Explanation of cause and planned treatment empowers the patient and keeps expectations realistic Treatment involves correcting what can be corrected (eg treating oral candida that is contr ibuting to anorexia), counseling to help patients accept the limitations imposed by the dis ease (eg a patient with COPD may never be able to walk in the garden, but supplying a wheel chair will allow them to be taken), and drugs to control symptoms Treatment is planned for each individual with careful attention to detail. Effects are moni tored closely, and treatment discontinued if ineffective PALLIATIVE CARE 643 At the very end \200 Basic care should always be continued (warmth, comfort, shelter, freedom from pain, cleanliness, symptom control, offer of oral nutrition, and hydration) \200\230Arti \201 cial \200\231 nutrition and hydration (ie that which bypasses swallowin g) is considered by many to be a treatment, and as such may be withheld Simplify medications. Use subcutaneous routes where appropriate \200 Communication with t he patient and family becomes even more important \200\224 continue regular visits, even if there is no apparent change Ask nurses and family about concerns they have (eg pain on turning) \200 Enlist help from specialist palliative care teams if symptom control is dif \201 cult A proactive, positive approach at this time can transform the experience of losing a relative The principle of double effect Sometimes treatments given to relieve symptoms can worsen the underlying disease, eg opiate s given for pain also cause respiratory depression. It is not a duty of the physician to prolong life at all costs. The British Medical Associa tion states: \200\230A single act having two possible foreseen effects, one good and one h armful, it is not always morally prohibited if the harmful effect is not intended. \200\231 In other words, if the primary aim of the morphine is to relieve pain, and a secondary (fo reseen) consequence of this is respiratory depression and death, then the primary aim justi \201 es the secondary consequence. Good communication with family and other members of the team ensures that everyone understa nds the rationale behind a treatment plan. The Liverpool Care Pathway for the Dying Patient (LCP) is used increasingly in the UK. It l ays out systematically the elements of care that may form part of best quality care of a pa tient in the last hours or few days of life. Such a pathway may be appropriate when the MDT (often comprising an experienced nurse and d octor) is agreed that a patient will inevitably die in the near future (ie that reversible causes have been excluded). Where there is doubt, a second opinion is often helpful. 644 CHAPTER 26 Death and dying Symptom control in the terminally ill 2Is delivered usually by general primary and secondar y care teams, not by palliative care specialists. Pain \200 Use the analgesia ladder, starting with non-opioids (paracetamol, NSAIDs) \200 Next, add weak opioids (codeine, dihydrocodeine, tramadol); escalate the dose then replac e with strong opioids (eg morphine slow release). Give regularly and treat all side effects (nausea, constipation) Aim to give orally if possible, but consider subcutaneous bolus/infusion, transdermal or rectal routes if necessary Identify likely cause(s) \200\224 there may be different pains with different causes in one individual \200\224 and target treatment to cause Neuropathic pain is often opioid responsive, but antidepressants and anticonvulsants can be added Treat muscle spasm with physiotherapy, heat, antispasmodics and benzodiazepines Treat nerve compression pain with steroids Nausea and vomiting \200 Identify cause \200\224 is it reversible? (eg medication, hyper calcaemia, bowel obstruction) Give small portions of palatable food, avoid strong smells \200 Use regular antiemetics: Metoclopramide is indicated when there is gastritis, stasis and functional bowel obstruction Cyclizine is used with raised intracranial pressure and functional bowel obstruction Haloperidol treats chemical causes such as hypercalcaemia \200 Domperidone \200 Ondanse tron Constipation \200 Start with a stimulant laxative (eg senna) or stool softener if not on opiates depending on stool characteristics Opiates cause decreased peristalsis; a stimulant laxative is usually appropriate Danthron-containing stimulant laxatives are banned in all but terminal care, as they may be carcinogenic. They also cause skin burns so are usually avoided in incontinent patients Suppositories, enemas or digital evacuation may be needed SYMPTOM CONTROL IN THE TERMINALLY ILL 645 Anorexia \200 Normal in advanced cancer, and other conditions as death approaches \200 Family concerns may be the main problem \200\224 they may feel their relative