The Last Right

by Marianne Thamm

  Let us call the SALC’s view that there is a significant, perhaps unbridgeable, moral difference between refusal of potentially life-sustaining treatment and a request for assisted dying (assisted suicide and voluntary euthanasia), where the former is legally justified but the latter not, the “difference thesis”.

  The difference thesis stands in opposition to the “equivalence thesis”, supported in this Position Paper.

  The difference thesis cannot be merely asserted but needs arguments in its support. Nor can the matter be decided by majority public opinion, for the very same reasons that termination of pregnancy and abolition of capital punishment were not so decided.

  Having committed to the difference thesis, the SALC Report puts forward four arguments against legalising assisted dying.

  First, the “Commission is of the opinion that the arguments in favour of legalising voluntary euthanasia [assisted dying] as set out above are not sufficient reason to weaken society’s prohibition of intentional killing as entrenched in section 11 of the Constitution and which is considered to be the cornerstone of the law and of social relationships.”

  Certainly, the right to life in the Constitution needs to be interpreted, taking account of life being at an end or not worth living (devoid of quality), and of the free and legitimate preferences of the person whose life it is. If assistance with dying would be unconstitutional, a law legalising it might be overturned by the Constitutional Court, if tested.

  But what evidence does the SALC have for the claim that legalising assistance with dying would undermine the legal prohibition of intentional killing in general, thus eroding society’s commitment to the special moral value of human life?

  If withholding and withdrawal of potentially life-sustaining treatment does not have that consequence, why would assistance with dying? Surely, the decisive consideration is that all of these practices would take place in a compassionate, humane, merciful and controlled medical environment. It has nothing in common with killing people because one intends to harm them.

  One can understand that widespread breakdown of the civil order, in which murder is unchecked and, in the public eye, would weaken society’s prohibition against killing. But why would assistance with dying in a medical context, where compassion and mercy are the driving elements, have such an effect?

  Without any supporting evidence, this argument has no merit. In fact, we have good evidence suggesting quite the opposite, namely, that when public policy is disrespectful of human life, then, far from eroding society’s commitment to the special moral value of human life, society might rally to the defence of human life. Thus, civil society went right up to the Constitutional Court to force government to change its policy in respect of mother-to-child transmission of the HI virus.

  Second, the SALC Report argues that “[w]hilst acknowledging that there may be individual cases in which euthanasia [assisted dying] may be seen by some to be appropriate, these cases cannot reasonably establish the foundation of a general pro-euthanasia policy”. At issue is not whether such cases are few, but that every human being will die and may die, in the absence of a protecting and merciful law, while suffering intractable and unbearable pain and distress. Although exceptions indeed make bad law, the constant presence of terminal suffering is hardly an exception but part of the human condition.

  Third, the SALC Report contends that “[i]t would be impossible to establish sufficient safeguards to ensure that euthanasia were truly voluntary and would not inevitably lead to involuntary and compulsory euthanasia”. This is a factual or empirical claim, in fact it amounts to three empirical claims about the efficacy of safeguards against possible abuse of decriminalised assisted dying, namely, that there is no way to determine whether safeguards designed to eliminate bad consequences or abuse would (1) ensure that a choice is truly voluntary; (2) prevent involuntary euthanasia; and (3) prevent compulsory euthanasia.

  These claims can be rebutted. Factual claim (1) – we cannot determine whether a choice is truly voluntary – could mean that we are never able to “get into another’s head”.

  If this is what is meant, then, of course, the whole of criminal law, premised on voluntariness, accountability and liability, would have its foundation taken from underneath it. Our everyday understanding, even of those closest to us, as well as psychology, would be in trouble.

  Or is there somehow a difference between voluntary and “truly” voluntary and, if so, what might that be? Truth and justice would be better served if we trust our tested criteria of understanding other minds and applying them to requests for assistance with dying, rather than to treat such requests as somehow exceptional and beyond the pale.

  As for factual claim (2) that foresees a real risk of involuntary euthanasia, we now have significant data that was unavailable in 1998, most notably from the implementation of physician-assisted suicide in the state of Oregon, where meticulous records are being kept and annual reports are open for scrutiny.

  And there is new data from Western Europe, where, among others, the Netherlands decriminalised assistance with dying following a tacit public-policy understanding of non-prosecution for assistance with dying.

  Factual claim (3) cites compulsory euthanasia as a possible unpreventable consequence of legalising assistance with dying. It is hard to imagine what this could mean other than a possible Nazi “euthanasia” scenario, with “compulsory” referring to the power of the state. This alarmist claim requires supporting evidence. Again, even holocaust survivors dismissed a suggestion of a similarity between the Nazi programme and euthanasia in a compassionate, medical context. Our Constitution contains adequate checks and balances to prevent such a far-fetched doomsday scenario, especially given effective and enforced safeguards built into legislation. This kind of argument hardly merits consideration in an honest public debate.

