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Ethics in the Context of Age, Dementia and Palliative Care Ian Maddocks Caroline Chisholm Centre October 3, 2013

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1 Ethics in the Context of Age, Dementia and Palliative Care Ian Maddocks Caroline Chisholm Centre October 3, 2013

2 So many dumb ways to Die – does Palliative Care address them ?

3 What is ‘Ethical’ ? “Then there’s ethics. Ethics is easy.Leave the shielas alone and don’t rubbish your mates: That’s all you need to know about ethics”. Experienced GP addressing medical students, circa 1965 ‘ Mores ’ are different from Ethics

4 Making sure that they stayed within the law, and kept the reputation of the profession safe, may have been a fair representation of the ethics of the Medical Profession at the time; has it changed? Have we also learnt from the Bankers to be greedy? A paraphrase of Dickens’ view of lawyers (in Bleak House) was made by Davis McCaughey in a sermon considering medical ethics: “let patients in hospitals once clearly perceive that the grand principle of medical care is to make business for doctors at their expense, and surely they will cease to grumble”. What ethic motivates doctors and health workers? A questionnaire for applicants to the Christian Medical College at Vellore, India, asked: ” Apart from your desire to serve suffering humanity, why do you wish to study medicine?”

5 Traditional Ethical Issues: AutonomyConsent, Rights, Information. BeneficenceOutcome. Non-malevolenceDo no harm, Outcome. JusticeEquity, Fairness. FidelityKeeping Faith, VeracityTruth, Communication, ConfidentialityKeeping Secrets, Privacy Dignity

6 Traditional Ethical Issues: AutonomyConsent, Rights, Information. Respect BeneficenceOutcome. Trust, Relationship Non-malevolenceDo no harm, Outcome. Trust JusticeEquity, Fairness. Respect FidelityKeeping Faith. Trust, Respect, Relationship VeracityTruth, Communication. Relationship ConfidentialityKeeping Secrets. Trust, Relationship Privacy Dignity. Respect

7 Respect, Trust and Relationship can be more important than Rules and Guidelines. Palliative Care promotes ‘Patient-Centred’ or ‘Person-Centred’ Care Another term suggested by Kitwood, pioneer in dementia care, is ‘Presence’ – Being ‘present’ with a patient means attending with a knowledge, sympathy, interest and concern for the totality of that individual. It requires an understanding of history, culture, context, relationships, fears, hopes etc. A reflection on the nature of ‘evidence’ important in care?

8 Process Theology considers the interdependence of the many parts of creation. At the simplest level: ‘I experience the tree, the tree experiences me’. It affirms that relationship creates something different from the individual parts separately. Patient with doctor is different from each apart – the behaviour of both will change. Understand what it is like being a patient, being subjected to the talk: ‘Hop up here, dear’ (Polly Toynbee: Hospital) Beatitudes: Arizona care home for dementia. Staff experience being bathed, teeth brushed, sitting in wet diaper. New Yorker May 20, 2013

9 Pacientia: Suffering (pati = to suffer) is the Latin root from which come many of the words important in care, such as: Patient, passion, patience We can recast ‘Patient-centred’ as ‘Suffering-centred’. A healer needs to consider the many latent depths of suffering, and ethical practice will reach into those depths to assist or relieve. It is unethical to allow unnecessary suffering.

10 The Fourfold Noble Truth from the Buddhist literature “The world is full of suffering. Birth is suffering, old age is suffering, sickness and death are sufferings. To meet a man whom one hates is suffering, to be separated from a beloved is suffering, to be vainly struggling to satisfy one’s desires is suffering. In fact life that is not free from desire and passion is always involved with distress”.

