Select Committee on Assisted Dying for the Terminally Ill Bill Written Evidence


Memorandum by Dr Helga Kuhse

  As a researcher in the field of medically assisted dying, I am writing in support of the Assisted Dying for the Terminally III Bill [HL].

  Before doing so, allow me to introduce myself. I am the former Director of the Centre for Human Bioethics and Associate Professor at Monash University. I am now semi-retired and currently hold the position of Senior Honorary Research Fellow at the University. Throughout my professional career, spanning nearly 30 years, I have researched various fields within bioethics. Ethical issues, as they arise at the end of life, have been one of my special interest areas. I have published more than 150 professional articles and 12 books in the field of bioethics, including many publications on medical end-of-life decisions.

  I am co-founder of the International Association of Bioethics and have served as a Consultant on medical end-of-life decisions and euthanasia

    —  to the Human Rights Commission of Australia;

    —  to the Government of the Australian State of Victoria;

    —  to the Select Committee on Euthanasia to the Legislative Assembly of the Northern Territory of Australia;

    —  as an Expert Witness for the Northern Territory of Australia [on its voluntary euthanasia law] before the Supreme Court;

    —  as a Witness appearing before the Social Development Committee of the Parliament of South Australia.

  My research into medical end-of-life decisions and other ethical issues has been supported by competitive grants from the Australian Research Grants Foundation, The Australian Research Council, The National Health and Medical Research Council and Monash University.

  In the course of my thinking and research in the area, I have reached the conclusion that there are two broad grounds for legalizing direct help in dying to terminally ill patients who request such help.

  (1)  The first reason is an ethical reason, in the narrow sense of the term. With many others, I take the view that it is wrong to deny a terminally ill and suffering patient direct help in dying. To deny this right to competent, well-informed patients is to fail to treat them as persons and as autonomous moral agents. It shows lack of moral respect for persons as persons.

  (2)  The second cluster of reasons encompasses ethical grounds in the wider sense of the term. It relates to issues of public policy, to questions of justice and fairness, and to control and regulation.

  My attached submission will focus on Point 2. My reason for focusing on the second, rather than the first, point is this:

  In multicultural and pluralist societies, such as Britain or Australia, people give very different answers to questions such as whether voluntary euthanasia, stem-cell research, or organ donation (to give just three examples) are morally right or wrong. Because these different answers have their source in different value systems, they cannot be shown to be true or false, in the ordinary sense of those terms.

  This raises the question of an appropriate social response. Given that there is fundamental disagreement about the morality of a practice, how should modern pluralistic and liberal societies respond to it: Should they allow or prohibit the practice, and on what grounds?

  It is now widely accepted that personal autonomy or liberty is a very important value and that it is inappropriate for the state to either adopt a paternalistic stance towards its mature citizens, or to restrict their freedom through the enforcement of a particular moral point of view. Only if one person's actions cause harm to others is it legitimate for the state to step in, and to bring in laws that restrict individual liberty. As John Stuart Mill put it in his famous essay On Liberty: "The only purpose for which power can be rightfully exercised over any member of a civilised community, against his will, is to prevent harm to others . . . Over himself, over his own body and mind, the individual is sovereign."

  If this standpoint is accepted, it follows that the House of Lords, in its deliberation on the Assisted Dying for the Terminally Ill Bill, should not so much concern itself with the question of whether or not it is intrinsically morally right or wrong to ever render direct help in dying, but with rather the issue of Public Policy: whether there are good grounds for retaining the prohibition on direct help in dying for terminally ill patients who request such help.


INTRODUCTION

  In this submission I shall focus on two clusters of problems that may be grouped under the following two headings:

1.  THE PROBLEM WITH DRAWING BOUNDARIES

  Existing law prohibits the intentional termination of life. This assumes that a morally relevant and/or practically workable distinction can be drawn, in end-of-life patient-care, between cases of the intentional termination of life, on the one hand, and other end-of-life decisions—such as non-treatment and palliative care decisions—that are tolerated by the law.

  This submission will show that the assumed distinction between lawful and unlawful medical end-of-life decisions is marred by serious conceptual and practical problems.

