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

Examination of Witnesses (Questions 380 - 399)



  Q380  Lord Joffe: Fifteen?

  Ms Robinson: Fifteen in England.

  Q381  Lord Joffe: But your submission is signed by eight, I think. There must have been a rapid increase?

  Ms Robinson: Right. There are 15. It was a consensus view, the submission. I will correct that.

  Q382  Lord Joffe: Does it surprise you that Help the Hospices, which says it is the national voice of the independent hospice movement, recorded in the submission that, of the hospice staff consulted, which is a very intensive consultation, one-third would treat euthanasia as an ethical obligation and two-thirds did not consider that palliative care could provide relief in all circumstances?

  Ms Robinson: Thank you for raising that. I think one of the major tasks within my group is to work closely with not only our NHS colleagues but also our hospice colleagues to better understand and assist with alleviating unbearable suffering, which is what is written down in the Bill. I have to say that it is my view that there are some specialist services who still find it difficult to engage matters of suffering and find it difficult to bring up issues of uncertainty with patients. And I see that particularly in hospice nurses, who will enter the speciality because they simply want to make life better for people and, because they have not really been challenged themselves to understand their own beliefs about the nature of the purpose of suffering and the meaning of life, if you like, find themselves in these terrible dilemmas where they have a patient in front of them for whom they have reached the end of their own resource in caring for them.

  Q383  Lord Joffe: Are you suggesting that many of the nurses in the hospice movement are not sufficiently trained?

  Ms Robinson: I think in areas of the manageability of suffering and dealing with personal autonomy, particularly in the context of the self-government side of autonomy, there is a huge deficit in all nurses, not just hospice nurses.

  Q384  Lord Joffe: If I could turn to Mr Gallagher: your society, your association, rather, the British Association of Social Workers, have put in a submission.

  Mr Gallagher: I am not here to represent them.

  Q385  Lord Joffe: No, I am just asking you as a social worker what you think of your association's submission. In it they say, "On balance we are inclined to support this Bill, subject to rigorous testing of the proposed safeguards to minimise the possibility of unacceptable pressure being placed on any individual to offer assistance to die when they might otherwise not have done so." Are you out of step with your association?

  Mr Gallagher: As I say, I am not familiar with how they arrived at that position, whether they conducted research with their members or not; you might be able to tell me. I have a personal view on this issue and I have a view that is representative of the Association of Social Workers who work in specialist palliative care, and I do not know whether that reflects the views of some people working in the speciality. Certainly within the speciality of social work and the speciality of palliative care there is no agreed opinion on this at the moment.

  Q386  Lord Joffe: If I might turn to Dr Tate, you did mention research into terminally ill patients, and I thought you might be helped by the research of DIPEX, which is part of the Department of Primary Health Care at Oxford, who have recently done considerable research into the subject, discussing and spending a lot of time with terminally ill patients. What they found was "a few people opposed to euthanasia for religious reasons or because it seemed they were discussing involuntary euthanasia; others expressed uncertainty. However, most people, especially those who had seen others die, felt strongly that the UK law should be changed to allow voluntary or assisted suicide", and then they went on, "A few contemplated suicide but would have preferred a change in the law to allow them to end their lives with medical help and in the company of family and friends".

  Dr Tate: I think I did say "robust research". There is certainly evidence, again from surveys but perhaps not yet as much as there should be, about the views of people who are terminally ill and approaching their terminal phase. We know from many other studies of people who are facing a life-threatening situation that their views may change and their views may evolve through time, depending on many different aspects of their social surroundings but also depending on the medical and clinical care that they have been receiving. They could be driven to assume different positions. We have had that evidence in relation to the kinds of treatments that people might choose to go for when they are actually terminally ill or when they are viewing that prospect in the future, and so the proposal from the National Council is that we need to consider many different aspects of how society views people at the end of life but also what people truly would wish to have in the true knowledge of what the end of life episodes might be. Many people, even as they face death, have not perhaps a very clear idea of how death may meet them because they have not been able to discuss that with their ordinary health carers.