is giving up Deal with this directly \200\224 eating more will not alter the outlook and pressurizing the patient can make them miserable Decrease medications that cause nausea or anorexia (opiates, SSRIs) \200 Give good mouth care \200 Help with feeding if weak \200 Offer frequent small meals \200 Prokinetics (eg metoclopramide) or steroids (prednisolone, medroxyprogesterone) may help Dyspnoea \200 Treat cause (transfuse for anemia, drain effusion, etc.) \200 A terrifyin g symptom \200\224 plan approach for how to deal with an attack without panicking Oxygen can help, as can an anxiolytic or opiates, fresh air or fans, and physiotherapy if mucus retention is an issue Confusion \200 Identify cause (infection, drugs, withdrawal from alcohol, electrolyte imbalances) Nurse in calm, well-lit environment. Relatives can often help with reorientation Drugs (eg haloperidol, benzodiazepines) should be used only when non-drug measures have proven ineffective Dehydration \200 Dying patients drink less (weakness, nausea, decreased level of consciousness) but often do not feel thirsty Good mouth care is all that is required where the decreased intake is part of the dying pro cess and the patient is not distressed by thirst \200 Reassure relatives (and staff) that it is the disease that is killing the patient, not the dehydration \200\230Death rattle \200\231 \200 The patient is usually unaware. Reassure the family o f this \200 If excess secretion is causing distress or discomfort to the patient or the f amily, use hyoscine butylbromide, hyoscine hydrobromide, or glycopyrronium (available subcu taneously or as patches) Further reading British National Formulary. Prescribing in the Palliative Care Section . M www.bnf.org . HOW TO Prescribe a subcutaneous infusion for palliative care Is the subcutaneous route appropriate? Use regular oral route where possible \200 Consider when: Vomiting/nausea/malabsorption \200 Dif \201 culty swallowing, eg near the end or if semi -conscious Is the patent already on an opiate? Calculate the current total dose given per 24hr (including prn administration) \200 Has this been adequate? (Ask nurses, family, and patient) \200 Con vert the oral opiate dose to an equivalent parental dose (see BNF ), eg morphine sulfate MR 20mg bd is equivalent to diamorphine 15mg s/c per 24hr If starting strong opiates de novo , start low (eg 1mg/hr morphine with allowances on the prn side for breakthrough pain) Morphine is cheaper and more readily available, but diamorphine is more soluble so can be g iven in a smaller infusion volume and is less likely to precipitate with multiple other dru gs. Morphine has about 2/3 potency of diamorphine (cid:2) Are there any other symptoms? Other agents can be added to the pump \200 Eg metoclopramide for nausea (30 \200\22360mg/ 24hr) Hyoscine hydrobromide for respiratory secretions (0.6 \200\2232.4mg/24hr) \200 Haloperido l for nausea, restlessness and agitation (5 \200\22315mg/24hr) \200 Midazolam for sedatio n (10 \200\22360mg/24hr) Write the prescription \200 How large are the infusion pumps on the ward? (Usually 10mL o r 50 mL) \200 Are the components compatible with each other, and water for injection eg diamorphine 30mg + haloperidol 5mg made up to 10mL with water for injection, r un in s/c syringe driver over 24hr Reassess every 4 \200\2236hr Do not wait for 24hr \200 Check whether there has been good symptom control \200\224 if not, increase the dose Check for side effects (eg drowsiness) \200\224 consider decreasing the opiate or benzodiazepine dose Check whether any prn doses have been used \200\224 add these to the next total dose you prescribe This page intentionally left blank 648 CHAPTER 26 Death and dying Documentation after death Veri \201 cation of death This is the con \201 rmation that dea th has occurred and may be performed by an appropriately trained doctor, nurse, or paramedi c before a body can be moved to the mortuary. It is recommended that you look for: \200 A bsence of response to pain/stimulation \200 Fixed dilated pupils \200 Absence of a puls e, heart sounds, respiratory movements and breath sounds (check for at least 30sec) Some of these tests can be done simultaneously to save time. Always record your \201 ndin gs in full along with the time of death, persons present, and the time of veri \201 cation . Certi \201 cation of death This is the writing of a death certi \201 cate. It is an impor tant duty and legal requirement of the doctor that has recently been looking after the pati ent \200\224 it allows the family to arrange a funeral and provides very impor- tant stati stics for disease surveillance and public health. \200 Inexperienced doctors tend to reco rd the mechanism of death rather than the underlying cause, which may