1. The debate Mzukisi Grootboom Chairman : South African Medical Association Council Member: World Medical Association END OF LIFE DECISIONS

2. Ethical aspects of end of life decisions Relationship between euthanasia and murder Legal position on end of life decisions Living Wills Presentation Plan

3. END OF LIFE Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours or days) and those with: (a) advanced, progressive, incurable conditions (b) general frailty and co-existing conditions that mean they are expected to die within 12 months (c) existing conditions if they are at risk of dying from a sudden acute crisis in their condition (d) life-threatening acute conditions caused by sudden catastrophic events

4. Illness or injury which in opinion of 2 competent medical practitioners: –Will inevitably result in death of patient and which is causing severe suffering; –Is causing patient to be in persistent, irreversible, unconscious condition with no possibility of meaningful existence TERMINAL ILLNESS

5. DILEMMAS The most challenging decisions in this area are generally about withdrawing or not starting a treatment when it has the potential to prolong the patient’s life. The evidence of the benefits, burdens and risks of these treatments is not always clear cut There may be uncertainty about the clinical effect of a treatment on an individual patient, or about the particular benefits, burdens and risks for that patient In some circumstances these treatments may only prolong the dying process or cause the patient unnecessary distress

6. Scientific Advances : double-edged sword Life has natural end Point at which to change trajectory to palliative care Consultation with family – does not mean family consent ETHICAL ASPECTS OF END OF LIFE DECISIONS

7. Euthanasia, that is, the act of deliberately ending the life of a patient, even at the patient’s own request, or that of close relatives is unethica l Does not prevent physician from respecting the desire of patient to allow natural process of death to follow course in the terminal phase of sickness WMA Declaration on Euthanasia

8. WMA Declaration on Assisted Suicide Where assistance of the doctor is intentionally and deliberately aimed at enabling a patient to end his or her own life is unethical and should be condemned Refusal of treatment is a basic right of the patient

9. HPCSA –wilful act causing death of patient – unethical & unacceptable, even where requested by patient or proxy –duty to alleviate pain & suffering – hence withhold / withdraw life sustaining treatments ETHICAL ASPECTS OF END OF LIFE DECISIONS

10. In terms of current law, assisted suicide or euthanasia is unlawful.. CURRENT LEGAL POSITION.

11. The dying phase must be recognized and respected as an important part of a person’s life The primary responsibility of the doctor is to assist his or her patient in obtaining the optimum quality of life through controlling symptoms and addressing psycho-social needs and to enable the patient to die with dignity and comfort Doctors could not use their medical training to kill Ethical imperative is to improve palliative care had been brought into sharp focus WMA Declaration on End-of-Life Medical Care

12. Early recognition and planning Anticipation and recognition and addressing the likelihood of pain and other distressing symptoms Provision for social, psychological and spiritual needs in order to help them deal with the fear, anxiety and grief associated with terminal illness

13. WMA Declaration on End-of- Life Medical Care The cardinal point however, is that the doctor has a duty to heal and where possible relieve suffering and protect the best interests of the patient. We cannot abandon the patient just because the illness has reached a terminal stage

14. Euthanasia: Practitioners actively participate in causing death of patient Murder: unlawful & intentional killing of another person Clarke v Hurst NO 1992 S v Hartmann 1975 Euthanasia & Murder

15. Constitution BoR s12 NHA s6(1)(d): –to be informed of right to refuse and implications, risks, obligations of refusal –hence notion of informed refusal Common Law – Re Farrel 529 (1987) HPCSA Guidelines Patients’ Rights Charter INFORMED CONSENT & INFORMED REFUSAL

16. Mentally incompetent patient –NHA : spouse, partner, parent, grandparent, adult child, sibling –NHA: allows for “substituted judgement”: patient can appoint proxy in advance (in writing) to make decisions on their behalf while they are incompetent to do so. INFORMED CONSENT & INFORMED REFUSAL

17. Advance directive stating if at any time a person suffers from incurable disease or injury which cannot be successfully treated, life sustaining treatment should be withheld / withdrawn and patient left to die naturally. Takes form of written document drawn up by person of sound mind and signed in presence of two witnesses who also sign the LW LIVING WILLS / ADVANCED DIRECTIVES

18. Furthers ethical principle of autonomy Reluctance on part of some practitioners to recognise validity of living will HPCSA : recognition of LW – patients to be given opportunity and encouraged to indicate wishes regarding further treatment Patients’ Rights Charter: should inform practitioner on wishes regarding death WMA Declaration of Venice on Terminal Illness: doctors to recognise rights of patients to develop written advance directives ETHICAL ASPECTS OF LIVING WILLS

19. Proposed in 1994, Bill 1998, not enacted Defined terminal illness Recognised LW Recognised “enduring power of attorney” Recognised court order as remedy in absence of LW or power of attorney Recommended legalising of doctor-assisted suicide SA Law Commission Recommendations on Euthanasia and End of Life Decisions

20. OBSERVATIONS “Often our fears and imaginings are a lot worse than reality” Euthanasia, like suicide, is a ‘one-way street with no possibility of return,’ Patients emotions swing ‘like a pendulum’ Death is ‘an opportunity and a process’ in which there could be, ‘a lot of living, richness, incredible growth and family interaction’

21. OBSERVATIONS Assisted suicide may be perceived as the ultimate expression of liberal individualism The Bill of Rights enshrined in the Constitution is firmly rooted in the tradition of liberal individualism The rest of our existing health legislation in the form of statutory law strongly supports individual patient choice

22. THE SOUTH AFRICAN CONTEXT “ SA not a safe and appropriate place, for liberalized euthanasia legislation” This ‘recourse of last resort,’ (euthanasia) could only really be justified in a country with the very best medical care for all, a well- organised and universally acceptable palliative care and support system, stable and well-functioning (particularly judicial) systems and a strong culture of respect for human life. With our severe constraints on health care facilities and the totally inadequate allocation of resources for effective medical treatments, there is a real risk of euthanasia becoming a substitute for proper care for the terminally ill and other patients in dire medical straits,’

23. Assisted suicide is an emotive topic that is ethically, legally and culturally challenging

24. Thank you