490 \200 e r a c y r a m Guidelines are seen as friendly, if \202 exible, allowing for the frailties of clinical s cience as it meets bedside reality; they can also be interactive, if computer programming i s skillful. Protocols, particularly if they have been handed down from some supposedly high er authority, have a reputation for being strict, sin- ister, and stultifying instruments f or thought control. How well do these stereo- types stand up in practice? It is known that doctors working in highly regulated environments with strict protocols perform suboptimally . 97 It is also worth not- ing that very few laws de \201 ne their own exceptions. You cou ld say that patients have a right to be asked if they want to participate in a protocol, an d if so, that it should be done properly. But what if it is the child \200\231s birthday to day, and he really does not want to have his \201 nger pricked for a glucose test, but he is most willing to go along with all other aspects of a protocol? If you are \202 exible , the price may be ketoacidosis after the party. Herein lies the paradox of protocols. They are designed to remove the many indefensible inconsistencies found in clinical medicine, y et protocols depend on the individual doctor \200\231s own \202 air and instinctive judgm ent so that they are applied in the best way. i r P The best approach is to welcome good protocols, and develop meta-protocols to be answered w henever (or almost whenever) such protocols are not adhered to. Why did you not adhere to t he protocol? Please tick the appropriate box: \235\222 My own convenience, eg if too many other more important tasks to do. \235\222 My patient \200\231s preference (well-informed or otherwise). \235\222 Evidence is shaky and may not apply to my practice population. \235\222 Ineffi cient use of resources, eg scarce consultations are used up in follow-up. \235\222 My instinct warned me not to apply the protocol in this case.1 To get round the pr oblems of non-implementation of guidelines, some NHS primary care trusts send in visits fro m pharmaceutical advisers who have trained in outreach visiting (it is unfair to call them thought-police). But when this has been evaluated in randomized trials, no impact could be detected. 98 Can we square guidelines & targets with patient-centered care? (p478) Answer: No; discussing this issue with purveyors of guidelines is a good way reveal the hidden agen das described above. Point out that leading authorities are now saying patients must decide their own target BP, HbA1c, etc. 99 1 Understandably, many GPs don \200\231t follow protocols despite high awareness of them: o ther reasons include the fact that precise targets (eg for BP control) are always arbitrary , and should allow for some variation. \200\22599 491 The placebo and Hawthorne eff ects Placebo eff ects are very powerful and are important not just in research, but also in demonstrating to us how our demeanor may be just as importan t as the drugs we give. Both doctors and patients are susceptible to placebo ef- fects \200 \224and unintentionally we use the placebo eff ect every day \200\224as so few of our thera pies are validated for the exact individual patient in front of us. In one placebo-controll ed study of antihypertensives the partners of the enthu- siastic doctor broke the code, and told him that his experimental treatment appeared similar to existing treatments without t elling him who was having the active drug and who was having the placebo. \200\207From thi s point, there was an immediate, marked increase in BP in both groups, although the diff er ence between the drug and the placebo was maintained. 100,101 \200\207Our beliefs and our behavior sometimes matter more than our drugs. What is the mechanism of the placebo eff ect ? Psychological: Expec- tancy, anxiety reduction, and Pavlovian conditioning may operate. P sycho- somatic linkages: Endorphins, catecholamines, cortisol, and psychoneuroim- mumunolog y play a part. 102 Functional neuroanatomy: Placebos have real eff ects on brain and body: \200\207they are not just response biases. 103 The nucleus accumbens (NAC), a CNS region i nvolved in reward expectation, may mediate placebo responses. Dopamine release is seen duri ng placebo administration, and is related to its anticipated eff ects. Individual variation s in NAC response to reward expectation account for 28% of the variance in the formation of placebo analgesia. 