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

Examination of Witnesses (Questions 354 - 359)



  Q354  Chairman: Today this is our opportunity to hear from the National Council for Hospice and Specialist Palliative Care Services and also the Association for Palliative Medicine. First of all, I would mention that the evidence will be transcribed and the witnesses will have an opportunity to see the transcript so that they may correct any errors that may have crept into the transcription. We would propose a session of around an hour and a half—it could be flexible; it is not absolutely rigid. But that is what we have in mind—and we would have in mind that you would wish possibly to make short opening statements. We have, of course, your written submissions, but short opening statements, either each of you or one or two, just as you feel inclined—obviously, we would expect something from each group represented here—and then we would have an opportunity for the members of the Committee to ask questions in elucidation. Thank you.

  Dr Tate: Thank you, Lord Chairman. I will begin and my colleagues will then introduce themselves and address you briefly, if that is acceptable. I am Teresa Tate. I have been a consultant in palliative medicine at Bart's and the London NHS Trust for 14 years, with 10 of those years also spent in a hospice. I am now the Medical Adviser to Marie Curie Cancer Care, and I am here as the Chair of the Ethics Working Group of the National Council for Palliative Care. This is a multi-professional umbrella body for palliative care services in England, Wales and Northern Ireland, which is made up of all the professional bodies and major charities involved in the delivery of specialist palliative care. Help the Hospices is a member of the National Council and has submitted evidence to this Committee. All of my colleagues will be happy to give evidence based on our experience of hospice practice, and Help the Hospices would be happy to provide written answers to any question about their evidence that you may have. In compiling the National Council's evidence we have focused mostly on specific aspects of the Bill but wish to open by emphasising our general concern that there is almost no robust evidence to properly inform the debate, either among healthcare professionals or the wider public, on all the issues which must be resolved before a decision to legalise physician-assisted dying is taken. Specifically, we have identified concerns about the inadequacy of the Bill's definition of the required qualifying characteristics of patients. For example, the phrase "unbearable suffering" has no measurable objective measures and, thus, no safeguards in practice. There is no secure definition of "competence" and no protection for patients who are considered competent but may be depressed. We also do not believe that the waiting period of 14 days allows an adequate time to complete the requirement of Sections 2 and 3 in an optimal way for the patient. We have particular concerns about the way in which the speciality of palliative care is presented as an alternative to physician-assisted dying. The Bill does not recognise that the practice of palliative care is of most benefit to a patient and his family when it takes place in a trusting evolving relationship during the course of advanced illness, and not just in the terminal phase, with the multi-professional team providing care which allows complex psychological and spiritual issues to be aired and addressed over time. We want to emphasise that there is absolutely no need to introduce legislation to entitle patients to adequate pain relief, the provision of which is soundly based in evidenced clinical practice, and that to propose to do so in this Bill risks confusing two very different concepts and perpetuating any misconception which may exist in the mind of the public about the role of the hospices and palliative care. Finally, we are concerned that the practical, financial and manpower implications are not addressed by a Bill which would place considerable pressure on an already under-resourced and inequitably distributed small speciality. The National Council wishes to record that a diversity of views on assisted dying is held by palliative care professionals. However, whatever their views about the underlying principles, there is a broad consensus that the introduction of physician-assisted dying would represent a radical departure from clinical practice in this country. If it is legalised, health professionals would be under a duty to raise it as an option with their patients. We do not believe that health professionals or society have fully assessed the implications of this change, and we reinforce the call for properly funded and methodologically sound research as a first step in the debate.