2.  THE PROBLEM WITH PROHIBITION

  It is often assumed that a restrictive public policy approach that prohibits direct or intentional help in dying to the terminally ill who request it ("assisted dying", as defined in the Assisted Dying for the Terminally Ill Bill), is more protective of patients as a whole than a liberal approach. As an earlier House of Lords Select Committee put it: "The prohibition (of intentional killing) is the cornerstone of law and of social relationships. It protects each of us impartially, embodying the belief that all are equal. We do not wish that protection to be diminished."[135]

  This submission will show that empirical evidence challenges this belief. Patients as a whole appear to be better protected by laws that regulate assisted dying than by laws prohibiting it.

  Terminology: My discussion is limited to competent, terminally ill patients, as defined in the Bill; and I shall use the term "assisted dying" to refer to both medically assisted suicide and voluntary euthanasia for the terminally ill.[136]

1.  THE PROBLEM WITH DRAWING BOUNDARIES

  Around 40 per cent and more than 80 per cent of deaths are preceded by a medical end-of-life decision, that is, an action or an omission undertaken by the doctor in the knowledge or belief that the patient will die earlier as a consequence of that decision than she or he would if that decision were not taken. In other words, with or without the patient's consent, doctors are taken courses of actions that will often determine when and how a patient dies.

  Doctors who engage in these end-of-life decisions are not necessarily acting contrary to the law. Rather, in many countries it is lawful for doctors to implement decisions that will shorten the patient's life. Under certain circumstances, doctors can lawfully withhold or withdraw life-sustaining treatment, and a consensus is evolving according to which doctors may administer life-shortening pain of symptom control, in full knowledge of their "double effect".

  There are a number of reasons why the present situation of permitting some but seemingly prohibiting other medical end-of-life decisions is problematic:

Discrimination

  Non-treatment decisions:

  Contrary to what the House of Lords Select Committee on Medical Ethics stated in its Report[137], the continued prohibition of assisted dying in the practice of medicine does not "protect [ . . . ] each of us impartially". Rather than treat all patients impartially, and give expression to "the belief that all are equal", laws that prohibit assisted dying are, on the face of it, discriminatory: they allow some patients—those who are fortunate enough to require life-support—to take control of their dying process, and to shorten their suffering; they do, however, deny the same rights or opportunities to others: those who are in the unfortunate position of not requiring life-support, but whose suffering is just as great, and may be greater, than that experienced by patients in the first group.

Palliation

  Modern palliative care can help many patients, but can unfortunately not help all patients. At the end of life, some 15-20 per cent of patients referred for palliative care may experience intolerable pain, delirium, shortness of breath, nausea, persistent vomiting that is refractory to the usual therapies.[138] Some patients can be helped only by what has been termed "terminal sedation", but terminal sedation, it has been argued, is a form of assisted dying indistinguishable in all its relevant features from currently prohibited forms of the intentional termination of life[139], with some doctors referring to it as "slow euthanasia"[140].



  This leaves one with the following conclusion:

    (a) If terminal sedation is rejected as a morally licit and lawful means of aiding a patient's death, then patients suffering refractory pain cannot be helped by available medical care; and some of these patients may also feel discriminated against on the grounds that in addition to not being able to refuse treatment, they are also experiencing intolerable and unrelievable pain and suffering.

    (b) If terminal sedation is accepted as lawful, then doctors will be permitted to intentionally end the lives of patients "slowly" and in a—for many patients, relatives, and health care professionals—distressing way, but not quickly and in according with the patient's own considered wishes, values and beliefs. As one well-known physician has put it:

        In many cases, terminal sedation amounts to euthanasia because the sedated patient often dies from the combination of two intentional acts by the physician—the induction of stupor or unconsciousness and the withholding of food and water . . . It is the physician-created state of diminished unconsciousness that renders the patient unable to eat, not the patient's underlying disease.[141]

THE PROBLEM WITH "INTENTION"

  How can one be sure what doctors intend to bring about when they engage in end-of-life decisions? Under the Principle of Double Effect, an outwardly identical action or omission, such as administering a potentially life-shortening dose of a palliative agent, or the withdrawing of life-support, can be a case of impermissible assisted dying or the intentional termination of life, depending on what the agent intends to bring about. Since intentions are internal mental states, often only the doctor herself will know what she intended to do when she did what she did.

