate the association.    The basic aim of epidemiological research is to investi-  gate the association between exposure to a risk factor  (e.g. smoking) and the occurrence of disease. This  requires that the incidence in a group of persons  exposed to the risk factor be compared with a group  not exposed. There are two ways of doing this, relative  risk and attributable risk.   The relative risk can either be calculated using the cumu-  lative incidence, in which case it is sometimes referred to  as the risk ratio, or calculated using the incidence rate,  when it may be referred to as the rate ratio.    The relative risk is used as a measure of aetiological  strength. A value of 1.0 indicates that the incidence of  disease in the exposed and the unexposed is identical  and thus the data show no association between the  exposure and the disease. A value greater than 1.0 indi-  cates a positive association or an increased risk among  those exposed to a factor. Similarly, a relative risk less  than 1.0 means there is an inverse association or a  decreased risk among those exposed, i.e. the exposure  is protective.   It can be shown that this odds ratio of exposure is generally  a good estimate of the relative risk if the disease is rare.   Information on the relative risk alone does not provide  the full picture of the association between exposure and  disease.   The attributable risk is a measure of exposure effect  that indicates on an absolute scale how much greater  the frequency of disease in the exposed group is com-  pared with the frequency in the unexposed group,  assuming that the relationship between exposure and  disease is causal. It is the difference between incidence  in the two groups.   It can either be calculated using the cumulative inci-  dence, in which case it is sometimes referred to as the risk  difference, or calculated using the incidence rate, when it  may be referred to as the rate, difference.   The attributable risk is especially useful in evaluating  the impact of introduction or removal of risk factors.  Its value indicates the number of cases of the disease  among the exposed group that could be prevented  if the exposure were completely eliminated. In  RCTs, attributable risk is referred to as 'absolute risk  reduction':    As populations change, the pattern of disease within it  also changes. This is evident in England from the chang-  ing pattern of disease over time, as reflected in mortality  rates and life expectancy at birth:   • In 1901 life expectancy: men - 47 years; women - 50  years   • In 200 1 life expectancy: men - 75 years; women - 80  years.   These figures show that average life expectancy has  increased by around 30 years in the past century. This  has been achieved in the main by the reduction of infant  and child mortality. The average life expectancy of a 50-  year-old individual in 1850 and a 50-year-old today has  not greatly increased.   Life expectancy helps us to assess the health status of  a population. It is defined as the average number of  years one can expect an individual of a given age to live  if current mortality trends continue.   Relative risk can be calculated from cohort studies, since  the incidence of disease in the exposed and non-  exposed is known. In case-control studies, however, the  subjects are selected on the basis of their disease status  (sample of subjects with a particular disease, i.e. cases  and sample of subjects without that disease, i.e. con-  trols), not on the basis of exposure. Therefore, it is  not possible to calculate the incidence in the exposed  and non-exposed individuals. It is, however, possible  to calculate the odds of exposure. This is the number of  people who have been exposed divided by the number  of people who have not been exposed. The odds ratio of  exposure is the odds of exposure in the cases divided by the  odds of exposure in the controls:    The mortality rates and life expectancies that the UK  experienced 150 years ago are similar to current rates  of developing world countries (e.g. Ethiopia - mortality  of 23.6 per 1000).   As different types of society have evolved, the major  causes of disease have changed.   Little is known about the health and risks to health of  pre-agricultural societies. It is assumed that the major  health risks were environmental.   Agricultural societies produced the bulk of their food by  growing crops and through the domestication of ani-  mals. As the lifestyle was no longer nomadic, the popu-  lations were of a greater density and sanitation was  poor. As a result, air-borne (TB), water-borne (cholera),  food-borne (dysentery) and vector-borne (malaria)  infectious diseases become the major health risk.   Infectious disease has become gradually less important  in modern societies. This is probably due to:   • decreased exposure to pathogens, due to changes in  domestic housing and reduction in contamination  of food and water supplies   • increased acquired resistance to infection and the  ability to recover from infection - due to improved  nutrition   However, some populations are still vulnerable to cer-  tain infections, e.g. the elderly tend to get pneumonia  and certain immigrant populations are at a higher risk  of TB. In addition to this, certain infections are now  becoming an increasing problem due to antibiotic  resistance.   The global pattern of disease varies greatly between  'developed' and 'developing' countries. The developed  world has a greater burden of non-communicable  degenerative disease, e.g. cardiovascular disease, stroke,  respiratory disease, cancers and mental illness. In the  developing world, the main causes of death are also car-  diovascular, stroke and respiratory disease. In addition  however, communicable or infectious diseases, e.g.  malaria, TB and HIV/AIDS, are major killers and causes  of ill-health in the population. The younger population  tends to suffer more. About 70% of young children  who die from diarrhoeal diseases could be saved if wide-  spread low-cost oral rehydration therapy was available.  The problem is compounded by the lack of adequate  sanitation, clean water and nutrition; these are com-  monly exacerbated in conflict zones. Malaria can be  prevented by prophylactic measures, e.g. sleeping under  mosquito nets, but the cost of implementing these is  great. There is also an emerging resistance to the drugs  normally used to treat malaria.   The solution to these problems will take roughly the  same route as that taken by developed countries. Possi-  ble areas of intervention include trying to improve  national and local wealth, living standards, clean water  supplies and sanitation, nutrition and educational  status of the people (see Fig. 10.6).    Routine data are not often collected for a specific  research purpose; however, such data may contain  information associated with health and social services.  Epidemiologists have access to a multitude of data  sources. The accuracy, validity and completeness of such  information depends on how regularly it is used and,  hence, how much attention is paid to it (Figs 10.7,  10.8). Some different sources of data are outlined  below.   Office for National Statistics (ONS) Mortality Statistics  Registrar General's Decennial Supplement on  Occupational Mortality   Lack of completeness, with potential for bias - may not answer the  question   Disease labelling may vary over time, e.g. asthma definition has  been changing   Health services' data more geared to process than health status  and outcomes   Public concerns about confidentiality, especially with respect to  identifiable data (see Ch. 2)    a questionnaire administered to a stratified random  This provides us with the denominators necessary to sample of households. Data collected relates to popu-  calculate incidence and prevalence. The best example lation, employment, housing, education, income and   is the Census that is conducted every 1 0 years and gives family structure and details on many health-related   details on family size, socioeconomic status, highest items, such as prevalence of disability, utilization of  level of education attained, and the age, sex distribu- general practitioners' services, dietary habits, alcohol  tion and geographical location of the population, and tobacco consumption.   This is based upon completion of a standard death certif-  icate, which records the date of death, cause of death, age,  sex, date of birth and place of residence. In addition,  occupation and other variables may be recorded. Certain  causes of death may be poorly recorded. In the UK, for  example, it has been shown that deaths from I IIV disease  and AIDS, which may be stigmatized, are under-recorded  in an attempt to maintain confidentiality. Other prob-  lems are that data from urban areas may be more com-  plete than data from rural areas, and people belonging  to higher social classes are likely to have a more detailed  cause of death recorded. The main cause of death in an  individual is that pathological process that directly led  to the patient's death. The patient may have other co-  morbid conditions that worsen the prognosis, but do  not directly lead to death, e.g. diabetes or hypertension.   Morbidity data are often routinely available and provide  insights into conditions that may not necessarily result in  death. Certain communicable diseases, e.g. meningitis,  malaria, need to be reported by law. This information  is sent to the Public Health Laboratory Service who sur-  veys and monitors the reported incidence of communica-  ble diseases and detects unusual patterns or epidemics.    Following the Harold Shipman murders in the 1990s,  there remains a general dissatisfaction with the way in  which deaths are certified by doctors in the UK. Studies  of the accuracy of death certification have found up to  one-third of death certificates to contain major errors.  A recent English study reported that only 55% of certif-  icates were completed to an acceptable standard. The  main explanations for these errors are:   Variations between countries in the post-mortem cri-  teria may also lead to differences in diagnostic informa-  tion and hence the cause of death.   The certificate of death registration (DC) is vital for  the funeral to proceed. A doctor may complete this form  only if he or she has been in attendance on the deceased  during the last illness and has seen the deceased within  14 days of death or after death. There are some cases that  have to be reported to the coroner:    • Deaths when a doctor has not attended in the previ-  ous 14 days   When a death is reported to the coroner, he may: certify  the death on the basis of the information he has or  acquires; certify the death after ordering an autopsy;  or certify the death after holding an inquest. The DC  must reach the coroner's office in 5 days.   There are three categories of death: those certified  by a doctor; those certified by a doctor with the  coroner's agreement; and those reported to and  investigated by the coroner.    An effective healthcare system aims to provide health  services to the sick and public health services to promote  health and prevent the spread of disease. Prevention  refers to actions aimed at eradicating, eliminating or min-  imizing the impact of disease and disability. There are  three levels of prevention:   This aims to stop a disease from manifesting itself. It  often calls for strategies that aim to remove or destroy  agents that cause disease. Other aspects include environ-  mental control and immunization.   This proposes to detect a disease at its earliest possible  stage followed by initiating measures to cure, or prevent  further progression of the condition. The most impor-  tant example in this category is screening programmes  coupled with effective interventions.   This aims to reduce the damage caused by the disease,  e.g. encouraging smokers with lung cancer to quit smok-  ing (a modifiable risk-factor that can retard progression  of the disease).    Targeting a high-risk group will benefit individuals in  this group, but will do little to decrease the overall bur-  den of the disease in the population.   A population-based approach, on the other hand, which  yields a smaller benefit in a larger number of individ-  uals, may give better results. Also, there is no need to  identify a high-risk group as the strategy targets all.    Health education is empowering individuals through  increased knowledge and understanding. Unlike health  promotion, there is no political advocacy. Health promo-  tion interventions result in only small changes in risk fac-  tors and mortality in the general population (Fig. 10.9).   Effective health promotion relies on several factors:  Public, Employers, Voluntary groups, Advertising, Media,  Primary care. Local authority, Industry, Government,  Health services - primary/secondary and Training.   In England, health promotion was linked to GP activity  by The Quality and Outcomes Framework (QOF)  (adapted from the NFIS Information centre, at: http://  www.qof.ic.nhs.uk/).   The QOF is an annual reward and incentive pro-  gramme for all GP surgeries in England. The QOF con-  tains four main components (domains): Clinical  domain, Organizational domain, Patient experience  domain and Additional services domain. Each domain  consists of a set of achievement measures, known as  indicators, against which practices score points accord-  ing to their level of achievement. The 2010/2011 QOF  measured achievement against 134 indicators; practices  scored points on the basis of achievement against each  indicator, up to a maximum of 1000 points:   • Clinical care : this domain consists of 86 indicators  across 20 clinical areas (e.g. coronary heart disease,  heart failure, hypertension) worth up to a maximum  of 697 points   • Organizational: this domain consists of 36 indicators  (worth up to 167.5 points) across five organizational  areas - records and information; information for  patients; education and training; practice manage-  ment and medicines management    • Patient experience: this domain consists of three indica-  tors (worth up to 91.5 points) that relate to length of  consultations and to patient experience of access to GPs   • Additional services: this domain consists of nine indi-  cators across four service areas - cervical screening,  child health surveillance, maternity service and con-  traceptive services.   The QOF gives an indication of the overall achievement of  a surgery through a points system. Practices aim to deliver  high-quality care across a range of areas for which they  score points. Put simply, the higher the score, the higher  the financial reward for the practice. The final payment is  adjusted to take account of surgery workload and the prev-  alence of chronic conditions in the practice's local area.    