House of Lords - Assisted Dying for the Terminally Ill Bill

Select Committee on Assisted Dying for the Terminally Ill Bill First Report

CHAPTER 4: Practical issues

74. In this chapter we examine a number of key issues concerned with the reality, as distinct from the principles, of the subject with which the ADTI Bill is concerned. We have focused on a number of practical issues which have been raised with us in the course of our inquiry and which are concerned to a large extent with the potential of a change in the law for causing harm to others, both patients who might be at risk and those who would be called upon to assist in the ending of lives. We set out the issues here in the form of questions, and then we examine each of them in turn.

75. The issues which we shall address may be summarised in the following questions:

Covert Euthanasia What evidence is there that it is already taking place? And would the interests of terminally-ill people be better protected if the situation were to be recognised and regulated by legislating for assisted dying and euthanasia with the safeguards proposed in the Bill

Palliative Care Given recent and prospective advances in this area, can good quality palliative care remove most kinds of terminal suffering? And to what extent do these advances undermine the need for legislation along the lines proposed in the Bill?

Slippery Slope Would enactment of the Bill involve a "slippery slope", whereby the safeguards which the Bill contains would be eroded either by subsequent amendments to the law or by abuse of the provisions in the Bill or by undesirable changes in medical ethics?

Doctor-Patient Relationships Would these be damaged or improved by the Bill?

Conscientious Objection Is the position of doctors and other health care staff with conscientious objections to assisted suicide or voluntary euthanasia adequately protected in the Bill? And would the numbers of such staff opting out of implementing the Bill on grounds of conscience be likely to make it unworkable?

Prognosis How accurately is a doctor able to predict that a terminally-ill patient will die (in the words of the Bill) "within a few months at most"? And how would this timeframe in the Bill affect people with degenerative diseases, whose prognosis is more problematic than that of others with malignant conditions?

Competence Can an attending or consulting physician be expected to be able to identify in patients requesting assisted suicide or voluntary euthanasia the presence of psychological disorders which could impair their competence to make such requests?

Unbearable Suffering Can doctors reasonably be expected to be able to assess whether a patient's suffering is unbearable?

Demand How widespread is the serious demand for assisted suicide or euthanasia? And to what extent is this influenced by the scope of legislation in this area?

Vulnerable Groups What evidence is there to suggest that the Bill could expose particular groups of people, such as the disabled or the elderly, to the danger of assisted suicide or euthanasia?

Covert Euthanasia

76. The allegation that covert euthanasia is being practised in the United Kingdom was made by the Voluntary Euthanasia Society (VES) in its written evidence to us[26]. In oral evidence Deborah Annetts, the Society's Chief Executive, told us that "we have evidence that doctors and relatives are breaking the law... The law is clearly not working" (Q 1).

77. We have looked at the evidence to which our attention was directed. In most cases it consists of the results of surveys carried out on the subject of assisted suicide and euthanasia, including questions on whether the respondents had ever broken the law or knew anyone else who had done so. More specifically:

Ward, BJ and Tate, PA "Attitudes among NHS Doctors to Requests for Euthanasia" BMJ May 1994

In a survey of GPs and hospital consultants, of 312 respondents (who had been assured of their anonymity) 38 (12%) claimed to have complied with a patient's request to hasten death.

Sunday Times 15 November 1998

A study of 300 GPs was said to have revealed that one in seven had admitted to helping patients to die at their request and that "hundreds, probably thousands, of patients die each year with the help of doctors at home, in hospices and in hospital".

The article also gives the names of two doctors who, between them, claim to have assisted up to 12 people to die at their request.

McLean, S "Survey of Medical Practitioners' Attitudes towards Physician Assisted Suicide (June 1996)

This was a postal survey with 1,000 respondents. 12% of respondents "personally knew another health professional who had assisted a patient to kill themselves" and 4% had "provided the means (such as drugs or information about lethal acts) to assist a patient to kill themselves".

Medix Survey 8 August 2004, Sponsored by the Voluntary Euthanasia Society

Of 1,000 respondents, 513 (51%) answered "Yes" to the question: "Do you believe there are circumstances where some health professionals in the United Kingdom currently give pain relief to terminally ill patients with the intention of shortening their life?" 454 respondents (45%) answered "Yes" to the question: "Do you believe there are circumstances where some health professionals in the United Kingdom currently assist in the suicide or voluntary euthanasia of their terminally ill patients?"

78. Ms Hanne Stinson, of the British Humanist Association, also felt that covert euthanasia was taking place, though she was more cautious in her assessment of its incidence. "Because it is unlawful," she told us, "we have no idea how often it is done" (Q 1810).

79. By contrast, Dr Michael Wilks, of the British Medical Association (BMA), said that "we have no evidence whatever" (Q 287) of covert euthanasia. Professor Sir Graeme Catto, of the General Medical Council (GMC), took a similar view. Asked for his views on the allegations which had been made, he replied that, "we have no evidence that this is the case, and we have had a discussion this morning about the anecdotal nature of some of these reports. No doubt there is some truth behind them, but we have no objective evidence of which I am aware that this exists" (Q 325). Professor Catto also told us, when asked whether doctors were being disciplined as the result of complaints in this field from fellow professionals, relatives or other members of the public, that "we have no evidence to that effect. The number of cases coming forward in that area, I think, has remained very small. We have no evidence to support that suggestion" (Q 296). Dr Wilks suggested that there was confusion on the part of some of those who alleged covert euthanasia between, on the one hand, the legal and (from the point of view of medical ethics) acceptable acts of withdrawing or withholding ineffective treatment and giving pain relief and, on the other, the administering of euthanasia. Not ruling out the possibility that there were occasional cases of malpractice, he added that, "the number of times that doctors do things intending the death of the patient is actually, I think, very small; and I would think, given the highly-controlled regulatory structure around hospitals—and particularly as we remember that in this country most people do die in hospitals—highly unlikely" (Q 287). We comment further on this subject in Chapter Seven.

Palliative Care

80. This is a substantial subject. Here we can do no more than summarise the issues, which for convenience we sub-divide into three main questions:

What exactly is palliative care?

How good is it, and how readily available to the terminally-ill, in the United Kingdom?

What can it do to reduce or eliminate "unbearable suffering"?

DEFINITION

81. It is necessary to be clear about the nature of palliative care. It is often associated with palliative medicine, which is just one aspect of palliative care, and with pain relief in particular—whereas in practice palliative care extends more widely than either pain relief or the administration of medicine. It may be helpful therefore to begin with the World Health Organisation's definition of palliative care, which was supplied to us by the Association for Palliative Medicine of Great Britain and Ireland (APM)[27]:

"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".

82. Dr Vivienne Nathanson of the BMA told us that, "palliative care does a great deal more than pain control or symptom control: it also gives a great deal of psychological support, helping people to come to terms with what has quite clearly been a devastating diagnosis or with devastating news at the end of a process of treatment" (Q 306). Dr Nathanson also said that "many patients who raise questions about the end of life and euthanasia or suicide, sometimes in very heavily coded ways and sometimes more explicitly, are very often asking quite simply: 'What services will be available to me if I develop symptoms that I cannot accept, that are intolerable to me?' It is not always pain. It is very important to realise that symptoms that people are most worried about are very varied. They want reassurance. I remember well one patient saying to me very explicitly: "What I want to know is that I will not be abandoned: there will not be a stage at which people say 'There is nothing more we can do for you'… That is a very important reassurance to give, to say that we do not abandon people, that we will always look for what else we can do; and sometimes those solutions are high technology, but very often they are low technology and are about reassurance" (Q 323).

