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

Examination of Witnesses (Questions 400 - 419)



  Q400  Baroness Hayman: I am sure there is evidence that different people take different times. It is the causal relationship that I am finding difficult to be certain about.

  Dr George: The causal relationships by and large that we find, if there are relationships that are known to us, are usually found out through the family. Dying is a family event as much as anything, and often the information that comes out as the process is going on is associated with the processing that takes place in this organic group, with the patient at the centre who is dying. The information that we will have around will come from other family members. That is as far as I can go, I think.

  Q401  Baroness Jay of Paddington: My question follows on from what Lady Hayman has been asking you about, Dr George, and also I will ask Ms Robinson about this. I am interested in this concept of self-governance that you both referred to. Let us assume, just literally following on from what Lady Hayman has been saying, that you have patients who have resolved their family issues, have no concerns about the after-life, who are under your very expert palliative care in terms of their capacity to withstand physical pain, are not depressed, etc that is, you are dealing with a clean sheet of paper in so far as you can talk about it in that way. And yet they are, as you describe them, controlling personalities, A-type personalities, whatever are these semi-pejorative words we use about people who, I suspect, are also characterised as saying they put great value—not necessarily absolute or total value—on their personal autonomy. The way you have described your self-governance—and I may be misrepresenting you—is almost as though this is either a character failing or a character plus, that you may be able, if you are a certain character, to recognise that the end is coming, and whether or not you have all these other characteristics, you let go. Is it not possible that, human fallibility being what it is, you could be a controlling personality, all of whose issues, physical and mental, have been dealt with by your expert palliative care, and still not let go? Then what happens?

  Dr George: I was not suggesting that there were some people who were good and there were some people who were bad at this.

  Q402  Baroness Jay of Paddington: I think, if you look at the language you used, you might feel that that was what you were saying. I see Lady Hayman nodding.

  Dr George: In which case I apologise and withdraw that. If there was any bias in that, I did not intend there to be at all. In terms of people who have resolved their matters and are waiting to die or wishing to die, then they can die when they are ready. If people feel that they want to die, then they are able to do that. Actually, a lot of the conversations we have with patients are about the fact that they do have a lot of control over those last few weeks and days of their life in terms of when they live or when they die.

  Q403  Baroness Jay of Paddington: What is the empirical or clinical evidence for that on a large scale?

  Dr George: We probably need to get it.

  Q404  Baroness Jay of Paddington: You do not have it now? You are asserting it but you do not have it now?

  Dr George: No. I could give you a series of cases. I could give you a retrospective.

  Q405  Baroness Jay of Paddington: I am sure we could all produce anecdotes.

  Dr George: No, not anecdotes. In terms of prospective work, that prospective work has not been done. If one looks at the literature in terms of consensus or in terms of clinical experience, whilst that does not conform to the criteria of evidence that one would see in a randomised control trial, the corpus of that data is sufficiently large for one to say that there must generally be a truth in this statement. One of the difficulties we have in palliative care is that it is very hard to get research funding to do clinical research. 0.18 per cent of the research budget for cancer service goes to palliative care. We are very short on the ability and the funding to do this work, and so in a sense we are left with the things that I have said. That is a failing, I think, in ourselves for not going out and trying to get the funding but I would also suggest that some of the funders should see some value in this kind of research for us to understand these processes better.

  Q406  Lord Taverne: Dr George, as I understand it, in some ways the nub of your case as you put it is that, if the Lords change things as the Bill suggests, there will be a paradigm shift to see death as a good; and you cited The Netherlands as an example of that?

  Dr George: Yes.

  Q407  Lord Taverne: We are going to go to The Netherlands and see what the position is there and try and assess the evidence. Suppose we find that that is not an accurate description of what is happening in the Netherlands. Would you agree that that undermines your case?

  Dr George: From my understanding of the data from The Netherlands, consistently one in five of the euthanasia's—and the majority of euthanasias are a very small percentage of assisted suicides—is non-voluntary. That means that the doctors are considering, in their proper consideration of patients' best interests, that that is an appropriate course of action. If they are considering it on the basis of the best interests of the patient and they have not consulted the patient, presumably the patient is incapable or in some way is unable to give a view. That means that the doctors must be seeing this as a generally applicable therapeutic measure in patients at the end of their lives.