The Health of the Nation was the first national strategy in  the UK for health improvement. It was adopted in 1992  and set out long-term objectives and measurable targets  for the improvement of health in five important areas  (DoH 1992):   These areas were selected because they were major  causes of premature death or avoidable ill-health, and  effective interventions were possible.   Saving lives: our Healthier Nation came into being in  1999. It is a comprehensive government-wide public  health strategy for England (DoH 1999). Its goals are  to improve health and to reduce health inequalities.  The target was to reduce the following unnecessary  deaths by the year 2010 in the following areas:   • Cancer: to reduce the death rate in people under 75  years by at least one-fifth   • Coronary heart disease and stroke: to reduce the death  rate in people under 75 years by at least two-fifths   • Accidents: to reduce the death rate by at least one-  fifth and serious injury by at least one-tenth   • Mental illness: to reduce the death rate from suicide  and undetermined injury by at least one-fifth.   Key developments in Saving Lives, were: the emphasis on  tackling inequalities, the emphasis on communities,  cooperation between government agencies and multidis-  ciplinary work. The document acknowledged the impor-  tance of social, economic and political influences. Rayner  (2002) argues that despite being less individualistic than  The Health of the Nation, Saving Lives overemphasized the  role of the NHS and focussed on health trends and poten-  tial risks rather than local authorities, the role of industry   Aim: freedom from lung disease,  heart disease and other smoking-  related disorders   Activity: encourage people to seek  early detection and treatment of  smoking-related disorders   Activity: persuasive education to  prevent non-smokers from starting  and persuade smokers to stop   Individuals with  knowledge and  understanding enabling  well-informed decisions  to be made and acted  upon   Information  about cause and  effects of health-  demoting factors  Exploration of  values and  attitudes  Development of  skills required for  healthy living   Aim: clients will have  understanding of the effect of  smoking on health; they will make  a decision whether or not to smoke  and act on that decision   Activity: giving information to  clients about the effects of  smoking; helping them to explore  their own values and attitudes and  come to a decision; helping them  to learn how to stop smoking if  they want to   Working with  health issues,  choices and  actions which  clients identify  Empowering the  client   Client as equal  Client's right to  set agenda  Self-  empowerment  of client   Aim: anti-smoking issues are only  considered if clients identify them  as a concern   Activity: clients identify what, if  anything, they want to know  about it   Aim: make smoking socially  unacceptable, so it is easier not to  smoke than to smoke   Activity: no-smoking policy in  public places; cigarette sales less  accessible, especially to children;  promotion of non-smoking as  social norm; banning tobacco  advertising and sports sponsorship    and the press. There has been considerable progress to  meeting the targets in Saving Lives with the notable excep-  tion of accidental deaths, which have increased.    Screening is the practice of investigating apparently  healthy individuals with the object of detecting unrec-  ognized disease or its precursors in order that measures  146    can be taken to prevent or delay the development of dis-  ease or improve prognosis.    Remember: Screening tests are generally not definitive.  A screening test is usually cheap and simple, and aims to  identify people at high risk of the condition. Further  diagnostic tests are then done to confirm diagnosis.   1. Early detection of diseases where prognosis is  improved by earlier treatment (e.g. screening for  breast cancer and offering surgical and other  treatments)   2. Detection of people at increased risk of developing  disease where interventions will reduce that risk  (e.g. screening for high blood cholesterol levels  and offering dietary advice and/or drug therapy)   3. Identification of people with infectious disease,  where treatment or other control measures will  improve the outcome for the individual and prevent  ongoing transmission to others (e.g. screening food  handlers for salmonella; health workers for hepatitis  B, etc.).   Screening can either involve the whole population  (mass), or selected groups who are anticipated to have  an increased prevalence of the condition (targeted).  There may be a systematic programme where people  are called for screening (e.g. cervical cancer) or screen-  ing may be done opportunistically when a person pre-  sents to the doctor for some other reason (e.g. blood  pressure). Opportunistic screening or case-finding is  advantageous, in that over 90% of people will see their  GP over a 2-year period, so it is cost-effective, while pick-  ing up a large proportion of cases. The problem is that  there is reliance on the GP to regularly test for the con-  dition, even if the patient presents with another prob-  lem, and with current workloads, this can sometimes  be forgotten (Fig. 10.10).    There are WHO guidelines for deciding when screen-  ing is appropriate (drawn up by Wilson and Jungner  1968):   1. The condition being screened for should be an  important health problem   4. Treatment at an early stage should be of greater  benefit than at a later stage   5 . There should be a suitable, valid test for the early stage   8 . There should be adequate health service provision for  the extra clinical workload resulting from the screen   The validity of a screening test is measured by its ability  to do what it is supposed to do, that is distinguish  between subjects with the condition and those without  (Fig. 10.11).   Even after a disease is determined to be appropriate for  screening and a valid test becomes available, it does not  necessarily follow that a widespread screening pro-  gramme should be implemented. Evaluation of a poten-  tial screening programme involves consideration of  three main issues outlined below.   Feasibility will depend on how easy it is to organize the  population to attend for screening, whether the screening  test is acceptable, whether facilities and resources exist to  carry out the necessary diagnostic tests following screening.   Effectiveness is evaluated by the extent to which imple-  menting a screening programme affects the subsequent  outcomes. This is difficult to measure because of a num-  ber of biases that affect most of the study designs used.   Selection bias exists as people who participate in screen-  ing programmes often differ from those who do not.   Lead-time bias exists because screening identifies dis-  ease that would otherwise be identified at a later stage.  This may result in an apparent improvement in the  length of survival due to screening, which is really  due to the earlier date of diagnosis.   Length bias exists as some conditions may be slower  in developing to a health-threatening stage, that is, they  have a longer preclinical stage. This means they are  more likely to be detected at that stage, but they may  also have a more favourable prognosis, leading to the  false conclusion that screening is beneficial in lengthen-  ing the lives of those found positive.   Sensitivity of screening test= proportion of true positive results detected by the screening test  = a/a+c  Specificity of screening test = proportion of true negative results detected by the screening test  = d/b + d  Positive predictive value (diagnostic value) of the test=the proportion of test positive results which are true positive  results = a/a+ b   Negative predictive value (diagnostic value) of the test = the proportion of test negative results which are true negative  results = d/c + d   The predictive value thus indicates the likelihood of a positive or negative screening test result meaning the presence or  absence of the disease, respectively   Knowledge of sensitivity and specificity of a test will influence the decision whether or not to perform it  Knowledge of the predictive value will influence the view that an individual does or does not have the disease, once the  test result is available   Predictive values are dependent on prevalence. Even a test with good sensitivity and specificity, when applied to a  population with a low prevalence will have a low positive predictive value    Screening programmes need to be tested by random-  ized controlled trials, partly to avoid the listed biases.   The cost of screening programmes is important.  Resources for health care will always be scarce relative  to competing demands. The relative cost-effectiveness  of a screening programme compared with other forms  of health care should, therefore, be considered. Costs  relate not just to the implementation of the screening  programme, but also to the further diagnostic tests  and the subsequent cost of treatment. On the other  hand, in the absence of screening, costs will be incurred  by the treatment of patients in more advanced stages of  disease (Fig. 10.12).   A screening test is a medical intervention that is done to  a person who is not ill and usually to someone who has  not initiated the request for the test:    • The screening test can cause harm as well as provid-  ing benefits:   • There may be a risk attached to the screening test  or subsequent diagnostic test   • There may be other unplanned effects of a posi-  tive test, e.g. the issue of diagnostic labelling that  leads to the adoption of the sick role   • A false negative result will give false reassurance.  Therefore, there may be a need for the patient to  undergo some form of pre-test counselling.   The objective of cervical cancer screening is to detect cer-  vical intraepithelial neoplasia. All women aged 20-64  years and whose names appear on GP lists held by  health authorities are called. Screening occurs every    3-5 years. If borderline/mild dyskaryosis is seen, then  the patient undergoes a re-smear. If there is moderate/  severe dyskaryosis, a referral for colposcopy, laser or  loop diathermy is made. Since organized screening  began, the number of invasive cervical cancer cases in  England and Wales fell by 42% in 6 years: from 15.4  cases per 100 000 women in 1990 to 8.9 per 100 000  by 1996. Problems include inadequately taken smears,  laboratory errors and patient apathy/fear towards recall  for abnormal smears.   Screening programmes aim to detect early breast cancer.  The NHS Cancer Plan, published by the Department of  Health in September 2000, set out future developments  in the NHS Breast Screening Programme. The pro-  gramme has been extended so that women from the  age of 50 years up to and including the age of 70 years  receive routine invitations for screening. A double-view  mammogram is offered at 3-year intervals. Prior to  2004, the age range was 50-64 years and a single-view  mammogram was offered. Some argue that screening  needs to be increased to include those under 50 years  of age. There also remain issues about the overall  benefits and safety of mammography and whether a  single-view or double-view mammogram is more  useful.   Other screening programmes being researched  include those for prostate, ovarian and colorectal cancer.    A communicable disease is an illness caused by the  transmission of a specific microbial agent or its toxic products  from a reservoir to a susceptible host. Some common  terms need to be understood:   • Occurrence - the frequency of a disease in a popula-  tion without distinguishing between the incidence  and prevalence   • Reservoir - the site(s) in which a disease agent nor-  mally lives and reproduces   • Causative agent - a micro-organism, e.g. viruses, bac-  teria, whose presence is necessary for the disease to  occur   • Transmission - any mechanism by which an infec-  tious agent is spread from a source or reservoir to  another person. These mechanisms include:   • Direct transmission - via direct contact, e.g. kis-  sing, touching, sexual intercourse. Examples of  pathogens are Staphylococcus and HIV   • Indirect transmission - vertical transmission from  mother to fetus (e.g. hepatitis B), air-borne/ drop-  let (e.g. influenza), ingestion of contaminated   • Incubation period - the time interval between expo-  sure to the infectious agent and the appearance of  the first sign or symptom of the disease   • Susceptibility - the tendency of an individual to con-  tract a disease. Affected by age, nutrition, gender,  immunity and genetics.   Understanding the nature of the disease helps us to  establish ways of controlling it. Generally speaking,  we can use three methods to control the spread of  disease:   1. Controlling the agent - involves removing agents  before they enter into air, water and soil. For micro-  bial agents, this may include prohibiting the  consumption of affected foods or the use of bacteri-  cides on preparation surfaces.   2. Controlling the environment - controlling the vectors,  e.g. mosquito nets to prevent the spread of malaria,  or treating polluted air, water and soil. Also restrict-  ing access to certain areas may help.   3. Controlling the host - protecting high-risk individ-  uals, e.g. young, old, sick or immunosuppressed.  This can be achieved by promoting personal  hygiene, providing immunizations (Fig. 10.13) or  fostering health education.    Fig. 10.13 Primary tuberculosis as an example of  communicable disease control.   Often asymptomatic; casual  short-term exposure is less likely  to transmit the disease   Identifying and treating those  who already have the disease, to  shorten their infection and to stop  it being passed on to other people  BCG vaccine    In developed countries, the most beneficial and cost-  effective health intervention for the primary prevention  of infectious diseases is immunization. The aim of  immunization is to provoke immunological memory  to protect individuals against particular diseases. It  can be defined as the protection of susceptible individ-  uals from communicable disease by administration of a  vaccine. Immunization can be passive (short-term, e.g.  immunoglobulins or antibodies) or active (acquired  naturally after recovery from infection with the causal  organism or induced artificially via a vaccine).   Avaccine is an immunobiological agent injected into  the body to stimulate an immune response. There are  four types:   2. Live vaccines - made from living organisms, which  are either the disease-causing organisms whose viru-  lence has been reduced by attenuation, e.g. MMR, or  less virulent organisms of a species antigenically  related to the causal agent, e.g. BCG   3. Toxoids - produced from artificially created, but  harmless bacterial toxins, e.g. tetanus   4. Component/sub-unit vaccines - contain a component  antigen(s) of the target organism required to evoke a  suitable immune response, e.g. influenza.   