This article appears in the May 2004 edition of the Catholic Medical Quarterly
Physician Assisted Suicide: A Licence to Kill.
This article describes how the advocates of euthanasia in the UK aim to change the law to make physician assisted suicide legal. They see it as the most fruitful area for legislation if their aims are to be achieved. Their hope is that the seductive attractions of Physician Assisted Suicide (PAS) may undermine resolve and persuade Parliament to change the law to make this form of euthanasia lawful. To this end they have employed many of the tricks that Wesley Smith described so clearly in his article in New Directions, namely fear mongering, distortions, half-truths, lies and emphasis on choice and autonomy.1
The legislation proposed has gone through several drafts over the years. An early draft prepared by the Voluntary Euthanasia Society (VES) was circulated for consultation in August 1996 when the draft Bill was described as the 'Physician Assisted Suicide Act'. This was 'An Act to enable a person who is suffering distress as a result of his terminal illness or incurable physical condition to request assistance from a physician to end his life.' Terminal illness was defined as 'an illness which in reasonable medical judgement in the normal course and without application of treatment unacceptable to the individual concerned will result in the death of the individual within the next six months.' An 'incurable condition' meant 'a serious incurable physical illness or a serious permanent physical impairment.'
The 'Patient (Assisted Dying) Bill [HL]' was introduced to the House of Lords [HL] by Lord Joffe in February 2003 and received its second reading in June 2003. The intention of the Bill was to 'Enable a competent adult who is suffering unbearably as a result of a terminal or a serious and progressive physical illness to receive medical help to die at his own considered and persistent request; and to make provision for a person suffering from such a condition to receive pain relief medication.'2
'Terminal illness' was taken to mean 'an incurable and physical illness which the consultant physician has determined as being likely to result in the patients death within six months of the date when he confirmed the prognosis of the attending physician.'
'Unbearable suffering' was defined as 'unbearable suffering whether by reason of pain or otherwise as a result of an irremediable condition, the ending of which suffering would be a humane act for that particular patient; and 'suffering unbearably' shall be construed accordingly.'
'Irremediable condition' was a vague term covered to some extent in notes circulated with the draft of February 2003. A paragraph headed 'Irremediable condition' explained that 'The Bill covers patients suffering unbearably from a terminal illness but also from a serious, incurable, and progressive physical illness. This will give the option of medically assisted dying to members of the community who have serious physical conditions such as multiple sclerosis and AIDS. However, people who are suffering from a serious physical illness who wish to have help to die, will, like those who are suffering from a terminal illness, have to convince the physician that they are suffering unbearably. They will also have to wait for 30 days before being able to receive medical assistance to die, which is a longer waiting period than those who have a terminal illness.'3 [For a patient with a terminal illness the waiting period proposed was 7 days from the time that the declaration came into force.]
Various other, so called, safeguards were built into the Bill, for example, a second opinion from a consultant physician, and a further opinion from a psychiatrist if the consultant physician had doubt about the patient's mental competence. Provision was planned for reporting and monitoring of all assisted deaths that occurred under the provision of the proposed Bill.
On the subject of pain relief the Bill stipulated that 'A patient suffering from an irremediable condition shall be entitled to request and receive such medication as may be necessary to keep him free, as far as possible, from pain and distress.' This requirement is of course quite superfluous, for all British citizens living in the UK are entitled to free health care on the NHS. This entitlement gives them access to expert help from palliative care specialists, and NHS pain clinics. All that is required is a referral. As Dame Cicely Saunders once said 'Help is only a phone call away.' Everyone with an ounce of knowledge about terminal care knows that it is already lawful for a doctor to give whatever medication is needed to control pain- even at the risk of shortening the life of the patient. This is understood and accepted by lawyers under the terms of the doctrine of double effect.
Those who drafted the Bill recognised that 'unbearable suffering' is a subjective test. As Lord Joffe noted in a briefing paper to the House of Lords in May 2003, pain is not always the determining factor, for evidence from Oregon shows that ' terminally ill people ask for help to die because of a loss of autonomy, the inability to participate in activities, and the loss of control over bodily functions. No amount of palliative care can address concerns about (these factors)'for these are existential rather than medical concerns.'4
Data from Australia.
