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

Memorandum by Dr Colleen Cartwright and Associate Professor Malcolm Parker


1(a)   The authors

  1.  Dr Colleen Cartwright

   Senior Research Fellow

   Academic Unit in Geriatric Medicine

   School of Medicine, The University of Queensland

   Princess Alexandra Hospital

   Brisbane Qld 4072

  2.  Associate Professor Malcolm Parker

   Associate Professor of Medical Ethics

   School of Medicine, The University of Queensland

   Mayne Medical School

   Herston Rd,

   Herston Qld 4006

1(b)   Background and experience

  We are members of a research team which has been investigating end-of-life issues for over 12 years, in Queensland and the Northern Territory (Australia) and in an on-going study with researchers in six European countries.

  At the beginning of our work, the team gave a commitment to stay professionally neutral on the issue of assisted dying. All questionnaires and other study material have had to pass the scrutiny of a multi-disciplinary advisory committee whose members were known to hold strong viewpoints both in favour of and against assisted dying. This has given our work credibility in the field.

1(c)   Reason for this submission

  The research has convinced the authors of this submission that legislation is necessary to legitimise and regulate practices which occur reasonably frequently, currently in a clandestine and sometimes inexpert manner. We stress that this submission represents our personal views and not necessarily those of other members of the research team, nor of the institution in which we work.

  If legislation is to be enacted to allow assisted dying for terminally ill patients, we believe that it should be as well-constructed as possible. Therefore, Part 2 of this submission addresses matters of content and structure in the Bill which we believe require amendment.

  In Part 3 we present additional information which we respectfully request the Select Committee to consider.


2(a)   Purpose of the Bill

  We contend that it is unnecessary and potentially counter-productive for the issue of pain relief to be included in a Bill concerning assisted dying. There is general agreement in most developed countries, and in all mainstream religions, that adequate pain relief should be provided to patients, including those who are terminally ill. Indeed, some countries have legislated a "right to palliative care" (Peretti-Watel et al, 2003), which of course includes provision of pain relief medication. Other countries, including Australia, have legislated for the protection of health care staff who provide palliative care, including pain relief, to terminally ill patients if there is concern that such care may hasten the death of the patient.

  Inclusion of the issue of pain relief in the purpose suggests that there is serious concern in the UK about inadequate relief of pain in terminal illness. If this is so, it requires urgent attention, both in professional education and in alerting the community to their right to receive adequate pain medication. Indeed, from a legal perspective, failure to provide adequate pain relief may be regarded as abuse or cruelty. However, we do not believe it belongs in this Bill; if it remains it may reinforce the notion that adequate pain relief is some form of euthanasia, which it clearly is not. In Australia and other parts of the world, this erroneous belief results in patients being left in pain at the end of their lives.

  However, if the issue of pain relief remains in the Bill, then the word "adequate" should be inserted before "pain relief medication" in the first paragraph, and Section 15 should be amended, as follows:

    —  Rather than a terminally ill patient being "entitled to request and receive such medication . . .", it should be mandatory that such medication be provided, unless the patient refuses it.

    —  This section should also make it clear that the pain medication is to be given even if there is some risk that the patient's death will be hastened as a result.

2(b)   Section 1  Authorisation of dying

Section 1(2)  Definitions:

  Assisted dying: While the words "providing the patient with the means to end the patient's life" is a clear definition of physician-assisted suicide, "ending the patient's life" (ie euthanasia) requires elaboration. For example, what practices are intended to be included in this definition? Is it only meant to cover lethal injections? Does it also include terminal sedation? Practices such as withholding or withdrawing life-sustaining futile medical treatment, or providing increased levels of needed pain relief medication, should be stated as being clearly excluded in this definition.

  In addition, the words "if the patient is physically unable to do so" should be deleted from this section. Some patients, while physically capable, may not wish to take the action themselves, either because they fear that they will not do it correctly or because they regard the final relief of their suffering as part of their medical care, and wish that to be provided by a doctor. To restrict this service only to those who are not physically capable of committing suicide may increase the distress and suffering of other terminally ill patients who desire euthanasia.

  Terminal illness: The included definition of "terminal illness" as ". . . likely to result in the patient's death within a few months at most" is too vague. What does "a few months" mean? We acknowledge that accurate prognosis of time to death is often extremely difficult, but contend that legislation requires specificity. In the Oregon legislation relating to physician-assisted suicide, terminal illness includes that the patient is expected to live for less than six months (Roscoe et al, 2001).

  The Queensland Powers of Attorney Act (1998), which sets out the conditions under which life-sustaining treatment may be withheld or withdrawn, defines "terminal" as: "resulting in death—the patient can reasonably be expected to die within the next 12 months".

