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


Memorandum by the Royal College of Nursing of the United Kingdom

EXECUTIVE SUMMARY

  The RCN is against the proposals in this Bill. Our primary concerns are:

    —  More attention needs to be given to the provision of high quality palliative care, available to all who need it. This must include proper pain control and psychological care. We feel that it is imperative to address the palliative care needs of dying people in order to make their last days more comfortable, rather than clinically assisting death. Patients want control, dignity and comfort.

    —  There is a real danger that the proposals in the Bill could undermine the nurse-patient relationship, leading to a culture of fear amongst vulnerable people at a time when they most need to feel supported by their clinical team.

    —  The proposals in the Bill will be unacceptable to many nurses on moral, ethical or religious grounds. Nurses in all clinical settings—not just specialist palliative care nurses—could potentially care for dying patients. It is not a discrete area which is easy to opt out of in the way that, for example, abortion is.

    —  Respect for the intrinsic value of all life is central to nursing. The proposals in the Bill normalise the concept that the lives of those affected by serious illness are not worth living.

    —  These proposals could put pressure on many vulnerable patients, who might feel a duty to use the provisions in the Bill to avoid becoming a burden on their families. Further, relatives who can't bear to see their loved ones in pain may put pressure on clinicians to inappropriately assist death—rather than addressing the core problem, which is ensuring appropriate pain relief and symptom management.

1.  INTRODUCTION

  1.1  With a membership of over 370,000 registered nurses, midwives, health visitors, nursing students, health care assistants and nurse cadets, the Royal College of Nursing (RCN) is the voice of nursing across the UK and the largest professional union of nursing staff in the world. RCN members work in a variety of hospital and community settings in the NHS and the independent sector, and in educational settings. The RCN promotes patient and nursing interests on a wide range of issues by working closely with Government, the UK parliaments and other national and European political institutions, trade unions, professional bodies and voluntary organisations.

  1.2  Nurses deliver 80 per cent of hands on care to patients, and are often the closest clinicians to them towards the end of life. Nurses can support patients and families, and have a key role to play in communicating and information sharing. The comfort and dignity of dying patients is potentially a responsibility of registered nurses and health care assistants working in all settings, as well as for specialist palliative care nurses.

  1.3  The RCN has a wide membership which naturally reflects a variety of views. We have looked at a wide range of comments from our members and have decided to maintain the position reflected in this paper on behalf of both nurses and patients. Overall, our membership is opposed to the proposals in the Bill.

2.  PALLIATIVE CARE AND PAIN RELIEF

  2.1  RCN members feel strongly that high quality, easily accessible palliative care services, which meet people's physical and psychological needs, should be in place for all patients who need them. Adequate pain and symptom control management could alleviate some of the concerns which lie behind this Bill.

  2.2  Patients do not always have adequate choices in palliative care. Differing provision across the UK has created a system where the level of palliative care received is often dependent on location. Nurses want to ensure that all their patients receive the appropriate high standard of care wherever they live, and irrespective of illness, both in acute settings and in the community. Patient choice is particularly important in palliative care; however a shortage of community palliative care teams means that patients who want to die naturally at home are not always given that option. In particular, while adults with a cancer diagnosis for the most part now receive good palliative care services, many patients with other terminal diseases—such as degenerative motor neurone disease or chronic obstructive pulmonary disease (COPD)—are not able to access appropriate services. This gap in provision needs to be urgently addressed. RCN members debated this at our annual Congress in May 2004 and voted overwhelmingly to lobby for improved palliative care services.

  RCN member: "I have nursed at least one patient who was adamant he wanted to die, but when his quality of life had been improved completely changed his decision. How many more cases are there like this?"

  RCN member: "Unrelieved (intolerable) pain is often cited as a reason for people wanting to die. However, hospice doctors tell us that even intractable cancer pain can be relieved in 90 per cent of patients and significantly relieved in the other 10 per cent[2]. Once a patient's symptoms are under reasonable control, few people who requested euthanasia on initial contact with a hospice persist in doing so. The answer would appear to be to increase the provision of hospice care rather than legalising voluntary euthanasia."

  2.3  These issues were highlighted recently by the thorough report on palliative care produced by the Commons Health Committee.[3] This report also noted that palliative care services are often not culturally sensitive, and this must be addressed.