Lord Joffe placed considerable weight on data from Australia, as reported in 1997 by Helga Kuhse, Peter Singer and others. Peter Singer is of course somewhat notorious in the bioethics field for his outspoken advocacy of euthanasia. Their paper on 'End-of-life decisions in Australian practice was published in The Medical Journal of Australia, and on the Internet.5 The authors claimed that in 30% of all Australian deaths, a medical end-of-life decision was made with the explicit intention of ending the patient's life, and only 4% of these deaths were in response to a direct request from the patient. Therefore they concluded that Australian law (that prohibits euthanasia) has not prevented doctors from practising euthanasia.5 Under the umbrella term 'medical end-of-life decisions' they included euthanasia by drug administration at the patient's request or without the patient's request, physician-assisted suicide, whereby the physician prescribed or supplied drugs to enable the patient to end his/her life. Or the administration of large doses of opioides for pain relief such that there was a probable life-shortening effect, and a decision to withhold or withdraw life-prolonging treatment.
The data of Kuhse, Singer et al. came from a survey of 3000 anonymous doctors who were sent a retrospective questionnaire similar to one that was used in the Netherlands in 1990-1995. The initial response rate was 68%. Of the responders 1361 had attended a death within the last 12 months, but some of these had only seen the patient after death. Of 1112 doctors who had attended a death where there was an opportunity to make an end-of-life decision 800 made a decision intended either to shorten life, or foreseen as probably or certainly shortening life, and 312 doctors did not make such a decision. However despite various statistical manoeuvres the authors noted that 'there is no simple way of deriving the proportion of deaths in Australia that were preceded by a medical end-of-life decision from our sample of doctors who reported on their decision with regard to the most recent death they attended.'5
Of the 800 doctors who reported medical end-of-life decisions 26 reported euthanasia at the patient's request, 51ended the patients life without their request, 289 decided not to treat and 434 doctors gave large doses of opioids to relieve pain. Most of the doctors who used opioids had no intention to hasten death, but some admitted to a partial intention to hasten death. These results were then extrapolated by another statistical manoeuvre (a ratio-to-size estimation) from which the authors concluded that 'A medical decision either partly or explicitly intended to hasten death or not prolong life, occurred in 36.5% (+or-3.5%) of all Australian deaths. In almost half of these (17.8%) there had been no explicit request from the patient, nor had there been any discussion of ending the patient's life, and the doctor did not believe that the patient had expressed a wish for death to be hastened.' 5.
Assuming that the above statistical analysis is reasonable, it comes as a surprise to read a few lines later that 'An estimated 3.5%'of all Australian deaths involved termination of the patient's life without the patient's explicit request.' In other words 3.5% of all deaths in Australia in 1995-96 were due to involuntary euthanasia, taking the term to include intentional deaths by act or omission. This percentage was rather more than the equivalent rate of 0.7% in the Netherlands in 1995.6
Coming back to Lord Joffe's briefing paper we find that he latched onto the Australian involuntary euthanasia figure of 3.5% and found it comparable to a figure of 3.2% reported from Belgium in 2000. Taking the mid-point of these two figures (3.4%) and the total deaths in England and Wales in 2001 (530,300) Joffe concluded that possibly 18,000 people in the UK each year may have their lives ended without their consent.7 Be that as it may, I am not convinced that life and death legislation in the UK should be based on extrapolation of dubious and debateable statistics from other countries.