  We recommend stipulating a period of six months.

2(c)   Section 2  Qualifying conditions

Sections 2(d) and 3(d)

  As the patient must decide that his suffering is unbearable, rather than the physician concluding this, clarity could be added by inserting additional words such as "from statements made by the patient" after the word "concluded". However, the definition of "unbearable suffering" in Section 1, which includes the words "which the patient finds so severe as to be unacceptable", may be sufficient.

2(d)   Section 4  Declaration made in advance

Section 4.2

  There is usually a cost involved in having a practising solicitor witness documents, which may prove prohibitive for some patients. In Australia, a JP or Commissioner for Declarations (whose services are free) may witness advance directives (although obviously these are for future health care provision and not for assisted dying).

Section 4.3(a) and Section 4.4(a)

  Why should the patient have to "prove [?] his identity to the solicitor" (or other witness)? If the patient says who he is, and the attending physician knows the patient by that name, that should be adequate. After all, no one else is going to be assisted to die but the person making the statement.

Section 4.8

  Although Section 4 pertains to a Declaration made in advance, and Section 4.8 states that the declaration shall remain in force for six months, there is no statement as to whether or not the declaration survives the patient's loss of competence, if that occurs within the six month period. This should be made explicit.

2(e)   Duties of physicians, and conscientious objection

  Sections 7(2) and 7(3).

  This Section appears to be more "active" than would usually be required for a matter of conscience. Some physicians would find even referring the patient to someone who would assist him to die to be against their conscience. A better option would be that anyone who has a conscientious objection should not be obliged to participate but must not actively impede a patient accessing such assistance (once it is legally available). An official information service may be needed for people who want such assistance.

  Also, while the physician may or may not know who "does not have such a conscientious objection", to make such referral obligatory (ie "he shall . . .") may put unfair pressure on the physician and may affect his future professional relationships.

2(f)   Section 8  Psychiatric referral

Section 8.1

  We commend the drafters of this Bill for not making a psychiatric referral compulsory for everyone requesting assistance to die. It is generally accepted (albeit not universally) that such requests can be entirely rational, given the patient's condition, quality of life and belief system. In addition, since psychiatric referral is not required for other, currently legal, actions which can result in the patient's death (eg withholding or withdrawing life-sustaining medical treatment), to make it mandatory for assisted dying would be discriminatory.

2(g)   Section 14  Monitoring commission and reporting requirements

Section 14(2)(c)

  The requirement that the lay member of the commission shall have "first hand knowledge or experience in caring for a person with a terminal illness" is problematic and may introduce bias, or at least an additional degree of complexity into the process. For example, if the person witnessed a distressing death of a loved one and, as a consequence, believes that assisted dying should be readily available to everyone who requests it, it may reduce the person's objectivity in assessing reported cases. Conversely, if a person cared for someone under distressing conditions for some time, and considers the patient to have been "very brave", the member's assessment may be that assisted dying was provided too easily. We accept that there should be a lay member on the commission but suggest dispensing with the qualifying conditions.

Section 14(4)

  We commend the requirement that the commission "shall confirm to the attending physician concerned whether the qualifying conditions have been met as soon as reasonably possible ...". One of the authors of this submission (CC) spent some time in the Netherlands and interviewed physicians who had assisted patients to die, reported it as required and then waited more than 12 months before being told that they had met all requirements. This was a distinct disincentive to reporting.

2(h)   Schedule

Declaration (by patient)

  Statement number six requires one of two parts to be deleted. It would be better written as:

  Please delete one of the following two statements:

    —  I have decided to inform my family of my decision.

    —  I have decided not to inform my family of my decision.

Signing the declaration

  There is no provision for someone else to sign on behalf of a competent patient who may be physically unable to sign on his own behalf (eg because of a paralysing stroke which may have affected his body while leaving his mind clear). This should be added.


  We respectfully submit the following matters for the Committee's consideration:

1.   Terminal sedation

  A recent controversial addition to the assisted dying debate is the issue of terminal sedation and its relationship to euthanasia. Terminal sedation refers to the use of sedative drugs to induce unconsciousness in terminally ill patients in order to relieve suffering, when other attempts at relief have failed. Usually this includes cessation of nutrition and hydration. The practice has been described as "slow euthanasia" (Billings & Block, 1996), with claims that it is ethically worse than assisting the patient to die, because it requires patients to linger for a few more days before they die (Singer, 2002), with the potential for further suffering. Gauthier (2001:48) argues that "with terminal sedation we are already legally permitting and practicing something closer to active euthanasia than is commonly recognised".