Live vaccines are given in a single dose and have a longer  duration of immunity. However, they may be less stable  and revert to the virulent strain and cause disease in the  immunosuppressed.   Inactivated vaccines are given in multiple doses and  need a booster (Fig. 10.14). They confer shorter immu-  nity and are stable.   Herd immunity is the immunity of a group or commu-  nity. For example, if enough children acquire immunity  to measles, owing to vaccination, the measles virus loses    the ability to circulate in the community. Effective herd  immunity can only be achieved with immunization  rates of around 90% of the population. This is impor-  tant for the protection of those who cannot be immu-  nized, and because no vaccine is 100% effective.   • health service variables - generally good in the UK,  but be aware of some limitations   • unclear responses, e.g. questioning the potential  harms of the MMR vaccine   In the UK, it is a legal requirement for health authorities  to be informed of certain 'notifiable diseases'. The Con-  sultant in Communicable Disease Control (CCDC) is  responsible for prevention, control and surveillance of  communicable diseases. The Public Health Laboratory  Service (PHLS) provides support to these doctors at a  national level (Figs 10.15, 10.16). An up to date list  of notifiable disease can be obtained from http://  www.hpa.org.uk/.   • Outbreak - an epidemic restricted to a localized  increase in the incidence of disease, e.g. in a county   Diphtheria/tetanus/pertussis/poliomyelitis/haemophilus type B (DTaP/IPV/Hib) (one injection)  and pneumococcal vaccine (one injection)   DTaP/IPV/Hib (one injection), MenC (one injection) and pneumococcal vaccine (one injection)   Measles, mumps and rubella (MMR) (one injection) and pneumococcal vaccine (one injection)   DTaP or dTaP (one injection) and MMR (one injection) (reduced dose diphtheria vaccine if aged  over 10 or completed primary immunizations in infancy)   Up-to-date information on immunization and infectious disease may be found at: www.immunisation.nhs.uk   Fig. 10.15 Flow of information about communicable diseases in England and Wales. From Donaldson and Donaldson 2000, with  permission.    • Epidemic - an increase in the incidence of a disease  above that which is ever-present in a population   • Endemic - the incidence of a disease that is continu-  ously present in a population   • Pandemic - an epidemic occurring across interna-  tional boundaries and affecting a large number of  people.   Surveillance is 'the continued watchfulness over the dis-  tribution and trends in the incidence of disease through  the systematic collection, consolidation and evaluation  of morbidity and mortality reports and other relevant  data' (Langmuir 1963).   • Special systems: clinical HIV reporting, which is vol-  untary to the Communicable Disease Surveillance  Centre (CDSC), the British Paediatrics Surveillance  Unit and the Creutzfeldt-Jakob Disease (CJD)  Surveillance Unit (important as cases rise).   • Distribution of this information to those who  require it for action. Feedback is via Communicable  Disease Report (CDR) Weekly, information services,  internet information sites, e.g. Public Health Labora-  tory Service (PLILS)   1. Preliminary assessment in outbreak investigation -  to confirm the existence of an outbreak. Consult  the CDSC. If further investigations are needed,  review the literature and survey the data. Form an  outbreak control team. Also generate the initial  hypothesis and initiate immediate control measures  as necessary, e.g. stop symptomatic food handlers  from working.   2. Case definition and identification - define 'cases' in  terms of time/place/person/symptoms/laboratory  results and define the population at risk.   3. Descriptive study - collect and analyse data. Draw  the epidemic curve and generate the hypothesis.  The aim is to link the cases to a source.   4. Analytical study - can be done using a cohort study  (population is known, e.g. guests at party) or a  case-control study for a large population. The aims  are to test the generated hypothesis and to attempt  to overcome bias.    5. Verify hypothesis - by using food and environmen-  tal samples sent to the microbiology laboratory.   7. Communicate - during the investigation give  updated information to the public and profes-  sionals. Upon conclusion, publish a report for those  involved and interested individuals.   Some of the steps above may be carried out simulta-  neously, so keep a record of the date and time.   • What is the incidence and what is prevalence of a  disease?   • Can you give an example of an important screening  test used today?   Armstrong, D., 2003. Measuring health and illness. In: Outline  of Sociology As Applied to Medicine, fifth ed. Hodder  Arnold, London, pp. 14-23.   association or causation? Proceedings of the Royal Society of  Medicine 58, 295-300.   Department of Health, 1992. The Health of the Nation - A  Strategy for Health in England. HMSO, London.   Department of Health, 1999. Saving Lives: Our Healthier  Nation. HMSO, London, Cm4386.   Donaldson, LJ., Donaldson, R.L, 2000. Essential Public  Health. Petroc Press, Berkshire.   Langmuir, A.D., 1963. The surveillance of communicable  diseases of national importance. N. Engl. J. Med. 268,  182-192.   Rayner, G., 2002. Building a UK public health movement. In:  Adams, L„ Amos, M., Munro, J. (Eds.), Promoting Health:  Politics and Practice. Sage, London, pp. 20-25.   Scriven, A., 2010. Promoting Health: a Practical Guide (Ewles &  Simnett) . Bailliere Tindall, Edinburgh.   Wilson, J.M.G., Jungner, G., 1968. Principles and Practice  of Screening for Disease. World Health Organization,  Geneva.   Farmer, R., Lawrenson, R., Miller, D., 2001. Lecture Notes on  Epidemiology and Public Health Medicine, fourth ed.  Blackwell Science, Oxford.   Saracci, R., 2010. Epidemiology: Avery short introduction.  Oxford University Press, Oxford.   Vetters, N„ Matthews, I., 1999a. Components of health care -  preventative health care, health promotion and screening.  In: Vetters, N., Matthews, I. (Eds.), Epidemiology and Public  Health Medicine. Churchill Livingstone, Edinburgh,  pp. 215-220.   Vetters, N., Matthews, I., 1999b. Environmental and  occupational health-infectious disease. In: Vetters, N„  Matthews, I. (Eds.), Epidemiology and Public Health  Medicine. Churchill Livingstone, Edinburgh, pp. 129-136.    Questions about clinical governance and audit have  been very popular in interviews for junior medical jobs.  As some interviews have been replaced by examinations  and extensive application forms, the need for an under-  standing of these concepts has not gone away - indeed  junior doctors may often be asked how they themselves  have taken part in clinical governance ! This chapter pro-  vides a general overview and examines key aspects of  clinical governance: evidence-based medicine, audit  and risk management.    Clinical governance has become an increasingly impor-  tant concept in everyday medical practice. Armstrong  (2003) describes this as the tension between institu-  tional control over clinical decisions while allowing  individual doctors some freedom to act in the interests  of their patients. He explains:   ... A hospital might appoint a clinician to lead on  clinical governance in that hospital. That person  will then discuss with colleagues the sort of  actions they should take collectively to ensure that  good-quality care is being provided. It may mean  stricter adherence to protocols, or expectations  that all clinicians will engage in auditing their  own work, or arranging for peer review of certain  services, or setting up a complaints system, or  monitoring of prescribing, etc. The result is a cul-  ture of quality control in which all clinicians are  aware that they are part of a wider attempt to  maintain medical standards through reviewing  their own as well as their colleagues' clinical per-  formance. (see Fig. 11.1)   There are major implications for all stakeholders in the  NHS, ranging from medical students and junior doctors  to consultants. Some of these are:   • development of mechanisms to ensure the 'audit  loop' is closed, i.e. to ensure that change in clinical    practice takes place in the light of audit, research, evi-  dence, risk management and complaints findings   • Development of appropriate accountability struc-  tures in both primary and secondary care   • Improvement of the clinical information infrastruc-  ture of the NHS   • Integration of continuing medical education (CME)  and continuing professional development (CPD)  into quality-improvement programmes.   Clinical governance is a system through which NHS  organizations are accountable for continuously  improving the quality of their services and safeguarding  high standards of care by creating an environment in  which excellence in clinical care will flourish (Scally &  Donaldson 1998). The concept of Clinical Governance  was widely introduced to the NHS in 1999, through  Health Services Circular 1999/065: 'Clinical  Governance in the new NHS'.   3. Risk management (the risk of injury or illness asso-  ciated with the service provided)   The 1999 Clinical Governance Framework comprises a  number of activities (the seven pillars) that were present  before 1999. What Clinical Governance brings is a coord-  ination of these activities, under the umbrella of the  'Seven Pillars of Clinical Governance':    Fig. 11.1 The 14 components of clinical governance. (Adapted from Chambers et al. 2007.)   The main pillars of relevance to medical students and  junior doctors, which we will consider further are:  clinical effectiveness, clinical audit and clinical risk  management.    Evidence-based medicine (EBM) is the conscientious,  explicit and judicious use of current best evidence in  making decisions about the care of individual patients.  It involves much more than just reading research  papers. Even the best available external evidence on  its own may be inapplicable for an individual patient,  while experience, when used in isolation, may result in  clinical practice becoming out of date and possibly  decreasing delivery of the best possible patient care.   • provides an efficient and systematic way of reviewing  vast amounts of medical literature and translating it  into good patient care   • provides a robust way of managing a disease and  enhancing the clinical outcome   • serves as a means of modifying current disease-  management practices so as to improve the process   • identifies gaps in the current state of knowledge and  highlights areas requiring more investigation   • allows one to improve the quality and efficiency of  disease-management procedures.   • A significant proportion of clinicians lack formal  training in EBM and are not able to thoroughly eval-  uate some research studies   • Clinicians may have the required expertise to analyse  the research, but lack the time to do so   • Assuming that all that is required to treat a patient is  understanding of the anatomical and pathophysio-  logical changes   • Relying on the fact that it is easier to refer to text-  books, even though they may be out of date   • Lack of EBM guidelines at the point of practice, e.g.  the wards   • Bias in terms of what clinical research is funded and  what results are published.   Traditionally, EBM has been taught in terms of a hier-  archy of evidence. In this hierarchy, systematic reviews  and meta-analyses or randomized controlled trials have  been seen as the most statistically reliable form of cli-  nical research evidence. By contrast, case reports or per-  sonal experience by clinicians has been seen as far less  reliable. Increasingly, levels of evidence are matched  to the type of research question asked (Fig. 11.2).   T raditionally, EBM has been taught in terms of a hierarchy  of evidence. The type of evidence should be matched  to the type of research question asked and a meta-analysis  of RCTs may not always be the best kind of evidence.   used in a situation that has potentially clinically impor-  tant differences than the original study situation.   2. Locate the best evidence, which could include guide-  lines, systematic reviews, primary research or even  talking to a senior colleague or doing an internet  search using a search engine like Google scholar,  PubMed or Medline.   3. Critically appraise the evidence to assess its validity  and usefulness for clinical practice.   4. Implement the results of weighing up the evidence  in daily practice.   5. Evaluate the implementation of your findings (this  is a form of audit).   • Homogeneity: a systematic review that is free of wor-  risome variations (heterogeneity) in the directions  and degrees of results between individual studies   • CDR: Clinical decision rule. (These are algorithms or  scoring systems that lead to a prognostic estimation  or a diagnostic category.)   • SpPin and SnNout: An 'Absolute SpPin' is a diagnos-  tic finding whose Specificity is so high that a Positive  result rules-in the diagnosis. An 'Absolute SnNout' is  a diagnostic finding whose Sensitivity is so high that  a Negative result rules-out the diagnosis.    All junior doctors are now expected to get involved in  clinical audit, and knowledge about audit and the audit  cycle can be tested in medical exams.   Audit is the process of reviewing the delivery of  health care to identify deficiencies, so that they  may be remedied   • The principal aim of audit is to improve the quality  of medical care.   • Audit looks at how a service ought to be delivered.   • It then compares that to the way it is currently being  delivered.    Remember : Evidence-based medicine (EBM) is the  conscientious, explicit and judicious use of current best  evidence in making decisions about the care of  individual patients.   B - consistent level 2 or 3 studies or extrapolations  from level 1 studies   C - level 4 studies or extrapolations from level 2 or 3  studies    The concept was introduced in the government's White  Paper for the NHS Working for Patients (DoH 1989), and  since the early 1990s, it became a contractual require-  ment for doctors in the hospital setting.    Audit is a hot topic at interview. Have a two-  sentence definition that you could expand on if they  push you, e.g. 'Audit is central to clinical governance  and is a mechanism for improving patient care. It is a  cycle of comparing actual practice with pre-agreed  standards or guidelines'.    Fig. 11.2 Matching study type to the question. The Oxford 2011 levels of clinical evidence. (Oxford Centre for Evidence-  Based Medicine (OCEBM) 2011; http://www.cebm. net/index. aspx?o=5653).   