  Dr Jeffrey: Lord Chairman, I am David Jeffrey, Chair of the Ethics Committee of the Association for Palliative Medicine of Great Britain and Ireland. This is a professional organisation for over 800 doctors either working, or with a particular interest, in specialist palliative care. I am a consultant in palliative medicine at the Edinburgh Cancer Centre at the Western General Hospital, and I have worked as a Macmillan consultant at the Three Counties Cancer Centre in Cheltenham. I also have twenty years experience as a general practitioner. Thank you for inviting me to give evidence on this complex issue. The Association for Palliative Medicine believes that the Assisted Dying Bill is detrimental to the care of dying patients. The terminology of the legislation is misleading; the practicalities of the Bill, including patient assessment and implementation of medicalised killing, unworkable, and resource issues have not been addressed. The issue of pain relief is provided for in existing law and is already part of good practice. Regulation is ineffective, as monitoring occurs retrospectively after the patient has been killed. The safeguards are inadequate to protect the vulnerable. There is a great need for research into the views and decision-making process of dying patients. Exploring and engaging with a patient's suffering are core elements of palliative care. We believe that this Bill would make this vital work even more difficult. Palliative care physicians do not intend to be involved in the administration of physician-assisted suicide or euthanasia. The Association for Palliative Medicine is opposed to this legislation for the reasons summarised in our submission, and I am grateful to the Committee for this opportunity to answer questions.

  Dr George: My Lords and Ladies, I am Dr Robert George. I am a consultant in palliative medicine and a clinical ethicist in the Centre for Bioethics and Philosophy of Medicine at UCL. I am on both ethics committees represented here and I advise extensively on the law and ethics of end-of-life care. I have cared for almost 20,000 patients over 17 years, and I am one the pioneers of non-cancer and adolescent palliative care worldwide. For brevity I make a series of statements from my evidence and, in response to available transcripts on the web, I have circulated the series of cases I referred to in my original submission today, as I understand that they have not reached you before, and I apologise for that. Should any wish to discuss them in detail outside this meeting, I will be most happy to oblige. The effects of legalising assisted dying and therapeutic killing will be profound and costly on society's view of its members and its proposed demands on the caring professions to reverse the various code and duties relating to life and death. In this the responsibility of this Committee is enormous an unenviable. To my mind the heart of this debate lies in the preservation and promotion of the human rights and freedoms for all. To begin with some facts, first, death is inevitable, and in that dying the burden of disease, or causal gradient, as death approaches, is so great that the matter for the patient is not bringing death on but either clinging to life or letting go of it. Palliative care clinicians know this; academics and other clinicians tend not to. I cannot emphasise this more. All patients are able to die when they want to by letting go of life. Second, palliative medicine in the UK requires four years' training for accreditation, and units have to meet clear standards to be classified as specialist. Despite being recognised as a world leader, general training in palliative care in this country is paltry, services are patchy and inconsistent and thousands do not get the care they deserve. Nevertheless, the disorders of magnitude are better than that abroad. For example, in Europe or America hospice and palliative care clinicians have nothing like the level of training and specialisation. Claims, for example, that patients are in receipt of palliative care in Oregon demonstrate this. One in four applicants for therapeutic assistance to die have uncontrolled pain. Furthermore, multi-disciplinary assessment seems questionable, with half not being assessed by psychologists. This is most disturbing as incapacity and impaired judgment from psychological distress are subtle, and depression is very difficult to exclude in the dying. Oregon psychiatrists report confidence in the diagnosis in only 6 per cent of cases. Third, the "heart-sink" cases that I describe in my submission show, on the one hand, that skilled specialist practice is capable of engaging suffering, promoting true autonomy in dying and, in even the most difficult situations, without resorting to therapeutic killing; but, on other hand, they demonstrate that this Bill would profoundly hinder or abolish this ability to assist dying properly. Turning to broad issues, I have reviewed the literature systematically and may be able to offer additional comment on previous unresolved questions. For example, the desire for death, aside from the minefield of psychological distress, demoralisation and depression, revolve around poor symptom management, loss of control and dissatisfaction with care, but, most worrying in Oregon, a rise in applicant's feelings of being a burden to the family, from less than one in five after their first year to over one in three within four years. Second, double-effect plays little, if any, role in specialist practice, as my cases show. Nevertheless, the distinction of killing and letting die in medicine remains valid. Academics tend not to appreciate this, as they have no experience of enacting ethical decisions at the coal face. However, many doctors and nurses are also vulnerable to emotive feelings, for example, in terminal care, because they confuse temporal links, such as death soon after an injection, with that injection having caused death. The majority of junior and, regrettably, many senior clinicians worry and report that they have given lethal injections when they are actually falling into this temporal causal fallacy and shoulder the burden of this misconception throughout their careers. Third, I show a figure on page six of today's submission. I propose that, because this Bill reclassifies in statute death as a potential medical treatment, we cannot restrict therapeutic killing ethically to any one group; hence safeguards and restrictions are meaningless. These will not stand the scrutiny of the courts, for they cannot. Case law and the epidemiology in Holland show this clearly. Predictably, Dutch doctors are now increasingly worried by economic pressure, now that therapeutic killing can reasonably be seen as part of heath economics. Unfortunately, Oregon's data do not record these risks to vulnerable patients' autonomy. Finally, as we know that one in five euthanasias in Holland are not voluntary and considered the best interest, I believe that the central human rights question to answer is: how many patients in the UK are we willing to have killed without their permission as the cost for a tiny minority wanting their suffering resolved by euthanasia ie autonomy as self-determination, rather than asserting their autonomy as self-government to engage it and let go with help and specialist palliative care? Such is authentic dying.