104 Placebo in Latin means I will please e r a c y r a m i r P Don \200\231t conclude that we should give placebos to all our patients. This book is found ed on the idea that we must be honest and straightforward with patients. Nevertheless, it m ay be unwise to share too many doubts: one GP randomly as- signed his consulting style in t hose with apparently minor illness to a \200\230positive encounter \200\231 or a \200\230 negative encounter \200\231. In the former, patients were given a di- agnosis and told they would be better in a few days; the latter group were told that it was not certain what the matter was. \205\223 of patients having negative en- counters got better in 2 weeks, but over \205\224 of the positive group did so. We conclude that in medicine context matters, and we must all take steps to optimize contex t and expectation in holistic, positive, and optimistic ways. 103 Mandatory placebos? Some practitioners use evidence-based medicine (EBM) as a rationale for using placebos \200\224i ntentionally. The argument goes like this: if there isn \200\231t a gold-standard treatment for the condition, and if EBM shows that a placebo has above-baseline eff ects, and if a p lacebo response wouldn \200\231t mask serious pathology, and if the patient gives informed consent and is told about other options, then a placebo is warranted \200\224or even man- d ated. 105 There is one problem with this neat argument. The patient may well need to know t hat he or she has a chance of having an active drug for the placebo eff ect to work. Nocebo s Pharmacists often \200\230lea \202 et \200\231 customers with long lists of their drugs \200\231 side eff ects, that, like voodoo death, may be self-ful \201 lling prophesies. W e often underplay side eff ects like impotence on the grounds that in such a sensitive area , the mere mention of impotence might bring it about. Too paternalistic? The Hawthorne eff ect What is the optimal level of lighting for making circuit boards? Whatever level the exp erimenter tried (in the Hawthorne plant near Chicago in the 1930s), there was an increase i n productivity, even at very low levels, showing that the act of doing an experiment change s people \200\231s behavior. Special attention leads to special results. Similarly, in a tr ial of Ginkgo biloba in dementia, the placebo arm had two levels of follow-up, intensive an d minimal: patients showed better cognitive function in the former group. 106 We conclude t hat because of these eff ects, generalizing from research is fraught with danger. Bedside manners in a multicultural world \200\207Your patient is assessing you as much as you are assessing your patient. We come to this enterprise in a spirit of humility. There a re no culturally neutral or coherent encounters: all cultures have oddities and inconsisten cies. Use cross- cultural encounters as a metaphor for exploring your own prejudices, fears , and ideas of selfhood, 107 and come to accept that mastery here is counter-produc- tive, for mastery implies a supremacy which ultimately sti \202 es dialog. Eastern manners \200 \207Do not expect an African-Asian person to answer inti- mate questions, without \201 rs t explaining about con \201 dentiality. \200 Avoid prolonged eye contact and loud speech (indicates lack of respect). \200 Control your gesticulations (the \200\230thumbs up \200\231 sign is considered rude). \200 A psychiatric referral may destroy eligibility fo r marriage. Sikh names Some Sikhs have no family name. Singh and Kaur indicate only sex and religion, so that extra identi \201 cation is needed on the notes. Muslims (The largest n on-Christian UK sect) Sometimes the last name is not a family name, and the 1st name is not the personal name. There may be no shared family name. The 1st name is often religious (eg Mohammed). Common female 2nd names (eg Banu, Begum, Bi, Bibi, and Sultana) are of as littl e help in identi \201 - cation as the title \200\230Ms \200\231. Writing the father \200 \231s name can give extra identi \201 cation. 108 \200 Shoes are to be taken off before entering the house (for any purpose). \200 Some Muslims do not shake hands with the oppos ite sex after puberty. \200 Most Muslims do not drink alcohol (so do not off er tonics). \200 Some Muslims may refuse to take their medication in Ramadan. If prescrib- ing drugs once or twice daily (before sunrise; after sunset) is not OK, explain the disease; accordin g to Islamic rules, ill people must not fast. 492 e r a c y r a m i r P Do not off er pork insulin to Muslims. Muslims and death: Religious observance requires pro mpt burial, not crema- tion. Washing and shrouding is an important ceremony traditionally d one by elders of the same sex and only relatives and friends may do it \200 The dead body is sacred and never abandoned by relatives, so it is rare for un- dertakers to be involved . Bereavement lasts for 3 \200\2237 days (prayers in the home may be said almost continuous ly). In some cultures, wives may stay at home for several weeks after death of a spouse and they cannot re-marry for up to 3 \200\2234 months. Some cultures have restrictions for transplantation or autopsy. How to avoid off ending Wes tern manners Western manners expect \200\230please \200\231, \200\230thank you \200\231, \200\230after you \200\231, and \200\230I \200\231d love to \200 \200\231 rather than \200\230I don \200\231t