83. We were told that the essence of palliative care was team-working. "The practice of palliative care," said Dr Teresa Tate of the National Council for Hospice and Specialist Palliative Care Services (NCHSPCS), "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" (Q 354). By contrast, we were told, "referrals in the last two to four weeks of life are a nightmare to manage because everything is moving simultaneously and often things are out of control for them, so the ability to help them make sense and get things in order becomes that much more pressurised and difficult for them" (Q 411). Part of the task is to identify and treat depression (Q 409), to address the range of concerns which patients have about the end of life (Q 323) and to "explore and engage with the patient's suffering" (Q 354). Good palliative care includes also assessing, and constantly re-assessing during the course of a terminal illness, the most appropriate pain-relieving drugs and dosages to prescribe for each patient. In cases where death is imminent, this can involve terminal or palliative sedation, which means using "proportionate doses of a sedative for symptom control and… the alleviation of distress"[28].

QUALITY AND AVAILABILITY

84. There was consensus among our witnesses as regards the quality and availability of specialist palliative care in this country. The essential message which our witnesses gave to us is that palliative care in the United Kingdom is of a very high quality but inadequately resourced and unevenly spread. Britain was described to us as "a world leader" (Q 354) in this field, and we were told that the development of palliative care as a speciality was "a great British success story, because much of the palliative care movement has been British-led" (Q 306)[29]. "When I first started in practice," Professor Johnson told us, "the whole idea of palliative care in hospices was just starting, and I can think of some examples where we were very bad at managing symptoms at that time. The improvement and the effect on general care in hospitals has been dramatic: it is not just in hospices and palliative care institutes, it is in general care and pain relief" (Q 182).

85. On the other hand, the availability of good palliative care seems less encouraging. There are, we were told, 237 palliative care consultants in England (the whole-time equivalent of 169), with 100 posts unfilled; and 3195 palliative care beds in the United Kingdom, of which 2522 are in the voluntary sector.[30] The Royal College of Nursing (RCN) wrote that "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—are not able to access appropriate services"[31]. The Royal College of Physicians observed that "clinicians working with dying patients are acutely aware of the shortfall of such services in the United Kingdom at present, especially for patients dying from non-cancer deaths outside of hospital" (Q 223). Dr Carole Dacombe, Medical Director of St Peter's Hospice Bristol and a palliative care practitioner, referred to a "deficit of care" in this field. "It is," she felt, "an indictment of our society that the vast majority of specialist palliative care services in this country are still delivered by and funded by the charitable sector" (Q 1913). Dr Nathanson added that, "by the nature of palliative care, it is not something that people should be waiting for: it needs to have sufficient resources to be available promptly to people in need at the time that they are in need but the sad fact is that we have not had a sufficient investment to guarantee that every patient who could benefit from this gets that treatment" (Q 306). We were also told of evidence that the patchy provision of palliative care might work to the disadvantage of certain ethnic minorities (Q 28). There is, it was suggested, something of a "postcode lottery" here.

86. Professor Kathleen Foley, a neurologist at the Memorial Sloane-Kettering Cancer Center in New York, told us that "the WHO, in developing its initiatives in palliative care, has asked governments not to consider such legislation for physician-assisted suicide and euthanasia until the needs of their citizens had been met with pain and palliative care services. Clearly Britain is a leader in advocacy for hospice and palliative care, yet the full penetration of services in your own country is not available, as in mine, and especially is not available for those of our ageing population with non-cancer diagnoses" (Q 2116).

87. Professor Mike Richards, National Cancer Director at the Department of Health (DoH), acknowledged to us the limitations of current provision. "Geographical provision," he said, "is uneven and does not always match need. Much of specialist palliative care at the moment deals with cancer patients, and I think there is an inequity there in terms of patients, for example, with heart failure or emphysema, who often have similar levels of symptoms but do not necessarily go to specialist palliative care services" (Q 423). The DoH programme, Professor Richards continued, "had three main strands—"firstly, enhancing specialist palliative care services; secondly, enhancing old age specialist services; and, thirdly, skilling-up what we refer to as generalists, that is a whole range of different people: GPs, district nurses, hospital staff who are involved in end-of-life care, and indeed staff in care homes as well" (Q 423). Nonetheless, there was a long way to go. The number of GP practices which had undergone postgraduate training to the Gold Standard set by the DoH was as yet only some 1,600 out of a total of between 10,000 and 11,000 (Q 429), while over the last three years palliative care training had reached only some 10,000 out of around 40,000 district nurses (Q 434). Up-skilling of the 600,000 care assistants in residential homes presented even greater challenges (Q 435). Professor Richards confirmed the national shortage of palliative care specialists. "There are very roughly 250 of them in the country. If you compare that to the number of people dying, which is over 500,000, you can see that for every specialist in palliative medicine there are over 2,000 people dying" (Q 436). However, a start had been made: the DoH had committed an additional—and ring-fenced—£50M and "extra consultants, extra nurse specialists and extra hospice beds have been provided, so it is not just money; it is services that are happening out of this" (Q 442).

EFFECTIVENESS

88. There was a general consensus among our witnesses as regards the limitations of palliative care in relieving patient suffering. The VES took the view that "no amount of palliative care can address some patients' concerns regarding their loss of autonomy, loss of control of bodily functions and loss of dignity. An ability to meet these needs arises not because of a failure of palliative care but because these are person-centred issues. These issues most frequently lie at the heart of a request for help to die"[32]. Dr David Cole, a consultant oncologist at the Oxford Radcliffe Trust, took the same view. "There is a group of patients," he told us, "who continue to have intractable distress despite the input from expert palliative medicine, expert general practioners, etc. That small group of patients who continue to suffer intractable distress may express a wish to choose the time at which they want to die" (Q 1907). The BMA echoed this view, observing that "there are patients for whom even the best palliative care is not dealing with their pain", adding that "in spite of excellent palliative care, the position is not necessarily one which those patients regard as beneficial to them… the loss of autonomy" (Q 304).

89. While it seems clear from the evidence which we have received that good palliative care, tailored expertly to the individual needs of the patient, can largely relieve the symptoms of physical pain, it is necessary to consider also what it can do for patients suffering from degenerative diseases whose suffering is less of pain as of losing control of their bodily functions, including such basic activities as swallowing. We therefore sought advice from Dr Richard Hillier, a palliative care consultant and one of our specialist advisers, on the incidence, symptoms and treatment of motor neurone disease (MND). His advice, based on research carried out by him, is reproduced as Appendix 5. Briefly, MND afflicts up to 2 people per 100,000 in the United Kingdom and there are around 1,000 deaths from it (out of some 500,000 for the United Kingdom as a whole) every year. Most of the symptoms can be relieved or reduced, the more so if patients are treated in a specialist MND Centre with access to experienced physicians, nurses, physiotherapists and palliative care experts. Unfortunately, such centres are few in number, though increasing, and as a result patients who are not involved can suffer considerably. MND sufferers are often fearful following diagnosis, particularly as the result of stories in the media that they will choke to death. Dr Hillier's research concludes that such an outcome is a rarity and that most MND sufferers die of respiratory failure in their sleep. The picture here therefore appears to mirror that for the effectiveness of palliative care overall—that in qualitative terms it can mitigate to a large extent the medical suffering associated with terminal illness but that it is, at least at present, spread too thinly within the United Kingdom.