Systematic review  of cross-sectional  studies with  consistently applied  reference standard  and blinding   Systematic review  of randomized  trials, systematic  review of nested  case-control  studies, n-of-1 trial  with the patient you  are raising the  question about, or  observational study  with dramatic effect   Non-randomized  controlled cohort/  follow-up study  (post-marketing  surveillance)  provided there are  sufficient numbers  to rule out a  common harm. (For  long-term harms  the duration of  follow-up must be  sufficient.)**   * Level may be graded down on the basis of study quality, imprecision, indirectness (study PICO does not match questions PICO), because of  inconsistency between studies, or because the absolute effect size is very small; Level may be graded up if there is a large or very large effect size;   * *As always, a systematic review is generally better than an individual study.   A healthcare professional's aim is to do the best for an  individual patient, within the available resources, by  addressing the particular needs of that patient.   If there were no agreed standards as to what care the  patient with a given illness or condition might expect  from the NHS, there would be no reference points  against which one could assess and evaluate the quality  of clinical care given.   Audit incorporates a structure in which standards are  set and then practical solutions are found to bring that  service up to a particular standard.   A 'standard' in a clinical audit describes 'what should  be done' in a particular clinical situation. It must be up-  to-date and be based upon sound research evidence. It is  a statement that explicitly lays out (in precise, definite  and measurable terms) the quality of care expected.   A cycle of setting standards, monitoring perfor-  mance, and implementing change to bring perfor-  mance up to standard    In essence, audit is a review process that monitors clinical  quality (in a similar way that industries use quality con-  trol checks) to ensure that all the energies going into  'intervention X' are as effective as possible, and are  not departing from agreed standards of care (Fig. 1 1.3).   Audit is thus central to all lives as healthcare pro-  fessionals - it is a powerful tool that helps us to practise  medicine to the best standard. It is also meant to be a  non-threatening exercise for all those involved in it.   However, in order for an audit to be successful,  healthcare professionals must be receptive to the possi-  bility that their and the team's clinical practice (and thus  the quality of their treatment and care) may in fact be  improved.    Although patient care is the focus of audit activities, it  is also an essential mechanism (as part of clinical gover-  nance) for the medical profession and government to  move from a 'culture of blame and scapegoating' to  achieving an atmosphere where quality of care is the  focus, i.e. learning from our mistakes - what works well,  what does not and making necessary improvements. A  'blame-free' culture has therefore been promoted as the  means to encourage the disclosure of information that  will improve patient safety and therefore standard of  care (Donaldson 2000).   • Regional variations in the delivery of health care  ('postcode lottery')   • Medical education (the process is an educational  tool - review and reflection)   • It can act as a political tool (e.g. to argue for more  resources).   Society is increasingly scrutinizing the practice of  healthcare professionals. This is shown by the rise in  demands of pressure groups, press coverage and litiga-  tion. Audit helps us to improve our practice of medicine  and maintain the respect and appreciation of our  patients.   Clinical audit is a topic that comes up regularly at  interview - even if you haven't completed any audits,  you are expected to have a working understanding  of them.   It is increasingly a mandatory training requirement  to conduct audits in the Foundation and Training Years.  It is also often a regular feature of in-training appraisals  later on in your career. It is thus not only good for the  patient, but it is also good for your career!   All specialties hold audit meetings (which include  mortality and morbidity meetings) and both as a stu-  dent and as a junior doctor, it is advisable to understand  the basic processes.   Audit is one of the cornerstones of clinical gover-  nance. It is also strongly promoted by the National Insti-  tute for Health and Clinical Excellence (NICE).  Therefore, it is greatly relevant to the future of the  NITS and your working environment.   Confusion often arises between research and audit.  Audit is a separate concept from research. Both involve  measuring patient outcomes and, although for different  purposes, they both have important roles in clinical gov-  ernance (some differences are considered in Chapter 2).   Figure 11.4 highlights the differences between audit  and research. In summary:   • we use research to seek out new information which  provides the foundation for agreeing what we  should be doing, i.e. it gives us the evidence we need  upon which to base our standards   • audit examines current practice to see if we are main-  taining the standards we have set for ourselves.   Audit is a process with discrete stages (Fig. 11.5); how-  ever, it is also a continuous exercise, as shown in  Figure 11.6.   All aspects of medical care are suited to audit and  there are an abundance of topics from all specialties.  When considering a topic, you may be responding to an  identified problem or to new evidence. Considerations  include:   • Is the area of interest of high cost, volume or risk to  staff or users?   • Do you have the time and resources to complete the  audit cycle?   • Is the project supported by those who have the  authority and commitment to put changes into  practice?   • Will looking at this area help to improve the quality  of patient care?   Ultimately, the only reason for doing audit is to effect  change. Without change, it will just become another  report or inquiry which gathers dust on the shelves.   The problem audited should be capable of change  and if successful the change should be worthwhile  (Crombie & Davies 1993)   Setting a 'standard of care' (i.e. evidence base)  Assessment by audit (measuring what is currently  done)   Implement change (alter any deficient practices)  Audit to make sure things have actually improved  ('closing the loop')   As discussed before, a standard describes 'what should  be done' in a particular clinical situation. Standards are  the hallmark of audit and the basis of measurement  against which we judge a service. However, identifying  a standard is arguably the most difficult part of the audit.   The standard should correspond to the specific aims  and objectives of your audit; it may come from:   • national standards - such as those set by NICE, a  Royal College or a professional body   • there may be no standard - in which case you must  set one.   To set your own standards requires considerable effort,  but can be ultimately more rewarding. It will be specific  to your environment and adaptable to local circum-  stances. In order to set a new standard, there must be a  negotiation both within the audit group and with service  deliverers. This will mean that it will be more acceptable  to everyone and there will be a sense of ownership.   First, look for evidence and existing standards (such  as NICE guidelines):   • Comparison with other centres (i.e. is there a geo-  graphical variation in outcomes between you and  another centre)   • Clinical experience (if there is no evidence in that  area - an estimation of what level of care should  be achieved)   • A consensus to be reached, between all the teams  and individuals concerned within that area of  patient care.   Second, 'phrasing a standard'. Crombie and Davies  (1993) define a standard as having three parts:   a. This sets the point at which good care ends and  inadequate care begins.   b. It is a clinically relevant variable, which is easily  defined and measured, e.g. an HbAi C of 7% or  less for a patient with diabetes mellitus.   b. A target is essential, as some patients will not  comply, treatment will fail, etc.   c. It must be a compromise between clinical impor-  tance, attainability (i.e. must be realistic) and  acceptability (to all the team).    d. Set too high, the target becomes impossible and  you have created a healthcare problem. Set too  low, and we are not striving for the best medi-  cine, but convenient medicine.   For example - 50% of diabetic patients should  have an HbA lc of <7% (this is the current  target set for GPs under the Quality and Outcomes  Framework - see Ch. 10). In our example, the  IIbA lc is relevant because it indicates good dia-  betic control over time; it is evidence-based  because there is published evidence to suggest  that it will decrease the risk of diabetic complica-  tions (e.g. nephropathy); it ought to be achiev-  able for the majority of diabetic patients and it  is clearly measurable. It is distinct if you are  not measuring random or fasting glucose.   D= Distinct, i.e. not covered by other items  R = Relevant  E= Evidence-based  A = Achievable  M = Measurable.   a. Situations in which the criteria do not apply to  certain patients   For example - If the patient has a concurrent ill-  ness at the time of measurement, e.g. a patient  with significant educational needs may struggle  to take medication or adopt lifestyle changes in  a reliable way. In this example, our standard of  care is that: 'A good HbA lc measurement is less  than 7% mmol/1 in a diabetic patient. We aim  that 50% of the population will attain this,  UNLESS they have a concurrent illness which  prevents or alters measurement'.   Irrespective of who set the standard - NICE or John  Smith of Any Town Hospital Trust - a standard must  convey to everyone (clinicians, auditors and patients)  precisely what is expected from the service and what it  is being measured against. The standards used should  be included in any audit report, as they are what we have  measured the service against.   This refers to the observation of current practice, and the  collection of data. There are different ways of carrying  out an audit cycle, and these can vary in complexity  from looking at one subset of patients to multicentre  analysis of all patients seen.    Data collection is an essential part of the cycle, as  without data, we cannot hope to know what to change  or how.   • Is it prospective (collecting new data) or retrospec-  tive (getting information from routine sources)?   There are two ways to collect data (retrospectively and  prospectively), and the method will depend on which  source of information you use:   1 . Retrospective audit uses information which is rou-  tinely kept by your organization (e.g. waiting  times, blood results, patient outcomes). The infor-  mation should be readily available, accurate and  complete (e.g. patients' medical notes, biochemis-  try results).   2. Prospective audit allows you to set up a reporting  system where no such data collection exists (e.g.  what time the patient ate or why their discharge  was delayed) (Fig. 11.7).   • The important question is: what sample will  be sufficient for senior colleagues to agree  that they will introduce changes if the audit  indicates the need for this?   • The data collected must evaluate every aspect  laid out in the standard   • Make sure your data collection sheet is asking  the right questions, in a relevant way    • Remember to keep all data confidential (pref-  erably anonymous); though ideally this  should be identifiable to the auditors/ audit  department through use, e.g. of hospital record  numbers - this is so that audit results can be  checked if necessary   • Free text is difficult to analyse and should be  avoided.   • Trial a pilot audit on a small sample of patients:   • Undertake a mini-audit on a very limited  number of patients (e.g. five) to check that:  the questions are not ambiguous, the infor-  mation is answering your questions and that  the data are not too difficult to obtain from  the record.   • Carry out the audit - you are ready to begin.   Audit is a separate concept from research. Audit  examines current practice to see if we are maintaining  the standards we have set for ourselves.   At the end of the assessment section of the audit, there   3. Those that didn't conform to the standard OR meet  the exceptions.    Each should be reported, and you must calculate  whether you have met your target or not, for each stan-  dard criterion.   At this stage, it is important to have a consensus  meeting where you formally present your data to senior  colleagues and all the interested members of the health-  care team and patient consumer groups.   This is the final step in the loop, and provides the reason  for the whole exercise. By identifying the areas that are  not living up to the prescribed level of care, we can start  to think of ways to ameliorate the problem.   The aim of audit is to improve the delivery of health  care, so there is no point in simply describing a health-  care problem.   Unfortunately, it is usually far easier to identify a  deficiency than to solve it overnight. While some prob-  lems (such as lack of staff or insufficient training on  technique X) may be relatively straightforward to cor-  rect, there are many subtle barriers and underlying  causes that make effecting change difficult. For example,  it may involve more work for the provider of that service  with no extra resources or it may be very different from  conventional practice and, therefore, seem challenging.   This is a crucial phase, as it offers the possibility for  practical solutions to be forged. Therefore, it should be a  decision, guideline or change in which all staff involved  are consulted for an opinion. Changes must be imple-  mented with care and incrementally, so as not to disrupt  the status quo unnecessarily. It should also be explained  to staff not directly involved in making the decision why  it has been made and it should be stressed that it is  hoped that it will lead to improved patient care.   It is too easy to assume that we have effected great  change by our efforts. Since audit is intended to  improve patient care, we must re-audit ('close the  loop') in order to assure ourselves that the solution  we have implemented has had an impact upon the  original problem.   The basic principle of audit is that it should be  'complete, accurate, transparent and honest’.   This should be reproduced in any exam question on  audit as there is likely to be a mark for saying it!   A central part of audit is a duty of confidentiality - not  only to those whose care has been reviewed (see Ch. 2) -  but also to the clinical staff who managed them. Audit  will only blossom where there is confidence that the  findings (which may include individual failings) cannot  be used for disciplinary actions against individual mem-  bers of staff. This must be taken into account in the  study design.   