mind if I do \200 \200\231 West- erners are notoriously sensitive to gaze and mutual gaze: not enough, and they think you are shifty; too much, and you are making unwelcome advances. The same goes with interpersonal distance: too close, and invasi on is threatened. Clinical Centile charts are diff erent (p181). Bilateral cervical/inguina l lymphad- enopathy may be normal in Asian and African children (but remember TB). \200 B MI >23 carries \200\200risk in Asian (vs Caucasian) men; give diet etc advice earlier. \200 Bangladeshis are at greatest risk of heart disease, then Pakistanis, then Indians. \200 Hypertension (and renal failure) is more prevalent in African-Caribbeans 109 who resp ond better to thiazides and Ca2+ channel blockers than to ACE-i/A2A. \200 Most heart dise ase risk assessment tools underestimate risk in south Asians. \200 Genetic disease preval ence \200\200 \200\224for example sickle-cell anemia (eg in Africans and West Indians); hem oglobin E disease (eg in Chinese). Unusual malignancies (esophagus in Japan, tongue from betel nuts). \200 The length of ges tation for Black infants averages 9 days shorter than that of White infants and they weigh 180 \200\223240g less than white infants at birth. How- ever, at a similar gestational dura tion, Black infants are more mature than White infants and related to this increased maturi ty, premature Black infants also have a better survival rate than premature White infants. 493 Hindu names and some other customs \200 First names (eg Lalita) are often male and female , but middle names (eg Devi) always denote sex and they are often written together (Lalitad evi). \200 A Hindu is likely to give only his \201 rst 2 names, withholding his family name, to be polite. This can cause great confusion in registration. Some have dietary restrictions (no beef/veal); some are strict vegetarians. Language, inter pretation, and health 100 million people live outside their country of birth. All too often interpreters, if available, are only on hand during offi ce hours. Friends and relatives m ay be available, but con \201 dentiality issues are important. The interpreter \200\231s o wn cultural prejudices may distort your questions, and even make them vacuous. 110 When a c hild interprets for his mother \200\231s or father \200\231s mortal illness, many other unk nowable issues are raised. 111 Alternatives include telephone interpretation (eg with a han ds-off conference phone). Although non-verbal signs are lost, there may be advantages as so me patients may say things to a phone which they would be unhappy to say face-to-face. 112 Ask for these services from Health Authorities/Primary Care Trusts \200\224and then the ser vices are more likely to be in place, and the wheels well oiled when the real emergency ari ses. The Phelan \200\223Parkman \200\230rules \200\231 for interviewing with an interprete r \200 Address patient in the second person; talk directly to your patient. \200 Keep c ontrol of the consultation; make full use of written material. 113 \200 Pause often, look ing for non-verbal clues signaling misunderstanding. \200 Be attentive when patient respo nds; check your patient \200\231s understanding. Advice to consider before a Hajj journey t o Mecca 114 Hajj is a 5-day Muslim pilgrimage to Mecca to mark Abraham \200\231s readiness to sacri \201 ce Ishmael. Its date varies. Pilgrims renew their faith shoulder to shoul- d er, as a sacred duty, with 2 million Muslims from all over the world. 20,000 travel from th e UK, and another 29,000 also make a lesser pilgrimage to Mecca called Umrah. Hajj is physi cally taxing (but often exhilarating) involving walk- ing and camping in the desert with li ttle sanitation. Hajj is not required for those in poor health, and your role may be to adv ise on this. \200 Meningococcal vaccination is mandatory (2 doses ACWY-VAX conjugate me ningitis vaccination, 3 months apart). Immunity is thought to last 3 years. Hepatitis A, in \202 uenza, and malaria prophylaxis are important. 115 Con- sider also polio, typhoid and diphtheria vaccines and hepatitis B vaccines. \200 Women should not menstruate during Ha jj. Menstrual delay by nore- e r a c y r a m i r P thisterone (p248) or contraceptive pill may be requested. Sun stroke and heat exhaustion are major hazards. Advise acclimatization (so arrive 1 week before Hajj to enable optimum sweating), drink 5L/day (with up to half a teaspoonful of sal t/L). Keep a bottle with you at all times. Take an umbrella (preferably white) as sun shade . Avoid travel in middle of day and on open top busses. Use liberal sun block if fair skinn ed. Much walking is needed so advise comfortable shoes and carrying a shoe bag to carry them in when removed for prayers (so as not to lose them). Sand is so hot that barefoot walking ma y cause sole burns. Male head-shaving by shared razor blades risks blood-borne infections. Advise using new razor blades (hair trimming may be acceptable). Take an adequate supply of medications and a list of them in generic names. Also take simple analgesics. Most injuries are to feet. Being crushed by crowds is a danger if laminar \202 ow becomes \200\230stop-and-go \200 \231 then turbulent. 