  2.4  The Bill contains provision that a patient with a terminal illness shall be entitled to receive pain relief. This right already exists and all patients who need it should be able to access pain relief without the need for this legislation. The responsibility of nurses, working with others from the multi-disciplinary team, is to ensure that the final weeks of those with a terminal illness are as pain free, positive and dignified as possible. Clause 15 is unnecessary.

  2.5  What is needed is better training, education and resources for all clinicians to ensure that they have a proper understanding of pain control. This must go hand in hand with a properly funded service across the UK for all who need it. Complementary therapies also play a significant part in palliative care sought by patients and this area should be given more attention.

  2.6  A situation where a clinician delivers drugs deliberately to end someone's life is very different to a situation where a person administers drugs with the aim of relieving pain, even if that action may have the secondary effect of hastening death. The RCN does not consider that Clause 15 changes that distinction; nor that it should.

  2.7  In particular, we must guard against the provisions in this Bill being used as a substitute for universal provision of palliative care services. Several members raised the fear that provisions in this Bill could be inappropriately used to ease the economic challenges of providing long term and palliative care.

3.  PSYCHOLOGICAL SUPPORT

  3.1  For some patients, social issues or psychological distress may lead to feelings of wanting to end life. This is indicative that appropriate mental health services and psychological support are not being provided. Culturally appropriate psychological support is a key component of care, and must be provided as part of the care package. We do not feel that adequate provision has been made for this in Clause 8, which deals specifically with patients who lack competence.

  3.2  As an RCN member pointed out, the desire in terminally ill people to die is recognised as being transient for many:

    "A study reported in the American Journal of Psychiatry noted the `inherent transience' of the desire for death in many terminally ill patients. This desire, it said, is closely associated with depression—`a potentially treatable condition'—and often diminishes over time."[4]

  3.3  This highlights the need for a comprehensive care package.

4.  NURSE—PATIENT RELATIONSHIP

  4.1  The Bill anticipates the potential assistance of nurses in assisted dying; however nurses as a professional group have little mention in the wording of the Bill. For example, there is no mention of counselling or education for nurses expected to be involved in these procedures.

  4.2  The RCN feels strongly that the proposals in the Bill could jeopardise the nurse—patient relationship, eroding public trust in nurses. It is nurses' duty to protect the weak and vulnerable, and any perception that they would not act in this way could generate a culture of fear among vulnerable people. Some members commented on the vast shift in the cultural and ethical basis of nursing which would need to be made in order to justify participation in assisted dying.

  RCN member: "Would there be a lack of trust between patients/carers/practitioners once the `goalposts' have moved?"

  RCN member: "As a nurse I would be very uncomfortable working in a health system that assisted people to die when surely we should be striving to care for people's physical, mental and spiritual health in this life."

5.  CONSCIENTIOUS OBJECTION

  5.1  The proposals in this Bill would be objectionable to many nurses on moral or ethical grounds, or for religious reasons. Although Clause 7 touches on the right of objecting physicians to refer patients on, it does not adequately deal with the rights of the wider clinical team. Further, nurses in all settings potentially work with terminally ill patients. This is not a discrete area which is easy to opt out of in the way that, for example, abortion is.

  5.2  The difficulty in opting out of assisted dying could create real tensions in settings such as small nursing homes, where there are fewer numbers of registered nurses. If even one or two wish to opt out of dealing with those patients who request assisted dying, maintaining an appropriate level of care would be a challenge.

6.  EQUALITY AND PROTECTION OF THE VULNERABLE

  6.1  RCN members have expressed concerns that the proposals in the Bill devalue life by normalising the concept that the lives of those affected by serious illness are not worth living. Nurses feel strongly that all individual lives have intrinsic value, with equity of access to treatment being a cornerstone of nursing.

  RCN member: "As nurses we want to promote patient rights but not at the expense of our responsibilities as nurses (our duty to care) and in society to protect the weak and vulnerable."

  6.2  Ageing, sickness and dying are part of life and several members were wary of trying to inappropriately intervene clinically in their due process. Members commented that, however emotionally difficult, a natural death with time to say goodbye can ultimately be peaceful for patients and therapeutic for families.