The point that advocates of euthanasia are trying to sell to the British Parliament on the basis of dubious Australian statistics, is that regulation of a sort through legalisation may actually reduce the number of deaths by euthanasia.7 Even if euthanasia is made lawful, reporting by doctors cannot be guaranteed. No doctor would willingly admit to killing a patient, for most would regard such an action as immoral and unethical. Moreover most families would wish to have a veil of privacy drawn over such matters. If the objective of the 'Patient (Assisted Dying) Bill' was indeed to reduce the incidence of involuntary euthanasia, it would be infinitely better to regulate doctor's activities more closely, and to ensure that intentional killing by act or omission is prohibited. If Lord Joffe truly believes that 18000 patients a year in England and Wales are being subjected to involuntary euthanasia, it is time that this was stopped- yet he did not support Baroness Knight's 'Patient Protection Bill [HL]'.8
The Kuhse, Singer and Baume survey was criticised by several groups in Australia. All available information based on surveys from Australia was considered by the Senate Committee convened to inquire into the Andrews Euthanasia Bill in 1997.
The most detailed criticism of the Kuhse paper came from Anthony Fisher, a lecturer in Health Care Ethics and Law in Melbourne, John Fleming, Director of the Southern Cross Bioethics Institute in Adelaide, Anna Krohn their principal research officer, and Nicholas Tonti-Filippini Consultant Ethicist from Melbourne. Their comments were published in the Senate Report 9 and in the Medical Journal of Australia 10.
- The Australian and New Zealand Society of Palliative Medicine contended that the Kuhse studies were flawed because the questions asked were not specific and so were open to misinterpretation. 11
- Waddell et al reported a postal survey conducted in September and November 1995 sent to a random sample of 2172 Australian doctors in all States and Territories. The response rate was 73%. The doctors were asked how they would treat a hypothetical patient with motor neurone disease who was unable to swallow and requesting physician-assisted suicide. From the answers given Waddell et al concluded that doctors did not make consistent decisions with regard to the end of life; they generally followed patient and family wishes when known and they did not generally adhere to a patient's request for assisted death.12
- A study from Flinders University in 1996 showed that 33% of 298 South Australian doctors had received requests from patients requesting active euthanasia. 19% had taken active steps to bring about the death of the patient. Of those who had practised euthanasia 85% felt they had done the right thing, 13% said they had not, and the remainder were unsure.13
Comments from Anthony Fisher, John I. Fleming, Anna Krohn and Nicholas Tonti-Filippini. Writing in the Medical Journal of Australia in May 1997, the authors said:-
' Kuhse et al's recently published study has two stated objectives: to describe the characteristics of medical end-of-life decisions in Australia' and 'to compare these data with medical end-of-life decisions in the Netherlands, where euthanasia is openly practised.' It fails on both counts.
First, the study categorises decisions to withhold or withdraw potentially life-prolonging treatments which are judged too burdensome, costly, risky (etc), with decisions to withhold or withdraw treatment with the intention of hastening death. It thereby confuses good medical practice according to traditional medical law and ethics, with other decisions which are illegal'and are clearly contrary to medical ethics. The study compounds this obfuscation by improperly generalising from a small sef-selected poll group asked about one death to all medical end-of-life decisions, and then from medicalised deaths to all Australian deaths.
Kuhse et al then conclude that 'in 30% of all Australian deaths, a medical decision was made with the explicit intention of ending the patient's life'- a claim unsubstantiated by research and defamatory to the profession.
Secondly, the Kuhse study is not comparable to the 1995 Dutch study in size, scope or design. The National Health and Medical Research Council of Australia assessors rightly complained that the research proposal adopted only one part of the three pronged Dutch study, but this was not corrected. Not only is the use of a mailed questionnaire as the sole data collecting tool problematic, but the investigators also used a mistranslation of a crucial question from the Dutch study and agreed to add two questions (regarding euthanasia legislation) thereby prejudicing the results. In any case, the vastly different legal, medical, and socio-political circumstances in Australia, together with the three chief investigators being seen as Australia's leading euthanasia advocates rather than neutral observers, makes any comparisons between the Dutch and Australian studies moot.
In fact Kuhse et al failed to report significant data from the Dutch study overwhelmingly adverse to their conclusions: that with de facto legislation the incidence of (active) euthanasia increased by 30% in 1990-95 alone, and withholding or withdrawing treatments explicitly to shorten life increased a staggering 143%. Kuhse's study has done nothing to reassure those who argue that legalising euthanasia would be corrupting and ultimately uncontrollable.' 10
Nevertheless the same old discredited data from Kuhse, Singer et al is being recycled by the Voluntary Euthanasia Society, through Lord Joffe to the House of Lords, in an attempt to persuade our Parliament to make physician-assisted suicide legal.