lead to under-represe ntation of the real pathology in national statistics. Patients die of dementia and stroke a lthough their complications, eg aspiration pneumonia may be the last thing that was treated Always record as much information as possible, eg: Ia Aspiration pneumonia Ib Left total anterior circulation infarction Ic Non-insulin depend ant diabetes, atrial \201 brillation II Parkinson \200\231s disease, peripheral vascular disease is more informative than: Ia Pneumonia Ib Stroke Be as precise as possible. For example: When stating cardiac/renal/liver \200\230failure \200\231, qualify it with a more precise cause (eg heart failure due to ischaemic heart disease) \200 When a patient died of a sep ticaemic syndrome, where possible state the causative organism and source (eg \200\230 Escherichia coli bacteraemia due to a scending urinary tract infection \200\231) Old age is an acceptable cause of death in the very elderly person who has had a non-speci \201 c decline and reasonable assessments to exclude serious treatable disease Use section II to record other diagnoses, which are often multiple in older people. Multiple causes can be stated on one line You must have seen the patient alive during their recent illness (usually in the last 2 wee ks) to write a certi \201 cate \200\224 sometimes the GP writes a certi \201 cate for a hospital patient and vise versa if the patient has recently moved between sites The process of death certi \201 cation is currently being reformed in the UK to incorporat e a medical of \201 cer who will issue all certi \201 cates in a locality DOCUMENTATION AFTER DEATH 649 Cremation forms There are two parts to a cremation form, completed by different doctors who should not be related or work on the same team. You must have looked after the patient in their terminal illness to complete Part I. If you do not know the patient well, examine the body, the CXR, and the ECG for evidence of a pacemaker. In contrast, a Part II doctor should not have known the patient and is required by law to b e an impartial examiner of the case before the evidence (the body) is cremated. You must be a senior doctor (2 years post-MRCP/FRCS) to complete Part II. Ensure that you have seen th e medical notes, and have personally questioned the Part I doctor and one other person who knew the deceased (another doctor, nurse or relative). If there are problems with the certi \201 cate or the Part I they can be corrected or reissued. Sometimes you may need to sugg est the case is discussed with the coroner. Following the UK scandal surrounding Dr Shipman in which cremation forms did not highlight a problem, the government is reviewing the protocols surrounding death and cremation. Crema tion forms in their current iteration are likely to disappear. 650 CHAPTER 26 Death and dying Other issues after death Bereavement services \200 Most hospitals now have a bereavement of \201 ce that coordinates the paperwork required after a death and provide the family with information about registra tion and funeral arrangements. Bereavement of \201 cers provide a friendly, easily accessible interface between the hospi tal and relatives and can refer to voluntary bereavement support groups Consent for hospital postmortem may be obtained or coordinated by bereavement of \201 cers If no family comes forward or if they are incapable/unwilling to arrange a funeral, the hos pital (usually via the bereavement of \201 ce) will arrange and pay for a low-cost cremati on Postmortems \200 The coroner may initiate a postmortem for legal reasons or where no doctor is able to write a certi \201 cate \200\224 the family cannot veto this \200 Con sented hospital postmortems (at the family \200\231s discretion) are useful for education and audit especially in unusual or dif \201 cult cases. The rate of h ospital postmortems is declining, but careful discussion with relatives (often coordinated by the bereavement services team) increases the likelihood of consent. A limited examinatio n (eg restricted to the torso or one organ) is more acceptable After the Alder Hey scandal (retention and disposal of organs from children without parenta l consent; Liverpool, UK, 1990s), the new laws require a separate, explicit consent for ret ention of tissue for examination/teaching The registrar \200 The registrar is responsible for recording all births and deaths \200 The relatives have to register the death within 5 working days and this usually involves making an appointment The death must be registered before a funeral can be arranged \200 If there is an error o n the death certi \201 cate they can refuse to register the death and will refer the case back to the certifying doctor THE CORONER 651 The coroner Coroners are of \201 cers