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

Examination of Witnesses (Questions 1940 - 1959)



  Q1940  Lord Joffe: Yes.

  Dr Dacombe: No, absolutely not. Patients have the right to be offered services but equally they have the right to turn down services if they perceive that it is not for them. I do not see that as a problem.

  Q1941  Lord Joffe: Dr Bosshard, how long has the Swiss law been in force which enables patients to be assisted to die? Has that position now been accepted by society as a whole without any kind of parliament?

  Dr Bosshard: On the level of canton laws, it has been implemented more than 100 years ago. On the level of the government, actually it has been implemented about 60 years ago. I would say it has always been accepted by the population as a whole—otherwise it would not have been law—but what has changed is the focus. You have just used the term "assistance to patients", and "patient" is also a medical term. But article 115 was not made in a medical context 100 years ago, but rather in the context of matters of honour. What now has changed is that article 115 is discussed in a medical context.

  Q1942  Lord Joffe: It has been extended, in a way, to allow doctors—-

  Dr Bosshard: I would not say extended but the context is different. But it seems to the Swiss population that this article still is very pertinent.

  Q1943  Lord Joffe: Which article?

  Dr Bosshard: Article 115, allowing any citizen to assist in the suicide of someone else as long as there are no motives of self-interest.

  Q1944  Lord McColl of Dulwich: Professor Tallis, you mentioned the question of these folks being a burden on their family, friends and care givers. I think you mentioned that in the Oregon situation this was not a problem. Are you aware that in fact in one of the studies 38 per cent of the patients did feel that?

  Professor Tallis: First of all, the Oregon data seems to suggest that the pressure from the families was a negative pressure, that they were reluctant to encourage the person to avail themselves of assisted dying. In the study to which you are referring I am not too sure whether burden was actually the primary reason for wishing to have assisted dying; there were other factors, including symptom control. I would have to check that out.

  Q1945  Lord McColl of Dulwich: Twenty-one per cent in fact had inadequate pain control but 38 per cent felt they were a burden on their family and carers and friends.

  Professor Tallis: If I recall, in that same study—and I may be quite wrong here—one of the main reasons, and probably above burden, was the feeling of loss of control. I may be wrong but I think I am thinking of the same study.

  Lord McColl of Dulwich: This was the Oregon Death with Dignity: 6th Annual Report published around about the Ides of March last year.

  Q1946  Earl of Arran: This is a question for Dr Dacombe, who has had so much experience, in a large hospice in Bristol for many years, at the sharp end of life and death. Obviously I would assume that your patients are aware that this Bill is in the public domain now—it is much discussed about. What is the interest? Is it one of a sense of relief that they might be able to take advantage of it if the Bill became law? Or is it one of a sense of anxiety from the point of view of that so-called "slippery slope"? Or in all honesty are they too old and too ill to really have views about this?

  Dr Dacombe: I think it is important to say that obviously in responding to this question anything I say is going to be entirely anecdotal because in no way whatsoever have I carried out a survey of my patients.

  Q1947  Earl of Arran: I understand that.

  Dr Dacombe: And I am very conscious that actually some of the patients with whom we are involved will have an awareness and some may not. Their awareness levels will vary tremendously, as indeed I am sure awareness in the general public varies tremendously, as to whether they know nothing at all, whether they have heard the occasional interview on the radio or in the newspapers, or whether they have scanned the internet day by day, week by week to see what has been said to you. I think we know that the level of interest within the public generally in an Act like this will vary. Certainly amongst the patients who would choose to share conversations about the manner in which they are anticipating their life might end, the manner in which they are hoping their life might end, there has only ever been positive comment about the thought that this Bill is at least being discussed as it is at the present time. The patients who have chosen to make remarks to me entirely spontaneously or where remarks have come up during conversation it has been specifically at their request around the issue of end-of-life care and assisted dying, the comments have all been very positive, that their perception would be that they would like to be having the conversation knowing that this was within the legislation of this country.