11 Toby Minyintiri Baker is an artist and Ngangkari (traditional healer) in the APY Lands. He uses his healing hands with understandings that are centuries-old, to relieve suffering among his people. A patient who needs medical attention may also be affected by cultural unease and by the 200 years of suffering inflicted on the Aboriginal communities of Australia since white settlement. Ngangkari heal in traditional ways, help their people be ready for the mechanics of western medicine

12 Ethical Issues that are Currently Prominent Privacy: Face-Book? Twitter? Electronic Health Record (PCEHR); Government surveillance; Submitting to public health programs – opt out?; Trust eroded by recent revelations eg in USA; Protecting the privacy when providers share health data Tele-health, surveillance of home care by two-way video; The imperative of what is Possible (but intrusive?) Consent: Increased requirement for recording consent – every intervention, each transfusion etc. Fear of Litigation lessens transparency, increases investigations, distorts decisions, focuses on the record, not the patient.

13 ISSUES RELATED to AGE Attitudes to ageing relate to values and therefore to ethics Ideal – to come to death ‘full of years ‘. Traditional veneration – Chinese, Biblical, Papua – Eroding? Demographic realities: much recognized, little action Changes in patterns of illness and costs of care for aged Responsibility for one’s own ageing, healthy life-style, acceptance of change – ethical responsibility? Societal behaviour towards ageing – denial, devaluing Place of Advance Directives – current enthusiasm Enthusiasm for Assisted Suicide in elderly groups

14 Confucius: Old age, believe me, is a good and pleasant thing. Exodus 20:12 Honour thy father and thy mother: that thy days may be long upon the land which the Lord thy God giveth thee. Traditional veneration – Chinese, Biblical – Eroding?

15 Pari, a village near to Port Moresby Ageing in Papua

16 Igo Ovia – knew the old stories of the Sacking of Taurama Village, the songs of the Hiri Voyages,the legend of the tuna fish Guba Rahobada, knew the ways of the sea and the reef and could direct canoes from the land where to lay the net Legu Tom, at Daugolata, where the tuna came each year to be caught, as the Legend prescribed. Aged Men accorded respect; but no longer, the songs and the knowledge have become irrelevant in the modern city

17 POPULATION STRUCTURE, Age and sex - Australia - 1990-2010

18 Population change, Age groups - 1990 to 2010 Demographic realities

19 Household Expenditure on Health: A Snapshot, 2004-05 Total health expenditure in Australia in 2004–05 was $4,001 per person (AIHW 2007). Government, both state and federal, funded 68% of health spending. Individual out-of-pocket payments accounted for 31% = > $1,000 each In 2011, a report showed that 65% of mature age people (aged 50-79) did not purchase health insurance because they could not afford it. Chronic conditions cause burdensome out-of-pocket health care costs. Expectations of healthy old age.

20 The Public Ethic Is illness a public responsibility? Medicalization of illness: who owns? Balance in use of resources the aged use a high % of health costs - their demand = others have less? Public attitudes, values, regarding age Discounting those with dementia Inequities in the treatment of minorities Advance directives being promoted, help in aged care – are they paternalistic?

21 1984: Governor Richard Lamm: The old have an obligation? ''You've got a duty to die and get out of the way,'' said the 48-year-old Governor. ''Let the other society, our kids, build a reasonable life.'' Arguments for ‘getting out of the way’: You’ve had the best of it, retire gracefully Costs of me staying alive – waste of $ Burden for the family Chronic diseases a cost to the community Daniel Callahan, 1984 also advocated Setting Limits

22 Daniel Callahan (Hastings Centre), Update, 2001 Justice and unconstrained progress are no longer compatible. Rich will not suffer, everyone else will. Recast medicine’s goals – to more than reduced mortality Palliative care opens the way for a medicine that better balances life and death, curing and caring. Preparation for a Healthy Old Age up to the time of death still makes sense. Prevention encourages a good end of a good life. But we need to accept that to live with and die with mortality is a fundamental mark of the human condition. ‘Most Kind and Gentle Death’

23 A Personal Ethic Dealing with one’s own ageing Preparedness for change, Making advance decisions Sharing with family, friends Willingness to accept help OR Bargaining Denying change Demanding: promise never put in nursing home Transferring assets to avoid tax

24 Questions and Dilemmas Who should decide? How ‘informed’ need consent be? Is ‘ethical’ personal or societal? What is allowed in law?