  We acknowledge that some skilled palliative care physicians (eg Ashby, 2001) reject the contention that terminal sedation causes death because in such situations it is not usually possible to ascertain the relative causal contributions of disease, physiological and pharmacological factors to the timing of death. However, it appears that some health care professionals provide terminal sedation as a substitute for euthanasia, while others do not because they regard it as euthanasia, to which they are opposed, with the result that treatment for intractable terminal suffering may be underprescribed (Yanow, 2000).

2.   The need for openness, honesty and accountability

  The practice already occurs: There is widespread acknowledgement that assisted dying already occurs (Magnusson, 2002; Hoffenberg, 2000). Providing their responses are confidential, doctors and nurses acknowledge that they assist patients to die, including where it is not legal to do so (Douglas et al, 2001; Clarke et al, 2001).

  Need for legal protection: Legalisation would protect doctors or nurses who already assist patients to die and who do so as professionally as possible, from criminal sanctions they now potentially face.

  Need for open discussion/grieving: If assisted dying were legalised it could be discussed openly, allowing relatives and friends to also grieve openly. Because of the illegality, there can be traumatic psychological consequences for family members and others involved in assisting patients to die, including feelings of guilt and fear of detection. Singer (1994:148), describing a case of openly-conducted, active voluntary euthanasia in the Netherlands, notes that the patient

    had the best possible medical attention, right up to the moment of death. Her family could be with her, and even her priest. Nothing had to be furtive. There was no need to fear failure. No-one had to lie awake afterwards wondering if the police would knock.

  Development of better procedures: Currently, assisted dying practices are totally unregulated. Decriminalisation would allow the development of better practices, including doctors working with pharmacists to develop a documented regimen of drug use producing least side-effects. When euthanasia is practised in secret, problems can, and do, occur, eg patients do not die after being given all available medication, leading in some cases to a family member having to "finish the job" by holding a pillow or some other object over the person's face. The resulting trauma is obvious and long-lasting (Magnusson, 2002).

  Loss of respect for the law: Few cases of assisted dying come before the courts and those that do are treated leniently (Browne, 1990). If the law is not enforced, the public loses respect for it.

3.   Community's responsibility to terminally ill patients

  The success of science and medicine in dramatically reducing the number of deaths which occur from infectious diseases and from cardiovascular diseases have, in turn, created a situation where the majority of people will die from chronic illnesses. In many cases this will be via a long, drawn-out dying process that has the potential to produce great suffering, rob people of their independence, control and dignity and place great burdens on family and community resources.

  We contend that the benefits conferred by medical progress bring with them a concomitant responsibility to provide an opportunity, through the medical profession and to agreed community standards, for people to manage their own dying in a manner which is consistent with their beliefs and values. This would include provision for assisted dying.

4.   Social justice

  Proponents of assisted dying argue that certain classes of people, eg those who are well-educated and in higher socio-economic groups, who know who to ask and how to ask, have access to assisted dying while the rest of the community does not (Fraser & Walters, 2000). Others claim that it is discriminatory that patients whose diseases make them dependent on technology can control their time of dying by requesting treatment be withheld or withdrawn, while patients who are not technology-dependent do not have this option and should therefore be assisted to die (Singer, 2002).

  A related group of arguments include that there is no moral difference between withholding or withdrawing life support and providing assistance to die (Doyal & Doyal, 2001; Parker, 2001), or that there is no intrinsic moral difference between killing and letting die because both intention and outcome are the same (Hoffenberg, 2000). Young and Yeo (1989) argue that it is morally worse to prolong someone's suffering rather than kill them.

  Some terminally ill patients are physically unable to commit suicide (despite that not being illegal) and are unable to have someone else assist them to die (because that is illegal), which means that they are effectively denied private options available to others (Fraser & Walters, 2000).

  Vaux (1989:32) extends the social justice argument to patients whose deaths have been protracted by a range of interventions but who are then refused assistance at the end.

    Logically and emotionally, we cannot intervene at one phase and then be inactive at another, more painful phase. We cannot modify nature and then plead that nature must be allowed to run its unhindered course.

  For the reasons given, we believe that passage of the Bill would alleviate a small but significant area of social injustice.

5.   We live in a democracy and the majority want it

  Many studies and opinion polls demonstrate that the majority of the community support the legalisation or practice of assisting terminally ill patients to die if that is what they want (Cartwright et al, 2002; Dickenson et al, 2002; Cohen, 2001). Perron (1995) argues that the minority may choose not to participate but should not deny the option to those who want it.

6.   If patients know assistance is available, they may delay taking action or not take up the option at all

  There are claims that some terminally ill people kill themselves before they really want to, for fear of losing control through hospitalisation or disability (Roy, 2002) and that legalising assisted dying would give patients peace of mind (Perron, 1995). Data from Oregon support the idea that some patients gain comfort just from having a lethal prescription available (Ganzini & Johnston, 1999).