The Assisted Dying for the Terminally Ill Bill [HL]
In January 2004, a revamped and less ambitious version of the Patient (Assisted Dying) Bill was published as the 'Assisted Dying for the Terminally Ill Bill [HL] .
This Bill is intended 'To enable a competent adult who is suffering unbearably as a result of a terminal illness to receive medical assistance to die at his own considered and persistent request; and to make provision for a person suffering from such a condition to receive pain relief medication.'
The definition of 'terminal illness' has been changed and is now taken to mean 'an illness which in the opinion of the consulting physician is inevitably progressive, the effects of which cannot be reversed by treatment (although treatment may be successful in relieving symptoms temporarily) and which will be likely to result in the patient's death within a few months at most'. The 'waiting period' is now to be not less than 14 days in all from the date on which the patient first informed the attending physician that the patient wishes to be assisted to die.' Patients with serious or progressive physical illness that is not terminal as defined in this way are excluded from the Bill. Statements about pain relief medication remain as before.
None of the definitions of 'terminal illness' used in various drafts mentioned above equate with the definition used by the NHS Executive and the National Council for Hospice and Specialist Palliative Care Services. (NCHSPCS) The NHS define terminally ill people as 'those with active and progressive disease for which curative treatment is not possible or not appropriate, and from which death can reasonably be expected within twelve months.' It would seem sensible for the legal definition to tally with the definition currently in use by the medical profession. This being so use of the term 'terminal illness' as defined in the 'Assisted Dying for the Terminally Ill Bill [HL]' is inappropriate. When lawyers draft legislation that will have a profound and devastating impact on medical practice they should ensure that medical terminology is used correctly and precisely. 'Terminal illness' must be defined with due care and attention to minimise the harmful effects of the legislation proposed.
Physician-assisted suicide would be a disaster for the medical profession, and for the hospice movement. Attempts to legalise physician- assisted suicide will do nothing to reduce the incidence of involuntary euthanasia by omission in patients who have life-prolonging treatment withheld with the result that they die.
Dr Gillian Craig
is a retired consultant geriatrician
Smith Wesley J. Assisting Suicide. New Directions. February 2002. p 4-5.
Patient (Assisted Dying) Bill. HMSO Feb 20th 2003.
Ibid. Explanatory notes ' 2003. Voluntary Euthanasia Society. London.
Lord Joffe. The Patient (Assisted Dying) Bill 2003. Briefing to the House of Lords-May 2003.
Kuhse H, Singer P, Baume P, Clark M, Rickard M. End-of-life decisions in Australian medical practice. The Medical Journal of Australia 1997; 166:191. Posted on the Internet at http://www.mja.com.au/
van der Maas PJ, van der Wal, Haverkate I et.al. Euthanasia, physician-assisted suicide and other medical practices involving the end of life in the Netherlands, 1990-1995. New England Journal of Medicine 1996; 335: 1699-1705 as reported in ref 5 above.
Lord Joffe briefing to the House of Lords. Para 6.3. See ref 4 above.
The Patient's Protection Bill [HL] was debated in the House of Lords in March 2003.
Report of the Senate Committee inquiring into the Andrews Euthanasia Laws bill in 1997.
Fisher A, Fleming JI, Krohn A, and N.Tonti-Filippini. End of life decisions in Australian medical practice. Medical Journal of Australia 1997; 166: 506.
See ref 9 above at paragraph 7.20, reporting submission No 4538, Council of the Australian and New Zealand Society of Palliative Medicine, p 39.
Waddell C et al. Treatment decision-making at the end of life: a survey of Australian doctors' attitudes towards patients' wishes and euthanasia. The Medical Journal of Australia 1996; 165: p 540. As reported in ref 9 above paras 7.21-7.24.
Hoey F. Euthanasia study finds belief split in doctors. Australian Doctor 1996, November 15th. As reported in ref 9 above at para 7.25.