An audit is more likely to be successful if it has the enthu-  siastic support of all the staff concerned. It will have  implications for professions and disciplines other than  your own, and so they should be consulted and involved  at an early stage. The best way to achieve this is to form an  audit group which incorporates representatives from all  the teams involved in delivering the service. Involving  patients in the process is also considered desirable.   Regular discussion sessions are an important part of  audit; the project will benefit and in fact requires input  from relevant staff at certain key points.   It is crucial to have a consensus meeting (i.e. a meet-  ing in which all specialties and teams are represented)  where agreement is reached that the topic is important  (otherwise they are unlikely to help to develop and  implement any changes) and on the standards against  which you will assess health care (or else they may reject  your findings on the grounds that they were inappropri-  ate benchmarks).   For the same reason, another consensus meeting  should be held once you have collected your data, so  that you can agree that you have identified an important  problem, and so you can think about how you are going  to change the service and over what timescale you will  implement this.   As a general rule, people are far more receptive to  change and willing to cooperate in something for which  they are responsible and have helped to create, than in  something which is imposed from an external source.   The most important points of the cycle are summa-  rized in Figure 11.6. It is worth remembering these for  exams and interviews.   Audits can be categorized into the areas of care that they  look at:    Typically more of a management issue than a clinician's  problem; e.g. looking at staffing levels/bedspaces and  how this impacts upon A&E trolley waits.   • Did the patient receive the best possible care?  The most common type of audit:   • Was the care given as it was originally intended to  be?; e.g. did patients with an acute myocardial  infarct receive thrombolysis within 6 hours?   • In other words, did the intervention have the  expected benefit, or were there any adverse  effects?   Outcome is perhaps the most difficult type of audit  because the consequences can be varied and subtle.  They can also be extremely subjective. Especially diffi-  cult when considering chronic processes - BUT it is  the most relevant type of audit, as it asks: 'How did  the patient do?', e.g. the Confidential Enquiry into  Maternal and Child Health (CEMACH).   There are a number of different measures for patient  outcomes. Death is the most extreme outcome; mortal-  ity figures are regularly audited for perioperative care  (National Confidential Enquiry into Patient Outcome  and Deaths), NCEPOD: a continuing national audit  programme funded by the National Patient Safety  Agency and Department of Health (DoH) but indepen-  dent of the DoH and professional associations. Other  measures include morbidity (how diseased a person is  after the intervention), QALYS (quality-adjusted life  years) and patient satisfaction. The difficulty with such  'soft' measures is that there is a wide variation in how  one interprets them. They rely on subjective values of  the doctor or the patient and frequently both.   In an ideal world, there would be no barriers to audit.  However, there are both practical and political  considerations:   • Does everyone see it as important a topic as you do?  Unless the audit findings are seen as a priority (by  senior colleagues or other departments) no change  will be effected. This highlights the need for a con-  sensus of opinion and constant discussion.   • There may be different motives behind an audit.  Managers may well request an audit because of polit-  ical pressure on them - if so, the auditors' agenda  will be quite different from the managers'.   • An Emergency Department (ED) physician may  want to perform an 'audit of process' for patients  presenting with acute myocardial infarcts (e.g.  how quickly they were triaged, investigated and  definitive care given).   • The management in a hospital may want to have  an 'audit of structure' within the ED (e.g. lack  of bedspaces, staff shortages and the ensuing  trolley waits, meaning that the patient with a  myocardial infarct was not taken to CCU).   • Audits can often run into problems when they do  not consider this 'ideological mismatch' between  the agendas of clinicians, managers and auditors.   • Be aware of other reasons why audit does not effect  change - it may be a political rather than practical  obstacle.   Within each NHS Trust there are Clinical Audit Depart-  ments that have staff specifically trained to advise and  assist in any of the stages of an audit. They are there  to help you get the notes and make sure you perform  the audit correctly while maintaining patient confiden-  tiality. Plan your audit carefully and remember that data  collection (although the most obvious step) can only  happen once you are clear on exactly what information  you are trying to find out:   2. Create an audit team (remember - in order to be  effective it needs input from all the various disci-  plines involved in providing the service)    Risk management is an organizational response to a  need to reduce errors and their costs, and is now  regarded as an integral component of the management  in most NHS Trusts (Hobbs 2001). It places particular  emphasis on occasions in which patients are harmed    or disturbed by their treatment or care. Errors can  involve a complex interplay of human and organiza-  tional factors. Dealing with complaints effectively is a  key part of risk management (see Ch. 2).   Clinical risk management means having systems to  understand, monitor and minimize risks to patients  and staff and to learn from mistakes. For example:   • How does an NHS Trust liaise with other organiza-  tions where care is shared?   • What improvements to patient care have resulted  from clinical risk management?   Remember: Clinical risk management means  having systems to understand, monitor and  minimize risks to patients and staff and to learn  from mistakes.    The current NHS complaints procedure was instituted  in 1996 by the NHS Executive. It was titled: 'Com-  plaints, Listening . . . Acting . . . Improving: Guidance on  Implementation of the NHS Complaints Procedure'. The  aims of this complaints procedure are to provide a sim-  ple, responsive way of tackling complaints, with the goal  of improving the level of service provided by the NHS.  In essence, it proposed three tiers of response to com-  plaints. The complaints procedure was a method of con-  flict resolution which patients and next of kin could  pursue as an alternative to legal action. Patients may  now take complaints to court (in order to seek compen-  sation) as well as pursuing local resolution.   Most complaints should be dealt with at a local level.  This would involve the person about whom the com-  plaint was made responding either in writing or in person  to the complainant. Hospital Trusts provide a lay concil-  iator to facilitate such meetings. With honest and open  communication, the complainant and the person com-  plained about can see each other's points of view, and res-  olution to the satisfaction of both parties can be achieved.   A complainant who is not satisfied by attempts at  local resolution can request an independent review of  the complaint. All Trusts will have a complaints conve-  nor who will decide whether to set up an independent  review panel or return the complaint to the local level.  There is no automatic right to independent review, and    the complainant must state a case for why local resolu-  tion has been unsatisfactory.   An independent review panel consists of three lay  members advised by clinical specialists. The function  of the panel is to investigate the complaint and make  a report setting out its conclusions, with appropriate  comments and suggestions. It cannot suggest that any  person should be subject to disciplinary action or  referred to any of the professional regulatory bodies.   The report is sent to the Chief Executive of the Trust,  who must then write to the complainant informing  them of any action that is being taken as a result of  the panel's deliberations and the right of the complain-  ant to take their grievance to the ombudsman (see  below) if they remain dissatisfied. It is up to the Chief  Executive to decide whether or not to refer the cases  to a professional body (e.g. the GMC) or initiate their  own disciplinary procedures.   The ombudsman is a civil servant, independent of  the NHS, who is responsible for reporting to parliament  about the running of the NHS. It is up to the ombuds-  man whether or not to further investigate any com-  plaints. It is within his power to ask healthcare  professionals involved in complaints to appear before  a parliamentary select committee in order to give their  account of the subject of the complaint. This complaints  procedure provides no avenue for the complainant to be  compensated. In order to do this, the complainant  needs to use the civil justice system (outlined in Ch. 1).    NHS complaints procedure:  Level 1 - Local resolution  Level 2 - Independent review  Level 3 - Ombudsman.    In medicine, learning from mistakes can involve sharing  and discussing them with patients and colleagues. This  requires their accurate reconstruction and description as  well as processes to analyse and produce useful out-  comes for the future. One such process is significant  event audit (or analysis). Not to be confused with clin-  ical audit, this may be conducted for individual cases in  which there has been a significant occurrence (not nec-  essarily involving an undesirable outcome for the  patient), which are analysed in a systematic and detailed  way to ascertain what can be learnt about the overall  quality of care and to indicate changes that might lead  to future improvements (another process is the clinical  incident reporting system).   Remember: It is important to remember that the  purpose of significant event audit is to learn as an  institution, not to apportion blame.   Talks on risk management in health care often mention  the 'Swiss Cheese' model (Fig. 11.8). Reason (2000)  describes the causation of an adverse event as a series  of events which must occur in a particular order for the  event to occur. He compares this to the holes of several  slices of swiss cheese lining up. The slices of cheese  are analogous to factors or barriers preventing an acci-  dent, and the holes represent flaws or failures in each  of the barriers. The holes in the defences arise for two rea-  sons: active failures (e.g. unsafe actions by healthcare  staff) and latent conditions (problems within the system  such as excess time pressure or understaffing). Nearly all  adverse events involve a combination of these two sets of  factors. A hole may allow a problem to pass through in  one layer but in the next layer the holes are in different  places and the problem is stopped. For a catasuophic  failure to occur, all the holes in the 'swiss cheese' need  to line up.   Deliberate deviations from rule or policies are known as  violations. They generally represent attempts to work  around over-complex and undependable systems. They  do not necessarily entail a disregard for patient-safety.    Reason (1992) defines violations as deliberate - but  not necessarily reprehensible - deviations from practices  deemed necessary (by designers, managers and regula-  tory agencies) to maintain the safe operation of a poten-  tially hazardous system. Hurwitz and Sheikh (2010)  outline a number of circumstances that predispose to vio-  lations: tiredness, time pressures and rules and proce-  dures that (appear to) lack rationale. They also suggest  that violations may not be entirely voluntary on the part  of the transgressor. For example, a doctor may decide to  allow a relative to translate for an adult patient where  there is no available interpreter. This may be a failing  of the system but also represents a violation on the part  of the doctor who ignores policy in order to allow the  patient to consult without delay.   • Describe the difficulties involved and the measures  taken to tackle them in ‘setting standards'.   • Discuss the difference between a mistake  and a violation when thinking about risk  management.   Armstrong, D., 2003. Clinical governance. In: Outline of  Sociology as Applied to Medicine, fifth ed. Hodder Arnold,  London, p. 112.   Chambers, R., Booth, E., Rogers, D., 2007. Stage 6: What  clinical governance means and how to put it into practise. In:  Clinical Effectiveness and Clinical Governance Made Easy,  fourth ed. Radcliffe Medical Press, Oxford.   Crombie, I.K., Davies, H.T., 1993. Missing link in the audit  cycle. Qual. Health Care 2 (1), 47-48.   Department of Health, 1989. Working for patients. The  Stationery Office, London, Cm 555.   Donaldson, L.J., 2000. An organisation with memory: report of  an expert group on learning from adverse events in the NHS.  HMSO, London.   Healy, K, 1998. Why clinical audit doesn't work. Success  depends on type of audit. Br. Med. J. 316 (7148), 1906.   Hobbs, S., 2001. Learning from complaints. In: Lugon, M.,  Seeker-Walker, I. (Eds.), Advancing Clinical Governance.  Royal Society of Medicine Press, London.   Hurwitz, B., Sheikh, A. (Eds.), 2010. Health care mistakes,  violations and patient safety. In Healthcare Errors and  Patient Safety. Wiley-Blackwell, Oxford.   NHS Executive, 1996. Promoting Clinical Effectiveness. A  framework for action in and through the NHS. NHS  Executive, London.    Reason, J., 2000. Human error: models and management. BMJ  320, 768.   Scally, G., Donaldson, L.J., 1998. Looking forward: clinical  governance and the drive for quality improvement in the  new NHS in England. BMJ 317, 61-65.   WHO, 1988. Quality Assessment and Assurance in Primary  Health Care. World Health Organization, Geneva.   Chambers, R., Boath, E„ 2000. Clinical Effectiveness and  Clinical Governance Made Easy, second ed. Radcliffe  Medical Press, Oxford, pp. 1-63, 117-146.   Oxford Centre for Evidence-Based Medicine (OCEBM) Levels  of Evidence Working Group, 2011. The Oxford 2011 Levels  of Evidence. OCEBM, Oxford.   Pringle, M., Bradley, C.P., Carmichael, C.M., et al„ 1995.  Significant event auditing. A study of the feasibility and  potential of case-based auditing in primary medical care.  Occas. Pap. R. Coll. Gen. Pract. 70, i-viii, 1-71.   WHO, 1983. The Principles of Quality Assurance. (Report on a  WHO meeting.) World Health Organization, Copenhagen.    Single best answer questions (SBAs) 169  Extended-matching questions (EMQs) 175  Short-answer questions (SAQs) 1 79  Essay questions 181  SBA answers 183  EAAQ answers 185    1. Which of the following is NOT an item in the 2010  updated core curriculum for Medical Ethics and Law?   2 . Which of the following options is a framework around  which an ethical discussion can be based, regardless of  the favourite ethical theory held by the participants?   