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

Memorandum by The National Group of Palliative Care Nurse Consultants


  The National Group of Nurse Consultants in Palliative Care brings together all the palliative care nurse consultants in England to promote excellence in the field of palliative care nursing. We are a reference group of expert nurses able to comment on and influence the development of policy and advise on its implementation in the field of palliative care.

  We firmly believe that the law needs no change to allow for euthanasia or any form of therapeutic killing to meet the needs of people approaching the end of their natural life. It is our view that no suffering is unamenable to relief when a patient and family and expert practitioners work together to tackle its complexities. It is our opinion, based on many years of clinical and personal experience that this Bill is fundamentally flawed and sets a dangerous precedent.

  We believe that the participation of nurses in helping patients to die fundamentally undermines the purpose of nursing in its duty of care and erodes trust between nurse and patient. Such a loss of trust could potentially increase suffering.

  Nursing is defined by the Royal College of Nursing (2003) as:

    "The use of clinical judgement in the provision of care to enable people to improve, maintain, or recover health, to cope with health problems, and to achieve the best quality of life, whatever their disease or disability, until death."

  A key characteristic of nursing is its concern with the whole person and the identification of "human responses to actual or potential health problems" (International Council of Nurses 1987). This means that the public expect a nurse to have the ability and the duty to engage an individual in a relationship of mutual trust, as well as providing for physical comfort. Thus, the relief of suffering, whether physical, social, emotional or spiritual is of central importance to the nurse-patient relationship. The relationship of trust that exists between nurses and the public is based on a dear understanding of the nature and quality of the service provided by nurses.

  This brings us to a critical issue in this debate, and that is the motivation and values that nurses have in caring. Our training emphasises care and encourages intuition and emotional intelligence. This is of immense value in walking the path with a patient. However, when the burden of witness is great and a suffering is sustained or the skills to engage and manage it are absent, the natural role that a nurse adopts is to identify with and voice that "pain" rather than to step back and evaluate it. This, however, does not translate into the commonly held myth that 80 per cent of nurses support euthanasia. What it does imply is that 80 per cent of nurses carry emotions accrued from entering into an important, laudable, but unresolved psychological relationship with the dying. Sadly, professional development and supervision only addresses these matters of professional grief and burnout if senior nurses have the skill to recognise and address them. For example, we find repeatedly in the classroom that nurses, regardless of their experience, over the years are deeply uncomfortable with the thought that they may at one time or another have administered an injection that, because it was the last, it must also have been fatal.

  Nurses are not good at analytical reasoning because they are not trained to stand back from the burden of witness to reflect on the strategy of care or issues in hand. Rather they will respond to and act upon the raw emotion that flows from the imperative to serve and care, which leads many to consider euthanasia as a necessity because they do not know how to manage suffering.

  We now turn to our principle objections.


Unbearable suffering

  The Bill states that it will allow:

    . . . for a competent adult who has 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."

  1.  We are gravely concerned as to how the degree of suffering is to be measured. Unbearable is a subjective term, open to interpretation. Patients, families and professionals often have divergent views. Despite a growing body of literature there is no reliable and valid way of measuring degrees of suffering. We re-emphasise that there is no suffering that cannot be relieved or removed if patients have the opportunity for expert clinical support and care by suitably trained staff. We challenge the assumption that the attending physician is able to determine that a level of unbearability has been reached. In our experience suffering is temporal and fluctuates.

  2.  The Bill's definition of suffering is narrow, somewhat simplified, and in several places is confined to the relief of pain. In contrast there is a growing literature and our clinical experience which point to its complexity. Psychological, spiritual, ontological or existential crises can all come under the rubric of this experience (Dewar and Morse, 1995; George and Martin 2004).

  3.  We argue that an appropriate response to suffering, which is core to the human experience, is care, commitment and presence. That by being present and accompanying individuals on a difficult journey we can help them explore meaning in their experience. Nurses affirming life dignify the individual. In our experience the number of people for whom this has not been possible, and have persistently asked to be killed is very small[148]and despite their continued suffering they have welcomed and embraced skilled and committed care from both generalist and specialist staff, and most, if not all, changed their mind as their illness progressed.

  4.  This Bill is a fundamental challenge to values and purpose of nursing. Caring for the dying is core and quintessential to nursing. In the minds of many, suffering is analogous to dying. The notion that one is able to remove suffering from dying is fanciful, and the idea that therapeutic killing further helps this process has the potential to drive out nursing from the care of the dying. Other times of human crisis at the end of life where a nursing response is essential will also be irrevocably compromised.