116 Try avoiding the most popular times (eg travel at night). \200 T emporary ITUs deal with 140 patients/Hajj: heart disease (63%); infections (26%). 10% of these patients die. 30% need referral to tertiary centers. 117 \200 Post-Hajj diagnoses t o consider: meningitis, hepatitis, hydatid, TB, malaria. Health education: what \200\231s the point? Health education presumes that people are ratio nal and want to promote their own survival. It begs the question: what should we live for? Unless an individual has an optimistic answer, health education will fail. For 60% of UK pe ople, death is an attractive option compared with doing more exercise. 118 Alcohol and drug s \200\224anything that achieves oblivion as soon as possible \200\224is an ever more popul ar approach to life, despite years of health education. So soci- ety needs to ask itself 2 questions: are we making it easy for people to make wise health choices \200\224and, more i mportantly, are we making it easy for peo- ple to \201 nd something worth living for? In city after city, country after coun- try, the answer is No and No. Britain is the worst pla ce to live in the developed world, based on UNICEF measures of childhood wellbeing, so ther e is a long way to go before we get to the starting line where most people are amenable to health education. With this proviso, the following may make (a little) sense. What is educa tion? \200\224 \201 ve partial answers 1 Education is the way we pass down, from one gener ation to the next, soci- ety \200\231s values, attitudes, and culture. Thus crime, duplicit y, double standards (and, on a good day, idealism) are perpetuated in a kind of cultural in herit- ance. 494 e r a c 2 Education is an activity carried out on ignoramuses by people who assume y r a m they know best 119 (but who should know better).We don \200\231t need no education \200 Pink Floyd Another brick in the wall 3 Education is about changing people. It ends up implying \200\234mend your ways \200 or else \200\235. In some countries, non-vaccination leads to imprisonment. 120 i r P 4 Education performed on one mind by another, under duress, is indoctrina- tion. This is a problem with some forms of religious education. 5 Education is self-education: the method by which we touch the great minds of the dead and come to know we are not alone in our confusions and ques- tionings: the only remedy for th e spiral of disconnectedness \201 gured on p99. Health education messages These must be s peci \201 c and direct, eg in get- ting people to sign on for help for drinking problems, it is of little use saying \200\234If you don \200\231t stop drinking you \200\231ll get t hese diseases \200 \200\235 ( 25% respond); say- ing \200\234Signing on is good for you because of these bene \201 ts \200 \200\235 ( 50% respond); saying \200\234If you don \200\231t sign here, you \200\231ve had it \200\235 brings the biggest response. Optimum me ssages must be speci \201 c about dates, times, and places of help. Well-chosen images and a degree of \200\230fear \200\231 in the message helps: in enlisting patients for tetanus vaccine a \200\230low fear \200\231 message gets a 30% response, while more fear can doub le this. Graphic images depicting the eff ects of smoking are mandatory on UK cigarette pac kets (evidence is rather \202 imsy, so far) 121 and it is possible that too high a level of fear is counter-productive. A gruesome \201 lm about the worst eff ects of caries prod uces petri \201 ed immobility, not self- help or trips to dentists. A better approach is p rofessional teaching. Com- pared with parents, teacher-based oral health education has a be tter eff ect on oral health (at least in middle-school Chinese students). 122 Changing atti tudes The following paradigm holds sway: knowledge \200\203attitudes \200\203 intentions \200\203behavior. As Chinese thought reformers knew so well, attitude changes depend on a h igh level of emotional involvement. In questions of belief, as in so many other questions, emotion trumps reason \200\230people don \200\231t demand that a thing be reasonable if th eir emotions are touched. Lovers aren \200\231t reasonable, are they? \200\231Graham Green p115 Only resort to applying reason to The End of the Affair attitudes if emotions are too hot to handle. NB: the arrows in the model above may be reversed: if our behavior is incons istent with our ideas (cognitive dis- sonance), it is often our ideas, not our behavior whi ch change. Objective feedback Giving standard written advice about physical activity helps promote exercise. But to make big strides, it helps to give quanti \201 able feedback \200 \224ie a pedometer. 