3. Which of the following is NOT required for a clinical  negligence case in the civil courts?   (d) Evidence that the harm was caused by the failure in  the duty of care   (e) A responsible body of medical opinion which the  judge deems reasonable to inform the court   4 . The following, which is considered an absolute right, is  enshrined in the European Convention on Human  Rights:   (c) The right to freedom from torture (inhuman and  degrading treatment)   5 . The following offence would be heard in the civil  division of the Courts in the UK:   (c) Its chief role is to set educational, professional and  clinical standards for each specialty   (e) Compensates patients who have suffered as a  result of medical negligence   (a) Provides ethics advice online and on the telephone,  but only for its members   (b) Who can apply for access to a patient's health  records?   (d) What should a doctor do when they have child  protection concerns about a patient?   (e) How much information should patients be given in  order for consent to treatment to be valid?   (a) Misleading patients into receiving treatment which  they do not need   (b) Omitting or lying about information which would  affect the choice a patient makes   (d) Altering an entry in healthcare records which has  been made on a previous occasion   (b) It is an uncommon issue for doctors in the UK   (c) Freedom of the press is more important, especially  if there is a public interest in knowing which  doctors have HIV   (d) The use of confidential information in medical  research is covered by the Health and Social Care  Act 2006 and does not require prior REC approval   (e) Confidential information may be disclosed with  consent from a person properly authorized to act  on the patient's behalf   (c) Unable to use the information to come to a  decision    12 . Which of the following best reflects current law on  consent?   (c) Valid consent requires that the patient knows  every detail of a proposed treatment, whether they  want it or not   (d) Information should be withheld if it will cause the  patient to refuse treatment   (e) Consent necessarily requires information about the  broad nature and purpose of any proposed  treatment   IB. The following is NOT one of the five principles of  the Mental Capacity Act 2005:   (a) Every adult must be assumed to have capacity  unless it is proved otherwise   (b) People must be given all appropriate help before  they are deemed incapable of making their own  decisions   (c) Individuals retain the right to make what might be  seen as eccentric or unwise decisions   (d) Anything done for or on behalf of people  without capacity must be to protect them or  others from harm   (e) Anything done for or on behalf of people  without capacity should be the least restrictive  of their basic rights and freedoms   14 . Do Not Attempt Resuscitation orders should be  considered ONLY when:   (a) Resuscitation is in the best interests of the  patient; that is, it is likely to cause a quality  of life that is not considered to be worse than  death   (b) There is a decision about whether to commence  antibiotics for a pneumonia   (d) Resuscitation is in line with the informed wishes of  a competent patient   15. Factors AGAINST a prosecution for aiding and  abetting suicide include:   (b) The victim did not have the capacity (as  defined in the Mental Capacity Act 2005)  to reach an informed decision to commit  suicide   (c) The actions of the suspect may be characterized  as reluctant encouragement or assistance in the  face of a determined wish on the part of the  victim to commit suicide   (d) The suspect gave encouragement or assistance  to more than one victim, and these victims  were not known to each other   (e) The suspect was acting in his or her capacity  as a medical doctor, nurse, other healthcare  professional    16 . The Human Fertilization and Embryology Act permits  which ONE following activity:   (a) The creation or use of any embryos outside the  human body (however they are created) outside of  licensed clinics in the UK   (d) Modification of the genetic structure of any cell  which is part of an embryo   (e) Sex-selection of offspring to avoid a having a child  with a serious sex-linked disease   (a) They are generally considered as negligence  cases in the civil courts   (b) A court is more likely to award higher damages if a  handicapped child is born as a result of negligence   (c) Courts may consider the discomfort and financial  loss resulting from either a subsequent abortion or  pregnancy and delivery   (d) Courts generally award damages for the upkeep  of any child born as a result of failed sterilization   (if negligence is alleged) may result in a case  being brought to court by the woman who is his  sexual partner   18. Which of the following options correctly pairs a  potential source of transplant organs with a relevant  ethical issue?   (a) Cadaveric organ donation - issues relating to the  definition of death and ownership of the body   (b) Organ donation from living people - risk of  transfer of diseases from animal to human   (c) Xenotransplantation - a concern that the poor may  be coerced to sell their organs to the rich   (d) Organ markets - many more people are willing to  receive than they are to donate   (e) Mandated choice - having to discuss organ  donation with newly bereaved relatives   19. Which of the following statements is true about  challenging resource-allocation decisions in the  courts? (Choose the BEST answer):   (a) A successful Judicial Review case would  necessitate compensation for the claimant's loss   (b) A patient might claim that in not funding a  particular service the NHS failed in its statutory  duty - this would be a negligence case   (c) Following the Human Rights Act 1998, Article 3 of  the European Convention on Human rights  (protections from inhuman or degrading  treatment) could be used to challenge refusal of  life-saving treatment   (d) Decisions which are based on a reasonable  procedure and relevant grounds are less vulnerable  to be challenged in court   (e) The Human Rights Act 1998 is irrelevant to  resource allocation decisions   (b) Favour the sick and the elderly because they have  greater need   (c) Derived from interviewing a large number of  people to determine what is beneficial and then  attempting to quantify it with numerical values   (e) Unproblematic because different people all  allocate similar values to health and medical  treatment   22 . A healthcare organization's resource allocation  committee comes to the conclusion that it will  not pay for gender reassignment surgery on the  basis that the evidence is unclear whether this is  helpful. The committee decides that funding for  gender reassignment surgery may be authorized  by the Director for Public Health in exceptional  circumstances though they do not anticipate this  will ever be requested. It does not specify any  exceptional circumstances. Which of the following  BEST describes the situation?   (a) A patient with clinically proven gender-dysphoria  would not be able to claim that the situation  amounts to a blanket ban on gender reassignment  surgery   (b) The likeliest approach with which to challenge the  decision in the courts would be as a claim in  negligence   (c) The likeliest approach with which to challenge the  decision in the courts would be as a judicial review  case   (d) A judicial review case would award  compensation to successful claimants in order  to correct any harm caused by the negligent  decision process   (e) A successful negligence action would force the  health organization to revisit the decision in a  more reasonable manner on more relevant  grounds   (b) Assign the value of 1 to a year of unhealthy  life and more than 1 to different levels of  health   (d) Rest on the assumption that we should measure  ‘objective function' as the quality part   (e) Make no claims to introduce evidence into  healthcare allocation decisions    24 . Which statement about the concept of the  epidemiological triangle is CORRECT?   (b) Disease is seen as an interaction between two  entities: the host and the disease agent   (c) Exposure to the disease agent is sufficient for the  disease to manifest   (d) The disease can be prevented by modifying factors  that influence exposure and susceptibility   (e) More useful in understanding causation of chronic,  degenerative diseases than infectious ones   (c) Technological interventions are rarely successful in  the treatment of disease   (d) Explanations of disease focus on biological  changes in conjunction with social and  psychological factors - that is, they are  reductionist in nature   (e) It is currently assumed that every disease is caused  by a specific identifiable agent   26 . Holmes and Rahe (1967) developed the Social  Readjustment Rating Scale (SRRS). This consisted of a  number of life events that were given a score  depending on how life-changing each event was. The  LOWEST SCORING life event was:   27 . Which ONE of the following is NOT one of Hannay's  (1988) five stages of illness:   28 . According to Banks et al (1975), which ONE of the  following symptoms has to occur MOST frequently to  a patient before it results in a consultation with a  healthcare professional?   29 . According to Banks et al (1975), which ONE of the  following symptoms has to occur LEAST frequently to  a patient before it results in a consultation with a  healthcare professional?   30. Which ONE of the following is NOT a common reason  given by patients for attending a practitioner of  alternative or complementary medicine:   (a) A greater amount of time and continuity in the  consultation   (b) The attention to personality and personal  experience: treatment is 'individualized'   (a) The pressure that society puts on patients to  conform to their idea of what a typical patient  looks like   (b) The expectation that a blind person is quiet and  docile   (c) Labelling causes disease by identifying people as  sick or deviant   (d) Labelling creates disease by identifying people as  sick or deviant   (e) It refers to changes in behaviour as a result of an  illness   32. Which of the following statements about the history of  the UK National Health Service (NHS) is TRUE?   (a) During the Second World War, all hospitals had  been privatized   (b) The famous Beveridge Report (1911) established  the principles for a post-war 'welfare state'.   (c) Prior to the NHS there was no healthcare provision  for manual labourers   (d) After a series of negotiations between the  government and the General Medical Council  (GMC), the National Health Service Act (1946)  created the NHS in 1948   (e) The NHS was originally expected to cost less as the  nation became healthier   (a) In a pluralistic health system, healthcare facilities  may be owned by private groups or the state   (b) In a health insurance system, healthcare facilities  may be owned by private groups or the state   (c) In a health service system, the state owns most  facilities   (d) In a socialized health system, the state owns most  facilities   (e) In a socialized health system, nearly all healthcare  professionals are employed by the government   34. Which ONE of the following statements is NOT a  characteristic of professions as define by Carr-  Saunders and Wilson in 1933?    (c) Discrete body of knowledge over which members  have complete control   (d) Able to regulate their own working conditions  independent of the state   35. Which of the following is a valid criticism of the  Registrar General's classification of social class?  (Choose the SINGLE BEST answer):   (a) The classification is a measure of income rather  than social status   (c) The classification is accurate in the way it deals  with women   (d) The classification is increasingly irrelevant given  the flexible nature of labour markets, job insecurity  and unemployment rates   (e) This classification is the stratification most widely  used in current UK national statistics   (a) Men have more morbidity than women from  anxiety and depressive disorders   (b) Women have higher rates of schizophrenia and  alcohol and drug dependence   (c) Women are more likely to consult a GP  than men   (d) GPs see men more frequently for consultations  regarding cancer, obesity, anaemia, migraine,  osteoarthritis and back pain   (e) GPs see women more frequently for consultations  regarding diabetes, heart attacks and angina   37. Which of the following deaths does NOT  necessarily need to be reported to the Coroner  in the UK?   (a) A 90-year-old patient is found dead in a nursing  home. A doctor has not attended her in the  previous 14 days   (b) A child has collapsed and died while playing in a  sports match. The cause of death is unknown or  uncertain   (c) A piece of masonry has fallen from a building,  crushing a man to death   (d) A patient has died while having a routine  laparoscopic hernia repair   (e) A patient is admitted to hospital with a  major stoke. After 3 days in hospital the  patient develops a pneumonia and dies  2 days later   38. Which of the following is NOT one of the domains  of the Quality and Outcomes Framework for  General Practice in England?    39. Which of the following statements best describes  screening for disease in a population?   (c) Opportunistic case finding in the UK is more likely  to occur in secondary care   (d) Skin and renal cancer screening is routine  in the UK   40. Which ONE of the following is NOT a notifiable  disease in the UK?   (a) It provides a way of reviewing very small amounts  of medical literature primarily for the  pharmaceutical industry   (b) Provides a robust way of managing a disease but  does not make a significant difference to clinical  outcome   (c) Serves as a means of modifying current disease-  management practices   (d) Fails to identify gaps in the current state of  knowledge   (e) Is considered separately from the quality  and efficiency of disease-management  procedures    43. Which of the following statements best describes  Reason's (2000) model of clinical error?   (a) When several active failures occur in conjunction  with latent conditions, a catastrophic failure may  occur   (b) Active failures may include problems within the  system such as excess time pressure or  understaffing   (d) Hardly any adverse events involve a combination  of active failures and latent conditions   (e) The combination of active and latent factors is  sometimes described using a metaphor of a game  of snakes and ladders   44. A patient dies in intensive care when one of the  ventilators fails. It transpires that one of the cleaners  has inadvertently unplugged a ventilator in order to  use the power socket. According to the principles of  risk management, which is the BEST plan to prevent  something similar occurring in the future?   (b) A more accessible power socket should be found  and all cleaners in the hospital educated about not  interfering with medical equipment. An e-mail  could be sent to all doctors and nurses to be  vigilant for unplugged equipment   (c) A clear warning sticker should be placed above the  power sockets of all monitoring or otherwise  critical medical equipment, and all the cleaners in  the hospital educated about not interfering with  medical equipment. The incident could be used as  a learning case in staff inductions   (d) A clear warning sticker should be placed above the  power socket, and all the cleaners in the hospital  educated about not interfering with medical  equipment   (e) A clear warning sticker should be placed above the  power sockets of all monitoring or otherwise  critical medical equipment, and all the cleaners in  the hospital educated about not interfering with  medical equipment    1. Each of the following is an  important concept, theory or  framework in Medical Ethics  and Law   Instruction: Select the best option from the list (A-K) to  match the descriptions in questions 1-5. Each option may  be used once, more than once or not at all.   1. The principle of doing 'good' or improving the welfare  of patients.   2. This is illustrated by the ‘right to health care/ which  imposes a duty on the government to provide hospitals,  nurses and doctors for its citizens.   B. This theory is associated with the idea that we should  create laws which maximize benefit.   4 . The principle of respecting the decisions made by those  capable of making decisions.   5. This principle might include the principle (associated  with the philosopher Aristotle) of treating equals equally  and unequals unequally according to the morally  relevant inequality.    2. The following legislation may in  some way relate to patient  confidentiality and disclosure of  information   I. This Act allows the police to access medical records,  provided they have a warrant.   2 . This Act permits the Secretary of State for Health to  allow disclosure of information which is in the public  interest.   3. This Act requires all UK citizens to report any information  which may be linked to an Act of Terrorism, in the UK or  abroad, or face criminal charges if it is subsequently  found that they could have done so and did not.   4 . This Act allows someone to know what information is  held about them (for example by) their GP.   5 . This Act maintains that confidentiality is secondary to  the prevention of harm to a child.    3. The following is a list of terms  associated with consent   1 . The doctor tells the patient that she needs a blood test in  order to reach a diagnosis and the patient holds out her  arm and rolls up her sleeve.   2 . An 80-year-old man who has advanced dementia and  has lost decision-making capacity (at a close relative's  insistence) signs a form stating that in the event that he  is gravely ill, he does not wish to receive any medical  treatment.   3. An opera singer is told by the surgeon that she needs to  have surgery for thyroid cancer. He explains the nature  and the purpose of the surgery but neglects to mention  a low risk that her voice will be affected as a result of the  surgery. She signs a consent form.    4. A patient with special educational needs who is unable  to read or write has the nature and purpose of a  procedure explained to him in simple terms which he  can understand. He agrees to be treated.   5. A doctor is called to see a sick patient in a residential  home. She is unconscious but has a signed and  witnessed document (which she made at a time  when she was assessed to have capacity) which  outlines specific treatments she would rather not have  and the specific circumstances in which she would  refuse them.   6. A 14-year-old boy is brought to hospital with acute  appendicitis. The surgical team thinks that he  demonstrates sufficient maturity and understanding in  order to consent to his operation.   7. A patient signs a consent form for a surgical procedure.  When asked immediately after his clinic appointment,  he is unable to answer any questions about what  operation he is having or why he is having it.    4. The following is a list of terms  associated with medically assisted  dying   Instruction: Match the best relevant term from the list (A-H)  to the relevant description in questions 1-5. Each term may  be used once, more than once or not at all.   I . Deliberately ending the life of a person who is incapable  of expressing any wishes about whether they want to  live or die, motivated by a consideration of that person's  best interests.   2. Deliberately ending the life of an elderly person who is  gravely ill in order to make the bed available to someone  who can get more use from it.   3. A competent, able-bodied person has a progressive  illness which will render her incapable at a later stage.  She seeks medical assistance for medication with which  she may end her own life.   4. A competent patient who is in pain and distress but  unable to take his own life asks his doctor to administer a  lethal injection.   5. A doctor increases the dosage of painkillers or sedation,  at appropriate levels to control a patient's symptoms, in  the knowledge that this may have a life-shortening side-  effect. The doctor is adamant that she only intends the  pain-killing and not the patient-killing effect of the  medication.    5. The following is a list of terms  associated with an approach to  resource-allocation   Instruction: Match the best relevant term from the list (A-G)  to the relevant description in questions 1-5. Each term may  be used once, more than once or not at all.   2. The right not to be killed and to possess property - in  simplistic form, each for him/herself.   3. Take from each according to ability and give to each  according to need.   4. A rational person who makes a decision behind a veil of  ignorance (without knowing who will benefit) will  look after the least well-off.   5. Act to maximize welfare for the greatest number (at the  least cost).    6. The following is a list of terms  associated with sociology and disease   Instruction: Match the best option from list (A-l) to the rel-  evant description in questions 1-5. Each option may be used  once, more than once or not at all.   2. The idea that the greater availability of healthcare  creates increasing dependence on doctors.   3. The notion that technological interventions are  generally successful in treating disease.   5. An idea which has developed from the observation that  certain groups tend to get certain diseases.    7. The following is a list of the  stages of dying from the Kubler-Ross  (1969) model   Instruction: Match the best relevant stage from the list (A-E)  to the relevant scenario in questions 1 -5. Each of the follow-  ing options may be used once, more than once or not at all.   1. After being diagnosed with lung cancer, a patient gives  up smoking.   2. A patient with bladder cancer asks about palliative  medicine and advance directives.   B. After being diagnosed with end-stage renal failure, a  patient seeks a private second opinion.   4. A patient with alcoholic liver cirrhosis swears to his  doctors that he will never drink again if his condition can  somehow be cured.   5. A patient with ovarian cancer says that she has lost her  appetite and is no longer interested in seeing her friends.    8. The following is a list of concepts  which have been used to explain the  position of older people within society   Instruction: Match the best relevant concept from the  list (A-G) to the relevant description in questions 1-5. Each  option may be used once, more than once or not at all.   1. This theory stresses the importance of social structures  in creating the circumstances elderly people find  themselves in.   2. Old people gradually disengage from a range of  social activities until they become unable to fulfil the  roles they had previously held and ultimately become  dependent.   B. This theory holds that in fact older people are able  to enjoy relatively good health and affluence.   4. The placement of older people in ‘old people's homes'  compounds this problem by removing older people  from communities.    5. This theory holds that older people are increasingly  undertaking activities, such as travelling and learning a  new skill, that were once seen as the younger  preoccupations.    9. The following is a list of types of  healthcare study   Instruction: Match the best option of type of study in the list   (A-H) to the relevant description in questions 1-5. Each op-  tion may be used once, more than once or not at all.   1. May describe a disease in terms of person, place and  time.   2. This combines the results of many (possibly  inconclusive) trials to generate a more precise  understanding of the effectiveness of an intervention.   3. Subjects are classified according to presence or absence  of exposure to one or more factors and followed for a  specific time period to determine the development of  disease.   4. An example of this type of study might be one that  compares the incidence of skin cancer for people living  at different latitudes.   5. This uses rigorous selection and analysis of papers to  draw the most valid conclusion about whether or not an  intervention works.    10. The following is a list of terms  associated with public health  management   Instruction: Match the best relevant term from the list (A-G)  to the relevant description in questions 1-5, concerning the  public health management of primary tuberculosis. Each  term may be used once, more than once or not at all.   4. This may include identifying and treating those who  already have the disease, to shorten their infection  and to stop it being passed on to other people.    11. The following is a list of types of  research study   Instruction: According to the Oxford Centre for Evidence-  Based Medicine 201 1 guidelines, which type of study from  the list (A-l) could be considered to be 'Level 1 ' evidence for  each of the research questions 1-7? Each option may be  used once, more than once or not at all.   4. What will happen if we do not add a therapy?    12. The following is a list of terms  associated with the process  of improvement in quality  of health care   may be used once, more than once or not at all.   1. The process of reviewing the delivery of health  care to identify deficiencies, so that they may be  remedied.   2. The tension between institutional control over  clinical decisions while allowing individual doctors  some freedom to act in the interests of their  patients.   3. A system through which NHS organizations are  accountable for continuously improving the quality of  their services and safeguarding high standards of care  by creating an environment in which excellence in  clinical care will flourish.   4. This means having systems to understand, monitor and  minimize risks to patients and staff and to learn from  mistakes.   5. This may be conducted for individual cases in  which there has been an occurrence (with an actual  or potential undesirable outcome for the patient).   This is analysed in a systematic and detailed way to  ascertain what changes might lead to future  improvements.   1. Give five examples of ethical issues of particular  relevance to medical students.   2. What are the four principles of bioethics? - Give a one-  line summary of what each means.   B. What is virtue ethics? - Give an example of a virtue.   4. What are the key differences between a civil case and a  criminal case? - Give an example of each relating to  health care.   5. Which articles of the European Convention on Human Rights  might relate to health care? - Give at least four examples.   1. Outline the roles of the BMA, the GMC and the Royal  Medical Colleges.   2. List the circumstances where a doctor might be required  to breach patient confidentiality.   B. Summarize the ethical and professional issues raised  by doctors' and medical students' use of social media.   5. List the key ethical considerations when conducting  medical research on animals.   1. What is the difference between explicit and implied  consent? - Give examples.   2. What are the criteria of capacity set down in the 2005  Mental Capacity Act?   3. List the components of the Fraser Guidelines for  clinicians who give contraceptive advice or treatment to  children under the age of consent for sex.   4. List the key types of abuse that frail elderly patients may  be vulnerable to.   5. What is the main role of the Mental Capacity Act 2005  and how is this different from the main role of the Mental  Health Act?   1. What is the relevance of defining what counts as a  human person? - Give an example of a relevant issue in  the healthcare setting.   Outline the provisions of the 1961 Suicide Act (as  amended by the 2009 Coroners and Justice Act) that  relate to assisted suicide.   List the key arguments for and against euthanasia and  other forms of clinician-assisted dying.   Outline the ways in which the supply of organs  for transplantation might be increased, and  summarize the ethical arguments for and against  each method.   1. What is commissioning? - Give examples of each stage  of commissioning in the healthcare setting.   2. Give an example of micro-allocation and  macro-allocation. Who usually makes these  decisions?   3. Outline the different ethical theories which could be  used to approach resource allocation.   4. List the advantages and disadvantages of QALYs  (quality-adjusted life years).   5. Give a brief summary of the main ethical issues regarding  organ transplants and resource allocation.   1. Summarize 3 ways in which sociology is applied to  medicine   2. List 4 assumptions which the biomedical model of  disease makes   3. Outline the observations made by the sociologist  Emile Durkheim about social integration and  suicide   4. Briefly define what is meant by social, cultural and  structural iatrogenesis   1. List the five stages of Illness according to Hannay  (1988).   2. Outline two issues which could result from self-  management of minor illnesses.   3. What are the five rights and two responsibilities of the  ‘sick role' according to Parsons (1951)?   4. Summarize the five aspects of patient-centered ness  according to Mead and Bower (2002).   1. Summarize the advantages and disadvantages of the  National Health Service in England   2. List the key advantages and disadvantages of a socialised  health service, an insurance based health service, and a  pluralistic health service   3. What are the characteristics of professionals according to  Carr- Saunders and Wilson (1933)?   4. Briefly discuss the challenges to setting up appropriate  healthcare in the community   1. Outline the 'materialist' explanation for the effect of  social inequality on health   3. Summarize the social causes that might explain some of  health inequalities between men and women.   