appointed by the Council to investigate any sudden o r unexplained death. They are independent of both local and central government. The police, a doctor, or the registrar may report a death to the coroner. The registrar must await the outcome of the coroner \200\231s enquiries before registering the death, so families shoul d delay making funeral arrangements. Under UK law the following must be reported to the coroner: Death occurred in police custody or in prison \200 No doctor has treated the deceased dur ing the last illness \200 The attending doctor did not see the patient within 14 days of death \200 Death occurred during an operation or before recovery from anesthesia Death was sudden and unexplained or in suspicious circumstances \200 Death may be due to an industrial injury or disease, or to accident, violence, neglect or abortion, or to any k ind of poisoning (this may include injurious falls and head injuries) Some coroners also like to be informed when death occurred <24hr after admission to hospital but this is not a legal requirement Although there is an obligation to report to the coroner deaths in the circumstances listed , the coroner might be happy to issue a \200\230Part A \200\231 cer- ti \201 cate, which permits the doctor to write a death certi \201 cate. Only a minority of deaths that are re ported will end up with a coroner \200\231s post- mortem or an inquest. Consider discussing : Cases of pressure sores or severe malnutrition at home (neglect is possible) Cases of falls where the incident is not fully explained \200 Postoperative cases \200 Mesothelioma and occupational disease (compensation may rely on a postmortem) Have a low threshold for reporting deaths when relatives are unhappy with social care or pr e-hospital or hospital care, or are overtly litigious The coroner \200\231s of \201 cers can advise you about acceptable causes of death on a ce rti \201 cate but are not medically quali \201 ed. A \200\230Part A \200\231 certi \201 cate records that you have discussed the case with him/her but more commonly informal tele phone advice is given \200\224 if you feel the case is at all conten- tious ensure that a \200\230Part A \200\231 is issued to protect you. 2If in doubt, discuss your case with the coroner. Following the Shipman murders (Dr Harold Shipman was a GP and a serial killer of his patien ts), the documentation after death and the role of the coroner is likely to be substantiall y revised by Parliament. 2The information given here applies to the UK only \200\224 local guidance should be sought in other countries. This page intentionally left blank 653 Chapter 27 Ethics Capacity 654 HOW TO Assess capacity 655 The Mental Capacity Act 2005 656 Deprivation of Liberty Safeguards 657 Making \201 nancia l decisions 658 Making medical decisions 660 Making social decisions 662 HOW TO Manage a patient insisting on returning home against advice 663 Advance directives 664 HOW TO Assess whether an AD is valid and applicable 665 Diagnosing dying and estimating when treatment is without hope 666 Making complex decisions 667 Cardiopulmonary resuscitation 668 The process of CPR decision making 670 HOW TO Manage DNACPR decisions 671 Rationing and ageism 672 Elder abuse 674 HOW TO Manage suspected elder abuse 675 654 CHAPTER 27 Ethics Capacity \200 A patient with capacity is intellectually able to make a decision for themselves Capacity and competency are equivalent terms, but the UK Mental Capacity Act has increased the use of the former It is a fundamental human right and a basic ethical principle that individuals can make autonomous decisions. However, society also accepts that some of its m embers, eg children and adults with severe cognitive problems, do not have the ability to m ake decisions for themselves and mechanisms are in place to protect them Older people and ill patients (matched for age) are much more likely to lack capacity than the general population and it is important that a geriatrician should be familiar with capa city and its assessment (Table 27.1 ) Best UK practice has now been enshrined in law by the Mental Capacity Act 2005 2Always remember that in declaring someone without capacity you may be robbing them of the ability to be involved in important decisions about their health and lifestyle \200\224 ho wever benevolent your motives, such deci- sions should never be taken lightly or inexpertly . Table 27.1 Assessing capacity Assess capacity for each relevant question individually. Global tests, eg mental test score s are not a substitute and can be misleading Capacity is decision-speci \201 c . Questions which are more complex and/or more important demand a higher level of capacity Capacity is assumed for adults The burden of responsibility is with the