  Q1948  Earl of Arran: I find that helpful. Thank you very much.

  Dr Dacombe: Thank you. But that is very anecdotal.

  Q1949  Baroness Finlay of Llandaff: Obviously we are looking at a bill that is before us at the moment. I wondered, Dr Cole, when you were talking about the patient's WHO rating 4, what percentage of those have any competence impaired and how accurately you are able in your routine clinical practice to measure competence.

  Dr Cole: I think quite a lot of those patients do have impairment of competence, to be honest. Many of them, as you know, will be on opiates which may impair their judgment or that might make it difficult or impossible to participate in this process.

  Q1950  Baroness Finlay of Llandaff: Some of them may have a degree of impairment of competence that may be difficult to detect.

  Dr Cole: I think competence is a very difficult concept for physicians or lawyers to judge. There are patients with mild impairment of intellectual function for whom you think you can have a good discussion and they can express a reliable competent opinion. There is not, as far as I know, any widely used scale to judge competence. Perhaps there should be.

  Q1951  Baroness Finlay of Llandaff: I think relating to the other bill before us, the Mental Capacity Bill, we have been assessing competence much earlier on as something which has challenged some people's thinking. Professor Tallis, you were talking about this being an option in the therapeutic alliance with the patient, and then you were talking about patients who are in bed, who have pressure sores and who may feel that their life is not worth living. I wonder whether you would agree with me that the existence of pressure sores is often a marker of bad care, and in fact has been used as an audit tool for bad care, and therefore I wonder how you are going to ensure that patients who are in that situation have not actually been coerced, perhaps indirectly, into being aware that they are too much of a burden for the current system to cope with and that the future therefore looks increasingly bleak because they certainly are not getting improvements in care.

  Professor Tallis: I entirely get your point. You can imagine a vicious cycle: bad care leads to a sense of hopelessness, reinforces worse care, as a consequence of which people feel the only option is assisted dying. You could imagine, if there were not all the safeguards in the Bill, that this would lead to an increasing amount of bad care.

  Q1952  Baroness Finlay of Llandaff: Could you explain how the safeguards in the Bill will protect a patient against that situation?

  Professor Tallis: For a start, because it would be a relatively unusual phenomenon a very bright light would be shone on the care of the patient, not only from physicians, but also, of course, from psychiatrists if there were any question about mental function—depression and so on—and also from a visit from the palliative care team. It seems to me that the first thing a palliative care team might well do if they were unhappy about the care of a patient, would be to point out they are unhappy and make that very clear in the notes. I think it is an excellent mechanism for ensuring that palliative care intelligence penetrates the system more and more, even in advance of getting uniform good palliative care. I am very aware, being a geriatrician, of the deficiencies in the palliative care system, beyond a subgroup of patients who have cancer. It seems to me that that is a safeguard not only against a patient being driven by a sense of worthlessness, due to poor medicine, from seeking assisted dying, but also against bad care. There is a very small sub-group of patients who do develop pressure sores or disintegrate, even in the best possible facilities, when they have the best possible care. We are talking about a small sub-group of patients. It is very important to emphasise that. I think the Oregon figure was either 0.7 per cent or 0.4 per cent of all deaths that were due to assisted dying, so we are talking about a very small sub-group. And there will be that sub-group of patients in whom even the best team cannot assist to the point where the suffering is bearable.

  Q1953  Baroness Finlay of Llandaff: I wonder if I might move on to Dr Dacombe, because you have spoken about the palliative care team being involved. Why do you feel that your views are in the minority in relation to other people who are doctors working full time in palliative care?

