End-of-life decisions, ethics and the law:

Starting the public debate• Two sides of the pro-legalisation case– Argument (as in this Position Paper)– True stories (Sean Davison and others)• Where to start– Revive the debate about the South AfricanLaw [Reform] Commission (“SALC”) Reportand its draft bill – End of Life Decisions Act1998• Diginity SA petition• Petitioning Parliament3

Moral rights at stake1. Right to be free fromunnecessary suffering2. Right to a naturaldeath4. Right to assisted dying 3. Right to futurecontrol over one’sbody5

Ethical disagreements – Levels• Ethics of:– A practice – Is X ethical?• Is polygamy ethical?• Is termination of pregnancy (abortion) legal?• Is assisted dying ethical?– Decriminalising a practice – Should X belegalised?• Should polygamy be legal?• Should termination of pregnancy (abortion) be legal?• Should assisted dying be legal?7

Consensus on constitutional level• The Constitution should ground democraticconsensus– Consensus of citizens about spirit, values and rights ofConstitution– The SALC Report (1998) and draft bill as point ofdeparture for a national debate about legislation– Key constitutional (legal) issues• Interpretation– Right to life (limitations of)– Right to dignity (quality of life considerations)• Balancing– Individual interest in making autonomous endof-lightdecisions– Societal (state) interest in protecting life8

Perspectives on medical practices• Medical– What are the clinical facts?– What is standard-of-care medical practice?• Legal– What is the law?• Ethics– What should we do?• What is good, right and just?– What should the law be?9

1. Terminal pain management (1)• Terminology– Pain, distress, suffering– Comfort care, palliative care, symptom relief– Terminal illness, end-stage of terminal illness– Potentially life-shortening symptom relief– Palliative sedation, terminal sedation– Doctrine of double effect• Ethics– Moral right of individuals in the terminal phase ofdying to be free from unnecessary suffering– Suffering and religion10

1. Terminal pain management (2)• Law– Under-treatment of pain– Treatment of pain legal, even if it potentiallyshortens life– Uncertainty about legal limits, if treatmentpotentially shortens life– Need legal clarification:• Recognition of doctrine of double effect• Immunisation of criminal and civil liability– SALC draft bill of 1998 introduces doctrine ofdouble effect11

1. Terminal pain management (3)Question 9: Doctors fail to give adequate pain medication most often through fear of hastening a patient'sdeath.Neutral15%Stronglyagree + Agree54%Disagree31%Figure 9: Under-treatment of pain for fear of hastening death12

1. Terminal pain management (4)Question 10: Doctors fail to give adequate pain medication most often through fear of criminalprosecution for hastening a patient's death.Stronglyagree +Agree39%Neutral21%Disagree40%Figure 10: Under-treatment of pain for fear of criminal prosecution for hastening death13

2. Withholding and withdrawal ofpotentially life-sustaining treatment (1)• Terminology– Withholding, withdrawal – “Passive euthanasia”– Substitute/proxy/surrogate decision-maker– Unilateral refusal to treat• Ethics– Moral right to die a natural death of individuals in aterminal phase of dying– Futile treatment inappropriate(A) Competent persons• Autonomy, well-being, life, dignity• Autonomy – Individualism and community• Not merely biological life(B) Incompetent persons without advance directives• Clinically dead; PVS; rudimentary/no consciousness (Case Study 1)14

2. Withholding and withdrawal ofpotentially life-sustaining treatment (2)• Law(A) Competent persons•Section 7 of National Health Act 2003– Consent needed for all treatment, byimplication also for life-shortening treatment –Contemporaneous refusal• Legal clarification needed– Confirm that it covers potentially lifeshorteningrefusal of treatment– Withholding and withdrawal identical– Artificial nutrition and hydration– Mature, competent minors– SALC’s draft bill of 199815

2. Withholding and withdrawal ofpotentially life-sustaining treatment (3)• Law (continued)(B) Incompetent persons without advancedirectives– Substitute decision-making– Section 7 of the National Health Act 2003 makesprovision for• Mandating/appointing a substitute decision-making• Substitute decision-making without a mandate– List of substitutes16

2. Withholding and withdrawal ofpotentially life-sustaining treatment (4)• Law (continued)– Legal clarification needed• Powers, formalities• Status of substitute• Standard of care for medical practice versus futiletreatment• More than one substitute• Kinds of incompetence and clinical judgment(especially lack of higher brain function – See CaseStudy 1 on next slide)• Unilateral withholding/withdrawal of futile treatment• Depression• Severely defective newly born infants• SALC Reports draft bill of 199817

Withholding and withdrawing treatment – Case Study 1:Irreversibly non-responsive octogenarian patient in ICU• Mr X is an octogenarian male patient who is for allpractical purposes non-responsive to outside stimuli. Heonly shows occasional signs of rudimentary consciousness,his condition appears irreversible, and he shows no signs ofimprovement. He has been occupying a neurology intensivecare unit (ICU) bed for two years. He receives multiple dailymedications and is given physiotherapy daily, but his limbsremain rigid. He is treated aggressively with antibioticswhenever he contracts an infection. Three specialists visithim on an almost daily basis.• Mr X’s family wants everything done for him. His tophealthcare plan has paid all his medical bills, amounting toover R12 million.18

3. Advance directives (1)• Terminology– Advance directive• Ethics•Living will•Durable power of attorney for healthcare– Moral right of individuals to future controlover their bodies– Extension of contemporaneous decisionmaking(autonomy, well-being, dignity)19