25 Patient Family Doctor Team Lawyer/court The influence of culture, language, age, competence Who should decide?

26 Consent: how ‘informed’? The former acceptable standard was little more than the level of information offered by a used car salesman explaining the performance of a vehicle. This has been replaced by later judgements eg. Whittaker. Information has to be full, accurate, comprehensive. The use of databases which can churn out lists of drug/procedure side-effects does not equate to provision of information.

27 The Ethics of Professional Communication: When the Patient Fails to Follow Instruction – whose fault? “Unfortunately, according to the Institute of Medicine, nearly one half of all adults in the United States -- 90 million people -- have trouble understanding what the doctor tells them about why they are sick and how to comply with their medication regimens. Studies show that among those patients with limited literacy skills – and these may include affluent and educated patients as well as indigent ones - 26% do not understand when is their next appointment; 42% do not understand “take on an empty stomach”; and 78% misinterpret warnings on prescription labels,

28 Autonomy = self-rule, making one’s own law To what extent is this purely individual, to what extent collective? Influence of family, local mores, training, prejudice. Autonomy is always relative to: The cultural and religious setting The competence of the individual The effect of a personal decision on others The requirements of the larger law

29 Justice Issues: The balance of Cost and Benefit. Spend more on anti- cancer drugs than any other disease category: What is 2 -3 months survival worth? What quality? Is palliative care better value than chemotherapy? Medical/Social/Ethical/Economic considerations are claimed to influence PBA recommending a new drug Clinical value, $ value/social value: equity of access In palliative care, what priority for cancer compared with the needs of the very old, the slow-stream terminal illnesses - eg dementia?

30 “Man’s consciously lived frailty, individuality and relatedness make the experience of pain, sickness and of death an integral part of his life. The ability to cope with this trio autonomously is fundamental to his health. [Illich 1976] CONTROL is a central component of health; are we too controlling of our patients? Ivan Illich

31 PALLIATIVE CARE IS DIFFERENT? The patient is dying, incompetent, discounted. The patient is weak and uncomfortable, lacking confidence and clarity. Autonomy is diminished Not always clear what will do good, what harm. Much uncertainty re beneficence Other family considerations may seek precedence but be confusing; inconsistent; what is ‘just?’ Working in a team introduces some additional concerns Which secrets ought to be shared, kept private?

32 Palliative Care Issues with an Ethical Edge Truth-telling: family ask, “Don’t tell him” Intervene or no? - I-V, PEG, drainage of effusion. Nutrition, hydration: I-V, S/C, thirst, Prolonging discomfort? Treatment of infection: Is it necessary? Eg pneumonia ‘Terminal restlessness’: Will sedation hasten death? Assessing ‘Pain’ in the unresponsive, eg with dementia Writing ‘DNR’ orders v. Good Palliative Care Advance Directives. Care planning. Prognosis: What will the end be like? How long have I got?

33 “Falsehood and delusion are allowed in no case whatsoever, but as in the exercise of all virtues, there is an economy of the truth. It is a sort of temperance, by which a man speaks truth with measure, that he may speak it longer. Truth-telling House of Commons, London 1790 Edmund Burke ‘Letters to a fellow MP’, 1796

34 When a patient with advanced dementia refuses to eat, that person is dying. Artificial measures to provide nutrition, particularly if offered in uncomfortable ways, are entirely inappropriate. Dr Joanne Lynne

35 PLATO: “To a dying man, food is like poison ” “If he won’t eat he’ll die”: change to: “He is dying, and so he doesn’t need to eat”

36 ‘Pneumonia may well be called the friend of the aged. Taken off by it in an acute, short and not often painful illness, the old man escapes those cold degradations of decay so distressing to himself and his friends ’ Sir William Osler: The Principles and Practice of Medicine

