Ethics at the End of Life

1. Ethics at the End of Life

2. Certain and Necessary... “As soon as a person is born, it must at once and necessarily be said: He will not escape death. Of all things in the world, only death is not uncertain.” -Augustine

3. Remember... The human mortality rate is holding steady at around the 100% mark Is it the task of the physician to “stave off death”? How well are we able to come to terms with the limits of medical care?

4. Objectives... Social / Cultural • Identify social and culturalattitudes towards ageing and dying – and their influence on end-of-life decision-making • Review more ways to address patients’ fears and concerns during the final stages of life Ethical • Outline principles of medical ethics - And their application to difficult end-of-life decisions • Clarify ethical distinctions and criteria • That inform medical care for EOL patients

5. The backdrop... We are living in an ageing society Population Ageing: Statistics ONS (2012 Updates)

6. The backdrop... Other Cultural Trends: • Individualism: autonomy, self-reliance • Cult of Youth: anti-ageing industry / fears of ageing • Technological control: power to alter circumstances of life • EXTERNAL (environment) • INTERNAL (self) • Medical Advances: longer lifespan, cures for acute illnesses, increasing chronic illness and old age • Distance from death: sanitised out of the home, ‘death denying’ and death defying culture, psychological refusal to acknowledge mortality

7. The backdrop... The last 100 years, and especially the last 50 years has shown us the most advances in medicine Extended lifespan has increased chronic illness See ‘The Denial of Death’ – Becker, (1973/4)

8. Illustration... DEMENTIA - Affects1 in 6 of 80+; 1 in 3 of 90+ • Alzheimer’s most common form dementia • Increasing incidence due to ageing population Disease becomes a symbol of frightening burdens • Old age and dying • Fear of becoming dependent • Fear of having others dependent upon us

9. Dependence &Disability in an ageing society LIFE HISTORY OF DEPENDENCE: it is part of the whole of human life Common fear with ageing: • Becoming a burden on others Dependency undignified? Life always begins with dependence • Preborn, newborn, young child Life often ends with dependence • Old age and sickness • Loss of capacities 1st PRINCIPLE: Human dignity and personhood • Not something we ‘have’ at some points in our life • We remain persons with dignity throughout the whole of life

10. Dependence &Disability in an ageing society DIMENSIONAL: • Scale of disability on which we all fall • Matter of more or less • Different periods in our lives – different points on the scale • When we pass from one point to another: • we remain the same individual we were before making the transition • we don’t lose our personhood, dignity, or basic rights • human dignity is given (not granted) • can be respected or violated

11. Modern Views... MODERN PSYCHIATRY • Might be seen as viewing dependence in pathological terms • Dependent personality disorder • Co-dependent couples etc MODERN PHILOSOPHY • Self-sufficiency superior to dependency • Moral philosophy emphasises • Individual autonomy • Capacity for making independent choices • But, emphasis might be seen as TOO ONE-SIDED

12. Exaggerated fears of dependency in old age... Failure to recognise: • Extent of dependence throughout lifespan Illusion of total control, complete autonomy: • Fostered by technological advances Individualistic cultural attitudes: • Devalue social ties, mutual solidarity Realities of ageing population: • May help correct one-sided values • Foster acceptance of care, encourage social solidarity

13. Ageing, dependence and disability for you, for me, now and in the future... Typically think of ‘disabled’, the elderly, the dependent, as ‘them’ rather than ‘us’; a special class or ‘interest group’ ‘They’ are actually US • as we have been • as we are • as we will be

14. Medical Decisions at the End of Life • An area that provokes a lot of anxiety • Patients and family members can be ambivalent, afraid of making ‘wrong’ decisions • Doctors can be uncertain – especially in ‘borderline cases’ > Ethical Principles....

15. Basic Principles / Values... Hippocratic starting point.... Doctors are healers: never directly aim at or intend death Sometimes it may be ethically justified to withhold or withdraw potentially life-extending medical treatments > Is this aiming at or intending death??

16. Distinctions... • When treatment is withheld/withdrawn we are aiming to dispense with the treatment, not the patient • Might it be that we need not do everything to ensure the longest possible life? • We allow cars on the road, even though we know their potential to destroy life • Our decisions may hasten death • Does not imply aiming at death, right?

17. Ethical Criteria: withholding/withdrawing treatment • When treatment is judged to be futile • When treatment is judged to be excessively burdensome to the patient • Little expected benefits, high burdens/risks

18. What choice..? • Refusing futile or excessively burdensome treatment: • NOT choosing death, rather a different quality of LIFE • Not rejecting life, as such, but rather rejecting a life with added burdens of aggressive treatment • NOT choosing death, but perhaps one of several LIVES open to us, even if a shortened life

19. Note about terms... • Useless / futile / burdensome • Refers to potential treatment / intervention • Does not refer to value of patient’s life • Refusal to treat / rejection of treatment because of feeling of ‘being a burden’ (to family, society etc) • Rejection is not of treatment but of life itself • Ethically unacceptable? Prejudiced?

