Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence

Memorandum by the Association for Palliative Medicine


  1.  The Association for Palliative Medicine (APM) welcomes the opportunity to debate the complex issues surrounding euthanasia and physician-assisted suicide and recognises the ongoing interest expressed by society in debating end-of-life issues.

  2.  Confusion exists surrounding the terms used in the euthanasia debate and in the wording of the Bill.

  3.  The effective and proper use of analgesics is well established and is a consequence of the work of hospices and specialist palliative care. There is no need for new legislation to facilitate the appropriate use of drugs to relieve pain.

  4.  In some of the countries that have legalised euthanasia, palliative care services are poorly developed.

  5.  The appropriate scope of respect for individual autonomy requires further scrutiny and debate in the light of the present-day circumstances of dying and the care of vulnerable patients in society.

  6.  The APM welcome the conscientious objection clause in the Bill since palliative care physicians should not be required to be involved in the administration of euthanasia and physician-assisted suicide

  7.  The Bill postulates the ethical concept that death is a "moral good". There is the danger that if death and "medicalised killing" become regarded as in the best interests of competent patients there will be a moral obligation to extend this to incompetent patients.

  8.  Little robust evidence exists on patients' decision-making at the end of life. This debate needs to be informed by rigorous research into patients' views and attitudes to euthanasia and physician-assisted suicide.

  9.  There is a need to improve communication and advanced care planning of end of life care. In this way patients may have enhanced autonomy that is specific to their needs without violating the autonomy of others.

  10.  All patients who need palliative care should have access to this care at an appropriate level to meet identified needs .There is a need to develop and expand palliative care services at all levels, including funding research into improving care of the dying.

  11.  The Bill does not provide adequate safeguards to protect vulnerable members of society.

  12.  Existing legislation in Holland and Belgium has not prevented significant numbers of cases of "medicalised killing" being carried out where the patient has not given consent.

  13.  The resource implications of this Bill in terms of time, staff and facilities are significant and have not been addressed by the Bill.

  14.  The Bill threatens the integrity of the medical profession and the future of palliative care.

  15.  The Bill could disadvantage the palliative care of patients who did not request euthanasia by distorting clinical priorities

  16.  The Association for Palliative Medicine remains opposed to the legalisation of euthanasia and physician-assisted suicide.


  2.1  The Association for Palliative Medicine of Great Britain and Ireland (APM) is the national professional organisation for over 800 doctors working in, or with a particular interest in, specialist palliative care. The Ethics Committee of the Association is elected by the membership. (Appendix 1) This submission has been ratified by the Executive Committee of the Association and reflects the views of the large majority of members. (Appendix 2) The APM submits this report to the House of Lords Select Committee to express our views regarding The Assisted Dying for the Terminally Ill Bill.

  2.2  Since the last House of Lords Select Committee report on euthanasia 10 years ago, there have been some changes in the legislation of euthanasia and physician-assisted suicide in other countries. These may be summarised:

    —  Rights of Terminally Ill Amendment Act 1996, Northern Territory, Australia made euthanasia and physician-assisted suicide legal.

    —  1997 Law made ineffective by Parliament of Australia.

    —  1997 Physician-assisted suicide (but not euthanasia) legalised, Oregon Death with Dignity Act.

    —  April 2002 euthanasia and physician-assisted suicide legalised in the Netherlands.

    —  May 2002 legalisation of euthanasia in Belgium.

    —  Also, Article 115 of the Swiss penal code condones assisting suicide for altruistic reasons. It does not require the involvement of a physician nor that the patient be terminally ill.