90. We have noted the advances in specialist palliative care which have been made in recent years in this country and the high quality of such care nationally. We have noted also that such services are not uniformly available throughout the country, though we are pleased to see that the Government is devoting increased resources to this area of health care. We are unanimously of the view that high priority should be given to the development and availability of palliative care services across the country and we hope that the efforts which are being made in this direction will be intensified.

The Slippery Slope

91. Opponents of Lord Joffe's Bill frequently draw attention to the so-called slippery slope, by which they mean that it will be difficult, if not impossible, to prevent the extension of assisted suicide or voluntary euthanasia if once the principle is conceded. The concerns which have been raised with us under this heading may be sub-divided into five categories:

incremental extensions to the law;

elastic interpretation of the law's provisions;

hidden pressures;

abuse of the law;

the paradigm shift.

We address these five concerns in turn.

INCREMENTAL EXTENSIONS

92. Lord Joffe foresaw the possibility of subsequent amendments to his Bill, should it become law, to widen its scope. "We are starting off," he said, "this is a first stage… I believe that this Bill initially should be limited, although I would prefer it to be of much wider application, but it is a new field and I think we should be cautious" (Q 89). Expanding on this, Lord Joffe told us that, "when we considered the opposition to the previous bill, we felt that there was such strength of feeling in the debate about extending it to younger people who had a long lifetime ahead of them that we thought it wise… to limit it to terminally ill patients who were already suffering terribly and had a very short time to live. But I can assure you that I would prefer that the law did apply to patients who were younger and who were not terminally ill but who were suffering unbearably, and if there is a move to insert that into the Bill I would certainly support it" (Q 124).

93. Dr Fiona Randall argued that, "if we are saying that the entitlement to assisted suicide and euthanasia (and that is what this Bill is about—it is about giving these people an entitlement if they meet certain criteria) is thought to be of benefit for those who are terminally ill, it must be extended to others who feel they are suffering unbearably but are not in the last few months of their life". Otherwise, she suggested, the law would be regarded as inequitable (Q 1973). Professor Henk Jochemsen, a medical ethicist from whom we took evidence in The Netherlands, drew attention to ongoing debate in that country about extending the existing law on euthanasia to cover new categories of persons, including new-born babies and others without medical conditions who are "tired of life" (Q 1510). We can do no more here than note that the Bill, if enacted, is seen by some of its supporters as (in Lord Joffe's own words): "a first stage and possibly the final stage, but there could be subsequent stages" (Q 122) and by its opponents as the first step onto a slippery slope.

ELASTIC INTERPRETATION

94. Many of the people who have written to us have drawn parallels between the Bill and the Abortion Act of 1967. They have pointed to the similarity between the arguments advanced to support the latter (that illegal abortion was already happening and that it would be better to regulate it via legislation) and those used to advance the present Bill, and to the disparity between the intention of the Act's sponsors—that abortion would be an exceptional procedure—with the reality, in which at the last count there were over 180,000 abortions carried out annually in England and Wales. Their concern is that the legalisation of euthanasia, even with the strictest of safeguards, might have similar results. In his evidence to us, Lord Walton cited experience of the Abortion Law. "I do not believe," he said, "that the Abortion Act has been significantly amended in relation to its provisions but those provisions have been widely ignored, leading virtually to abortion on demand" (Q 2070).

95. There are, of course, dissimilarities between the Bill and the Abortion Act. The latter, for example, allows abortion in cases where there is considered to be risk to the physical or mental health of the mother or her other children as well as to her own life. There is also a difference from the ADTI Bill in the nature of what is on offer. Whereas it was, perhaps, to be expected that there would be growing pressures to apply the Abortion Act with growing elasticity in an age of increasing secularity, most people have a natural desire to remain alive and in consequence there is unlikely to be the same degree of pressure to exploit loopholes in a law permitting assisted suicide and voluntary euthanasia. Nonetheless, there is a concern that what has been seen as elasticity in interpreting some of the Act's provisions (for example, concerning the mental health of the mother) might be replicated in implementing some of the Bill's provisions, including those of "unbearable suffering", "terminal illness" and "competence". This concern, Lord Walton told us, is one of the reasons why the 1993/4 Select Committee on Medical Ethics rejected any change in the law. "We did not think it was possible," he said, "to set secure limits on voluntary euthanasia… It would be next to impossible to ensure that all acts of euthanasia were truly voluntary and that any liberalisation of the law was not abused. We were concerned over the possible erosion of any such legislation, whether by design or inadvertence or by the human tendency to test the limits of any regulation" (Q 2043). As regards the present Bill, Lord Walton thought that "it would in the first instance set down very strict criteria, but I think those criteria might well be progressively eroded with the passage of time, leading to widespread practice of voluntary euthanasia" (Q 2043). Later in response to a question Lord Walton said: "I have read it [the Bill] carefully several times and, if it were to become law, I cannot readily see any additional safeguards which I would wish to see introduced" (Q 2065).

96. The Bill's supporters argue that there is no evidence of legislative drift in countries where legalised assisted suicide or voluntary euthanasia have been introduced. They point out that in Holland, for example, there has been no dramatic rise in the number of recorded cases of euthanasia since Dutch practice in this field was codified into law in 2002; and that the numbers of people receiving assistance with suicide in Oregon under the terms of the 1997 Death with Dignity Act has remained relatively stable and low—some 0.14% of all deaths in Oregon in 2003. More detailed evidence of the practice of assisted suicide and euthanasia in these places is provided in Chapter Five.

HIDDEN PRESSURES

97. The essential concern under this heading is that some terminally ill people might feel under pressure, if the option of assisted suicide or voluntary euthanasia were to be available in law, to avail themselves of it in the interests of others (in particular, family members) rather than because they themselves positively wished to die in this way. Maura Buchanan of the RCN suggested that some terminally ill patients "might feel that they had to use the Bill when the cost of nursing home care started to eat away the family's inheritance. It would be easy to succumb to pressure and feel that you had to give up or feel that you were a burden, when the family in today's world do not sit at home looking after mother or elderly relatives, because everybody has to work now to keep the mortgage going" (Q 263). Baroness Greengross took the view that "the whole question of being a burden to society as a whole is something that is widespread amongst older people, especially in Northern Europe and North America. It is part of our culture, where a lot of old people say they do not want to be a burden on their families, however loving, and we must accept that is part of our culture" (Q 1956). Dr Jim Gilbert, a medical director of palliative care in Devon, raised a related concern—that some patients, while not opting for ending their lives, would feel themselves to be presented, if the law were to be changed, with an ongoing choice to be made (Q 1973).

98. The VES on the other hand argued[33] that, where such "burden" feelings are present in people who wish to die, this is related to their frustration at being dependent on others during the dying process and is therefore linked to losing autonomy. The VES also suggested, drawing on research into assisted suicide in Oregon, that "sometimes a patient will hold off going through the final act of having help to die for a few days as a result of their relatives putting pressure on them not to do so" (Q 11). And Baroness Greengross added to her view of the cultural problem (referred to above) that "the burden question is a societal problem… that is about a re-allocation of resources, training care staff better and changing our culture, and not about this Bill" (Q 1956). It was also suggested that people who have a positive wish for assisted suicide or voluntary euthanasia and are denied its fulfilment are the victims of the law as it stands as much as others who might be pressured into such action if the law were to be changed. "Concern for the vulnerable," said Professor Harris, "does not… tell us that we should forbid medically-assisted dying; it tells us that we should permit it, with the safeguards such as those in Lord Joffe's Bill" (Q 1).