assessor to prove a lack of capacity Ensure the patient is functioning at their best before assessing capacity. If in doubt repe at the assessment later Capacity levels may \202 uctuate . Some types of dementia and delirium can cause transien t reversible incompetence Ignorance is not the same as a lack of capacity Patients should be educated about a subject before being asked to make a decision (just as you would expect a surgeon to explain an operation before asking you to sign a consent form ) Patients with capacity can make decisions which lead to illness, discomfort, danger, or eve n death. Carers/relatives often need education and support when the patient chooses an unwi se option A patient with capacity may make an unwise or unconventional decision CAPACITY 655 HOW TO Assess capacity \200 Trigger \200\224 doctors should be alert to the possib ility of a lack of capacity but it is often people closer to the patient (relatives/carers) who highlight a pr oblem. In real life a capacity assessment is usually only employed where there is con \202 ict or where an important step (such as a will or enduring power of attorney) is being att empted. Previous assessments of capacity for other decisions or at other times are not a su bstitute for the latest assessment Education \200\224 the patient should be given ample time to absorb and discuss the facts/ advice. Several education sessions may be needed. Encourage other health professionals and relatives to discuss the topic with the patient as well Assessment \200\224 probe the patient to assess retention, understanding and reasoning. Th e UK Mental Capacity Act outlines a functional test of capacity. Does the person have the a bility to: \200 Understand the information? \200 Retain information related to the deci sion? \200 Use or assess the information while considering the decision? \200 Communica te the decision by any means? The patient can fail at any step, most commonly the \201 rst. In borderline or contentious cases employ a second opinion (often from a psychogeriatrician). \200 Action \200\224 document the results of the assessment using observations and patient quotes. If the patient lacks capacity state how the substituted decision will b e made, eg medical decision in best interests, involvement of carers, case conference, etc. For examples of documented capacity decisions see Box 27.1 and Box 27.2 ). Further reading The British Medical Society ( M www.bma.org.uk ) and the General Medical Co uncil ( M www.gmc-uk.org ) provide extensive guidance on consent and capacity. The UK 2005 Mental Capacity Act gives a legal framework. Online: M www.opsi.gov.uk/acts/ acts2005/ukpga_20050009_en_1 . 656 CHAPTER 27 Ethics The Mental Capacity Act 2005 Legislation covering England and Wales that provides a framewo rk to empower and protect people who may lack capacity to make some deci- sions for themsel ves. Prior to the Act, decisions were often made guided by case law and although this statu tory law has not dramatically effected the way in which geriatricians function it has clari \201 ed who can take deci- sions, in which situations, and how they should go about this. It also allows people to plan ahead for a time when they may lack capacity by creating a l asting power of attorney (LPA) which is a legally binding advance direc- tive (AD) (see b \200\230Advance directives \200\231, p.664). The Act covers a range of decisions, from major (eg concerning property and affairs, health care treatment and where the person lives) to more minor everyday decisions (eg what the pe rson wears), where the person lacks capacity to make those decisions themselves. There are \201 ve key principles in the Act: Every adult has the right to make his or her own decisions and must be assumed to have capa city to make them unless it is proved otherwise \200 A person must be given all practicab le help before anyone treats them as not being able to make their own decisions Just because an individual makes what might be seen as an unwise decision , they should not be treated as lacking capacity to make that decision Anything done or any decision made on behalf of a person who lacks capacity must be done in their best interests Anything done for or on behalf of a person who lacks capacity should be the least restrictive of their basic rights and freedoms Independent mental capacity advocates Provision of independent mental capacity advocates (IMCAs) was a requirement of the UK Ment al Capacity Act 2005. An IMCA should be appointed where the following apply: The patient lacks, or has borderline capacity \200 There is no legal proxy, close relativ e, or other person who is willing or able to support or represent the patient There is a major decision to be made (eg serious medical