  In Summary: We submit that legislation is required to regulate and remove the secrecy from practices which already occur, to bring social justice to these practices and to meet society's obligations to terminally ill patients, Such legislation would almost certainly have wide community support.


  Ashby M. Natural Causes? Palliative Care and Death Causation in Public Policy and the Law. Thesis for Doctor of Medicine Degree, Department of Medicine, University of Adelaide, South Australia, 2001.

  Billings J A, Block S D. Slow euthanasia. J Pall Care, 1996; 12: 21-30.

  Browne A. Assisted suicide and voluntary euthanasia. Bioethics News, 1990; 9(4): 9-38.

  Cartwright C M, Williams G M, Steinberg M A. Attitudes behind the attitudes to euthanasia. Report to the National Health & Medical Research Council, Commonwealth Department of Health and Ageing, 2002.

  Clark D, Dickinson G, Lancaster C J, Noble T W, Ahmedai S H, Philp I. UK geriatricians' attitudes to active voluntary euthanasia and physician-assisted death. Age and Ageing, 2001; 30: 395-398.

  Cohen I. The NSW Rights of the Terminally Ill Bill 2001. Second Reading Speech, NSW Legislative Council Hansard, Article No 37 of 29/11/2001.

  Dickinson G, Lancaster C, Clark D, Ahmedzai S H, Noble W. UK physicians' attitudes toward active voluntary euthanasia and physician-assisted suicide. Death Studies, 2002; 26: 479-490.

  Douglas C D, Kerridge I H, Rainbird K J, McPhee J R, Hancock L, Spigeiman A D. The intention to hasten death: a survey of attitudes and practices of surgeons in Australia. MJA; 2001; 175: 511-515.

  Doyal L, Doyal L. Why active euthanasia and physician assisted suicide should be legalized. BMJ, 2001; 323: 1079-1080.

  Fraser SI, Walters J W. Death—whose decision? Euthanasia and the terminally ill. J Med Ethics, 2000; 26: 121-125.

  Ganzini L, Johnston W S. Patients with amyotrophic lateral sclerosis and physician-assisted suicide. (Response to comments on Ganzini L, Johnston W S, McFarland B H, Tolle S W, Lee M A. Attitudes of patients with amyotrophic lateral sclerosis and their care givers towards assisted suicide. NEJM, 1998; 339: 967-973.) NEJM, 1999; 340: 817.

  Gauthier C C. Active voluntary euthanasia, terminal sedation, and assisted suicide. J Clin Ethics, 2001; 12(1): 43-50.

  Hoffenberg R. Euthanasia. (Unpublished paper) March 2000.

  Magnusson R S. Angels of Death. Exploring the Euthanasia Underground. Melbourne University Press, 2002, Melbourne, Australia.

  Parker M. Across the Rubicon: medicalisation, natural death and euthanasia. Monash Bioethics Review, 2001; 20(4): 7-29.

  Peretti-Watel P, Bendiane M K, Galinier A, Favre R, Lapiana J-M, Pegliasco H, Moatti J-P. French physicians' attitudes toward legalisation of euthanasia and the ambiguous relationship between euthanasia and palliative care. J Pall Care, 2003; 19(4): 271-77.

  Perron M. Death and the State conference address in Proceedings of Death and the State, a Conference on Euthanasia, Centre for Public Policy, The University of Melbourne, August 1995:36-39.

  Roscoe L A, Malphurs J E, Dragovic L J, Cohen D. A comparison of characteristics of Kevorkian euthanasia cases and physician-assisted suicide in Oregon. Gerontologist, 2001; 41(4): 439-446.

  Roy D J. Editorial: Palliative care and euthanasia: A continuing need to think again. J Pall Care, 2002; 18(1): 3-4.

  Singer P. Freedom and the right to die. Free Inquiry, 2002; 22(2): 1-3.

  Singer P. Rethinking Life and Death. The Text Publishing Company, Melbourne, 1994.

  Vaux K L. Debbie's dying. Mercy killing and the good death. Ch 4 in Baird R M, Rosenbaum S E. Euthanasia. The Moral Issues, Prometheus Books, New York, 1989.

  Yanow M L. Letters, Annals Intern Med, 2000; 133(7): 560.

  Young R, Yeo J. Should doctors have a right to help patients die? (P339-347) in Giles R (ed.) Voluntary Euthanasia, For and Against: An Anthology of Public Issues in Australia, Brooks Waterloo, Milton, Qld, 1989.

28 August 2004

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