99. Nonetheless, this is the concern which has been raised with us most frequently in the context of the slippery slope both by witnesses giving oral evidence and in very large numbers of letters and emails from members of the public. As we will see later in this chapter, it is a concern which is felt particularly strongly in relation to potentially vulnerable groups of people, such as the disabled and the elderly.

ABUSE OF THE LAW

100. The concern here is that the provisions of the Bill, if enacted, might be applied to persons for whom it was not intended, not because of elasticity in the interpretation of what the Bill allows, but rather through deliberate flouting of the law. While this may seem a less likely outcome, the concern which is felt under this score appears to be that, if (as has been alleged) covert euthanasia is taking place when there is an absolute legal prohibition of it, the opening of the door via limited legal provision will encourage the de facto barriers to be pushed further out—rather than (as others argue) the reverse. Those who have this concern usually quote empirical data from The Netherlands which indicate that around 1,000 cases of euthanasia occur annually in that country without an explicit request[34]. This phenomenon existed before legalisation of voluntary euthanasia in The Netherlands and first came to light in the early 1990s, and the numbers have remained more or less constant. We deal with this issue more fully in our chapter on overseas experience (Chapter Five).

101. Commenting on this, Deborah Annetts of the VES said: "Yes, this is a concern and the Dutch absolutely recognize it and they have been working very hard to try and put in better provisions—if you like, better medical practices—in order to deal with that issue. What is noticeable, though, looking at the 900 deaths which occurred without explicit request, is that most of those patients will have made a request to the doctor; they may not have gone through the formal process but they will have gone through an informal discussion. The latest figures from The Netherlands show that in virtually all those cases there will have been a discussion, if not with the patient themselves but also with the relative or a colleague" (Q 13). The VES added that no increase in this type of case had been reported over the last 10 years and that in most cases the amount of time by which, according to the physician, life had been shortened was a few hours or days[35].

THE PARADIGM SHIFT

102. Though this is a term coined by one of our witnesses, it refers to an issue highlighted also by others. The essence of the concern here is that, if assisted suicide and voluntary euthanasia should be legalised and if implementation of the law were to be carried out within the health care system, these procedures will of necessity become a therapeutic option; that over time there will be drift from regarding the death of a patient as an unavoidable necessity to regarding it as a morally acceptable form of therapy; and that pressure will grow as a result for euthanasia to be applied more widely—for example, to incompetent people or to minors—as a morally acceptable form of medical therapy which is considered to be in the patient's best interests. Professor Tallis told us—adding however that it was his personal view rather than that of the Royal College of Physicians—that "to me it does seem to be a therapeutic option, as are many other forms of treatment that may hasten people's deaths… For that reason I do feel it should be regarded as part of the therapeutic alliance between the patient and the doctor. I do see, without trivializing the phrase, that it is part of a whole package of care" (Q 257). The Association for Palliative Medicine said that "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".[36]

103. Concern has been expressed over the effect of such a paradigm shift on medical practitioners as well as on patients. "If," Dr George observed, "under some circumstances assisted suicide or euthanasia is now considered to be an entitlement of the patient—bringing it into statute makes it an entitlement—then that becomes a therapeutic option and, therefore, it becomes a potential duty for us to perform" (Q 420). There is, of course, provision within the Bill for those with conscientious objections to remove themselves from its implementation, and an amendment by Lord Joffe provides that there would be no duty on any doctor to raise the issue with a patient. But the perceived problem here is more about the impact of a law along the lines of the Bill on medical ethics as a whole rather than on individual practitioners.

Doctor-Patient Relationships

104. The concern which has been expressed on this score needs to be looked at from two standpoints—that of the patient and that of the doctor. On the one side, it has been suggested that the legalisation of medical assistance for suicide and voluntary euthanasia could introduce a sense of distrust of doctors on the part of patients. On the other side, it is clear that many doctors are concerned that the introduction of assisted suicide and voluntary euthanasia as medical procedures could not only undermine their patients' trust in them but also run counter to the ethics of their profession.

105. Opinion polls do not suggest any significant anxiety on this score from the point of view of patients—see Chapter Six. In its written evidence the VES pointed to the benefits of open discussion with their doctors of all patients' concerns and wishes relating to the dying process, including the options of assisted suicide or voluntary euthanasia, and to a survey which had reached the conclusion that, out of eleven European countries (including the United Kingdom), the Dutch have the highest regard for and trust in their doctors[37]. Others pointed to an existing openness of discussion of end-of-life issues here in the United Kingdom. Dr Gilbert told us that, "these sorts of issues about wishing for an earlier death are not terribly uncommon in palliative care practice. Certainly my own experience and that of my colleagues in the south west that I know well would be that such matters do have an opportunity to be discussed openly in trying to concentrate on what are the distressing issues for that patient and those close to them at the time" (Q 2039). Ms Penny Lewis, of King's College London, observed that doctor-patient relationships in The Netherlands were different from those which obtained in the United Kingdom in that most acts of voluntary euthanasia in Holland are carried out by GPs, who tend to know their patients over a long period of time (Q 28). In this country, observed Dr David Jeffrey of the Association for Palliative Medicine, "if you try and register with a general practitioner, you register with a practice; it is a team approach to care. If you call at night, you will get a different doctor, you will not get your own doctor coming to see you… This is becoming less and less likely given the pressures of general practice nowadays" (Q 409).

106. All the medical practitioners who spoke to us agreed that there had been a significant change in doctor-patient relationships over the last 30 years or so in favour of greater openness and patient autonomy. As Lord Walton put it, "The days of 'doctor's orders' are long passed and the practice of medicine is a partnership between the doctor and the patient, in which it is the doctor's responsibility and duty to indicate to the patient what he or she regards as being the best course of action to follow in the management of their condition, but it is up to the patient to decide whether or not to accept that advice" (Q 2045).

107. Lord Joffe recognised the difficulties which legislation in this field caused for the medical profession but cited experience in The Netherlands and Oregon. "We have learned," he said, "that in The Netherlands doctors really worry about assisting patients to die—it is not something they move into enthusiastically and it causes considerable concern. But on the surveys which have been taken in The Netherlands, and certainly in Oregon, the sense is that doctors often feel that actually that is part of their treatment of a patient whom they have known for a considerable time… and they feel that they have done the right thing by their patient. Some doctors might feel that actually they want to be involved: it is part of the treatment for the patient of whom they are very fond and want to assist" (Q 130).

108. What of the effects on the doctor-patient relationship from the standpoint of the doctor? The Royal Colleges of Physicians and of General Practitioners adopted a neutral stance on the principles underlying the Bill. The General Medical Council said in written evidence to us that "we require doctors to obey the law… and our guidance will always be consistent with the law. Consequently we have not developed a policy or issued guidance on euthanasia… We believe that it is for society as a whole to determine, through its democratic processes, how best to respond to the conflicting wishes of its citizens"[38]. And Professor Sir Graeme Catto, the GMC's President, said that, while the Bill would present challenges, "there is nothing inherently present in the Bill that causes problems for the General Medical Council as it exists" (Q 338). Both Royal Colleges however drew our attention to a number of concerns about the Bill itself, and the GMC said in written evidence to us that "a change in the law to allow physician-assisted dying would have profound implications for the role and responsibilities of doctors and their relationships with patients. Acting with the primary intention to hasten a patient's death would be difficult to reconcile with the medical ethical principles of beneficence and non-maleficence"[39].