  Ms Robinson: My Lord, my name is Vicky Robinson. I am a nurse consultant in palliative care and have worked exclusively with the dying for sixteen years; prior to that I was a District Nurse. I am also a member of the Ethics Working Group of the National Council for Palliative Care. My principal purpose here today is to represent the view of the National Nurse Consultant Body in Palliative Care. We are a group with a collective experience of over 200 nurse-years in specialist practice. We have considered the matter at length and are unanimous in rejecting the benefits that are claimed for assisted dying. As the nursing experts in this field, we have   grave concern for the extent, quality and sustainability of palliative skills in the nursing work-force. Specialist training in palliative care and terminal care is not nearly as available as it should be. The relief of suffering with the physical, social, emotional and spiritual is central to the nurse/patient relationship. However, when the burden of witness is great, suffering is sustained or the skills to engage and manage it are absent, the natural role that a nurse will adopt is to identify with and voice that pain rather than to step back and evaluate it. However, this does not translate into the commonly held myth that between 60 and 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. All too often nurses respond to an 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. This is likely only to get worse as nurses' time with patients is squeezed by the resource issues in the NHS and poorly-trained staff are drafted in from other cultures to provide care. In our experience, suffering is temporal and fluctuates. Research shows that skilled nurses can deliver care in the manner that encourages patients to talk intimately about their concerns. Patients attach importance to such relationships, value them and   feel supported by them. This therapeutic relationship is crucial in care of the dying. I wish to emphasise at this point 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. Our efforts should be focused on raising the levels of skill amongst the health care seen to relieve suffering, not eliminating the problem by assisting in the elimination of the patient. Turning now to care for the family, according to the Bill a patient need not inform his or her next of kin. We recognise that this takes account of patients' right to confidentiality, but we are astonished that the Bill does not acknowledge that suffering is both an individual and a collective experience. It is nurses who attend to the deceased, support the family through the process and through to bereavement; and not infrequently it is nurses who face the anger of relatives and friends who may have been unaware of the patient's death. The Bill states that it is a requirement for people seeking assisted death to be seen by a specialist in palliative care. Is this 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? If it is the former, it is not a palliative care assessment. If it is latter, then assessment takes, at the very least, a week and, in proportion to the severity of the suffering experienced, may take months. The association between assisted dying and palliative care will confuse people. This will be to the detriment of our speciality and the work that has gone into establishing it at the very time when it is starting to bear fruit. We have to recognise that palliative care is far from the standard and quality it should be. Doctors will assume that nurses will also prepare injections for therapeutic killing or administer oral medications for assisted dying. 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". 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 resource implications of implementing the change in law advocated by this Bill would, in our view, be far greater than those required to extend the good work started by the hospice movement, advocated by the NICE guidance for supportive and palliative care and the National Council's strategic decision to emphasise the extension of palliative care to all. Finally, I want to emphasise that assisted dying is a misnomer. Midwives assist birth; palliative care nurses assist the dying with specialist palliative care: assistance is not killing. The use of the term "assisted dying" is offensive to those of us who are giving good care at the end of life and is a deception to sanitise the killing to make it more palatable to the public, the implication being that you can only die with dignity if you are killed.