1. Outline the epidemiological approach to the eradication  of a disease, using an appropriate example.   2. What is the difference between a meta-analysis, and  systematic review?   3. What are the Bradford-Hill (1965) criteria for  establishing a causal relationship in epidemiology?   4. What are the advantages and disadvantages of studying  routine data in healthcare research?   1. What is medical ethics and why is it an important topic  for medical students? - If you think it is not an important  topic, please give good reasons why doctors need not  have a grounding in medical ethics!   2. 'The Four Principles of Bioethics are the most widely  taught approach to medical ethics because they are  the best approach for use in the healthcare setting’.   Do you agree or disagree? - Discuss this statement,  comparing this approach to other ethical theories and  frameworks.   3. What is the difference between the civil and criminal  division of the law and how might this relate to the  healthcare setting?   4. Flow might the Articles of the European Convention on  Pluman Rights as stated in the Human Rights Act 1998,  affect the provision of medical treatment in England and  Wales?   1. What are the main ethical and legal grounds on which a  doctor should respect confidentiality? In what  circumstances should confidentiality nevertheless be  breached? - Provide explanations for your answers.   2. Are there any circumstances where it would be ethical  or lawful to lie to or withhold information from   a patient? - Discuss the issues involved with examples  if possible.   B. You note that one of the doctors in your team has  started to make mistakes at work and you suspect he  may have a substance misuse problem. What should  you do and what issues would you consider before  acting?   4. Should doctors have a right to conscientious objection in  certain circumstances?   5. What distinguishes ethical from unethical medical  research on human subjects? - Your answer should also  consider the kinds of things that a research ethics  committee might want to know before approving  medical research on human subjects.   1. What are the legal requirements for informed consent?  What type of legal case might arise if consent is not  present or inadequate?    2. Describe the key provisions of the Mental Capacity Act  2005 in relation to healthcare decisions.   or she should be able to refuse life-saving treatment’ -  Discuss.   4. Outline how you would approach a case of suspected  child abuse. - Your answer should include the main types  of abuse described, the legal provisions in such  circumstances and any ethical issues you might consider  relevant.   1. What are the ways in which ethics and the law define a  person? How is this relevant to healthcare decisions?   2. People should be able to exercise autonomy in terms of  when how and with whom they have a child. Discuss this  statement in the context of reproductive technologies.  Explain why you might agree or disagree with this  statement.   3. Discuss the ways in which a course of treatment might be  considered futile. How is the concept of futility relevant  to end-of-life decisions?   4. Should it be a criminal offence for a doctor to assist  the suicide of a patient? What ethical reasons do you  have for your answer? What are the main counter-  arguments to your position and how would you  respond to them?   5. How is death defined and how might this be relevant to  decision-making in health care?   1. Are there any particular ethical concerns regarding  healthcare commissioning? - Give examples where  possible.   2. What considerations might affect the allocation of  healthcare resources? - In your answer, include some of  the ethical theories which could be applied to rationing  decisions.   3. Organ transplantation is a waste of NHS resources -  discuss (explain why you agree or disagree with this  statement).   4. What are 'Quality-Adjusted Life Years' (QALYs)? - In  your answer include the main advantages and  disadvantages of using QALYs to guide healthcare  resource allocation.   5. How and why might a resource allocation decision be  challenged in the courts?   1. Giving examples from your sociology reading, describe  how the study of sociology could improve clinical  practice.   2. What are the strengths and weaknesses of the  biomedical model of illness? Discuss whether an  understanding of social phenomena is helpful or  unhelpful.   3. In what ways do social integration, support and life  events affect health? Illustrate your essay with examples  from your sociological reading.   4. Discuss lllich's (1978) concept of Iatrogenesis. Do you  think that this has valid points to make about the  effect of healthcare itself on illness? If so why? If not  why not?   1. Discuss the ‘Sick Role' as described by Parsons (1951). Is  this a relevant concept in modern medicine?   2. What is patient-centeredness and why is it important in  healthcare?   3. Using examples from your sociological reading, discuss  how conflict may arise in the doctor-patient relationship  and how it may be resolved.   4. How can a sociological understanding of death and  bereavement improve clinical practice?   1 . How were health services provided in the UK prior to the  National Health Service?    2. How has the UK National Health Service changed since  1948?   4. Discuss the origins of the medical profession in the UK.   2. “Women get sick but men die." Discuss this statement  with reference to gender and health inequalities.   3. How can a sociological understanding of migrant and  ethnic minority health improve your clinical practice?   4. What social factors may compound medical problems in  older people?   2. What are the advantages and disadvantages of the  different types of sociological research?   3. In what ways can we measure health and treatment  outcomes?   4. How has the pattern of disease changed over time? How  is this relevant in modern medicine?   2. Give an example of a clinical audit you could do,  identifying each stage of the audit.   8. C - Regardless of whether you know this specific fact,   the answer could be worked out - all the other  issues are regular daily issues for doctors.   9. B - Remember that even if this is done to benefit the   patient, it is by definition a form of negligence and  may invalidate consent entirely; all are listed by  the MPS as dishonest behaviours.   10. E - For example the parent of a young child.    21 . C - It is much more than a resource allocation    1 . Each of the following is an important  concept, theory or framework in  Medical Ethics and Law    2. The following legislation may in some  way relate to patient confidentiality  and disclosure of information    3. The following is a list of terms  associated with consent   2. F. Invalid advance directive. Advance directives must be  made by a person with capacity and must be specific.  They must not be as a result of coercion.   3. B. Valid consent. Consent is valid to avoid a charge of  trespass to the person but is arguably negligent in terms  of disclosing risks.    4. The following is a list of terms  associated with medically assisted  dying    5. The following is a list of terms  associated with an approach to  resource-allocation    6. The following is a list of terms  associated with sociology and disease    7. The following is a list of the stages of  dying from the Kubler-Ross (1 969) model    8. The following is a list of concepts  which have been used to explain the  position of older people within society    9. The following is a list of types of  healthcare study    10. The following is a list of terms  associated with public health  management    11. The following is a list of types  of research study    12. The following is a list of terms  associated with the process  of improvement in quality of  health care    Many of the concepts in this book can, to a lesser or greater  extent, occur in Objective Structured Clinical Examinations  (OSCES). It is likely that there will be an ethico-legal or  social component to a clinical scenario, though some  medical schools have put on OSCE stations that are more  overtly testing a knowledge of ethics and the law. OSCEs  are a rehearsal for real-life clinical encounters, and are  intended to provide some objective evidence to your  examiners that you can be a safe and professional doctor.  Examiners can usually tell when students have 'learned  some words' but do not really know what they mean or are  just 'making it up.' The following advice is intended as a  way to help you pass OSCES for the right reason - because  you have a better understanding- and not as a set of ready  answers.   • Even OSCEs with a communication-skills theme require  a sound medical knowledge   • Remember that you are not usually talking to another  doctor, avoid jargon and try and understand what they  want to know and what is important to them.   • Always remember to explore the patient's ideas, con-  cerns and expectations (if they are conscious!). And  remember that clinical colleagues have ideas, concerns  and expectations as well!   • Sometimes the knowledge being tested is less medical  and more legal. For example it is entirely fair to expect  medical students to know the circumstances in which an  autopsy is mandatory. It is also entirely fair to expect  students who have done paediatrics to know about  Gillick Competence and the Fraser Guidelines. Think  about what bits of guidance and the law a doctor might  be expected to come across - for example the Data  Protection Act, the Mental Capacity Act and the Mental  Health Act may well be relevant to doctors in the first  two years of practice in the UK. (Students in other  countries should think about the equivalent pieces of  legislation.)   • Remember that you are usually having a focussed con-  versation with another person and not just giving and  receiving facts. Talking to patients is not a science 'viva'  exam.   • The 'clerking' gradually gives way to more flexible dis-  cussion with patients as medical students progress  towards their final year. (However OSCEs increasingly  include communication skills from year 1.)   • Keep an eye out for instructions like, ‘Respond to the  patient's concerns.' This mirrors real life, as you progress  through medical school you will be increasingly be  expected to respond to concerns. You cannot respond if  you do not know what the concern is!    These are a few examples of ideas that  could form the basis of a clinical  examination station   1. You witness a doctor behaving in an unprofessional  way, or a way which risks harm to patients   2. A patient asks to discuss the care of an adult family  member, and asks to see the notes   5. A parent of a teenager would like to know if her  daughter is receiving contraception   6. A patient would like the latest and most expensive drug  with the fewest side-effects for their condition   7. You have been asked to assess a person who is  behaving strangely   8. A patient would like a copy of his notes and a letter  outlining his condition so he may obtain assisted suicide  abroad   9. A patient would like to discuss having an advance  directive   1 0. You are asked to discuss the need for an autopsy or the  possibility of a post mortem with relatives   11. A patient has been newly diagnosed with a chronic  disease - what do they want to know?   12. You are asked to talk to an elderly patient about her  discharge from the hospital   13. You are asked to talk to a patient whose condition is not  improving. You suspect he is not taking his medication   14. A patient has attended with a simple complaint but  does not seem to want to discuss it   15. You have just given a patient the wrong vaccination.  Discuss this with the patient    Some relevant ideas that may help you  improve your OSCE performance in the  above scenrarios   1 . Look up and read chapter 2 on ethics law and  professionalism and the sections on risk management,  complaints and errors in chapter 11.   4. Look up and read confidentiality, child protection,  Gillick competence and Fraser guidelines   5. Look up and read confidentiality, Gillick competence  and Fraser guidelines   7. Look up and read autonomy, mental health, mental  health act   10. Look up and read about the coroner, reasons why an  autopsy might be legally required   12. Look up and read the section on older people in the  chapter on health inequalities, and on the multi-  disciplinary team and care in the community in   13. Look up and read consent, compliance, concordance,  patient-centeredness, patient agenda   14. Look up and read sections on patient's agendas, and  stigma.   15. Look up and read the sections on risk management,  complaints and errors in chapter 1 1 .   Papanikitas, A., 2007. We. J. R. Soc. Med. 100, 436-437.  Available online at http://jrsm.rsmjoumals.com/content/  100/9/436. full.   (This short article discusses how medical students and doctors  can be more aware of the words that they use in the context  of OSCEs and consultations)   Washer, P„ 2009, Oxford Core Texts: Clinical Communication  Skills. Oxford University Press, Oxford. (This book has links  to online audio podcasts as well as numerous examples  of helpful and unhelpful language that students and  clinicians use).    Notes: As the subject of this book deals  with ethics, entries in the index have  been kept to a minimum under this  term. Users are advised to look for more  specific terms.   Abortion 50-52  consent 50  contraception vs. 47  legislation 50-51  mother-fetus conflict 51-52  pro-choice position 5 1  pro-life position 51   Aims of medicine, euthanasia 62  Airedale NHS Trusty. Bland (1993) 60-61  Alcoholics Anonymous 87  Alcohol use/abuse 120  Alternative and complementary  medicine 88-89   Bargaining, death 102  Basic care at end of life 60  Beauchamp, Tom 6  Beginning of life 47-69  Behaviour   health promotion 146/  social effects on health 120  Beneficence 6-7  ethical theories 7/  euthanasia 6 1  Bentham, leremy 3  Bereavement 104-105, 104/   Bolam v. Friern Hospital Management  Committee (1957) 10  Bolitho v. City and Hackney Health  Authority (1998) 10  Boundary violations 23-26  Bradford Hill Criteria, causal association  140, 140/   Categorical imperative 4  Causal association 139-140  Causation, duty of care breach 10  Causative agents, communicable  diseases 149   CDR (clinical decision rule) 155  CEMACH (Confidential Enquiry into  Maternal and Child Health) 162  Census data, epidemiology 143  Cerebrovascular disease, ethnic  minorities 128   Childress, James 6  Chronic illness 99-101  awareness 100  economic problems 100  ethnic minorities 128  family relations 99  identity 99  information 100  living with 100-101  medical regime problems 100  self-esteem 99  sharing 100  uncertainty 99  unemployment 100  CHS (community health services),  history of 107 
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