  Fourth and last, the SALC Report argues that “[d]ying should not be seen as a personal or individual affair, the death of a person affects the lives of others.

  The issue of euthanasia is one in which the interest of the individual cannot be separated from the interest of society as a whole”. Indeed, the manner in which a person dies affects the lives of others, but so do their suffering and frustrated appeals for assistance.

  So the “affects” are not only those that the SALC chose to consider. And indeed, while balancing of individual and state interests is a core issue in a democracy the SALC’s position could imply that state interests by implication trump individual interest should they clash. Again, this flies in the face of the termination of pregnancy legislation.

  So, Option 1, favoured by the SALC Report, says that assisted dying should remain unlawful. Of course it is a position worthy of serious consideration and debate. But the arguments in its support are weak, largely leaning on unproven factual claims made without interrogating credible evidence.

  Option 2

  Option 2, “decision-making by the medical practitioner”, proposes legislation enabling a medical practitioner to assist a patient with dying by “administering” (voluntary euthanasia) or “providing” (physician-assisted suicide) a “lethal agent”, provided certain safeguards, aimed at preventing abuse, are met.

  Option 2 poses two further points for debate.

  First, its wording, namely, that a medical practitioner “shall give effect to the request” may suggest that medical practitioners have no choice but to honour the patient’s request for assistance with dying if the safeguard conditions are met.

  By contrast, South Africa’s abortion legislation as well as Option 3 (below) state that a medical practitioner “may” act on a patient’s request, thus affirming an implicit conscience clause.

  Second, Option 2 does not mention mental or dementing illness, but the reference to “intractable and unbearable suffering” probably covers these.

  Option 2 can be strongly defended ethically. It also may have considerable constitutional force, but this question has not come before the Constit
utional Court yet.

  Within Option 2 are possibilities that may be ethically preferable to maintaining the legal status quo that outlaws all forms of assisted dying (Option 1).

  For example, although there is no intrinsic ethical difference between assisted suicide and voluntary euthanasia, a public policy that decriminalises only assisted suicide (or, more narrowly, doctor-assisted suicide) may be a pragmatic legislative compromise if legalising voluntary euthanasia would meet formidable resistance.

  However, it may be unfair and crueller to some patients to decriminalise assisted suicide only, and not also voluntary euthanasia. Patients in the terminal phase of ALS (amyotrophic lateral sclerosis) may be unable to commit suicide due to paralysis, with death by asphyxiation a real possibility, while other terminal patients may have the necessary mobility to commit assisted suicide.

  Option 3

  Option 3, “decision-making by a panel or committee”, proposes that euthanasia (assisted dying) be regulated through legislation permitting a multi-disciplinary ethics committee to consider requests for euthanasia on the basis of set criteria.

  This option draws from the practice in the Netherlands prior to the passing of assisted-dying legislation some years after the release of the SALC Report.

  Option 3, while certainly vastly preferable to the legal status quo, is an unnecessarily cumbersome response to a request for assistance with dying.

  First, who would constitute an ethics committee and how would it function? Who elects or appoints the committee? Could someone who is in principle opposed to physician-assisted suicide and voluntary euthanasia serve on such a committee? How would decisions be taken, for example – by majority vote or consensus?

  Second, should not a provision be made to appeal the decision of an ethics committee?

  Third, and most significantly, it raises issues of distributive justice. Since a committee approach is premised on the availability of additional resources, it could lead to discrimination against patients in areas with poor access to healthcare facilities.

  Ethics committees, whose membership requires, among others, three medical practitioners, a lawyer, and a member of a multidisciplinary team, are likely to be limited to tertiary, and therefore urban, centres while rural areas may not have an “ethics capacity”.

  In the final analysis, Option 3 would be an unjustifiably paternalistic approach that would take control away from the patient and medical practitioner and transfer it to a group outside the more intimate doctor-patient relationship.

  Attending medical practitioners can display the same caution and circumspection as a committee, and, together with patients and their families they would be able to focus on the tragic choices at hand, while avoiding general debates about the ethics of an already decriminalised practice, which may be the fate of an ethics-committee approach.

  Issues to be clarified if the Legalisation Route is to be followed

  If legalising assisted dying follows the Option 2 route – which is what this Position Paper argues for – a number of issues would need further discussion to settle the boundaries of what would be permissible, such as the following:

  Should the moral argument that there is no intrinsic ethical difference between assisted suicide and voluntary euthanasia have any bearing on public policy? In other words, should public policy review pursue an incremental approach and have assisted suicide decriminalised, rather than having both forms of assistance with dying either rejected or adopted?

  In this regard, the SALC Report observes that although there is no general intrinsic moral difference between the two, the distinction could have some value in practice since there is an important evidentiary difference between the two, with assisted suicide being a better test of the voluntariness of the choice to die or of patients’ resolve to end their lives.