  Q408  Lord Taverne: Suppose that it is then shown, as the figures seem to suggest, that in fact the non-voluntary euthanasia rate in The Netherlands is much lower than it is elsewhere. Is that not also undermining your case?

  Dr George: I do not think we have evidence from this country—and we are talking about this country after all—as to what is actually going on. I feel that the surveys that refer to what is happening with doctors, what they are doing or are not doing, have not been looked at in a systematic or even-handed way. That is research that needs to be done.

  Dr Jeffrey: Can I make one comment about The Netherlands? I too have been over to The Netherlands and spoken to doctors and interviewed them and taped their interviews. I have met doctors who have carried out euthanasia. You will be carrying out these researches yourself. I can only reflect on the extraordinary distress and effort that it costs these doctors to undergo this process. It was personally enormously taxing to them. There were lots of ambiguities. The other concern that I have, if you are going to talk to people in Holland, is that you will need to try and find a group of specialists in palliative care to talk to. You may have to hunt far, because palliative care services are so less developed in that country as a result of their policy. In this country we have one specialist palliative care bed for every 18,000 people. In Holland it is one bed for 30,000 people. It is a big difference. The speciality is not recognised as a speciality as it is in this country. There are not the same training programmes; there is not the same thrust as there is in this country. In some ways I feel sad as a palliative care physician. We have a speciality in this country that we undoubtedly and unquestionably lead the world in. Every palliative care specialist around the world agrees: where do you come to? To the UK. I have had a team from Maastricht wanting to set up palliative care come to our hospital team to work. We are in severe danger of throwing that out and losing it because, make no mistake; this will have a huge impact on palliative care services if this legislation goes through.

  Q409  Baroness Finlay of Llandaff: I was going to ask you what you saw as the impact on palliative services if this legislation went through. One of my concerns is that there is a clause in here about patients being assessed by a palliative care specialist, and I would like to ask Ms Robinson in relation to the nurses, given the small number who have undergone high level specialist training in nursing as opposed to those who work in the field and have their salary paid by one of the charities for a time and are therefore called Macmillan nurses, which is a separate group, what you feel will happen to developing specialist competences amongst the nurses, from the doctors and the nurses who are seeing the patients on a day to day basis.

  Ms Robinson: If I can refer back to my evidence, we are gravely concerned in particular about the level of confidence and competence that there is in the nursing world. The society that we are practising in now is very different from the society that was around in the 1960s, when the hospice movement was first started by Cicely Saunders. I think it is a real problem for us in that there are only 15 nurse consultants in England who have studied a great deal the speciality of palliative care, and it is our job nationally to raise the issues, amongst our colleagues both inside and outside the speciality, of the difficulties that we are facing now with patients who are being a lot more vocal about what it is they want and what they do not want towards the end of life and how we can reconcile that with the philosophy of palliative care. All I can stress is that in 16 years' experience—and, as I say, we have nearly 200 clinical years of nursing experience—there is no suffering that cannot be alleviated or relieved if they are given good care in a context of specialist palliative care in a multidisciplinary practice.