  2.3  The legalisation of euthanasia and physician-assisted suicide has been debated since the 1970s and polarised into two opposing views; "for" and "against". The principal arguments "for" euthanasia and physician-assisted suicide concern respect for autonomy and the relief of pain and suffering. Those arguing "against" argue from the intrinsic wrongness of deliberately taking innocent human life, the integrity of the medical profession and the potential for abuse (which may be framed as a slippery slope argument).(1) We do not propose to repeat all of these arguments but rather to highlight the practical and ethical difficulties which, in our view, make legislation of euthanasia unworkable. We have taken the opportunity to suggest positive measures, including the need for further research, which would improve our understanding of these complex end of life issues and to deliver better care for all patients at the end of their lives

  2.4  Since the House of Lords Select Committee reported ten years ago, the APM share the concerns expressed in their report and remain opposed to the legalisation of euthanasia and physician-assisted suicide.(2) Furthermore, the European Association of Palliative Care and the British Medical Association are opposed to euthanasia legislation. Our opposition to legislation is based on our clinical experience in caring for dying patients and their families and on overwhelming evidence from the peer reviewed literature. We present our specific concerns regarding the proposed legislation.

  2.5  Across Europe there is little evidence of concerted attempts to bring about the legalisation of euthanasia through parliamentary processes.(3) Those countries which have legalised euthanasia generally have poorly developed specialist palliative care services.(4) In contrast in the United Kingdom models of palliative care have been developed at generalist and specialist levels. Nevertheless, significant challenges and difficulties remain [RG1]:

    (a)  Access to this care is mainly limited to patients with cancer and some advanced chronic neurological diseases and provision of care remains patchy, due to inadequate resources.(6)

    (b)  Whilst the specialist services that are available are generally of a high standard, the specialty still has much research and development to do in the areas of suffering and symptom control. Sadly, this need is not reflected in research funding for palliative care.

    (c)  Most palliative care is delivered primarily through primary health care and in hospitals by general clinicians. Whilst there have been programmes funded from central government to assist in education on the basics in palliative care, the general quality of care remains variable.

    (d)  Consequently, bad death and unnecessary suffering continue to occur, as the testimonies of those in favour of euthanasia demonstrate. We cannot hope to confer on people the dignity in their disabilities and their dying that they deserve when support services for community nursing, out of hours care, occupational therapy, the provision of aids in the home and continuing care packages remain at the current inadequate levels. This has been brought to the attention of the Commons Health Committee that looked at Palliative Care recently.(5)

    (e)  There are also failures in specialist palliative care services. Recruitment into practice is as difficult as any other specialty.(5) Consequently, due to inadequate resources, poorly qualified or inexperienced staff, patients and families that should have had well-managed death have not. This is a continuing concern to us, and a matter for training and supervision that falls to the specialty as it develops.(5)

    (f)  Priority for access to specialist palliative care should not be solely determined by a request for euthanasia or physician-assisted suicide.


  Confusion exists surrounding the terms used in the euthanasia debate and in the wording of this Bill.

3.1  Palliative Care: World Health Organisation definition 2002(7)

    "Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."

3.2  Many definitions of euthanasia and physician-assisted suicide have been formulated.

  The European Association for Palliative Care Ethics Task Force recommends the following definitions (3):


    "A doctor intentionally killing a person by the administration of drugs, at that person's voluntary and competent request."

      Their inclusion of a "doctor" as the agent is based on the Dutch model and has provoked controversy in the literature.(8) Medicalised killing of a person without the person's consent is not euthanasia, it is murder.(3)

    Physician-assisted suicide

    "A doctor intentionally helping a person to commit suicide by providing drugs for self-administration, at that person's voluntary and competent request"

  3.3  The APM believe that palliative care physicians should not be required to be involved in the administration of euthanasia and physician-assisted suicide. It is significant that the word "euthanasia" does not appear in the proposed legislation which covers both euthanasia and physician assisted suicide in the "softer" but confusing term "assisted dying." This Bill is actually about medical help to end life, since it is about both the prescription and possibly administration of lethal doses of medication ie assisted suicide and euthanasia. It is about deliberate acts to end life, not about assisting in the natural dying process which the term "assisted to die" could be taken to mean.

  The Bill also seeks to confuse the issue further by suggesting that new legislation is needed to ensure patients with terminal illness receive analgesics. Existing law enables doctors to give pain relief, even if doing so may risk shortening the life of a terminally ill patient, and to deny patients such relief is negligent.