  However, the report concludes that both are, legally speaking, versions of active euthanasia (assisted dying) and should be dealt with accordingly. Of course, this goes against the course taken, for example, by the citizens of the states of Oregon and Washington in the United States, where assisted suicide, but not voluntary euthanasia, was decriminalised.

  The legal position regarding non-voluntary euthanasia needs to be clarified. Non-voluntary euthanasia of incompetent adults as well as non-voluntary euthanasia of seriously and irreversibly defective newly-born infants are arguably more controversial than voluntary euthanasia.

  In a request for assistance with dying, should the illness at issue be a terminal illness or should an “intractable and unbearable illness” also be a ground for a request, that is, “a bodily disorder that (1) cannot be cured or successfully palliated, and (2) that causes such severe suffering that death is preferable to continued life”?

  Significantly, both Options 2 and 3 of the SALC Report’s draft legislation refer to “terminal or intractable and unbearable illness”. So the question is: Should a request for assistance with dying also be an option for persons who are neither terminal nor in physical pain? Among others, this question relates to (1) persons who have a terminal disease but are not yet in the terminal phase, for example, an ALS patient, and (2) persons suffering from depression, a dementing disease or mental disorder but are nevertheless competent to decide about their own continued existence. Significantly, neither Option 2 nor Option 3 – that would decriminalise assisted dying – insists on a patient being terminally ill but also recognise “intractable and unbearable illness”.

  Strictly legally enforced safeguards to prevent undesirable consequences or abuse of decriminalised assisted dying would need to be carefully formulated. In addition, slippery-slope considerations that might be peculiar to South Africa would need to be debated head-on, for example, South Africa’s multiculturalism- and multilingual-population constitution and consequent possible breakdowns or misunderstandings in communication; educational deficits of many citizens that might limit full understanding of the implications of practices of assistance with dying; differential access to scarce, quality healthcare resources and consequent issues of distributive justice; and history of racial discrimination and consequent distrust and elevated risk of abuse.

  Who should assist with dying? Why should not close family or friends get directly involved, while still maintaining medical professional oversight and complying with all other safeguard provisions? Both Options 2 and 3 require that only medical practitioners may carry out the request.

  The legal position of mature, competent minors in respect of assisted dying would need to be clarified. Option 2 is open for patients over the age of 18, but, significantly, Option 3 does not have this limitation.

  In summary, we have very persuasive ethical and constitutional grounds to debate and seriously consider the inclusion of assistance with dying – assisted suicide and voluntary euthanasia – in comprehensive end-of-life decision-making legislation, together with provisions clarifying unambiguously the legal position in respect of comfort care, withholding and withdrawal of life-sustaining decision making, and advance directives.

  Conclusion

  This Paper argues for statutory legal clarity and reform in respect of the following four end-of-life decision-making practices, each involving a moral right of a terminally ill person, and a corresponding moral obligation of interested parties, such as caregivers, family, and the state:

  Terminal pain management – The right to be free from unnecessary suffering;

  Withholding and withdrawal of potentially life-sustaining treatment – The right to a natural death;

  Advance directives – The right to future control over one’s body; and

  Assisted dying: assisted suicide and voluntary euthanasia – The right to assisted dying.

  Whereas the first three are relatively uncontroversial and should be guided by the applicable standard of care for responsible medical practice, South African law is not sufficiently clear to provide adequate comfort and protection to medical practitioners and substitute decision makers.

&nb
sp; This can be rectified by tabling a comprehensive end-of-life decision-making bill before Parliament, thus creating an enabling environment for all decision makers in the tragic but inevitable circumstances that are a natural part of life.

  The fourth, assisted dying (assisted suicide and voluntary euthanasia), is unlawful in South Africa and can only be decriminalised through legislative reform.

  There are very strong arguments to suggest that such legislative change would be consistent with the letter and spirit of the Constitution’s Bill of Rights, if not required by it, as was the case with abortion.

  In sum, there should be a public debate on end-of-life decision-making, resulting in a comprehensive end-of-life decision-making bill, along the lines of the draft bill, End of Life Decisions Bill 1998, included in the SALC Report of 1998.

  It is quite understandable that some would argue that we should not legislate in this area because all possible situations can be handled by means of the other three options, rendering assisted dying redundant.

  The counter-argument, however, is persuasive: people justifiably want greater control over the time and manner of their death and, for example, elect not to die in a drug-induced state of semi-consciousness or unconsciousness.

  They regard doing so as an assault on their autonomy and dignity, and simply require compassionate recognition in their dying distress. And, crucially, with justification, they do not regard such recognition of their autonomy as anti-community or selfish.

  Those who find such assistance with dying an affront to their personal conscience and religious beliefs should consider that we live in a constitutional democracy which seeks to balance individual and state interests.

  Consequently, what some regard as unethical may not be unlawful. On the contrary, there may be an ethical duty to decriminalise what some regard as unethical. This is part of the trade-off of a peaceful coexistence in a heterogeneous society.