3. Advance directives (2)• Law– Section 7 of the National Health Act 2003• Can indirectly infer living will• Allows for appointment of surrogate decision-maker– Advance directives need legal clarification• Recognise terminology• Iron out many practical questions about theirrequirements, status and operation– Treatment potentially hastening death?– Overriding a substitute?– Futile treatment sought by substitute?– More than one substitute – Clashes?– Immunity from criminal and civil liability?20

3. Advance directives (3)Question 12: Legalising advance directives (a living will and a health-care power of attorney) is a positivestep in clarifying a patient’s wishes regarding treatment at the end his or her life, or when incompetent.Strongly agree+ Agree75%Neutral13%Disagree12%Figure 12: The value of advance directives21

4. Assisted dying (1)• Terminology– Assisted dying – Wider and narrower– Assisted suicide– Euthanasia• Ethics• Root meaning• Passive and active (perspective of assister)• Voluntary, non-voluntary, involuntary (perspective of patient)– Moral right to assisted dying of individuals in the terminalphase of dying– Arguments for: (1) Personal autonomy; (2) Suffering; (3)Moral equivalence– Arguments against: (1) Playing God; (2) Professionalresponsibilities: (3) Slippery slope22

4. Assisted dying (2)• Law– Assisted dying is unlawful– The ethics of legalising assisted dying– Ethical dilemma resolved by Constitution• Persons – Ethical disagreements about practices• Citizens - Ethical consensus aboutdecriminalising on basis of Constitution’s spirit,values and rights– Legal reform needed– Requires interpreting Constitution’s – The right to life• Intimately tied to the right to dignity• Balancing individual autonomy and society’s (state)interest in protecting human life– Common law and case law• Hartmann case 23

4. Assisted dying (3)• Law (continued)– Reopening the legislation debate• Judge Chaskalson – Limited relevance of public opinion• Soobramoney case– Three options in the SALC Report’s draft bill• Option 1: Remains unlawful• Option 2: Decriminalise – Doctor and patient decide• Option 3: Decriminalise – Committee decision24

4. Assisted dying (4)• Law (continued)– Outstanding legal issues• Incremental approach?• Non-voluntary euthanasia• Terminal illness only?• Safeguards against abuse• Who may assist?• Mature, competent minors25

Assisted dying unnecessary?• Argument– We do not need to legalise assisted dyingbecause pain management and withholdingand withdrawal of potentially life-sustainingtreatment are adequate instruments to carefor the dying. Moreover, Assisted dying wouldbe too risky to control and people would losetrust in the medical profession.• Do you agree?– See Case Study 3 (next slide)26

Assisted dying – Case Study 3: Young woman dyingof ovarian cancer (adapted from a real-life case )• A 20-year-old woman is dying of ovarian cancer. She is sufferingfrom unrelenting vomiting, apparently as the result of sedation.Her breathing is loud and laboured. She is emaciated, her eyesare hollow, and she appears much older than 20. She isreceiving nasal oxygen, has an IV, and is sitting in bed sufferingfrom what is obviously severe air hunger. She weighs 37kilograms, has suprasternal and intercostal retractions with herrapid inspirations, has not eaten or slept in two days, has notresponded to chemotherapy, and is being given supportive careonly.• When her illness had initially turned for the worse, she discussedat length, with her attending physician and closest family, whather preferences would be should her disease progress to thispoint. Her mother sits with her, holding her hand. The youngwoman’s physician enters the room. Her only words are, “thetime has come”. She looks at her mother, who nods.27

4. Assisted dying (6)Question 1: (Imagine assisted dying is lawful, with safeguards.) If a competent, terminally ill patient whois rational and reflective repeatedly asks you to inject drugs to end his or her life, are there any situationswhere it would be acceptable for you to give a lethal injection?YES25%Uncertain15%Definitely not60%Figure 3: The ethics of doctor-assisted suicide28

4. Assisted dying (7)Question 2: (Imagine assisted dying is lawful, with safeguards.) If a competent, terminally ill patient whois rational and reflective repeatedly asks you to prescribe drugs so the patient can end his or her life byoverdose, are there any situations where it would be acceptable for you to prescribe the drugs needed?YES27%Uncertain16%Definitely not57%Figure 4: The ethics of voluntary active euthanasia29

4. Assisted dying (8)Question 3: (Imagine assisted dying is lawful, with safeguards.) Can you imagine any future illness badenough that you might wish either to self-prescribe medications to end your own life intentionally or tohave a colleague intentionally end it for you?YES43%Uncertain20%Definitely not37%Figure 5: Medical practitioners choosing assisted dying for themselves30

4. Assisted dying (9)Question 4: In the course of your medical practice, has a patient ever asked you to hasten his or herdeath?No66%Yes34%Figure 6: Patients asking doctors to hasten their death31

4. Assisted dying (10)Question 7: The law should allow a doctor to provide drugs to a rational and reflective terminally illpatient who requests assistance with committing suicide.Neutral11%Stronglyagree + Agree38%Disagree51%Figure 7: Legalising doctor-assisted suicide32

4. Assisted dying (11)Question 8: The law should allow a doctor actively to end a patient’s life if a rational and reflectiveterminally ill patient asks the doctor to administer a lethal injection.Neutral13%Stronglyagree + Agree34%Disagree53%Figure 8: Legalising voluntary active euthanasia33

4. Assisted dying (12)Question 11: If a patient with intractable and unbearable pain and suffering, who is not terminally ill,asks me to end his or her life, I would do so if doctor-assisted dying were legal.Stronglyagree + Agree12%Neutral7%Disagree81%Figure 11: Terminal illness as a requirement for assisted dying34