3.4  Terminal

  Clinical evidence shows that consultants are often inaccurate in their estimation of a patient's prognosis. Defining the terminal phase is often much more difficult than people might imagine, particularly in patients with non-malignant disease such as cardiac or respiratory failure.(9)

3.5  Unbearable suffering

  Objectively determining the severity of suffering is not possible; it is what the patient says it is. Suffering is an entirely subjective concept which is determined by a host of factors including most importantly the patient but also the society in which he/she lives, the healthcare professionals view and the levels of support available. In 35% of euthanasia requests in Holland doctors refuse requests on the basis that the suffering of the patient is insufficiently severe.(10)

3.6  Terminal or palliative sedation

  Terminal or palliative sedation in those imminently dying must be distinguished from euthanasia. In palliative or terminal sedation the intention is to relieve suffering, the procedure is to use proportionate doses of a sedative for symptom control and the outcome is alleviation of distress.(3) In euthanasia, the intention is to kill the patient, the procedure is to administer a lethal drug and the outcome is immediate death.


4.1  Arguments derived from the appropriate scope of respect for Autonomy

  The appropriate scope of respect for individual autonomy requires further scrutiny and debate in the light of the present-day circumstances of dying and in relation to the wider interests of vulnerable patients and society.(1)(11)

4.2  Death as a moral good

  There is a danger of reclassifying death from euthanasia and physician-assisted suicide as a potential moral good.(11) In Holland, death and "medicalised killing" is considered to be in the best interests not only of competent patients who request it, but also in incompetent patients, where the doctor(s) judge patients to be suffering or in possession of a life no longer worth living.(19)

  4.3  We do not believe that killing is the best treatment for the sufferings that are part of our humanity. Particularly when poor clinical care has reduced a patient's dignity and social isolation has led to a loss of personal relationships.

  The APM suggests from the clinical experience of its members that with the proper provision of palliative care services, and adequate and timely access to practical and necessary support for patients and their family, persistent requests for euthanasia are infrequent. Where they do exist, the solution lies in providing support and the best possible care to engage with issues such as hopelessness, helplessness, loss of meaning and existential distress, not in euthanasia or physician assisted suicide.

  The APM welcomes the conscientious objection clause in the Bill. Euthanasia and physician-assisted suicide should not be part of the responsibility of palliative care physicians.

  4.4  Relief of suffering is an important goal of medical care. However, palliative care cannot, and does not claim to be able to relieve all suffering. There is no sort of care that could ever alleviate all suffering (especially some expressions of social, psychological and spiritual distress), but the first step to addressing the majority of this suffering is to ensure effective support and skilled interventions are available to those who require them, rather than introduce a way to end these individual's lives. The inability to relieve all suffering is inevitable and is part of the human condition. We believe that implementation of this Bill could increase suffering in vulnerable patients and their families by reducing trust, increasing fear and inhibiting patients from disclosing their concerns to doctors and other healthcare professionals.(11)

4.5  Patient's views

  We have little reliable evidence as to how most dying patients feel about euthanasia and physician-assisted suicide. Such evidence that does exist indicates that requests for euthanasia and physician-assisted suicide relate to feelings of "disintegration" which results from symptoms and loss of function and a "loss of community" which describes the progressive loss of opportunities to initiate and maintain close personal relationships.(12) These factors contribute to a feeling of a "loss of self".(12) Thus the decision to have euthanasia or assisted suicide could change with meaningful changes in an individual's social circumstances independently of disease progression.(12)

  Existing studies into patients' reasons for requesting euthanasia or physician assisted-suicide, suffer from significant methodological weaknesses. They describe features such as depression, hopelessness, psychological distress and need for social support. However how these factors lead people to request euthanasia or physician assisted suicide has not been explained.(15) What seems to be clear is that the relevant factors can change as the patient approaches death.(13)

  The criteria in this legislation fail to provide a framework to address the social circumstances that contribute to the desire for euthanasia or assisted suicide. This vital part of end of life care needs to be informed by rigorous research into the patient's views and attitudes to euthanasia and physician assisted suicide.(15)