  Mr Gallagher: Finally, my Lord Chairman, my name is Donal Gallagher. I have been a qualified social worker for thirteen years and nine of those years have been in specialist palliative care based at the Wisdom Hospice in Rochester, Kent. I have also been an active member of the Association of Hospice and Specialist Palliative Care Social Workers; and, whilst I am here today in the context of the National Council for Palliative Care, my presence is also to ensure that this evidence is reflective of the nature of palliative care services in the UK—that is, holistic and multi-disciplinary. The written submission from the Association mentioned to this Committee made it clear that from the small piece of research that has been conducted there is a diversity of views on the principle of assisted dying. The main finding of this research suggested a need to continue an informed discussion about the   professional, practical and philosophical implications of this process. Those working with the psycho-social needs of those affected by terminal illness wish to contribute to the deliberations surrounding assisted dying, but at present specialist palliative care social workers are not in a position to offer a mandated view. This echoes the absence of sound evidence into the impact of assisted dying identified in the National Council's written submission. Nevertheless, the whole persona approach of palliative care and social work's specific role in working with the non-physical aspects of those affected by a life-threatening illness does provide a framework in which this Bill can be viewed. There is only a passing recognition in this Bill of the range of causes of pain at the end of someone's life. "Unbearable suffering" is "by reason of pain or otherwise". A more explicit recognition of the emotional, social and spiritual context of pain and suffering is required. If "unbearable suffering" is to have any meaning in these circumstances, it must acknowledge directly total pain, whereby suffering can have a psycho-social or spiritual origin. The social factors which could cause and have in my experience caused someone to want to die prematurely include the absence of significant supportive relationships in their life or, conversely, the presence of hostile and pressurising relatives. If this were recognised in the Bill, it would be equally imperative to ensure these needs are suitably assessed by specialists. Once again, the Bill's emphasis is on the physical and medical. Doctors and nurses play an essential role in the care of those who are dying, but, with such a vital issue as assisted dying, discussing the option of palliative care must be multi-disciplinary if the discussion or assessment is to be meaningful. Independence in the Bill to ensure the dying person's total needs are appropriately listened to and assessed is missing. The requirement for one of the witnesses to be someone other than a member of the medical care team or the patient's relative or partner hints at the need for independence in the process, but is diluted by the fact that an unmarried partner of a patient could legally be a witness. The relationship between assisted dying and palliative care is complex. In practice, I have often heard voiced by patients and relatives the belief, and for some the fear, that hospices already engage in a form of assisted dying through the administration of drugs. It is therefore reasonable to assume that legalising assisted dying and creating the association with palliative care would add credence to this pre-existing belief and compromise or complicate the various relationships between those receiving palliative care outside any legislation and the multi-disciplinary team. Once again, it is important to carry out robust research with those currently receiving palliative care if the effects of legalising assisted dying are to be fully understood and considered. Thank you.

  Chairman: Thank you. Would members of the Committee who wish to ask questions please begin?

  Q355  Lord Carlile of Berriew: I must confess, I am in a bit of a muddle having heard your evidence, because we have heard number of witnesses, including representatives of various royal medical colleges and medical bodies, accepting that there is some pain that cannot be relieved by palliative care. Dr George said, "All patients are able to die when they want to by letting go of life", which certainly would appear to be inconsistent with Dianne Pretty's position, which included not just being not being able to let go of life but having to go to court to try and persuade the courts that she should have assisted suicide; and Miss Robinson said, "There is no suffering that cannot be relieved", which again seems to be contradicted by the Dianne Pretty case and is possibly also contradicted by your own other statement, Miss Robinson, that palliative care is "not what it should be", which suggests that in various parts of the country at least less satisfactory levels of palliative care may be available. So my fundamental question is: is it right that there is no suffering that cannot be relieved? and, if so, I would be interested in your comments on cases like the Dianne Pretty case, which has provided the impetus for this Bill?