  5.  Another deep-seated fallacy in the Bill is that the eradication of unbearable suffering through euthanasia will lead to improved care for people who choose this option. According to the Bill a patient need not inform his/her next of kin. We recognise that this takes account of patients' rights to confidentiality, but we are astonished that the Bill's drafters and clinical advisers fail in any measure to register that suffering is both an individual and collective experience. By removing the burden of witness for families and by using euthanasia as a tool to diminish suffering we absolve ourselves from responsibility, devalue human life and dumb down nursing's duty to care for the dying.

  6.  The Bill makes the assumption that end of life care is physician led. This is an antiquated anachronism.

  7.  The conscientious objection clause is wholly inadequate and fails to take account for the pivotal role that nurses have in initiating discussions around end of life care.

  8.  The Bill is incompatible with the principles and practices of Palliative Care, which affirms life and intends neither to hasten nor postpone death (World Health Organisation 2003). This perspective of palliative care has been informed by many years' experience in clinical practice and only recently embraced in national policy.

  9.  The Bill is incompatible with the current policy direction (the availability of good palliative care for all); we have yet to attain the sentiment of this policy in practice. The intention that palliative care should be a robust alternative to therapeutic killing is laudable but not attainable until tenets of the modernisation agenda (accessibility; equitability, and timeliness) are achieved. We have not achieved these policy objectives by a long way. It would be wrong, therefore to allow this bill to become law.

  We now turn our attention to the implications for nursing practice.


  The Bill raises four major implications for nursing practice.

3.1  Qualifying conditions

  From experience we know that the qualifying conditions required by the Bill are extremely difficult to fulfil. In order for a patient to make a request for assisted dying they need to be aware that they are dying. Outside the field of palliative care very few patients are given this information explicitly[149]. A particular need for an improvement in communication skills amongst health care professionals has been identified by the Department of Health and training programmes are currently being rolled out nationally. The knowledge and skills required to discuss the choices available at the end of life, however, lie far in advance of those covered by these training programmes. There are times, even in specialist practice, where we fall short.[150] In short, a workforce who already has major difficulties in discussing simple questions about end of life care (eg preferred place of care) would struggle to include the option of therapeutic killing. We are offended that as a speciality the option of euthanasia might be discussed with dying patients by colleagues who do not have the advanced skills necessary to talk about other end of life issues.

3.2  Issues of informed consent

  Recent policy developments have reinforced the importance of informed consent. Our professional code of conduct demands that all patients have a right to receive information about their condition in order that they might make informed choices about available care and treatments (Nursing and Midwifery Council 2002). If euthanasia became lawful, nurses caring for the terminally ill would be duty bound to ensure that patients were made aware of assisted dying, whether they had requested it or not. The implications of this fact on the nurse-patient relationship are highly significant. If euthanasia were made a "moral good" nurses' ethical responsibility would be turned on its head. The potential for causing psychological, emotional or spiritual distress and suffering to those who do not want to discuss assisted dying is considerable. At a time when individuals are at their most frightened and vulnerable, nurses would be required to discuss death as a "care and treatment" option. As clinical leaders we find this repugnant.

3.3  Implications for the practice of palliative care

  The Bill states that it is a requirement for people seeking assisted death to be seen by a specialist in palliative care. This requirement produces an ambiguous effect. On the one hand it ensures that patients will be made aware of the palliative care expertise available, but on the other hand it marries palliative care with assisted dying. We take issue with the consequences of this ambiguity.

  First, the association between assisted dying and palliative care will confuse people's perception of palliative care. The work that has been done to develop an understanding that palliative care is applicable throughout an illness will be undone. The association with death will be re-established. This will be to the detriment of our speciality and the work that has gone in to establishing it at the very time that it is staring to bear fruit. We have to recognise that palliative care is far from the standard and quality it should be.

  Second, for any practitioners who are motivated enough to train in palliative care, the internal conflict and discord between the values espoused in the Bill and those in authentic specialist palliative care practice are unsustainable. This discordance undermines inter-team working. The positive model of collaborative and complementary working developed by many palliative care services will be threatened and undermined. In addition we can anticipate that the requirement for a consultation with a palliative care specialist may have a very detrimental effect on Palliative Care Teams with issues of conscientious objection and personal values and views on this issue undermining teamwork and common team values.

  Third, the conflicting agendas within the proposed consultation with a palliative care specialist in the Bill will lead to confusion with respect to the intent of the consultation—is it to complete a requirement for the process of attaining assisted dying or to assess how a person's suffering may be supported and if possible relieved through palliative care provision. If it is the former, it is not a palliative care assessment. If it is the latter, then assessment takes at the very least a week, and in proportion of the severity of the suffering, may take months.