123 This sort of feedback also improves quality of life. 495 Health education: who should do it? Traditional approaches Lea \202 ets and multimedia pro grams can slightly increase knowledge, eg of breast self-examination (which is associated w ith smaller tumors and less spread in those presenting with breast cancer). But eff ects ar e often disappointing. Health education of \201 cers (eg from a nursing, teaching, or heal th-visiting background) may do better when teamed up with a graphic artist to provide emoti onally charged, slick messages. Peer-to-peer methods Lea \202 ets are authoritative, but t his authority is itself a problem. Risk-takers are unlikely to listen to the prim and prope r. So peer- education has been developed as a tool to reach certain groups, and evidence su ggests that this is a promising way forward. 124 Peers may be better than authority \201 gures (eg in stop smoking messages). A message about breast feed- ing will come best from a mother. Dramas with HIV and health issues reaching millions, eg Soul City in South Africa is another way of side-stepping these authority issues. 125 e r a c y r a m i r P However, if the issues are not well understood, authority may be helpful (the BMJ is more e ff ective than Woman \200\231s Own in suggesting to mothers that a new formulation of aspir in should not be taken). Health promotion by nurses Nurses are experts in this \201 eld, but even they are not very eff ective in reducing coronary risk (without recourse to drugs) . In the community-based OXCHECK randomized trial (N = 6124, aged 35 \200\22364) serum chol esterol fell by only 0.08 \200\2230.2mmol/L \200\224and there was no signi \201 cant diff er- ence in rates of giving up smoking or in body mass index. Systolic (and diastolic) BP f ell by 2.5% in the intervention group receiving dietary and lifestyle advice. Blanket heal th promotion may not be a complete waste of resources, but it is expensive for rather limit ed gains. Similar results were obtained by the Family Heart Study Group. Depending on the a ssumed duration of risk reduction, the program cost per discounted life year gained ranges from 34,800 if inter- ventional bene \201 ts last for 1 year, to 1500 for 20-year dura tion. Corresponding OXCHECK \201 gures are 29,300 and 900. These \201 gures exclude broader long-term cost eff ects other than coronary mortality. 126 The conclusion may be that energies are best spent on those with highest risk as determined in routine consultations by a few \200\230simple questions \200\231 about smok- ing, fami ly history, etc. One trouble is that these questions are not always innoc- uous. It is not a good thing to bring up \200\230strokes and heart attacks in the family \200\231 in, for example, consultations about tension headaches. OXCHECK is not the last word \200\224and th ere is evidence that if lipid-lowering drugs were used very much more extensively, choleste rol (and cardiac events) could fall by 30%. 127 The Internet and health education In well-connected European populations, 60% of adults use the Internet for health information \200\224more in these subgroups: high education, women , people with poor health, people with children. 25% experience feelings of reassurance or relief after having read about an illness on the Internet (3-fold higher than those experie ncing concern and anxiety). 3% say that they have changed their medication after reading in formation on the Internet \200\224and this is done without prior contact with their doctor. 128 A common occurrence is for a GP who knows little about a rare disease to be confronted by a patient with with reams of internet print-outs or who knows in great detail about a diseas e he or she may or may not have. What do you do? The key lies in the the sentence above, in the word \200\230confront \200\231. Don \200\231t let it happen! Sit side-by-side with yo ur patient as if collaborating on a joint enter- prise. The product of this collaboration s hould be health (including a healthy relationship with possibly fatal symptoms) and a reduc tion in obsessive searching and and an acceptance that some uncertainty is inevitable. Patient groups Mother-and-baby groups These are best set up in the \201 rst weeks after t he birth of four or \201 ve babies. The health visitor encourages the group to form. A do ctor may attend the group \200\224regularly to start with, then less often as the group bec omes self-suffi cient. After a year or two a large practice will have a number of groups ru nning. One aim is to increase motivation (through discus- sion) to enhance the uptake of he alth education and preventative medicine. Another aim is to ease the stresses involved in b ecoming a responsible parent by providing a social support network. A mother, noting for th e \201 rst time her beautiful baby \200\231s ability to hate, to destroy, and to hurt, ma y \201 nd it a relief to know