  Dr George: Thank you for asking that question; it is a very important one. One of the things that I would like to say is this—and I did not look after Dianne Pretty, so I have the information that we have seen before us in the news and so forth.—The greatest concern and sadness that I feel for the case is that, in the majority of patients that we look after, there are reasons for being alive and reasons to die. For example, if you are English there is a peak of death after Christmas; if you are Jewish there is a peak of death after Jewish New Year; if you are Chinese there is a peak of death after Chinese New Year; people die after anniversaries; people die after fulfilling events. My great sadness around the situation with Mrs Pretty is that actually the process that she went through may well have been something that kept her alive, because it is ironic that she died within weeks of the judgment of the European court. I cannot comment upon that, but my concern is, particularly with patients who are having difficulty in, as it were, letting go and allowing the process of their dying to continue even though they want it to, that there are other reasons that are stopping them doing that. They may be social, they may be emotional, and they may be spiritual. There are circumstances that lead to these impediments. The point that I am making is that, if we are engaging suffering of individuals, then we are excavating into the reasons why that may be. If we are then in a position (and, of course, the patient has to collaborate and cooperate with us in this) to go through the process of engaging those issues, then it may be perfectly possible for them, and indeed I would say is perfectly possible for them, to die with great ease and comfort. I can give you examples of patients who have a prognosis of—

  Q356  Lord Carlile of Berriew: Can I pin you down on one point? Lord Joffe's Bill is underpinned by the confident statement we have heard repeatedly that there are cases in which palliative care cannot relieve suffering. Is that true or not?

  Dr George: I think if you look at the quality of palliative care across the nation there will be situations where that cannot be resolved. There are situations where suffering is partly resolved or is unbearable because a patient is unwilling or unable to look at the situations that are leading to that suffering. Patients that I have looked after who have requested assisted dying are people who wish to be in control, people who refuse treatments, people who are not willing or prepared to engage the issues that may underlie the problems that arise. That is an autonomous right that they have to say "no" to those things, but the consequence of that may be that their suffering is prolonged as a result of that. In patients who do address that, then these matters resolve themselves. If there are not the skills to deal with those things, the multi-disciplinary teamwork and so forth, then there are situations where unbearable suffering will exist. But the answer to that, surely, is to make sure the consistency and quality of practice across the nation, in specialist practice and in general practice and hospitals, is brought up to speed so that we are bringing up the quality of the specialist practice rather than dumming it down.

  Q357  Lord Carlile of Berriew: Can I ask one other question which arose from something that Mr Gallagher said. I think it is a very important point and it is one that, frankly, I should have seen reading the Bill and that I had overlooked until now, and that is that the definition of "unbearable suffering", I think Mr Gallagher is saying, could include, for example, being unable to suffer any more the attitude of relatives who would rather see you dead than alive, that sort of mental suffering, which can become unbearable, particularly for elderly people who feel that they are dissipating the wealth of their family as they remain alive.

  Mr Gallagher: Certainly that has been my experience, that some people either feel pressurised, and that comes from a genuine source, or their perception is that they are a burden to their families, even though their families would say otherwise. So the feeling can come from a number of genuine sources or perceptions on behalf of parties.

  Q358  Lord Carlile of Berriew: That is founded on the words "or otherwise"?

  Mr Gallagher: Yes. My point is that it should be more specific.

  Q359  Lord Taverne: On that question of pressures from relatives, we have had some evidence that in fact the pressure from relatives is not to speed up death but, when the patient wants to die, that the pressure is to dissuade them from such a decision. I do not know whether that evidence is correct or not, but would you not agree that this is something where one can look at the experience of other countries and find out? Do you not think that evidence from abroad is relevant to this issue?

  Mr Gallagher: I am not familiar with the evidence from abroad. I am basing some of my submissions on my experience of working in palliative care, and that is that some people who are dying do feel that pressure from family members to die perhaps before they would do otherwise, or would want to do.

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