  The impression we are left with from the Bill is at best lip service and at worst a parody. We are most disappointed that the Lord Joffe and the VES who drafted the Bill clearly have no understanding of the nature, purpose and complexity of authentic palliative care nursing. Assisted dying has no place in palliative care.

3.4  Preparing Acts

  It is well known in the caring professions that nurses, not doctors are the clinicians who look after patients as they die. There is absolutely no recognition of this in the Bill. If the Bill were to progress to the statute book then nurses would undoubtedly be intimately involved at every stage: sensitive listening and responding to patient's requests by alerting medical colleagues to a request for assisted dying; supporting the patient through the decision making process and acting as the patient's advocate when required; it is also custom and practice that doctors prescribe and nurses prepare and administer medication. This is yet another example of an ill-considered piece of proposed legislation as there is every likelihood that doctors will assume that nurses will also prepare injections for therapeutic killing or administer oral medications for assisted dying. It is nurses who attend to the deceased, support the family through the process and through to bereavement, and not infrequently who are left to field the raw emotions of relatives and friends who may have been unaware of the patient's death.

  In Holland the lack of recognition of the breadth and depth of these roles has caused significant confusion over the legal status of the nurse's role in what are called "preparing acts" (Hermsen and Kuunders 2004). There is a tendency to view such acts as technical ones associated with the killing itself. The wider counselling, supporting and comforting roles of the nurse are far more significant. The nurse's role in the provision of and contributing to decision making as equal partners with our medical colleagues must be recognised and legally acknowledged within the framework of the bill. Nurses are personally accountable for their practice, answerable for their actions and omissions, regardless of advice or directions from another professional (Nursing and Midwifery Council 2002). This autonomy must be enshrined within this legislation in order to prevent coercion and erosion of the nurse's integrity. This has been the experience in Holland and will become the experience in the UK.


  We would suggest that what is required to meet the needs of those with unbearable suffering is a collective response on behalf of health and social care providers, policy makers and society in general to close the gaps in service provision and to reduce inequities wherever they exist. These are widespread and wholly unacceptable.

  By allowing this Bill to pass an inevitable societal pressure would ensue. As nurses we have a duty to protect the most vulnerable in our society who as a result of such pressure may be made to feel their lives of no value. We believe this can clearly be seen in the Dutch experience where patients who have not volunteered their consent or sought assisted dying have been killed by doctors against their wishes for economic reasons such as bed pressures (Hendin 2002). The potential for therapeutic killing to be used as an economic health care option in an ageing population and limited economic resources is of the greatest concern.

  The legacy that a "bad death" leaves in society is a destructive one and yet evidence exists to demonstrate that skilful nursing care makes a significant difference to patients. Skilled nurses can deliver care in a "friendly" manner that encourages patients to talk intimately about their concerns (Hunt 1992, May 1995). This is particularly important in the cultural context of death and dying. Patients attach importance to such relationships, value them and feel supported by them. Our efforts should be focused on raising the levels of skill amongst the healthcare team to relieve suffering not eliminating the problem by eliminating the patient.

  It is consensus view of this expert body of Nurse Consultants in England that if the latter became an option, we would have no choice but to leave nursing.


1. Dewar A L and Morse J M (1995) Unbearable suffering: failure to endure the experience of illness. Journal of Advanced Nursing 22 (5), 957-964.

2.  George R, Martin J (2004) Non-physical pain: suffering in action. In: Royal College of Physicians. The effective prevention and control of symptoms in cancer. RCP, London (in press).

3.  Hendin H (2002) The Dutch Experience. Issues Law Med 17 (3): 223-46.

4.  Hermsen and Kunders (2004) Nurses' role in euthanasia in the Netherlands. International Journal of Palliative Nursing Vol 10 (5): 249-250.

5.  Hunt M (1992) "Scripts" for dying at home-displayed in nurses', patients' and relatives' talk. Journal of Advanced Nursing 17, 1297-1302.

6.  International Council of Nurses (1987) Position Statement. Geneva: ICN.

7.  May C (1995) To call it work somehow demeans it: the social construction of talk in the care of terminally ill patients. Journal of Advanced Nursing 22 (3): 556-561.

8.  Nursing and Midwifery Council (2002) Code of Professional Conduct. London UK.

9.  Royal College of Nursing (2003)

10.  World Health Organisation (2003)

3 September 2004

148   We can quantify this for the Committee at a later date if required. Back

149   This point can be expanded for the Committee if required. Back

150   This point can be expanded for the Committee if required. Back

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