  The legal presumption is that doctors administering palliative care to dying patients, and those who withhold or withdraw life support from the terminally ill, are not intentionally terminating these patients' lives. But what do doctors actually intend when they engage in end-of-life decisions?

  A number of important, comparable nationwide studies—conducted in the Netherlands, Australia and Belgium—asked doctors about their intentions; they can shed some light on this question. Here my main focus will be on some data from the Australian study. The Committee may want to access the original studies.[142]

Non-treatment decisions:

  The study found that of all Australian deaths in the period, 28.6 per cent were preceded by a non-treatment decision that in the doctors' opinion would hasten the patients' death.

  In 24.7 per cent of all deaths, the doctors acted with the intention of shortening the patient's life; in 3.9 per cent of all deaths was there no intention to shorten the life of the patient.

Palliation

  30.9 per cent of all Australian deaths were preceded by a palliative care decision. 24.4 per cent did not involve an intention to hasten death; 6.5 per cent involved a partial intention to hasten death.

The Administration of Prescription of drugs, Administered or prescribed with the explicit intention of hastening the end-of-the patient's life:

  The study found that 5.3 per cent of all Australian death involved this form of medically assisted dying.

  Setting partially intended deaths to one side, this means that approximately every third patient's death was preceded by a decision that was directly intended to result in their death.

  This shows that existing laws prohibiting the intentional termination of life are not being observed by Australian doctors. While the prohibition of the intentional termination of life may prevent some doctors from using fast-acting non-therapeutic drugs, prohibition does not, and cannot, prevent doctors from intentionally ending the lives of suffering patients in some other "lawful" ways.

  This brings us to the cluster of problem associated with prohibition.

2. THE PROBLEM WITH PROHIBITION

Prohibition does not work

  The reason for the non-workability of the prohibition of the intentional termination of life lies in the mainstream legal assumption that doctors do not intend all the foreseen "natural" consequences of their actions and omissions. Rather, existing laws rely, at least in part, on a subjective notion of intention. If the notion of intention where understood in a wide objective sense, then the death resulting from each and every deliberate medical-end-of-life decision, to the extent that it was not accidental or inadvertent — would be taken to be the intended consequence. Since this is not the mainstream view, it entails that current regulatory frameworks and laws are at least to some extent based on a subjective notion of intention.

  This makes for the extreme malleability and "constructability" of medical end-of-life decisions and with this, for the unworkability of existing laws.[143] Existing laws can neither prevent doctors from intending what it is impermissible to intend—the death of a suffering and dying patient, for example—nor effectively prevent them from implementing those intentions. A doctor who does not, for whatever reason, wish to administer a non-therapeutic lethal drug to aid the patient's passing, will often be able to achieve the same result by using a therapeutic drug, by a non-treatment decision, or both.



Lack of transparency and consent

  The legal focus on the doctor's intention in medical end-of-life decisions offers neither transparency nor regulatory protection. Rather than encourage honesty and openness in the doctor/patient relationship, it encourages, self-deception and hypocrisy, and seems to lead doctors to act without their patients' consent.

The Slippery Slope—Which way does it slope?

  It has often been claimed that the acceptance of assisted dying [voluntary euthanasia], at the patients' request, will lead to non-voluntary or involuntary euthanasia. The British academic J Keown, for example, has argued that this is illustrated by evidence emerging from the Netherlands, where doctors have been able to practice voluntary euthanasia for a number of years: ". . . since [voluntary] euthanasia became widely tolerated in the Netherlands, thousands of patients have had their lives intentionally shortened without an explicit request."[144]

  The claim by Keown and others that voluntary euthanasia leads to non-voluntary euthanasia is not born out by empirical studies. Rather, comparable international empirical studies suggest that the acceptance assisted dying at the patient's request, is associated with fewer—not more—cases of non-voluntary euthanasia.

  The Australian survey into medical end-of-life decisions was modelled on the 1996 Dutch study.[145] One of the central findings of the Australian study was that 3.5 per cent of all Australian deaths result from the administration of drugs explicitly intended to end patients' lives without their consent. The figure was five times higher than in the Netherlands, where it was 0.8 per cent and 0.7 per cent, respectively. [The asymmetry between the Dutch and Australian figures is also born out by a comparable Belgium study Belgium doctors administered drugs with the explicit intention of ending the patient's life in 3.2 per cent of all deaths.[146]

  These findings [for further important data, please consult directly the Dutch, Australian and Belgium studies] raise the question of why more Australian [and Belgium] than Dutch doctors chose intentionally to end the lives of some of their patients without the patient's consent. One plausible explanation is that since existing laws prohibit the intentional termination of life, doctors are reluctant to discuss medical end-of-life decisions with their patients lest these be construed as collaboration in the intentional termination of life.