  Q387  Lord Joffe: I am sure this research will be very interesting for you.

  Dr Tate: Perhaps Dr George might like to contribute as well.

  Dr George: There is a lot of research in the literature on work with terminally ill patients over time. There are a number of things that come out of it. One is that the people, who request death, see Kelly's work, are generally people who feel that they have been poorly investigated, their symptom control is poor and they lack confidence in the abilities of the doctors. Depression and disillusionment and hopelessness are common features. The response, for example, to the desire for death tracks almost exactly the fluctuation in pain day to day as you manage a patient. If somebody today feels one thing today and the same person tomorrow feels something else, the question of consistency and change over time is much more fluid than can be captured by a lot of these cross-sectional or even longitudinal surveys. It requires much more sophisticated research methods to get into what is going on here.

  Q388  Lord Joffe: In clause 3(4) of the Association's submission they deal with the question of what is headed as "terminal" and it reads, "Clinical evidence shows that consultants are often inaccurate in their estimation of the patient's prognosis. 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". The source for this is given as research by Professor Glare and a number of others referred to in the footnote reference. Reading on in the research of Professor Glare and his colleagues, he then goes on to add in the case of cancer patients, "Doctors' survival predictions become more accurate closer to the date of death and, though inaccurate, predictions of up to six months in length are nevertheless reliable as they are highly correlated with actual survival". Would you accept that?

  Dr Jeffrey: I would not accept that. A simple bit of practical evidence is one of the benefit forms that is 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, 18 months or even longer. It is something which is incredibly difficult. Even in cancer patients it can be very difficult to tell when a patient is dying. Dr Ellershaw, who has developed a care pathway for dying patients, comments on this and says how important it is for us to learn better ways of making a prognosis, of being more certain, because obviously when we are aware when a patient is dying, it is helpful for the patient, the relatives and the staff. The reality in clinical practice is that we can be wrong. I would agree entirely with what you are saying, Lord Joffe, that this gets easier the closer one gets, but predicting six months is not something that I would like to guarantee to any patient.

  Q389  Lord Joffe: I am not talking about guarantees because there must be exceptions. I am talking more of the generality. This question is addressed to all the witnesses and I am not sure who will care to answer it. In the Bill itself there is an array of safeguards, but in other end-of-life decisions, such as withdrawal of treatment or withholding of treatment or terminal sedation, there do not appear to be any legislative safeguards. Are you concerned about this? and, if not, why not, bearing in mind your concern about all the legislative safeguards which are included in the Bill?

  Dr George: The first thing is that withdrawal or withholding of treatment is allowing the disease process to continue. We are not causing a death by withdrawing treatment. I draw a clear distinction between causing death and withdrawing treatment, because it is the disease that is killing the patient. In terms of managing treatments—and you heard this morning clear guidelines from the GMC and the BMA on withholding or withdrawing treatment—we will apply and deal with those closely. We have clear guidelines from the National Council on food and fluid management around the end of life. We have clear guidelines on the use of opiates; we have clear guidelines on pretty well everything. Within the current NHS the application of clinical guidelines is now part and parcel of our practice. I do not think that something needs necessarily to be legislated for in order for it to be followed appropriately because what will happen if there is a change in the law is that guidance will be issued to doctors for the reasons of the paradigm shift I have mentioned. There will be circumstances where doctors will feel that it is in the best interests of the patient that their life be ended for a variety of circumstances, so I think the existence of legislation does not really make a great deal of difference to what we are doing because this is clinical practice.

  Q390  Lord Joffe: So, if as the next step in this Bill it went further, the GMC would look at it very carefully, issue very clear guidelines and doctors would be assisted by those guidelines in applying this law?

  Dr George: I think that, if any law pertaining to medical care does that, then the regulatory body's responsibility (which is the GMC's) is to ensure that we operate within the law. The BMA's responsibility, as our professional body, is to offer us guidelines about how to deal with that law. Whether or not that law is a good law or a bad law, or whether or not doctors end up doing other things or case law modifies it as you have said in your own evidence, Lord Joffe, that you see this as an incremental process I am quite sure there will be guidelines that will follow that as time passes. My point is that, once we change killing from a medical harm to a medical good, we have a paradigm shift and we will be required to follow that unless we object to it in some conscientious way, and that will be extremely difficult to do, extremely difficult.