  Dr Dacombe: I am not sure I can answer that question. I am not sure that I know. It is a fact that there are similar views to mine in palliative care and not all my colleagues would necessarily agree with me. I think the opinions that have been surveyed, for instance, by the Association of Palliative Medicine have obviously, by our own representative's free admission, only been surveyed in an extremely basic and relatively superficial manner. I think it would be interesting to have that surveyed at a greater depth and with a greater accuracy and perhaps an improved methodology. My colleagues from the Association of Palliative Medicine, who came representing the Ethics Committee and gave a very thorough presentation—and for whom I have enormous respect, I might add—referred to the survey, which they printed as an appendix at the end of their presentation. They acknowledged themselves that it was lacking in fullness and clarity. I do think it is an important point to make that, even within that survey, interestingly, although the first question asked about people's feelings about whether or not (a) euthanasia and (b) physician-assisted suicide was, if you like, for the good of our society, clearly, as you identify, the majority of our colleagues were determinedly against it and it was only a relatively small minority who were in favour. I would point out that in question 2, which asked: "How many patients in an average year make a rational persistent request for you to end their lives?" there were only 23 per cent of the respondents who were able to say "None." If you look at the figures, 50 per cent of the respondents had to state that somewhere between one and two patients had actually made that request. If you extend further up the figures, you get to 20 per cent of respondents who have to acknowledge that somewhere between three and five people had made those requests to them. Therefore, it is a fact that within society, within our population of patients, these requests exist, and in a sense that is what I am acknowledging here today. I acknowledge that I am in the minority of my palliative care colleagues, but perhaps I am not in a minority within society as a whole.

  Q1954  Baroness Finlay of Llandaff: The Bill at which we are looking at the moment asks for palliative care to be involved. Within your own team, where I am sure you have discussed this, how does your team view you being the person who is the person who will give physician-assisted suicide or even a lethal injection to a patient?

  Dr Dacombe: We have discussed these sorts of issues at some length. Generally speaking, I have encountered much more of a positive response to the concept of this Bill than a negative one across the disciplines, because there has been a universal recognition within our team that the patients to whom I have alluded do exist who make this request. I think that, generally speaking, the team would certainly like to see this in existence as an option for patients. Given the issue of conscientious objection which is built into the system, they are supportive, in being able to have a positive view of patients being able to access assisted dying and yet knowing that they or any of their colleagues could opt out of the process. I think that obviously is important, as has been encountered in other areas of medicine.

  Q1955  Baroness Finlay of Llandaff: You gave us examples from your own clinical practice of patients who have persistently wanted to die. I wonder why you felt that these patients had not committed suicide, given that they have a lot of drugs available to them. They may have a syringe driver attached on which they could easily depress the plunger. I wonder what you feel is happening in these patients who will talk about, "I don't know that I want to carry on" or who will express a desire for death but who do not, despite having enormous quantities of drugs sometimes, make any attempt to put them all in a drink and drink them all in one go as Dr Bosshard has outlined.

  Dr Dacombe: I think some of the issue here is that, despite what you have said, of which I am very well aware, there are many patients within the small group we are talking about who do not feel they understand enough about their medication and how it could be taken to know what dose of what medication they would need to take to end their life. They may even have an awareness, or they may in the past have tried taking an excess amount of medication and simply failed to end their life and caused distress to those around them and, indeed, to themselves by that failure. I do think it is somewhat unfair to assume that our patients, in knowing that they are on a multiplicity of medication and to some extent what that medication is and how it acts—because I trust it has been adequately explained to them by their health care professionals—would feel confident that they knew how to take it specifically to end their own life.

  Q1956  Baroness Finlay of Llandaff: Could I come back to the question of the way the patients feel and whether they feel a burden. When patients are discharged from an in-patient unit and go to a nursing home, I wonder whether, in your general experience, that is something which they feel is a good outcome, or whether you encounter patients who feel that they do not want to be in that situation of going to a nursing home, who feel they are a financial burden to their family, as well as emphasising the loneliness and perhaps desolation of some of the nursing homes that may be offered to them.