109. While some of the individual doctors who gave evidence to us spoke of what they felt to be a duty to accompany their patients to the end of their final journey (i.e. they saw assisted suicide and voluntary euthanasia as part of a therapeutic package), others had reservations. Professor Leigh referred to a "sense of great discomfort" among neurologists at taking on this role (Q 1134). Dr Randall drew attention to the ethical need for doctors always to act in the best interests of their patients, irrespective at times of their patients' wishes. She argued that "patients cannot require a doctor to perform a treatment that the doctor really feels is going to result in overwhelming harm and not benefit. So the parallel is with, say, a patient requesting a surgeon to do an operation where the surgeon says the risks of it far outweigh any possible benefits" (Q 2028). Others felt that acceding to a request for euthanasia implied a value judgement on the part of the doctor of the patient's remaining life: Dr Gilbert described it as a "psychological push from the bridge, and that moral judgement, which is often expected of doctors, to agree with them that the best thing overall would be for them to end their lives" (Q 2024).

110. Dr Ivan Cox, for the Royal College of General Practitioners, commented that "several of my colleagues feel that there would be a significant erosion of trust in the doctor/patient relationship," though he added that, "others feel that this is a dynamic and may not change as much as people expect" (Q 224). Dr Wilks believed that there were "many doctors who feel very strongly that you cannot draw a line with autonomy just because it causes you difficulties. You are either autonomous or you are not, and autonomy extends to the point of also being able to decide the time and method of your death" (Q 337). The BMA's view however was that "legalising assisted suicide would affect some patients' ability to trust doctors and to trust medical advice"[40]. And Dr Wilks also spoke of the importance, in the wake of recent adverse publicity for the medical profession, of maintaining the public's trust in its doctors. "I have a concern," he said, "that re-defining the role of the doctor in the way that this Bill would do might pose some threat to that trust" (Q 334). The majority of the letters we have received from doctors express serious reservations about the impact of the Bill on both their relationship with their patients and the ethics of their profession. It is important also to consider nurse/patient relationships, which the RCN felt could be jeopardised by the Bill (Written Evidence, Paragraph 4.2).

111. In this context some witnesses and members of our committee wondered whether, should a law along the lines of Lord Joffe's Bill be enacted, its implementation should be placed outside the ambit of the health care system. Dr Gill Turner, representing the British Geriatrics Society, questioned why assisted suicide or voluntary euthanasia needed to have medical involvement at all. "People can be given the wherewithal," she suggested, "to end someone's life, but I am not entirely sure why doctors need to be involved, because effectively it is a social decision, not a medical decision" (Q 1196). Dr Turner added that, "if we are trying to de-medicalise some of these decisions… because of the fact that we are talking about people's own autonomous decision-making, then why does a doctor need to be involved?" (Q 1223). Dr Randall felt it would be better, "if society wants assisted suicide and euthanasia, to take doctors out of it apart from establishing the diagnosis, the prognosis and the treatment options for the prolongation of life and the relief of suffering… That way you do not have collateral effects on your doctor-patient relationship. You would not have this problem of elderly vulnerable people worrying about what would happen to them when they were in care" (Q 2018).

112. On the other hand, Dr Nathanson commented: "What doctors find it impossible to consider is who would want to provide that service. They find it almost impossible to conceive of a person who would want to spend their life administering lethal injections. Whether such a service could ever be set up, and who would be the people who took part in it, raises very serious questions" (Q 324). Dr Wilks cautioned that, "the establishment of a separate service is a kind of signal that there is a different group of patients who do not deserve the same kind of overall assessment and communication and discussion about options, and that they can go off to the euthanasia service instead" (Q 325). Lord Walton described this as "a dangerous possibility" which he would not support (Q 2070). We comment further on this issue in Chapter Seven.

Conscientious Objection

113. The Bill provides exemption for persons with conscientious objections to taking any of the actions which it authorises, and we address the detail of this "conscience clause" in Chapter Seven. It has been suggested to us, however, that the Bill, if it were to become law, might well be unworkable because of the conscientious objections of many of those who would be called upon to put it into practice.

114. Dr Ivan Cox, for the Royal College of General Practitioners, warned of GPs opting out (Q 224). The Royal College of Nursing said that "the proposals in the Bill will be unacceptable to many nurses on moral, ethical or religious grounds"[41]. Speaking for the RCN, Maura Buchanan drew attention to the high proportion of nurses from overseas within the NHS, many of them with religious objections to what the Bill proposes: she predicted a haemorrhage of trained nurses if the Bill were to become law. We did not, it has to be said, receive indications from the authorities in other countries where legislation of this nature has been enacted that significant problems had been encountered in regard to conscientious objection by large numbers of doctors and nurses, though it is perhaps necessary to bear in mind that the composition of the medical and nursing professions in this country is rather different from that in, for example, Holland, where over 90% of doctors are of Dutch origin[42].

115. Asked whether the operation of the 1967 Abortion Act did not provide a precedent, our witnesses drew attention to certain differences. Professor John Saunders, for the Royal College of Physicians, believed that abortion and euthanasia were perceived differently by doctors. "The one thing we can all agree on is that, if I give barbiturates or curare to a competent adult, I am killing that person… I do not think anyone can contest that that is killing someone" (Q 246), whereas there was some room for doubt, he suggested, over terminating the life of a foetus. Ms Buchanan drew attention also to a practical consideration affecting the nursing profession. "You can choose not to work in a gynaecological unit, but people die everywhere in health care. So how will you take the nurses and look after them in a nursing home where the local GP comes in to practise euthanasia?" (Q 263)

116. We were also given the results of a survey carried out by the Association of Palliative Medicine (APM). We were told that in the APM survey of its members, which attracted an 84% response rate, 72% percent of respondents had said that they would not be prepared to participate in a process of patient assessment which formed part of an application for assisted suicide or voluntary euthanasia.

Prognosis

117. Terminal Illness is defined in the Bill as "an illness which in the opinion of the consulting physician is inevitably progressive, the effects of which cannot be reversed by treatment… and which will be likely to result in the patient's death within a few months at most"[43]. Of critical importance therefore is the accuracy with which doctors are able to predict the remaining lifespan of seriously ill patients.

118. The evidence which we have taken from medical practitioners suggests that the prognosis of a terminal illness is far from being an exact science. "It is possible," we were told by the Royal College of General Practitioners, "to make reasonably accurate prognoses of death within minutes, hours or a few days. When this stretches to months, then the scope for error can extend into years"[44]. Professor Tallis, for the Royal College of Physicians, told us that "medicine is a probabilistic art… In most cases the vast majority of prognoses are right, but there will always be situations where the diagnosis is wrong" (Q 244). Professor John Saunders, also speaking for the Royal College of Physicians, said that "prognosticating may be better when somebody is within the last two or three weeks of their life. I have to say that, when they are six or eight months away from it, it is actually pretty desperately hopeless as an accurate factor" (Q 253). The Royal College of Pathologists drew attention to "a 30% error rate in the medically-certified cause of death", with "significant errors (i.e. misdiagnosis of a terminal illness resulting in inappropriate treatment) in about 5% of cases"[45]. Dr Cox said that, "a doctor deciding that a patient has reached a terminal state is very difficult. In some of the work that I personally have done with doctors on this we have recognised that doctors make arbitrary decisions about when a patient has reached a terminal stage. This can be when the patient is discharged from specialist care, when the patient moves from a curative state to a palliative state; some just use the position when what is known as the DS 1500 Form is actually prescribed, or some just use the point where patients have become bed-ridden or immobile" (Q 224).