  4.6  Individual requests for euthanasia and physician-assisted suicide are complex in origin and demand careful attention with open and sensitive communication. The complexity of the notion of a "loss of self" means that there is a need for clinicians to consider the evaluation of a request for euthanasia or assisted suicide as an important clinical skill. (14) Sensitive exploration of the request can help to identify the real needs of an individual patient.(14) The request for euthanasia or physician-assisted suicide seems to point to a series of concerns that the patient has about dying; relating to loss of self, loss of dignity and the social context of dying. Understanding these concerns may help us to improve the care of dying patients.(14) Communication surrounding end of life issues is a core skill in palliative care and depends upon a trusting doctor patient relationship. There is a need to improve communication skills of doctors and advanced care planning of end of life care to enhance patient autonomy.

4.7  Lack of protection for the vulnerable

  The Bill does not provide adequate safeguards to protect vulnerable members of society.

  1.  The Bill contains a requirement that a specialist in palliative care must "discuss the option of palliative care" with the patient before a declaration can be signed. The purpose of the single consultation is unclear. Is it to give the patient some basic information about palliative care, or; to provide more detailed information; or to assess the patient to establish what precise options might be available to that individual patient? To discuss options appropriately necessitates assessing the patient in order to be able to discuss relevant care. If the assessment is to be carried out by a clinical nurse specialist this will have implications for provision of training.

  2.  The assessment of the euthanasia request as envisaged in the Bill can create a barrier which subtly alters the doctor-patient relationship and may paradoxically impair the possibility of discussing the hopes and fears driving the euthanasia request. It can be even more difficult to assess a patient's needs when the goal of euthanasia dominates discussion.

  3.  Assessment in specialist palliative care depends upon continuity of care and is an ongoing dynamic activity. It is unrealistic to imagine that a single consultation with a patient could reveal all the factors behind a request for euthanasia or physician-assisted suicide. It often takes weeks to establish a sufficiently trusting relationship with some patients. Compounding these difficulties is the lack of time, continuity and the fact that many patients have a number of attending physicians and other healthcare professionals necessarily involved in their care.

  4.  The Bill makes no mention of what is to be done when the experts disagree in their assessments.(16)

  5.  Commonly in clinical practice many patients are apprehensive and may be reluctant to accept palliative care. However they almost always change their minds once they experience this type of care. Thus it may be that many patients might initially reject palliative care when given basic information about it at a single interview. Another common manifestation of this scenario is the frequent expression by patients who have received palliative care. "Why did no-one tell me about this care earlier on".

  6.  There is no allowance made in this legislation for depression which falls short of incompetence. Depression may be difficult to diagnose. The attending physician and the consulting physician do not need to have had any psychiatric or palliative care training, if they miss the diagnosis and presume competence the existing safeguards of the Bill are ineffective.

  7.  The attending physician cannot form an independent opinion as to whether the patient is terminally ill, because the Bill's definition of a terminal illness is wholly dependent on the view of the consulting physician.

  8.  The waiting period is too short, and could be completed at the moment that the patient signs a declaration, without any subsequent cooling-off period.

  9.  A monitoring commission is useful only to the extent that cases are reported to it. The Dutch experience demonstrates that almost 50 per cent of cases are not reported to the authorities.(17) Indeed it could be the most borderline cases which do not fulfill the criteria for euthanasia which are concealed.

  10.  Why does the monitoring commission review cases retrospectively? It would be much fairer and a better safeguard to monitor applications to ensure the qualifying conditions had been met for euthanasia or assisted suicide before the death, not after.

4.8  Legislation abroad

  Looking at the effect of different laws in different countries will not necessarily predict the effect of the proposed Bill in this country and so is of limited value. However the Dutch data from 2001 are cause for concern.(18)(19). Euthanasia was carried out in 2.6 per cent of all deaths (3,640), physician-assisted suicide in 0.2 per cent (280) and "life-terminating treatment", where there is no explicit request, 0.7 per cent of deaths (966).