  Dr Jeffrey: If I could answer from a medical perspective on the impact of palliative care, as I alluded to in my brief opening statement, part of the core skill of palliative care is communication skills and listening to people express their deepest anxieties and distress, and exploring issues of how people want their lives ended. We perhaps do not do this well enough yet, and certainly in a general setting we almost definitely do not do this enough. It is very difficult work. The idea that this Bill promulgates, that someone could come along and have a chat for an afternoon or visit a patient and their family and come away with some sort of realistic assessment of whether this person wants to live or die, or whether we should go ahead with euthanasia, just does not bear any relation to clinical practice. I talked earlier about the difficulty in making a prognosis. One of the other difficulties doctors face is in recognising depression. In the BMJ on 16 October there was a review of suicide in the elderly, and they commented on Breirbart's work, saying that doctors under-diagnose and badly treat depression. I know this may seem an old chestnut but it is another impact on palliative care. This assessment is absolutely crucial and the purpose of the assessment is crucial. It is part of our work. We do not call it an assessment for assisted dying. It is part of advance planning for a person's future. "What sort of death do you want in the future? We are doing this and this now; the time may come". Palliative care is all about anticipation of problems and discussing things. "What would happen if this happened?" "What would you like to have happen here?" "If the time comes, do you want a drip with fluids? Do you want that sort of thing or do you not want to do that?" This is the sort of direction that we would like to be going. The sad thing for me is that, because this is tied in this legislation in this way, palliative care physicians and a lot of my colleagues, nurses too, that I talk to are very worried about carrying out this assessment because they think "Will people think I am in the euthanasia bit?" because they certainly do not want to be in that. It is logically, completely contrary to the philosophy and ethos by which we practise. We cannot be involved in euthanasia and assisted suicide, it is just not part of our ethos and our way of working. That in itself might be enough to take palliative care physicians out of this valuable assessment work because they would be worried about being implicated in it. I think the other area which is of huge concern is in the implementation. There is very little said about this in the Bill. Is this going to take place in hospices? Is this going to take place in people's homes? Is it going to take place in an acute ward? Because let us remember that most patients now are dying in acute medical and surgical units in this country, so this is something that may have to occur in an acute ward in a Trust. I think these are reflections that we need to think about. We have a lot of concerns about the practicalities of the mechanics of this Bill. Are people going to be left with lethal medications in their home? Who is this fantasy "attending physician"? If you try and register with a general practitioner now, 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. Again, the Bill puts forward this fantasy that somehow a doctor will come who will know you and your family but this is becoming less and less likely given the pressures of general practice nowadays. It may still pertain in Holland, I do not know, but it does not pertain here. Your own personal experience may reflect that you may see that when you go to make an appointment with your particular GP and it may take three weeks to get in. You will see a doctor but you will not see the doctor that you are used to. I think there are these sorts of practical implications. Again, I alluded to what do we do when the process fails, as it can do, and fails to complete and the family are left struggling with that? The attending physician is not going to be hanging around the house or wherever this lethal medication is given. There are numerous clinical situations that I can allude to that raise problems in this, but I think particularly the assessment and the implementation of this Bill give us deep concerns.

  Q410  Lord Carlile of Berriew: I have just one question that arises from what Dr Jeffrey has just said. Clause 3 of the Bill, and we are concerned here with an ethical principle, places a specialist in palliative care in the position of an advocate in effect, it interposes a specialist in palliative care to discuss the option, as it says in the clause, of palliative care. In fact, as I understand it, what that means is that a decision in principle having been taken that the patient wishes to have assisted suicide, a specialist in palliative care is then placed into the equation to argue against assisted suicide and in favour of palliative care. Is that a role which you recognise as part of the current disciplines of palliative care specialists?

  Dr Jeffrey: Certainly not.

  Q411  Lord Carlile of Berriew: Can you explain why?

  Dr Jeffrey: I tried to allude to it before. We are coming to this with a view to trying to make the most of a patient's ability, with whatever life they have left to them, to allow them to make choices they can make to lead the life they can, to be free of pain and to express themselves as they wish. The idea of acting as some sort of gatekeeper role for euthanasia is quite contrary, and it is that very issue which worries palliative care physicians about being involved in any sort of assessment at all, that it might be misinterpreted as a gatekeeping role. We are looking at patients in this advanced planning role in terms of caring and trying to find out, tease out, what they want and it is difficult. Patients, like all of us, are inconsistent and what they say one day will change on another day. It varies even as to what discipline the specialist is who comes. I have done joint work with oncologists and been to see a patient with advanced cancer who on one day might say to  the oncologist, "I definitely want more chemotherapy" and the next afternoon will say to me, "I am really fed up with all of this, is there no way that we could just stop the chemo?" People say different things and it is a very, very difficult area to sort out. Certainly we do not want to be gatekeepers for euthanasia.