20. Proportionate Treatment • Not too painful, burdensome, expensive • Reasonable chance of working • Ethically obligatory • Pt has right to this; duty not to reject it • To refuse may imply suicidal intention • Example: psychiatric consult • Otherwise healthy young patient • Refusing insulin injections • Depressed, did not want to live (suicidal intent)

21. Disproportionate Treatment • Excessively burdensome or useless • For given patient in particular circumstances • Acceptance/refusal prudential decision • Can justifiably be withheld or withdrawn • Does not imply • doctor’s intention to kill • or patient’s intention to die

22. Proportionately beneficial vs disproportionately burdensome (futile) Importance of context: • treatment in one context might be right for one, but not appropriate for another • Eg. DIALYSIS: Young acute renal failure patient vsend stage cancer patient • These terms do not simply describe a treatment, the describe a treatment within a particular clinical context • Judgement is relative to individual patient and the particular circumstances of the case

23. Tough Cases... • Nutrition and Hydration in EOLC • Is it medical treatment or ordinary care? • Is it always proportionately beneficial? • Is it, in some circumstances, disproportionate? • Futile • Excessively burdensome?

24. N & H: Treatment or care? • Treatment • Medical interventions • Medications • Surgery/procedures • Care • Natural means for preserving life, along with • Shelter, warmth, turning to avoid sores, cleaning wounds etc • In most cases: • N&H is care • Aim is nourishment and sustenance • Aim is not alteration of disease process • True even when delivered by artificial means

25. Exceptions... • Where food and water no longer achieve their desired ‘aim’: • No longer provide nourishment and sustenance • Can be true of spoon-feeding or tube feeding • FUTILE OR EXCESSIVELY BURDENSOME Eg patient in process of dying: organ systems failing - no longer absorb food or assimilate nutrition - Chronic patient: excessive discomfort, aspiration risk

26. Learning to be aware of limitations... • Do you agree that we are not advocating... • ...that extending life at all costs is always the imperative? • ...that a dying person should not be allowed to die? • ...that we are obliged to use all extraordinary means to keep a person alive?

27. Quality of life considerationsaffecting the decisions around EOLC • OBJECTION: shouldn’t the decision be based on quality of life? • This objection appeals to our empathy for the patient • It may arise from legitimate fears • That a person may be brutalised by technology’s ability to prolong life • Fear of living a life of prolonged suffering

28. A ‘Slippery Slope’... • No universal standard to judge the quality of life • May start with altruistic motives • Judgments will eventually be determined by • Economic pressures • Political pressures • Arbiters of ‘quality of life’: • Initially – patient, proxy, medical staff • Eventually those with economic interests • Decision-making power open to abuses

29. Hippocratic Paradigm... • Hippocratic Oath: • ‘Into as many houses as I may enter, I will go for the benefit of the ill...” • Placed at the service of the individual sick person • Not an administrator of social resources or political programs • Not an agent of state power/authority

30. Physician Assisted Suicide, Euthanasia... • Intentionally causing/intending death, in order that suffering may be eliminated • Sometimes proposed as a solution to burdens of care-giving, suffering, or prolonged illness • Becoming / has been legalised in certain places

31. Human Life and Human Goods... • Human life not merely instrumental good, but inherent good • Not something we ‘have’ or possess • It is what we ‘are’, living, being • Our life is our person • Without life, we can possess no other goods • precondition for all other human goods • Inc. Autonomy, independence, rationality etc

32. Human Life: Value... For your reflection: • Life is a good • Of the person • Not just for the person • To treat our life as a ‘thing’ that can be disposed of or authorise another to terminate is: • Contradictory, dehumanising • Destroys every other human good (inc autonomy – in exercising our autonomy, we destroy our autonomy)

33. Physician Assisted Suicide... • Misguided attempt to completely control death • Irony: trying to master one event that finally shows our lack of complete mastery • Opposed by GMC • Erodes ethic of healing • Represents a palliative care failure • Requests cease when symptoms and pain and depression treated

34. Legitimate Fears... • Rise of medical technology: mixed blessing? • People fear they will be kept alive beyond what they can endure BUT... • Ethical criteria can guide complex decisions • Recommend and provide proportionately beneficial treatment • Recommend against or withdraw futile or disproportionately burdensome treatment

35. Your role as physician... • Addressing fears: • We do not live in a society where futile care is typically refused: • Eg have one more round of experimental chemo • Do not want to give up hope • But we may unintentionally subject people to harm • False medical hope in last days • Important to educate patients / proxy • Understand what they are accepting / rejecting

36. What we learn... • We understandably want some control over life • Over-zealous attempts to completely control life/death can be seen as ‘dehumanising’ • Limits to medical technology • Futile / disproportionately burdensome interventions need not be attempted • Never abandon care • Even when cure is impossible • Limits to human autonomy • We are not the sole author of the story of our life • We are dependent rational animals • To be a physician is to be part of this interdependence

37. Ageing and Dying... “Against our confidence in mastery and control, we need to remember that old age and dying are not problems to be solved but human experiences that must be faced. In the years ahead, we will be judged as a people by our willingness to stand by one another, not only in the rare event of a natural disaster but also in the everyday care of those who gave us life and to whom we owe so much.” -Dr Leon Kass, Washington Post article