119. We put these issues to specialists in palliative care and neurological diseases. In its written evidence the Association for Palliative Medicine had observed that "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"[46]. Asked to enlarge on this during oral evidence, Dr David Jeffery said, "A simple bit of practical evidence is one of the benefit forms that are filled in for patients assigned to the doctor thinking that the patient has six months to live. I would not like to count how many of those forms I have signed in my life for patients still living after a year, eighteen months or even longer… Even in cancer patients it can be very difficult to tell when a patient is dying… The reality in clinical practice is that we can be wrong. I would entirely agree… that this gets easier the closer one gets, but predicting six months is not something that I would like to guarantee to any patient" (Q 388).

120. It is, we were told, even more difficult to forecast the course of degenerative disease (such as motor neurone disease, multiple sclerosis, heart disease or emphysema) than of malignant conditions such as cancer. Professor Nigel Leigh, on behalf of the Association of British Neurologists, told us that "with someone who has severe multiple sclerosis you have a rough idea that they might survive another year or a couple of years but it all depends on other things: whether they get an infection or, for example, septicaemia. You cannot actually judge" (Q 1131). Professor Leigh continued: "We say 'a few months' but we cannot possibly judge that in many of the patients we see, and we will end up by perjuring ourselves—or being tempted to—by saying it is a few months when we know it might be anywhere between six months and eighteen months" (Q 1151). Professor Richards of the DoH made a similar point. "Identifying the fact that somebody is actively dying… is quite a difficult thing to do, particularly as given a lot of conditions like heart failure, for example, people can be slowly getting worse but then they have acute dips down, and it is very difficult to know whether they will recover from that particular incident or not… I think that is one of the very difficult things about prognosticating, particularly outside the field of cancer, and knowing how long somebody has got to live" (Q 437).

121. Dr David Cole drew our attention to a WHO Performance Scale used by oncologists in making prognoses of life expectancy. At one end of the scale (0), a patient would be in good health, while at the other end (5), he or she would be dead. In between, Dr Cole said, there were grades showing successive stages in health decline—for example, at Grade 4 a patient would be predominantly bed-bound or in a chair, unable to move or to go to the lavatory or to eat, drink or wash without assistance. Dr Cole said that he would "feel confident in predicting a very limited prognosis in a patient who was Performance Status 4" (Q 1910). His own experience as an oncologist, said Dr Cole, argued for limiting the provisions of any law of this nature to patients within one or two months of death (Q 1921), though a little later (Q 1925) he adjusted this to "less than three months". Dr Carole Dacombe pointed out also that patients with an 8-weeks-or-under prognosis received funding for their care from the health sector, whereas those with longer prognoses were funded by social services departments (Q 1964). Professor Tallis suggested that there might be a need to link prognosis with assessment of unbearable suffering. "If the situation is unbearable and the prognosis is that it is going to remain unbearable, then that surely is the absolutely key issue. Clearly that will only happen, usually, within two months of death, but it may be a little longer than that. So I think it is very important not just to confine the notion of prognosis to life expectancy but to expectancy of quality of life" (Q 1924).

122. A further perspective on the subject was offered to us by Professor Timothy Quill, a professor of medicine, psychiatry and medical humanities at the University of Rochester, New York. Professor Quill observed that "when we are trying to prognosticate in heart failure or chronic lung disease… the uncertainty comes because we are still continuing a good amount of disease-directed therapy. If we stop those therapies, people will die much sooner; but the challenge is that they die much more symptomatically if we stop those therapies. We tend to stop them only when they are literally dying" (Q 2122). Professor Quill also told us that, "when a person goes to an acute hospice unit, we are used to prognosticating that they are likely to die within the next two weeks" (Q 2118); and Professor Foley told us that the average time in hospice care in the United States is 14-16 days (Q 2121).

Competence

123. An applicant under the Bill must be competent, which is defined as "having the capacity to make an informed decision"[47]. It seems to us that such capacity encompasses two capabilities—the ability to think clearly and to come to a reasoned decision; and the ability to form a judgement which is unclouded by transient and treatable psychological conditions. The former is, we would say, the easier to assess—in that the attending or consulting physician ought to be able to spot the applicant who is non compos mentis or who is not in full control of his or her thought processes. But it is entirely possible for someone with this level of competence to have his or her judgement impaired by depression or despair and to reach decisions which, given time and adaptation to the circumstances of terminal illness, he or she might well reverse. It is these situations which we attempted to explore with expert witnesses.

124. Dr Geoffrey Lloyd, of the Department of Psychiatry at the Royal Free Hospital, told us that "the desire to die covers a spectrum of intent. There are people who express a desire to die in the sense that they would rather not wake up in the morning or they would rather not be here. That is a passive desire to die. At the other extreme there are people who have worked out very careful plans and know exactly what they are going to do to end their life, and these people are at extremely high risk. In between those poles there is a spectrum of intent, and far more people express a desire to die than actually make an attempt to kill themselves" (Q 453). According to Dr Lloyd, "all doctors are capable of making decisions about mental capacity when it is fairly straightforward. Those who have had a bit more experience—and general practitioners very frequently acquire training in psychiatry during their general practice training—are able to make these decisions if the case is a bit more complicated. And then, in more complicated cases, that is when psychiatrists, particularly liaison psychiatrists, have an expertise to bring to this area of practice" (Q 473). Mrs Christine Kalus, a clinical psychologist giving evidence on behalf of the British Psychological Society, referred to people "who have episodes of reactive depression as a result of the diagnosis of a life-limiting disease. Estimates vary, but within the population of cancer patients this is thought to be in the region of 25-40% at the time of diagnosis, and similar at other times in the cancer journey—e.g. on confirmation of metastatic disease" (Q 475). Continuing, Mrs Kalus said that "there is a significant incidence of moderate to severe depression and anxiety at various stages throughout the course of many diseases. Measurement of these difficulties is problematic, particularly at the end of life, because many of the symptoms of depression are confounded by the symptoms of disease" (Q 475). Professor Irene Higginson, Professor of Palliative Care and Policy at King's College London, drew attention to studies carried out in Canada, which suggested that among people with advanced illness the will to live and the desire for death fluctuate throughout the course of terminal illness for all except a very small number of patients (Q 28). On the other hand, the VES drew attention to research which suggested that depression did not play a role in requests by patients in Oregon for assisted suicide[48].

125. Another aspect of the problem of competence was exposed by witnesses from the Association of British Neurologists (ABN). Professor Christopher Kennard told us that "with a number of the neurological conditions there is a whole issue of cognitive impairment as well. For example, there are patients who to the lay public appear relatively normal but could have severe cognitive impairments and therefore would be unable to give informed decisions in an area such as this" (Q 1127). Continuing, Professor Kennard observed that, "on the face of it most of our patients with motor neurone disease are intellectually intact, very much on the ball and able to make decisions. However, we know from research in our own group as well as internationally that about 30 per cent of those patients actually have significant cognitive, neuropsychological impairment and we do not understand how that impinges on the decision process" (Q 1128).