  Dr George: Could I just comment how difficult it is to manage patients who are late referrals to palliative care. If we have people who are referred early in their disease journey, then we can establish a relationship and all of the advanced planning that we are speaking of, and many of the things that I did not communicate adequately to you, Lady Hayman, start to shake down and we have a much clearer view of how things are going to go for that individual and how they want those things to go; and the advanced planning becomes much easier because it is not in the heat of the moment on a bad day or a good day, or whatever else is going on. Irene Higginson's work shows very, very clearly, over several studies that I was involved in a lot in the early 1990s, the great difficulty of patients coming late to palliative care referrals. They have a heavy burden of symptoms, they have major psychosocial conflicts, and 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 to make sense and get things in order becomes that much more pressurised and difficult for them. Seeing ourselves within a process that has a timescale attached to it is going to put an enormous pressure on us as clinicians as well as the patients not that I would refuse to see a patient who requests or needs palliative care regardless of what was happening to them, I would be entirely happy to see them

  Q412  Chairman: I wonder if you can help me. This really follows on from what you have just been saying, Dr George. If one was going to discuss with a patient the question of assisted dying, presumably one would need to give some picture to the patient of what the future would be for him or her if that particular course of action was not followed. Does that take time to evaluate?

  Dr George: Yes. If you take a person with any clinical illness, regardless, then the variants and varieties of problems that may arise can be quite broad. In certain patients, as you get to know them and you get to know the way the disease is manifesting, then one has more certainty in talking about the likely situations that will arise, the ways in which they may want them managed, the areas that they would not want managed, and so on and so forth. That is very much individualised and it is one of the reasons why it is so difficult to do research in these areas, because individual patients have high levels of variability and, of course, the time at which people want to talk about this stuff varies and their intentions and views as time passes vary as well.

  Q413  Chairman: Dr Jeffrey, you referred to some research that has been carried out into the success rate of prognosis. Can you give us a reference to that?

  Dr Jeffrey: I can do. I will supply that reference[10].

  Q414  Chairman: Obviously, in the past at least, you will have signed some forms with an estimate of how long a patient was going to live on these forms.

  Dr Jeffrey: Yes. The underlying idea of these Attendance Allowance forms is that it allows for the speedy payment of benefit to families so that they do not have to wait in a situation that is terminal. By signing that form you are indicating that you feel the patient has less than six months to live.

  Q415  Chairman: How do you go about that? Having a particular patient to consider, how do you go about estimating how long they may live yet?

  Dr Jeffrey: I alluded to the difficulty of it.

  Q416  Chairman: I am just wondering, could you enlighten us at all on the process by which one goes about it?

  Dr Jeffrey: I think the process is that one first of all listens to the patient and you try to get an idea from the patient as to the pace of the illness, the pace of the disease: "How were you last year? How were you six months ago? How were you three months ago? If I had met you a month ago, how would you have been?" Overall there is a drift, and this is only a very rough guide because you cannot be certain with an individual patient, and that is what is so difficult and that is something that we need to acknowledge with each individual patient. You cannot sit opposite a patient and say "I know this is what is going to happen to you"; you can make a professional judgment on it. I think one gets an idea from the pace. Nearer the time of death there are signs that patients are dying when they become increasingly bed-bound, when their vital signs reduce, when they stop wanting to eat and drink and they take to their beds. Those are the sorts of clinical signs nearer the time that someone is approaching death and very close to death, but around six months it is much more difficult.

  Q417  Chairman: Is there some research that shows how long people may live after they stop taking substantial food or drink?

  Dr Jeffrey: Yes, and Dr George has alluded to some of that already.

  Q418  Chairman: You mentioned this question of a paradigm shift. I am not sure I absolutely understand what is meant by a paradigm shift, but perhaps that does not matter. What I do want to understand is what the basis of your evidence on this is. Hitherto, in the medical profession in our country, acting within the law, death has been seen as something that would not be brought about by the deliberate act of a doctor?

  Dr George: Yes.

  Q419  Chairman: Putting it very simply, that would mean from the point of view of medical practice that death was regarded as bad and something not to be brought about willingly. If this Bill were to become law here, death would be seen as something that in some circumstances would be a medical good because it is a course of action that would be taken to improve, as it is thought, the position of the patient?

  Dr George: Correct.

10   Note by witness: Glare P, Christakis N, Predicting survival in patients with advanced disease Oxford Textbook of Palliative Medicine, edited by Doyle D Hanks GW, Chernyl, Calman K Oxford University Press 2004 pp 29-40. Back

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