CONCLUSION

  To conclude: there appears to be good evidence to suggest that laws prohibiting the intentional termination of life, but permitting the withholding and withdrawing of treatment and the administration of life-shortening palliative care, do not prevent doctors from intentionally ending the lives of some of their patients.

  There are also good grounds for believing that these laws are discriminatory and unjust, that they encourage hypocrisy and lack transparency, and the unconsented—to termination of patients' lives.

  For the purposes of public policies and laws governing medical end-of-life decisions for competent patients, we should stop asking whether a doctor "intends" death or merely "foresees" it, whether death comes about as the result of an action or an omission, or as the result of administering a slow-acting therapeutic or a quick acting non-therapeutic drug.

  What is needed is a single regulatory framework for all medical end-of-life decisions for competent patients, a framework that does not rely on the largely unworkable notion of intention, but on the substantive notion of respect for the patient's autonomy, which finds expression in the procedural requirement of consent. Under such a framework, patients and doctors would be free to jointly decide on a mode of dying that best meets the needs of patients. For many patients this would involve foregoing life-sustaining treatment, and accepting palliative care. But for some patients this would also involve direct help in dying, through the prescription or administration of a drug.

2 August 2004




135   House of Lords, Report of the Select Committee on Medical Ethics, Vol 1, Report, London: HMSO, 1994, p 48. Back

136   While some writers hold that the two practices are morally distinct as far as the role of the doctor is concerned, I do not share that view. A doctor who prescribes a lethal drug, at the patient's request, is as morally responsible for the foreseen outcome-the patient's death-as a doctor who, at the patient's request, administers a lethal drug. I also believe it would be bad public policy to limit legislation to medically assisted suicide. Not all patients are capable of ending their own lives, and attempts at suicide may fail. Back

137   See note 1. Back

138   See eg, N I Cherny, R K Portenoy, "Sedation in the Management of Refractory Symptoms: Guidelines for Evaluation and Treatment", Journal of Palliative Care:, Vol 10, (2), 1994, pp 31-38; David Orentlicher: "The Supreme Court and Physician-Assisted Suicide-Rejecting Assisted Suicide but Embracing Euthanasia", New England Journal of Medicine, Vol 337 (17), 23 October 1997. Back

139   See eg, Helga Kuhse: "Why Terminal Sedation is no Solution to the Voluntary Euthanasia Debate", in T Tannsjo: Terminal Sedation: Euthanasia in Disguise?, Kluwer, 2004. Back

140   See eg, J A Billings, D Block: "Slow euthanasia", Journal of Palliative Carer, Vol 12(4), 1996, pp 21-30. Back

141   David Orentlicher, see footnote 4. Back

142   Helga Kuhse, Peter Singer, Peter Baume, Malcolm Clarke and Maurice Rickard: "End-of-life decisions in Australian medical practice, Medical Journal of Australia, Vol 166, 17 February 1977; P J van der Mass, G van der Wal, I Havercate et al: "Euthanasia, Physician-Assisted Suicide an d Other Medical Practices Involving End of Life in the Netherlands, 1990-95", New England Journal of Medicine, Vol 335, 1966, pp 1699-05. Luc Deliens, Freddy Mortier, Johan Bilsen, et al: "End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey", The Lancet, Vol 356, 25 November 2000, pp 1806-11. Back

143   John Griffith: "The Regulation of Euthanasia and Related Medical Procedures that Shorten Life in the Netherlands", Medical Law International", Vol 1, 1994, pp 137-158. Back

144   As quoted in the Australian Senate and Constitutional Legislation Committee report: Consideration of Legislation Referred to the Committee-Euthanasia Laws Bill 1996, Canberra: The Parliament of the Commonwealth of Australia, March 1997, p 103. Back

145   See footnote 142. Back

146   See footnote 142. Back


 
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