126. There was a general consensus among our expert witnesses on one point—that the attending and consulting physicians who are envisaged as being effectively the "gatekeepers" in regard to applications for assisted dying could not be expected to spot impairment of judgement in all cases. Mrs Kalus felt that it was "fundamental that any assessment should be the responsibility of the multi-disciplinary team and not a single clinician" (Q 475). Professor Kennard suggested that all applicants for assisted suicide or voluntary euthanasia ought to be assessed by a clinical psychologist or a consultant psychiatrist in order to eliminate mild or moderate depression and to ensure that the level of competence is sufficient to enable an informed decision to be made (Q 1127). Echoing this thought, Dr Bateman, also for the ABN, considered that there would be a need for "assessment by the consultant in charge of the case, by a psychiatrist, by a neuropsychologist, by a palliative care physician and probably by the general practitioner to make absolutely certain that the consent was informed and was valid" (Q 1130).

Unbearable Suffering

127. "Unbearable Suffering" is defined in Clause 1 of the Bill as "suffering whether by reason of pain or otherwise which the patient finds so severe as to be unacceptable and results from the patient's terminal illness"[49]. It is sufficiently clear from Lord Joffe's own evidence to us that, while the patient must make his or her own subjective assessment of unbearable suffering, the attending and consulting physicians must also confirm that this assessment is reasonable (QQ 126, 142 and 144). Witnesses have however raised concerns not only about the definition of "unbearable suffering" but also about the rationale of its inclusion in the Bill.

128. In the view of the National Council for Hospices and Specialist Palliative Care Services (NCHSPCS), "whilst it may be possible for the attending physician, based on a longer relationship with the patient, to assess changes in his level of suffering, such an assessment cannot be made during the course of the single visit to a consulting physician that the Bill envisages, during which all the activities detailed in Clause 2(3) must be undertaken"[50]. Dr Tate, of the NCHSPCS, said that a proper assessment "may take a week or more of knowing the patient and the situation" (Q 364). Dr Wilks took the view that, "what… counts for the doctor is that there is a consistent expression by the patient in a competent, unbiased way, that this for them is an unbearable situation" (Q 349). The Royal College of Physicians suggested that it would be necessary to establish also that an expression by a patient of unbearable suffering did not derive from "unresolved psychosocial issues"[51] which should be identified and treated.

129. Dr Georg Bosshard, a Swiss physician, felt that "physicians have no particular expertise for unbearable suffering" (Q 1924). Baroness Greengross believed that, given that the law if enacted would apply only to competent people, the applicant rather than the doctor must bear the responsibility for the assessment. "With all the safeguards and all the expertise being available," she said, "it is that person in the end whose view should prevail, because it is about the quality of that person's life" (Q 1924). Dr Wilks took the view that "unbearable suffering" is necessarily vague because suffering is not necessarily purely physical. The important point is that it is what the patient feels to be unbearable… When we talk to patients about their perception of their illness, it may be very different from the way the doctor might feel the illness is perceived, and it is terribly important to listen to the patient's view of the impact of their condition on their quality of life and their perception of the value of their continued existence… If on persistent questioning—not just one consultation but on persistent questioning—their was a consistent belief by a patient that their condition was unbearable, one would accept that they found it unbearable" (Q 349).

130. Dr Randall on the other hand suggested that in many cases, while there could well be unbearable suffering present, it might not derive from the terminal illness but simply exist alongside it. She cited for us what she regarded as a common phenomenon of a terminally ill patient whose spouse had died. "The person who was their source of company and comfort is dead. When they say they are fed up and they wish it was all over and they are asking to be out of this because of their illness—is it the loss of their key relationship? Or are they suffering unbearably as a result of the terminal illness?" (Q 2040). Dr Gilbert pointed out to us that patients other than those who are terminally ill might be said to be suffering unbearably. "There are people," he observed, "with arthritis who find it unbearable that their lives are restricted by the pain that they have to endure chronically, perhaps for many years" (Q 1974).

The Demand for Assisted Dying

131. In Oregon, in 2003, one in 714 deaths resulted from assisted suicide. In The Netherlands in the same year one in 38 of those who died did so via either assisted suicide or voluntary euthanasia, mainly the latter (the figure is 1 in 32 if cases of euthanasia without explicit request are included). The legislation which permits people to die in this way is, of course, very different in the two countries concerned. In Oregon applicants must be adults and they must be terminal ill, whereas in The Netherlands, though there is a requirement to demonstrate unbearable suffering, there is no requirement for terminal illness and applicants under 18 years of age may qualify, albeit with their parents' consent. Perhaps most significant, however, is the fact that the Oregon Death with Dignity Act (ODDA) permits only assisted suicide, whereas Dutch law allows both this and voluntary euthanasia—and indeed the latter predominates in practice, accounting for over 90% of assisted deaths in 2003. We shall be commenting in more detail on these figures in Chapter Five.

132. It seems clear therefore that the demand for assisted suicide or voluntary euthanasia, if measured in terms of the numbers of applicants, will vary according to what the law permits. Indeed, it is this which causes most concern to some of the Bill's critics. They are prepared to accept that, if moral objections to the principle underlying the Bill are laid aside, there could well be a very small number of serious and determined people who are not going to change their resolve and who might be allowed to take their own lives without undue damage to the fabric of society. Professor Leigh, for example, told us in the context of motor neurone disease that "a small proportion of our patients are quite clear that they wish to exercise this option and that preventing them is adding significantly to the burden of suffering… It is a very small minority" (Q 1128). There is a concern however that, unless any change in the law is very tightly circumscribed, others will find themselves pressured in one way or another into taking a course of action which they would not have sought if the law had not allowed it. For this reason we have tried to assess what might be called the "serious" demand for assisted suicide or euthanasia.

133. Lord Joffe suggested to us, in the context that his Bill was intended to cater for terminally ill people for whom palliative care had not provided an answer to their distress, that it might cover between three and seven percent of patients with terminal illness (Q 101). Mrs Christine Kalus, for the British Psychological Society, told us that "over the years my colleague and I have rarely encountered people who want to end their life, although many express a wish that their suffering was over. Thus, once appropriate symptom control has been achieved in so far as this is possible, people are able to regain some semblance of quality of life. However, it is also important to note that, in our combined experience, there have been very few people, probably less than ten, where there was no evidence of clinical depression or anxiety, their mental capacity being apparently intact, who had an express wish to die and would have welcomed assisted dying, had it been available to them" (Q 475). Professor Leigh, for the ABN, made the same point—that what most terminally ill people want is effective symptom control. "The people who are left over," he added, "who are not satisfied with that approach, are a very small and very often pro-active group of people for whom the simple burden of the disease—not the dying bit—is what really hits them hard and really makes life intolerable. They cannot bear the continued loss of function" (Q 1151). Dr Carole Dacombe had had the same experience and believed that palliative care specialists must be prepared to listen to such patients (Q 1913). Dr Tom Shakespeare of PEALS believed that: "the people in society who are most keen on this measure are older people, people who are in their seventh or eighth decade, who have had a very vigorous life and who have had control and choice in all areas of their life and really want it at the end of life" (Q 532). It was however also suggested to us by palliative care specialists that others, including patients who have experienced poor symptom control, also make requests for their lives to be ended (Q 387). Professor Foley summed it up as follows: "The question that you need to ask is—are we attempting to cater to a very small population of patients who want control over the end of their life and want physicians to provide that control?" (Q 2116).