  Q391  Baroness Hayman: On this debate about medical harm and medical good, and going back to your description of all patients being able to die by letting go of life, it seemed to me that you were suggesting that that in some cases could be a good?

  Dr George: Yes.

  Q392  Baroness Hayman: Would you consider it ethical to advise a patient on ways in which they could let go of life?

  Dr George: Oh yes.

  Q393  Baroness Hayman:— perhaps by refusing food and drink?

  Dr George: I give some case examples in detail in the paper you should have today, which you can look at at your leisure. Part and parcel of the letting-go process really is to discuss the issues that might be impeding a person in their dying. Are there unresolved conflicts? Are there unfinished tasks? Are there some concerns about belief about themselves or, as it were, the process of dying, death itself, or worries about afterwards, those kinds of questions? Then working with that patient to resolve those things and encouraging them within that process to start, as it were, to let go of life, and within that patients quite likely will stop eating large amounts of food. They may have the odd morsel of this, that or the other but, once the letting-go process has started, that by and large resolves itself in two to three weeks.

  Q394  Baroness Hayman: By and large? It is important for me to understand because there is a very small group of people here who may be intractable. I think you designated them as people who wished to be in control.

  Dr George: I did not say specifically that. I said that was one of their characteristics.

  Q395  Baroness Hayman: There will be some you cannot persuade to take—

  Dr George: Of course, because they are free to choose what they are free to choose. That is a freedom that they have. It does not confer a duty upon me to do something.

  Q396  Baroness Hayman: No; I am just trying to understand the options that are open to different people who will see themselves in the same situation and whether it is correct that—and I took down exactly the same two quotes as Lord Carlile—there is no suffering that cannot be relieved and all patients are able to die; and whether that is the situation and, if only you were allowed to practise your skills properly with everybody, that would be all right; or whether we are back to the point that has been put by some other people (and that indeed in your evidence has come out) that there may be a small sub-set of people who are left unhappy by not having the option of assisted dying but for the generality of patients that is a price to be paid, if I can put it in that way. I am just trying to disentangle the two arguments.

  Dr George: Can I have another go at that?

  Q397  Baroness Hayman: Please.

  Dr George: When I said "by and large", I can give you many examples of patients that I have spoken to or cared for. I had one gentleman the other week. We spoke about this and he died the following day. Another patient may take three or four days. Another patient may take a week. Another patient may require more time to talk. Other patients have what we call prolonged death because they are waiting for something. They are waiting for somebody to come from abroad, they are waiting for a family member to arrive, they are waiting for an anniversary, all these kinds of things, and these patients may be semi-conscious. That group of patients may take a long time to die but, by and large, certainly from a biological point of view, if someone is not taking significant amounts of fluid other than to relieve their thirst, then ultimately they will die in something like 28 days as a maximum.

  Q398  Baroness Hayman: Can I ask what the empirical evidence is—I of course respect the number of cases that you have seen yourself—that the differential in time people take to die, as you have just described, is related to the fact that they are waiting for something?

  Dr George: I would refer you to my paper of 2001, in which we looked at a whole series of situations. If you look at the data on patients who have stopped food and fluids or who have stopped renal dialysis, for example, the lead-in time is a maximum of 28 days. If you look at the studies on the effect of food and fluids withdrawal from patients, then it seems to be that the cut-off of significant influence is round about one month. There is a fairly large body of data showing that.

  Q399  Baroness Hayman: No; it was not quite that. It was what you were saying about some people taking longer to die than other people because they are waiting for an anniversary, which seems to suggest that there might be some hope in that reasoning.

  Dr George: There is evidence in the literature showing this. Is that the answer you wanted?

previous page contents next page

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

© Parliamentary copyright 2005