37 Abbey Scale for Assessing Pain in Dementia Score 1 - 3 for severity of: Vocalization- whimper, groan, crying Facial expression - tense, frown, grimace, fear Change in body language - fidget, rock, guard Behavioural change - confused, refusing food Physiological State - Temp, pulse, BP, sweats Physical Change - torn skin, pressure areas, injuries Add up to a score out of 18: 0-2 None; 3-7 Mild; 8-13 Moderate; 14+ Severe

38 “Good Palliative Care Orders” An attempt to replace the negative, coded order of ‘DNR’ with an open shared and positive response to a situation in which intrusive and intensive treatment was seen to be unacceptable or inappropriate (futile). “I have discussed the situation of patient XX with him, with family members PP, YY & ZZ, and with staff members QQ,RR & SS. We have agreed that management shall be directed to the provision of good palliative care, with emphasis on dignity and comfort, and that in the event of further deterioration, resuscitation measures will be inappropriate”. Signed Dr. AA

39 Perceived difficulties with ‘Euthanasia’ legislation Definitions: ‘terminal’, ‘unbearable’ Diagnosis and management of depression Estimate of prognosis Questions of competence Possible pressure from family Intent of doctor Example of Netherlands, Switzerland, Australia I expect legislation to continue to be actively pursued. Phillip Nitschke attracts enthusiastic responses from elderly groups who want CONTROL, the right to decide, but may rarely effect their own suicide.

40 Professional Issues: Coping with no right answers Living with uncertainty Personal Issues being true to self: ‘conscience’ Legal issues balancing requests with what is allowed in law - matters of ‘intent’.

41 EVIDENCE and INTUITION “The Intuitive Mind is a Sacred Gift; the Rational Mind is a Faithful Servant. We have honoured the servant, and forgotten the gift.” Attributed to Albert Einstein Evidence is given pride of place Where is Intuition Born? What feels ‘Right’?

42 I pray you, give audience, and hear this matter with reverence; the Summoning of Everyman called it is, that of our lives and endings shows how transitory we be all day. The story saith, “Man, in the beginning look well, and take good heed to the ending, be ye never so gay. Ye think sin in the beginning full sweet, which in the ending causeth thy soul to weep, when that the body lieth in clay. Does religion still influence behaviour? Fear? Triumph? One short sleep past we wake eternally And death shall be no more; Death, Thou shalt die

43 Laws, Mores and Conscience In 1534, Sir Thomas More refused to swear to the Act of Succession and the Oath of Supremacy demanded by the King. His companions urged him to go along with them, and accept the Oath in ‘fellowship’ with them. In a representation of the time, Sir Thomas replies, “And if I do, and you go to Heaven for following your conscience, and I go to Hell for denying mine, will you visit me, for ‘fellowship’?” He was committed to the Tower, found guilty of treason and beheaded on July 6, 1535. His final words, were: “the King’s good servant, but God’s first”.

44 Arthur Kleinman The Illness Narratives: Suffering, Healing and the Human Condition. Understanding the meaning of the illness to them ‘ may liberate sufferers and practitioners from the oppressive iron cage imposed by a too intensely morbid preoccupation with painful bodily processes and a too technically narrow and therefore de-humanizing vision of treatment ‘. Do we get too involved with physical issues? ’ Back to Davis McCaughey: His text was Matthew 6 25. Is not life more than food? And the body more than clothing? Discomfort is more than disease What matters to the patient? To the family?

45 Deciding: Conscience and Faith In the same passage from Matthew: Which of you by being anxious can add one cubit to his span of life? McCaughey’s conclusion asks us not to be anxious in making ethical decisions: “Receive life from God as a gift, not a threat. Then you will be freed from anxiety. The decisions you make may be difficult, they will certainly not be simple. But they need not make you anxious”. “For whether you make them right or wrong, or, as is common among men, a mixture of right and wrong, your future and the future of the human race is in the hands of God, the Lord, with whom belongs the issues of life and death”.

46 Nurselink, February 21, 2012Ethics and End-of Life Issues Thankyou for listening

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