treatment or a change of habitation) The IMCA will have authority to make enquiries about the patient and contribute to the deci sion by representing the patient \200\231s interests, but cannot make a decision on behalf of the patient. DEPRIVATION OF LIBERTY SAFEGUARDS 657 Deprivation of Liberty Safeguards The DoLS are described in the Mental Health Act (2007) wh ich updates the UK Mental Capacity Act (2005). They aim to protect people in care homes and hospitals from being inappropriately deprived of their liberty. The safeguards have been p ut in place to make sure that a care home or hospital only restricts someone s liberty safe ly and correctly, and that this is done when there is no other way to take care of that per son safely. The safeguards apply to vulnerable adults who lack capacity but not those who a re detained under the Mental Health Act (1983). What is deprivation of liberty? As there is no single legal de \201 nition of \200\230dep rivation of liberty \200\231 it can some- times be dif \201 cult to establish whether it i s taking place. Restrictions of a person s activity can range from minor (eg not allowing c hoice of clothing) to extreme restriction (eg refusing to allow a person to see family or f riends). Whether the restriction is great enough to amount to a depriva- tion of liberty wi ll depend on the individual circumstances. Case law is growing in this area. When should the safeguards be used? People should be cared for in hospital or a care home i n the least restric- tive way possible, and those planning care should always consider othe r options. However, if all alternatives have been explored and the institution believes it is necessary to deprive a person of their liberty in order to care for them safely, then st rict processes must be followed. These are the DoLS, designed to ensure that a person \200 \231s loss of liberty is lawful and that they are protected. The safeguards provide the person with a representative, allow a right of challenge to the Court of Protection against the unlawful deprivation of liberty and require that the decisi on be reviewed and monitored regularly. If there is concern that a person is being deprived of liberty, then the institution should be approached and concerns addressed. If the institution believes that the restrictions ar e necessary for safe care of the patient then a DoLS authorization must be sought via the r elevant body (see b \200\230Compulsory detention and treatment \200\231, p.230). 658 CHAPTER 27 Ethics Making \201 nancial decisions Power of attorney (POA) This is a simple legal document tha t allows an adult to nominate another person to conduct \201 nancial affairs on their beh alf. It is only valid while the person donating the attorney remains competent to do so. Lasting power of attorney for property and \201 nancial affairs \200 This was introduce d in the Mental Incapacity Act 2005 and is often but not always combined with a health and welfare LPA (see b \200\230Making medical decisions \200\231, p.660) It enables nomination of an attorney to make decisions about property and \201 nancial affairs \200\224 usually trusted family member(s) Powers include paying bills, collecting income and bene \201 ts or selling property, subject to any restrictions or conditions that might have been included in the LP A It can only be used once it has been registered at the Of \201 ce of the Public Guardian, but this can be done before the donor lacks capacity, so the attorneys can carry out \201 nancial tasks under the supervision of the donor A registered LPA can be revoked by the donor if they have capacity Enduring power of attorney (EPOA) \200 Before October 2007, people could grant an EPOA so a trusted person could act for them if they could no longer manage their \201 nances. Th is has now been replaced by property and affairs LPA (see b \200\230Lasting power of attor ney for property and financial affairs \200\231, p.658) Any EPOA remains valid whether or not it has been registered at the Court of Protection, pr ovided that both the donor of the power and the attorney/s signed the document prior to 1 O ctober 2007 An EPOA can be used while the donor has mental capacity, provided they consent to its use Once capacity to manage \201 nances is lost, the attorney/s are under a duty to register the EPOA with the Of \201 ce of the Public Guardian \200 An EPOA/POA does not cover anyt hing other than \201 nancial decisions Incompetent patients \200 An LPA/EPOA cannot be made once the patient is incompetent to understand the principles of the document (although it is not necessary for them to be full y competent to run their \201 nancial affairs) If an LPA/EPOA is not available for incompetent patients, sometimes the \201 nances