   Legislation has been unable to prevent life-terminating treatment without consent. Furthermore there is evidence that approximately 50 per cent cases of euthanasia are not reported by doctors who feel it is a matter between themselves and the patient.(8, 10) Thus the exact extent of euthanasia being carried out without consent is unknown (17).

4.9  Resource implications

    (a)  Palliative care resources are limited and in reality largely confined to a proportion of those people with cancer. Further resources would be needed, both to enable assessments to take place, and then ensure that adequate palliative care is available to meet identified needs. What would happen if following the consultation, the patient decided to have palliative care, but none was available?

    (b)  The Bill does not state where the euthanasia or physician assisted suicide will take place. We would be concerned about the effects on other patients if assisted dying took place in the same ward or even building as the one in which they receive treatment. Much of hospice care is provided by charitable monies currently—and charities are highly unlikely to accept euthanasia and physician assisted suicide within hospices.

    (c)  Patients wishing to remain in a hospice/specialist unit could avoid discharge simply by making a euthanasia request, thus denying more needy patients access to care. The Bill states that the patient must be informed of the alternative of "care in a hospice". If all patients who say they might want euthanasia thus become entitled to "care in a hospice" then it is likely that more hospice beds will be needed and possibly for longer periods of time per patient. The Bill does not limit the length of time the "care in a hospice" is to be made available for. The average length of stay currently in a specialist palliative care unit is around 13 days, but this could lengthen considerably if the Bill becomes law and the patients are seen to be entitled to care in a hospice if they are considering euthanasia. It is of course also unjust that patients who are considering euthanasia become automatically and legally entitled to care in a hospice regardless of their actual care needs, and so they effectively "trump" all other patients who have no right similarly enshrined in law to ensure they will get a hospice bed, however desperately they might need it.

4.10  Integrity of the profession and impact on medical practice

  The potential effect on relationships between patients and their doctors and the impact on current medical practice should be considered:

    1.  The risk of losing trust and damaging care is high. This is an area of practice where research is needed to establish the consequences of legislation.

    2.  Would euthanasia and physician-assisted dying be legitimate treatment outcomes that doctors would be obliged to raise with all dying patients?

    3.  How will the new law be enacted if a majority of doctors conscientiously object to performing euthanasia and physician-assisted suicide? There would be a legal requirement for an "objector" to refer on to someone who has no objections. There would need to be local lists of participating doctors and nurses. The stress on these professionals could be enormous.

    4.  There is a strong possibility that some palliative care doctors could also refuse to carry out the required assessment consultation, fearing that they might become implicated in euthanasia.

    5.  The Bill only makes it legitimate for a doctor to provide the patient with the means to end his life. Despite the language ("attending physician"), the doctor is not required to be present at death, and the patient is not required to administer the lethal dose immediately. What safeguards are there to ensure that the lethal medicine is kept secure and administered properly? For how long should the patient be allowed to keep the lethal dose without administering it?

    6.  There is no mention in the Bill as to the methods involved in either assisted suicide or in euthanasia. It is worth noting that complications such as failure of completion, myoclonus and vomiting may occur in both assisted suicide and euthanasia in 3-16 per cent of patients resulting in traumatic experiences for patients.(20)

    7.  What would the costs (time, staff and money) be of training, implementation and compliance including the costs of staff and facilities?

4.11  Social implications

  What will be the effects on society of permitting direct acts of killing, and so weakening the prohibition against killing which currently protects us all? There are strong cultural, moral and legal prohibitions on killing but this Bill introduces the concept of death as a moral good. Will this new Bill change the way in which society views the sick and dying as an inconvenience that have to be disposed of?

  Will patients feel more of a burden to their families and society and feel that they ought to ask for euthanasia, and feel guilty if they don't? In other words, will the proposed new law actually increase the mental suffering of the patients who would not necessarily want euthanasia but need care and can easily be distressed by feeling a burden? As we have stated there is much that we need to learn about the impact of a patient's social circumstances in generating a request for euthanasia or physician-assisted suicide. Good qualitative social research is much needed in this area.