that other babies are much the same. Patient participation groups (PPGs) \200\207Working with your patients is as im- portant as working for them. Th e health care team meets with patients \200\231 rep- resentatives to discuss some of the fo llowing: \200 Dealing with complaints (less adversarial than with formal methods \200\224 and 496 independent of the NHS and doctors \200\224hence reasonably credible). Harmonizing the \200\230consumer \200\231s \200\231 and the \200\230provider \200\231s \200\231 aims. \200 Feedback to aid planning, implementation, and evaluation of services. \200 Identifying unmet needs (eg among the isolated elderly). \200 Improving links bet ween the practice and other helpers. \200 Health promotion in the light of local beliefs (p472). \200 Pressurizing government institutions over inadequate services. Owing to lack of interest, or to there being no clear leader or task, up to 25% of groups close over tim e. The complaint that participation mechanisms lead to tokenism (ie the democratic ideal ha s been exercised, but what has been created is just a platform for validating the status qu o) does not turn out to be true if a group has power over funds which it has raised. Here, our expe- rience is that analysis may be penetrating and decision swift, in a way that make s even the best-run health authorities/Trusts look pedestrian. e r a c y r a m i r P Another role for PPGs is to have dialogs with primary care organizations (PCOs) on proposed changes to services \200\224eg whether practices are to be amal- gamated or services withd rawn or replaced by provision via non-NHS private companies. PCOs have a statutory responsi bility to consult, and patient partici- pation groups have a valid role in bringing PCOs to account. 129 The Patients \200\231 Association This group represents and furthers the inte rests of patients by giving assistance, advice, and information. It aims to promote underst anding between patients and the medical world. Publications: Patient Voice and a directory of self-help organizations. See also the Contact-a-Fami- ly Directory: cafamily.org.uk/gap. html Self-help organizations Many thousands of these groups have been set up worldwide for suff erers of speci \201 c rare or common diseases. They off er in- formation, companionsh ip, comfort, and a lifeline to patients and their fami- lies, eg for sharing techniques and self-remedies. A danger is that they share nightmares as well, for example, unnecessarily graphic descriptions of their children dying of cystic \201 brosis may be spread, causing unneeded despond- ency. They raise funds for research, providing a \200\230welcome altern ative to the expensive services of professionals \200\231. Full directories exist (see abov e). Groups as a way out of passive dependency If people learn in groups they take more cont rol of their lives and they are more optimistic about being able to change things in their lives (such as their weight); self-esteem improves \200\224 and also objective measures of health (such as HbA1c in diabetics, as we have already mentioned). 90N=120 497 Advice for an NHS patient who wishes to complain \200 Who should I complain to? Tell someo ne close to the cause of your com- plaint, eg a doctor, nurse, receptionist, or practice ma nager as soon as pos- sible (within 6 months of the incident, or within 6 months of discove ring that you have a problem). It is often possible to sort out the problem at once. This i s called Local Resolution. 1 You can phone or write to the practice complaints offi cer or to the individual concerned. If Local Resolution fails, you may ask the Health Care Commiss ion to consider the complaint. Such a request must be made within 2 months (or as soon as p racticable) following any response provided by the practice. GP out-of-hours-service: Compl ain to your Primary Care Organization (PCO) or your own GP. If your complaint is about avai lability or organization of health care services, contact the Complaints Offi cer of your l ocal PCO. NB: every NHS trust/PCO in England has a Patient Advice and Liaison Service (PALS ) which provides a named person to whom service us- ers can turn for help and support, eg: \200 Information \200 Listening \200 Messenger (passing on information from service u sers to staff ) \200 Go-between (passing information forward and back) \200 Supporter ( helping service users to present their own views) \200 Mediator (when there are disputes) . \200 Resource mobilizer. 130 (Although we welcome an alternative to adversarial approac hes, PALS tends to be underused, and is not independent). 