can be managed informally, eg the pension can be paid out and joint bank accounts can continue. To formally take over \201 nancial management in these circumstances (especially for large estates or where con \202 ict exists) an application to the Court of Protection must be made Since the Mental Capacity Act 2005 this court can appoint deputies to manage \201 nancial, health, and welfare decisions MAKING FINANCIAL DECISIONS 659 Testamentary capacity This refers to the speci \201 c capacity to make a will. Solicitors and \201 nan- cial advisors can help draw up a will and occasionally request a doctor \200\231s opinion about competence. Legal guidelines are well established (see b \200\230M aking a will \200\231, p.678). Signing an LPA Patients should generally avoid making an LPA while unwell or in hospital as this would make it harder to prove that the patient had capacity if the validity of the do cument was ever challenged. Before an LPA is valid, there must be a certi \201 cate of capacity drawn up by an indepen dent third party called a Certi \201 cate Provider. The Certi \201 cate Provider could be a solicitor, a doctor, or another independent person whom the donor has known personally f or at least 2 years. In some cases (eg after a stroke) it may be most appropriate to ask a doctor to carry out the assessment. If a capacity assessment is required, check that the patient understands that once register ed, the LPA allows the attorney complete \201 nancial control, this power extends into th e future and they will be unable to revoke the power if they lack capacity. Document carefu lly as shown in Box 27.1 . The signing of an LPA must also be witnessed by an independent person (often a friend or in hospital by an administrator or manager). This should not be confused with the role of Cer ti \201 cate Provider. Box 27.1 Assessment of capacity to complete an LPA I interviewed Mrs Jones today. She indicated she wished to make an LPA in the favor of her husband and did not appear to be under duress from another person. She explained her health was deteriorating and she wanted her husband to manage the \200\230bills and things \200 \231 if she did not feel up to it in the future. She was able to tell me her that she owned a current account, savings account, some premium bonds, and that the mortgage had been pai d off on their house. She understood that an LPA would allow her husband to do as he wished with her money without necessarily consulting her both now and in the future. She knew tha t this power would continue even if she was too ill to be consulted. She con- \201 rmed t hat \200\230he has always sorted that sort of thing out and I don \200\231t want him to be stopped from doing it because I can \200\231t sign my checks \200\224 I trust him to do t he right thing \200\231. I believe Mrs Jones is competent to give lasting power of attorney to her husband. Dated _____________________ Signed ______________________ 660 CHAPTER 27 Ethics Making medical decisions Lasting power of attorney for health and welfare \200 This was i ntroduced in the Mental Incapacity Act in April 2005 \200 It enables nomination of an att orney to make decisions about personal welfare \200\224 usually trusted family member(s) A personal welfare LPA can only be used once the form is registered at the Of \201 ce of t he Public Guardian and the patient has become mentally incapable of making decisions about their own welfare It can include the power for the attorney to give or refuse consent to medical treatment if this power has been expressly given in the LPA (a proxy medical decision maker) Also includes power to make some social decisions, eg where the donor lives Patients who clearly lack capacity \200 Unless a valid LPA is available in the UK no one can make a decision about medical treatment for another adult without capacity \200 It is always worth enquir ing if a LPA is completed or if there is a written or verbal AD made by the patient prior to them becoming incompetent (see b \200 \230Advance directives \200\231, p.664) Doctors are required by the Mental Capacity Act to make decisions in the \200\230best inte rests \200\231 of their incompetent patients, and this holds true even if there is a valid LPA In America a hierarchy of next of kin can legally make substitute decisions. Relatives are often surprised and occasionally angry to \201 nd that they have few rights in the UK In practice doctors should routinely consult next of kin where important or contentious medical decisions are made for patients without capacity. The huma n rights legislation, through its support of \200\230family life \200\231 as a basic human right will reinforce the social shift towards increasing power for relatives. Relatives ca n help