Vulnerable Groups

134. We took oral evidence from expert witnesses in regard to the potential vulnerability of two groups of people in the event that the Bill were to become law—the disabled and the elderly.

THE DISABLED

135. We found a difference of view from, on the one hand, the Disability Rights Commission (DRC) and Disability Awareness in Action (DAA) and, on the other, Dr Tom Shakespeare of the Policy Ethics and Life Sciences (PEALS) Research Institute of the University of Newcastle. The DRC and DAA, while supporting greater autonomy for disabled people and not opposing in principle assisted suicide or voluntary euthanasia for disabled people who could freely choose it[52], had reservations about how the Bill would in practice impact on disabled people. Their concerns were that the Bill, if enacted, might reinforce existing public prejudices, including those of doctors, with regard to disabled people and that, if assisted suicide and voluntary euthanasia were to be on offer, disabled people might experience subtle pressures to avail themselves of these options and that support for independent living might become harder to obtain. They did not believe that the Bill offered disabled people real choice or autonomy in the same way that it might do so for those who were not disabled.

136. Ms Jane Campbell, a DRC Commissioner, spoke of terminal illness and disability as being "so inextricably linked that the terms are interchangeable within the eyes of the public" (Q 504). Ms Tara Flood, speaking for the DAA, referred to, "the images that you see on TV, the images that you see in the newspapers, it is the images that people see in hospitals and the images that relatives have seen… it is all those kinds of images that come together to suggest that it is absolutely better to be dead than to be disabled" (Q 514). As a result, said Ms Liz Sayce, Director of Policy for the DRC, "if assisted dying became legal, decisions could be made through a prism of the prejudice and inequity that does still pervade our society" (Q 505). The Bill would not give disabled people real autonomy. In the DRC's view, it would give "coercion dressed up as choice" (Q 506). "What disabled people want… is a right to a life where we have real choice and control and the protections of that right to life are the same as non-disabled people take for granted" (Q 506). The Bill, said Jane Campbell, "will not increase our autonomy, it will reduce our choice because we will begin to feel the pressure of a culture that would think that actually our choices should be limited" (Q 511). The priority, said Liz Sayce, should be "improved entitlements to services that provide dignity, including palliative care but also very much including social services… This is an imperative so far as we are concerned, to make sure people can make the active choice to live their lives in dignity" (Q 519). Professor Blackburn referred to "the indignity of dependence" (Q 1839). While supporting Lord Joffe's Bill, he added that "the only objection that I can see… which would carry weight in my own mind… would be the fear that people might feel not necessarily even pressured but a kind of duty to put themselves out of the way, to ask for a release which otherwise they would not have asked for" (Q 1843).

137. Dr Shakespeare saw the matter differently. He felt that it was "inconsistent that the disability community would support autonomy in every other area of life but not the area of choosing when life becomes intolerable to end it" (Q 525). He did not believe that disabled people would be vulnerable to pressure to opt for assisted dying. "I do not think disabled people are dupes… I do not think they are going to be trotted off to die against their will" (Q 532). Referring to the Bill's restriction to terminally ill people, Dr Shakespeare observed that "terminally ill people could be seen to be disabled, but disabled people are not necessarily terminally ill" (Q 525). And referring to a recent YouGov survey, he concluded that, "only a small proportion [of disabled people] would trust doctors less if the Bill became law" (Q 525). While Dr Shakespeare accepted that many disabled people have had negative experiences of clinicians, he thought such experiences might be exaggerated. "I think the vast majority of disabled people have good experiences of clinicians… I think it is sad that some disability movements think of doctors as the enemy, whereas for the vast majority of disabled people doctors do not always get communication right but they are basically on their side" (Q 526).

138. Lord Joffe himself suggested (Q 522), on the basis of the British Attitudes Survey and the YouGov poll referred to above, that the majority of disabled people supported his Bill. In response Liz Sayce felt that such surveys needed to be treated with caution. She suggested that people with lesser disabilities, such as being wheelchair-bound, might well favour the option of assisted dying for people with more serious disabilities, such as those with breathing difficulties, with which they personally felt they would not be able to cope. But "people do adapt to each stage… I think it is something like 90% of people with quadriplegia say they are glad to be alive, whereas only 5% of the doctors treating them imagine they would be glad to be alive if they were in their position… I think the people whose views really matter are those people who are in the sorts of positions who are facing these kinds of difficult decisions about possible death, about very significant and long-term impairment" (Q 522).

THE ELDERLY

139. The views we received here showed some similarities with those regarding the disabled. We were told, for example, by the British Geriatrics Society (BGS) that "many older people, probably because of the care that we in the United Kingdom offer them, often feel burdened and often feel a burden to their families, and consequently we are anxious that the choices they make may not truly reflect their wishes but may reflect the way they have been led to feel by the way they are treated within the health and social care system. We feel that older people can be very vulnerable to adverse influence from outside, families and carers, and many of our members have felt that requests to end somebody's life artificially have usually come from families and carers rather than from the patients themselves" (Q 1173). Help the Aged was also "worried that, if this Bill is enacted, some vulnerable older people might pick up little bits of the story. They might pick up in the same way as they are picking up around 'do not resuscitate' stories. This fear of going into hospital—'What is going to happen to me?'—is a fear that, if they went into hospital, a doctor would have the right to take their life" (Q 1174). And we were told also that, "one main fear is… about going into residential care, not feeling that they have any power over decisions even if the systems try their best to help them to make decisions" (Q 1175). "Many older people," we were told, "are disempowered in the present system, in the health and care system, very often as a result of poor health and of a general fear of speaking up, or most importantly, simply being unaware what their rights are and what they are entitled to" (Q 1176). On the other hand, Professor Tallis was not aware of evidence "that increasing age is automatically associated with a decline in assertiveness over things that matter" (Q 1907).

140. Asked by Lord Joffe to comment on the results of surveys whose results suggested that some 70% to 80% of elderly people favoured the Bill, Tom Owen of Help the Aged acknowledged that the concerns he had expressed were not shared by the whole of the elderly population. He was however concerned that such polls did not necessarily reflect the views of older people who found themselves experiencing failures in the health and social care system and that, just as older people often complained that the young did not understand what it was like to be old, so many elderly people did not necessarily know what it was like to be very old or infirm (Q 1183). Professor Tallis on the other hand cited evidence from Oregon and The Netherlands to the effect that people over 80 years of age tended not to opt for assisted suicide or voluntary euthanasia. "The older the age of death, the less need in general there is likely to be for assisted dying. Younger people die harder than very old people" (Q 1906).

In Conclusion

141. We have explored in this chapter a number of the key real-life issues affecting the subject of assisted suicide or voluntary euthanasia. We turn now to our findings concerning the experience of legislation of this nature in other countries.

26 See Volume II: Evidence, HL Paper 86-II, Pages 2-3 Back

27 See Volume II: Evidence, HL Paper 86-II, Page 140 Back

28 See Volume II: Evidence, HL Paper 86-II, Page 140 Back

29 In the United Kingdom higher specialist training to consultant level in palliative medicine takes four years, whereas in other countries, including the USA and The Netherlands, there is no such specialist training and the speciality of palliative medicine is not recognised. Back

30 See Volume II: Evidence, HL Paper 86-II, Page 135 Back

31 See Volume II: Evidence, HL Paper 86-II, Page 97 Back

32 See Volume II: Evidence, HL Paper 86-II, Page 3 Back