131 How quickly will the complain t be dealed with? Within 2 working days is the aim. For written complaints and cases where more detailed investigation is required, your complaint will be acknowledged in writing wit hin 3 working days and the aim is to respond fully in 20 working days. What do I do if I am unhappy with the reply? You may request an Independ- ent Review. You must ask for this wit hin 28 calendar days from the date of the letter responding to your complaint. You will be asked to write a letter to the Convener of the NHS Trust responsible for the service saying why you are still dissatis \201 ed. You will be advised of the Convener \200\231s decisio n within 20 working days of your request (10 working days if about GPs, chemists, or optici ans). e r a c y r a m i r P Should an Independent Review Panel be set up, this will consist of the Con- vener, an Indep endent Lay Chairperson, and one other person nominated by the NHS Trust. The Panel will inv estigate the complaint and talk to everyone involved, seeking the specialist advice it need s. You will then be sent a report, including the Panel \200\231s conclusions. What do I do if I am still unhappy? You may request an investigation by the Health Service Commissioner (ombudsman) who is independent of the NHS and the Government. NB: the General Medical Counc il can be involved with a complaint whether or not it relates to an NHS patient. Clinical g overnance and quality improvement Complaint systems are only a part of clinical governance, a system which links continuing professional development, multidisciplinary learning, audi t, risk management, and critical incident reporting. It is a \200\230framework through whi ch the NHS is accountable for continuously improving the quality and safeguarding high stan dards of care by creating an environment in which excellence will \202 ourish \200\231. T he sequence is: de \201 ning quality \200\203assuring accountability \200\203improving qua lity. 132 It is one mechanism by which the Commission for Health Improvement (CHI) operates. Its area s of priority are partly set by the National Institute for Health and Clinical Excellence ( NICE) and health improvement programs (HImP). 1 It is the practice manager \200\231s duty to log each complaint with its outcome, to ackn owledge written com- plaints within 3 days, and to send a copy of the Practice \200\231s Co mplaints Procedure lea \202 et. She ensures that the internal investigation takes \211 10 days (if longer, she must give reasons). She will take advice from any relevant medical de fense organizations. Dying at home 498 \200 Don \200\231t touch me! Don \200\231t question me! Don \200\231t speak to me! Stay with me! Estragon; Wait- The UK death rate is 12 : 1000/yr, or 30 deaths/GP/ yr. 65% die in hospi tal, 10% die in hospices, public places, or on the street, and 25% die at home. Of these de aths at home over half will be sudden. In the remainder, the GP and the palliative care tea m has a central role to play in enabling a digni \201 ed death in the way the patient choo ses. Pain relief and symp- tom control are the central preoccupations of death in hospices, where death has already been somewhat medicalized, but in those who choose to die at home there often runs a \201 erce streak of independence, so that their main aim is to carry o n with the activities of normal living, come what may. This may cause distress to relatives who feel that the dying person is put- ting up with unnecessary pain. An open discussion i s often helpful in harmoniz- ing the family \200\231s aims. A key step is to \201 nd out what a patient wants \200\224and then to enable him to do it. Be aware that aims change ove r time. The next step is to \201 nd out about his hopes and fears and how they interact w ith those of the family. Is your patient dying? This is a key question. Failure to ask it, and to discuss with the mulidisciplinary palliative care team, may consign your patient to a painful unplanned death. Break this question into 6 parts: 1 Is there a fatal disease tha t is advancing? Check histology; any rising LFTs etc? 2 Is the patient \200\231s response w eakening? Comatose? Obtunded? Cachexia? Un- responsive? Unable to swallow? Labored breathin g? Assess over time (min- utes, hours or days). Don \200\231t base decisions on a single sn apshot. ing for Godot Helping agencies \200 Family \200 Community nurse \200 Hospice/night nurses \200 Fr iends/neighbors \200 GP/health visitor \200 Pain clinic \200 CRUSE (self-help group) e r a c y r a m i r P 3 Have reversible causes been \201 xed? (eg drug overdose Ca2+, OHCM p690). 4 Is he in \200\230do not resuscitate \200\231 territory? Dialog (family & patient) is wise. This helps stop inappropriate monitoring, such as blood glucose tests. 5 What does your instinct say? Spend time with the dying to hone our instincts. 6 What do o ther members of the palliative care team (and the family) think? Pain See p500. Morphine is the standard choice. Fentanyl has a role (good in renal failure; doses don \200\231t accum ulate). Skin patches last 72h. It may cause less sedation and constipation than morphine. T rans-mucosal lozenge forms exist. 