  Palliative care is concerned with enabling patients with advanced life-threatening conditions to live with the best possible quality of life until they die. Clinical experience and research suggests that the majority of requests for euthanasia or physician-assisted suicide arise as a result of poor symptom control, depression, poor social and family support and a loss of autonomy. Palliative care concentrates on improving these aspects of a patient's life and the provision of this care should be the starting point for any debate on assisted dying.

  Such care involves working closely with patients and their families' suffering. When a patient is in the terminal phase then the goal of care is to enhance the dignity of the individual. If this legislation is passed there is a risk that some patients will die against their wishes.

  The Association for Palliative Medicine opposes this legislation and suggest that the interests of dying patients, their families and our wider society would be better served by increasing access to palliative care, improving the communication between healthcare professionals and patients, gaining a better understanding of the needs of dying patients and informing the public about these highly complex issues in an honest way.


  1.  Battin MP. Euthanasia and Physician-Assisted Suicide in The Oxford Handbook of Practical Ethics Ed LaFollette H. 2003. Oxford University Press. Oxford.

  2.  House of Lords Report of the Select Committee on Medical Ethics. 1994 London: HMSO.

  3.  Materstvedt LJ, et al. Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force . Palliative Medicine 2003; 17: 97-101.

  4.  Ten Have H et al Ed The Ethics of Palliative Care: European Perspectives. 2002. Open University Press. Buckingham.

  5.  Hoy A. Written evidence to the House of Commons Health Committee regarding Palliative Care. Association of Palliative Medicine 2004.

  6   Wasson K et al The Ethics of Non-Cancer Palliative Care in Non-Cancer Palliative Care eds Higginson I, Addington-Hall J. 2002. Oxford University Press Oxford.

  7.  Sepulveda C et al, Palliative care:the World Health Organisation's global perspective. J Pain Sympt Management 2002; 24: 91-96.

  8.  Materstvedt LJ Palliative care on the "slippery slope" towards euthanasia. Palliative Medicine 2003; 17: 387-392.

  9.  Glare P et al. Predicting survival in patients with advanced disease. In Oxford Textbook of Palliative Medicine 3rd Edition Ed Doyle D, Hanks G, Cherny N, Calman K Oxford University Press Oxford 2004 pp 29-40.

  10.  HaverkateI et al Refused and granted requests for euthanasia and assisted suicide in the Netherlands: interview study with structured questionnaire. BMJ 2000; 321: 865.

  11.  George R (personal communication) Case against the Assisted Dying Bill To be submitted to The House of Lords Select Committee on Assisted Dying.

  12.  Lavery JV et al Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: a qualitative study. Lancet 2001; 358: 362-67.

  13.  Cochinov HM et al Will to live in the terminally ill Lancet 1999; 354: 816-19.

  14.  Back AL et al Commentary; Desire for physician-assisted suicide: requests for a better death? Lancet 2001; 358: 368.

  15.  Mak YY et al Patients voices are needed in debates on euthanasia. BMJ 2000 327: 213-215.

  16.  Kissane DW et al Seven Deaths in Darwin; Case studies under the rights of Terminally ill Act. Northern Territory Australia Lancet 1998; 352; 1097-102.

  17.  Sheldon T New penalties proposed for Dutch doctors who flout the law. BMJ 2004; 329: 131.

  18.  Onwuteaka-Philipsen BD, et al. Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001. Lancet 2003; 362: 395-400.

  19.  Keown J The Dutch in Denial? In Euthanasia, Ethics and Public Policy, Cambridge University Press Cambridge 2002.

  20.  Groenewood JH et al Clinical problems with the performance of euthanasia and physician-assisted suicide in the Netherlands New Engl. J Med 2000; 342: 551-6.


  The APM ethics committee would like to thank Dr Rob George, Dr Fiona Randall, Simon Chapman, Dr Pat Alquist, Dr Neil Jackson and Sheila Richards for their help in producing this report.

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