doctors to decide what the patient might have wanted under the circumstances, assist ing decisions about best interest If there is con \202 ict between the medical team and relatives about what is in the best interests of the patient that cannot be resolved the doctor involved ma y wish to seek a second medical opinion, consult with the hospital legal team, an IMCA, or refer to the courts Patients who may or may not have capacity \200 Patients \200\231 views should always be s ought about medical treatments \200 Often these views will concur with those of the medic al professional, or they are happy to be guided by the doctor Rarely, a patient will express a view at odds with either the medical team or their family, in which case a careful assessment of capacity to make their own deci sion is required Assess capacity in line with the principles outlined previously and document meticulously i n the notes (see example in Box 27.2 ) see b \200\230Making complex decisions \200\231, p. 667 MAKING MEDICAL DECISIONS 661 Box 27.2 Assessment of patient refusing a colectomy for cancer Miss Joseph has told me she will not consent to a colectomy. I have explained the procedure that is being recommended including the ben- e \201 ts and risks and she has been able to remember and understand this information without dif \201 culty. She explains that in vie w of her age and lack of current symptoms she would rather not put herself through a major operation. She said \200\230I am 79 years old and I don \200\231t want to be mucked around \200\231. She understands that by refusing surgery she might be shortening her life and th at she may become ill in the future as the tumor grows but feels that this is a \200\230le sser evil \200\231 than an operation at the moment. I believe she has capacity to make this decision and we have agreed to discuss it again in two weeks time during an outpatient app ointment after she has spoken to her family. Dated ______________________ Signed ______________________ 662 CHAPTER 27 Ethics Making social decisions The legal position for social decisions for patients without capaci ty (eg where a patient should live) is the same as for medical decisions. Unless an LPA is in place, the healthcare team should consult with family to try to ensure that the patient \200\231s best interests are met. If making a decision against the expressed wishes of patient without capacity, involve an a dvocate. Where there are no family members, or there is a lack of support for the patient, an IMCA may be appropriate ( see b \200\230The Mental Capacity Act 2005 \200\231, p.656). The DoLS should be followed (see b \200\230Deprivation of Liberty Safeguards \200\231, p.6 57) and these demand that decisions are made \200\230the least restrictive \200\231. It may be necessary to apply to the Court of Protection for a court appointed deputy to supervise welfare decisions. A very common challenge for the geriatric MDT is the patient who wants to continue to live alone in their own home after they have developed physical or cognitive problems which mean they are at risk in that environment (see b \200\230HOW TO Manage a patient insisti ng on returning home against advice \200\231, p.663). Further reading Lowe M, Kerridge IH, McPhee J, et al. ( 2000 ). A question of competence. A ge Ageing 29 : 179 \200\223 82 . MAKING SOCIAL DECISIONS 663 HOW TO Manage a patient insisting on returning home against advice First assess whether the patient has capacity to make the decision: \200 Patients with ca pacity should accept that they are at risk and reason that they prefer to take this risk th an accept other accommodation \200 In borderline or contentious cases a second opinion, o ften from a psychogeriatrician, can be helpful If the patient has capacity then they cannot be forced to abandon their home or accept outs ide help although the healthcare team and family can continue to negotiate and persuade. \200 It is worth determining what motives lie behind the patient \200\231s insistence; som etimes misconceptions can be corrected Patients will sometimes agree to a trial period of residential care or care package and this often leads to long-term agreement Where the patient lacks capacity , decisions should be made in the patient \200\231s best i nterest, and be the least restrictive option. While the patient should not be discharged to an environment where they will be at unreasonable risk, the team should still attempt to a ccommodate the patient \200\231s wishes and steps may be taken to reduce risk (eg discon- n ecting or removing dangerous items, alarm systems, or regular carer visits, etc. may still allow a patient to return home). There is no such thing as a \200\230safe \200\231 dischar ge \200\224 only a safer one.