133 Bereavement is the process of adapting to a loss whic h is causing sorrow. When trying to help bereaved people bear in mind where they are on Wor den \200\231s journey: 1 Numbness and denial until the fact of loss is accepted 2 Experienc - ing grief, yearning, and pain1 ( somatization) 134 3 Adapting to a new environ- ment wi thout the deceased 4 Redirecting the positive feelings towards the deceased in building a b righter future. It is often tempting to try and \200\230do some- thing \200\231 by giving psychotropics, but it is known that most bereaved people do not want this, and there is no evidence that drugs reduce problems. Empathy and helping the patient to shed tears is proba bly the most valuable approach, especially when losses are covert or hard to acknowledge. C ounseling after bereavement is eff ective. 135 After bereavement, risk of death in spouses rises in the 1st 6 months (men) or in the 2nd year (women). Men and younger bereaved are at greatest risk. It is not known whether this is due to shared unfavorable environments or t o psychological causes (eg mediated by the immune system). The main causes of death are vas cular, cancer, accidents, and suicide. 136 1 \200\230There is in this world in which everything wears out, everything perishes, one t hing that crumbles into dust, that destroys itself still more completely, leaving behind st ill fewer traces of itself than Beauty: namely Grief \200\231. 137 M Proust 1925 Albertine Disparue. NB: Proust \200\231s view is clear enough for grief surviving down generations \200\224which it does not. But what of one person \200\231s grief? Surely this can last a l ifetime, and Proust is wrong? No: we must assume that Proust had in mind an image from G r ard de Nerval (p397, the man with the pet lobster) who describes grief as being carved into us, not like lettering on stone, which may be worn away by time, but like those initials w e carve into the bark of a living tree. As the tree grows, the lettering sinks ever deeper, so that it seems to disappear, but really it has been embodied (Richard Holmes on G rard de Nerval in Footsteps 1996 HarperCollins, p222). Activities which we should try to avoid 138 \200 Distancing tactics: \200\234Everyone fe els upset when there is bad news, but you \200\231ll 499 soon get used to it. \200\235 False reassurance: \200\234I am sure you will feel better; we have good antiemet- ics these days. \200\235 Selective attention: \200\234What is going to happen to me? I \200\231m beginning to think I \200\231m not going to get better this time. The pain in my hip is getting worse. \200 \235 Doctor: \200\234Tell me more about your hip. \200\235 Breaking bad news Bad news is any information that drastically alters a patient \200\231s v iew of their future for the worse. Patients have a right to such knowledge, but not a duty to receive it, so negotiation is needed to agree the type of information and the amount the y want to hear at any moment. The advantages of patients being aware of bad news are: \200 It helps maintain trust in those caring for them. Trust is what the bedside manner is all about. \200\234Trust is necessary precisely where we cannot be cer- tain. If we had certa inty, we wouldn \200\231t need to trust. \200\235 Onora O \200\231Neill Reith lecture \200 To reduce uncertainty. \200 To prevent inappropriate hope. \200 To allow appropriate adjustment. \200 To prevent a conspiracy of silence. The central activities in the breaki ng of bad news are:139 e r a c y r a m i r P 1 Preparation \200\224choose a quiet place where you will not be disturbed. 2 Find out what the patient already knows or surmises. 3 Find out how much the person wants to know. You c an be surprisingly direct about this. \200\234Are you the sort of person who, if anything were amiss, would want to know all the details? \200\235 4 Fire a warning shot. \200\234I am afraid I have bad news. \200\235 5 Allow denial. 6 Exp lain (if requested). Share information about diagnosis, treatments, prognosis, and speci \201 cally list supporting people (eg nurses) and institu- tions (eg hospices). Ask \200 \234Is there anything else you want me to explain? \200\235. 7 Listen to concerns. 8 Recognize and encourage ventilation of the patient \200\231s feelin gs. 9 Summarize and make a plan. 10 Off er availability. The most important thing here is t o leave the patient with the strong impression that, come what may, you are with him or her whatever, and that this unwritten contract will not be broken. Useful agents in terminal care1 Useful agents: 1) GI problems Diarrhea (post radiation): Lo w-residue diet. Constipation: Co-danthramer capsules or liquid bisacodyl 5 \200\22310mg at night. Cachexia: Prednisolone 15 \200\22330mg/day or dexamethasone 2 \200\2234mg/day PO may help by \200\200 appetite. Gastric irritation eg associated with gastric carcinoma \200\224proton pump inhibit- ors (omeprazole 20mg/24h PO) or H2 antagonists (eg ranitidine 150mg/12h PO). 500