  Dr Dacombe: I would completely endorse the thought that moving from a specialist palliative care in-patient unit to a nursing home for the continuation of their care is not for all people a particularly comfortable or wanted outcome. There is research into this. At a very superficial survey level, we ourselves at the hospice have looked at the outcomes for patients transferred to nursing homes. We have identified that a number of people do find that an extremely difficult transition. For a small number of people, it is seen as an entirely satisfactory outcome. It is a minority, I do not hesitate to say that, but where they are settled into a nursing home where they perceive they are in good care and they are closer to family and friends, within the community that they have associated as being in their home territory, clearly that is a comfortable outcome. For others it is not. I am not that the issue of finance is always as big an issue as the quality of care. I think we are very well aware in specialist palliative care that the level of staffing and the multidisciplinary nature of staffing is such that the care patients receive is truly all-embracing, and that is not necessarily reproduced within a nursing home. Although you hope they would receive good general care, they will not have as much of the other disciplines involved.

  Professor Tallis: I do not think I can improve on what Carole has said, except you probably know that the same issues theoretically would arise in other end-of-life decisions, such as the withdrawal of medication and so on, and the whole point about this proposed law is that in fact these things are scrutinised much more carefully, far more carefully than they are in relation to the withdrawal of life-prolonging or life-saving medication. I do not think it is a very specific issue for this; in fact, if anything, the argument works the other way. Sally, you have a much more global view of the view of older people in this respect. I guess Carole and I look at a very small sub-group of these people and therefore, potentially, have a distorted view.

  Baroness Greengross: I do not think I can back up my view in any way as well as you have. I feel we are talking about a very small group of people. 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 this is part of our culture. It is not a nice thing that in our culture this is so prevalent. It is about an inability to provide care in the culture that I think we would like where people feel wanted and loved and respected. The fact that that exists is very sad and we have to try to eliminate it. I just think this Bill, by promoting honesty and straight-talking, is going to be one link in a chain of improving care. I feel it is about improving care and improving communication. As I said to Lord McColl, people I think would feel better knowing that their doctor is caring for them and that if the doctor was going to be involved in saying, "Do you want me to help you end your life?" it would be in the open. Unless that happens, there is no question of it. I feel the burden question is a societal problem and a problem of resources in this country, in the way in which we allocate resources, and it has to be treated differently from this subject. There are lots of things that get muddled up together, like the disability organisations feeling they are undervalued. They are. People with disabilities are undervalued. It has nothing to do with this Bill. We have to do something about that, with disability discrimination and the value of individuals altogether. If we start about the burden that individuals feel they are on society, that is about a re-allocation of resources, training care-staff better and changing our culture, and not about this Bill.

  Q1957  Lord McColl of Dulwich: Has Baroness Warnock helped the situation of people feeling a burden on society, when she says they ought to push off, that they are a burden on society?

  Baroness Greengross: If I may venture an opinion, I think Baroness Warnock was echoing a view which is widely held and which she believes should be more widely discussed. I spoke with her afterwards and she said, "But anything that makes people more open and makes people discuss these things more openly is good. That is why I did it." She has her views and I think the doctors here will often encounter patients who share her views: "I don't want to be a burden and I'd rather die." But I think she was saying it to get a more honest appraisal of where we are. Therefore, whether she was correct it is for everybody to make up their own view. But I think that is why she did it.

  Q1958  Bishop of St Albans: We have been much helped in this Committee occasionally by the use of what I would like to call parables: stories that are illustrative and very illuminating. I would like to try one. I would ask you to imagine that you are walking across Westminster Bridge and you see somebody jumping off the bridge. You are next to one of the life belts. This is about autonomy. Do you throw the life belt? Do you jump in?

  Professor Tallis: I like to make a diagnosis first.

  Q1959  Bishop of St Albans: There is not time, is there.

  Professor Tallis: In which case, I set the default position to stop them from killing themselves, and then we can look for a diagnosis.

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