  RCN member: "palliative care medicine/nursing provides end of life care that, in most cases, provides relief from the distressing symptoms of terminal malignant disease, allowing precious time with loved ones. And for those without carers or family, it is my experience that some isolated, lonely people have died in an environment where they feel loved and cared for. Is this not what the medical and nursing profession is about? It is my conviction that knowledge of the skills that produce effective palliative care are still widely unknown amongst medical and nursing staff and even less so amongst the public."

7.  PRESSURE ON PATIENTS TO COMPLY WITH ASSISTED DYING

  7.1  Many RCN members voiced the fear that vulnerable patients, and especially older people, would feel a duty to use the provisions in the Bill in order to avoid becoming a burden on their families. We do not consider that there are sufficient safeguards to avoid this. Further, we have concerns that relatives could inappropriately place pressure on relatives to request assisted dying, and that again safeguards were not in place to prevent this.

  7.2  Such pressure would be exacerbated if the necessary palliative care package was not in place. Again, there is a real concern that assisted dying could inappropriately replace properly funded and implemented quality end of life services.

  RCN member: "The most important people to consider are the patients. If they were to think that this was a possibility, would they also think there was a responsibility on them to die quicker so that they wouldn't be a burden?"

  7.3  Families would also come under pressure to relieve their relatives of pain where appropriate palliative care services were not available. However this would not be addressing the core problem, as one RCN member put:

    "I have absolutely no doubt that introducing legally acceptable assisted death will put unbearable pressure on both patients and their families at a time when they are at their most vulnerable. This was brought home to me in a most tangible way with death from heart failure of my own father eight years ago. It has long been known that death from heart failure can be an agonisingly slow and painful process and that none of the palliative care so effective in cancer sufferers is currently available to them. My father had a horrible time dying and it was an extremely difficult time for the family. The GP was unwilling to provide morphine (in case it depressed cardiac function) and he suffered a great deal of pain. Had assisted death been legal at the time I would have felt under extreme pressure to ask for it, and indeed many was the time that I contemplated in my mind at least, smothering him with a pillow to put him out of his pain. However we persevered with the GP and eventually morphine was prescribed. I cannot begin to describe the difference that this made. Suddenly my father was pain free, he rallied enough to receive the family and died in peace knowing that the end was near but free from the fear that the constant pain of a failing heart. Our family was left with memories of a good death."

  7.4  Again, this highlights the need for a comprehensive care package.

8.  LEGAL ISSUES

  8.1  Competent adults already have the right to refuse any medical treatment even if that refusal results in their death. It is important that patients understand their right to refuse treatment, so that they are not in fear of inappropriate and unwanted medical intervention. Conversely, it is legal for clinicians to administer medication with the purpose of reliving pain, even if that medication may have the secondary effect of hastening death. Nurses can play an important role in communicating this. The Mental Capacity Bill currently progressing through Parliament will enshrine in legislation the authority of advance decisions by patients to refuse certain treatments. The RCN welcomes this inclusion as a valuable tool to help those people who may lack capacity in the future. We consider that the Mental Capacity Bill further strengthens the argument that the Assisted Dying Bill is unnecessary.

  8.2  The RCN does not consider that the safeguards in the Bill are robust. For example in the Schedule the expression "appears to be of sound mind", in the opinion of the legal and other witness to the declaration, is vague and undefined. Further, the definition of "competent" is also very vague, and appears to bear no relationship to the understanding of competency either at common law or under the forthcoming Mental Capacity Bill (and its Scottish equivalent, the Adults with Incapacity (Scotland) Act 2000). The expression "terminal illness" is imprecise given the role it plays in this Bill's criteria for eligibility. Many patients have been told they have days to live and have gone on to live for months or years.

9.  CONCLUSION

  9.1  For the most part nurses do not consider that the proposals in this Bill will better support patients, but that the imperative should be to provide improved palliative care for those with terminal illness. Culturally appropriate palliative care and psychological support should be available to all who need it. The RCN does not support this Bill.

October 2004


2   Twycross, R (1994) Pain Relief in Advanced Cancer. London, Churchill Livingstone. Back

3   Commons Health Committee (2004) fourth report of session 2003-04 HC 454-1HMSO. Back

4   Chochinov, Wilson et al (1995) Desire for Death in the Terminally Ill, American Journal of Psychiatry 152:8, 1995. Back


 
previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2005