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

Examination of Witnesses (Questions 20 - 27)



  Q20  Lord McColl of Dulwich: I was interested to hear that there was a proposal to modify Lord Joffe's Bill as far as protecting doctors and nurses who may not wish to be involved in this process. I was also interested to read that that part of his Bill is exactly the same, word for word, as in the Abortion Act 1967. Bearing in mind that at least two Professors of Obstetrics in the UK had their lives made a living hell simply because they insisted on doing abortions "within the law"—that was their only crime—not to mention hundreds of midwives and budding obstetricians, who had to emigrate for the same reason, how confident are you that the same thing will not occur with this Bill?

  Miss Annetts: If I may start by answering that and perhaps then pass it on to my colleagues? That certainly has not been the case in The Netherlands or in Oregon, where the doctors may decide, for conscientious objection reasons, not to assist the patient. So, again, drawing on that evidence, I would hope that that would not happen in the UK. The crux of this is about finding that partnership between the patient and the doctor, finding the balance in relation to autonomy between these two parties. I think it is very important that, in the same way that we are asking for respect for the wishes of somebody who is dying, who is suffering unbearably, that respect goes the other way, from the patient to the doctor, for example, if the doctor feels that they cannot assist for conscientious objection reasons.

  Professor Harris: The issue of how we protect our citizens who act in good faith out of conscience is an important one—it arises in animal experimentation, it arises on the other side of the abortion debate as well—and of course we have a responsibility to protect people in the appropriate exercise of their conscience, and we should see that that is done.

  Lord McColl of Dulwich: My point is that the wording in the two Bills is identical. It did not work with the Abortion Bill, whatever one may feel about abortion, and I am asking what is the basis of your confidence that it is going to work for this Bill?

  Lord Joffe: May I intercede there, my Lord Chairman, because it is my intention to amend the Bill so that it is not obligatory for a doctor who, on conscientious grounds, refuses to assist the patient to die. The Bill will be changed. The reason for this is that the Human Rights sub-committee, when they considered this particular provision, came to the conclusion that it was probably contrary to the European Convention of Human Rights to place that obligation on doctors. So I was intending formally to bring this to the Committee's attention when I presented the Bill to the Committee next week.

  Q21  Chairman: I would like to ask about the research that you referred to, Miss Annetts, into the attitudes and the problems associated with the provisions of this Bill. Would you be able to give us in documentary form the results of that analysis? It must be quite extensive and I think it might save us from having to do some of the work. Obviously we would want to look at it in a certain amount of detail.

  Miss Annetts: Absolutely, yes.

  Q22  Chairman: The second point I wanted to ask you about, you mentioned the situation in The Netherlands in which a person in a terminal illness situation was afraid that matters would get worse and therefore wanted something akin to an insurance: in other words, to have the necessary prescription at hand, not to use immediately but to use if their fears were realised, that matters had got worse. Is that a situation for which you think provision ought to be made?

  Miss Annetts: I think it is one of the unforeseen benefits of the legislation. I think this particular piece of research comes from Oregon. When the Bill was passed, one of the guiding factors was autonomy and giving terminally ill people the right to an assisted death if that is what they wanted. But an unforeseen benefit of that has been that terminally ill people have found it a tremendous reassurance to them during the last few months of their life. So that the take-up rate for prescriptions is higher than the number of people who use this particular option at the end. Again, research from Oregon has found that patients find it very reassuring that, if things get too bad, they have a way out, and that is particularly apparent in some of the Motor Neurone Disease cases that my colleagues have been looking at.

  Q23  Chairman: As far as that aspect is concerned, you were asked earlier about why a physician needs to be involved and the possibility of it being opened more widely than that. I think you indicated that the link with the physician was very important. Is there any particular reason why that kind of request could not be made to a pharmacist and then the insurance policy, as it were, was at hand, assuming the patient was able, himself or herself, to make use of the prescription once it was there? One envisages that there may be difficulties in that situation. One could see, for example, in Mr Barclay's evidence, a development in which that became no longer possible. Is that not an area in which some question might arise about who should be involved in this?

  Miss Annetts: I do not think that there is a clear-cut answer in terms of this issue, and certainly Switzerland has taken a slightly different approach. However, it is fair to say that over 50 per cent of doctors in the UK believe that in certain circumstances a terminally ill person should be allowed medical help to die. I think that is an important point. Not all doctors are against this. Secondly, one of my concerns would be regulation, and this Bill is about regulation, it is about regulating a current medical practice. I think that is one of the important reasons why the doctor needs to be involved to the extent that they have been in the Bill. I am not sure that we would feel comfortable with passing this across to a pharmacist, particularly since Professor McLean has talked about the therapeutic relationship between doctor and patient at the end of life, which is very, very important to the dying patient.

  Dr Harris: I agree. I see no good reason why the medical profession should be allowed to opt out of this entirely, because respect for patient autonomy around end of life decisions including, as I have said many times, a refusal of treatment is in fact probably one of the most essential parts of the doctor/patient relationship, and it would seem to me to be artificial to take this and transplant it out of the doctor/patient relationship, and there would have to be very good reasons to do that. I cannot see those reasons and, as I say, I cannot agree with doctors' leaders who claim that patient autonomy is not really the main issue here, because there are other duties that the doctors have. Respect for patient autonomy has always been, in my view, and is increasingly being seen, as central to the duty of the doctor, and that is why it is such a critical part. Of course the death of the patient is a key part of their illness, sadly, and inevitably, and therefore I do not understand why doctors should seek to be removed from it.

  Q24  Chairman: I want to follow that up a little. If this Bill became law in its present form, would there be protection for a pharmacist who knowingly provided a prescription that would lead to the suicide effectively of the patient?

  Miss Annetts: There are provisions to that effect, provided that all the other safeguards have been followed through, with the involvement of the physician.

  Baroness Hayman: My Lord Chairman, apologies for not coming in earlier, but may I follow up one remark that Miss Annetts made?

  Chairman: Yes, please.

  Q25  Baroness Hayman: Could you tell me a little more about this evidence about how the unexpected benefit came about and was assessed, because one could also envisage unexpected dis-benefits in this situation? In this country we have stopped allowing people to buy large quantities of Paracetamol because of opportunistic suicide bids and, as I understand, that has been very beneficial in terms of teenagers who shot their livers to pieces. There is the possibility (and certainly echoed in some of the evidence that we have had) of personal experience of people who talk about being in despair and then, at a certain point in the terminal illness, receiving the appropriate care and having what is called a "good death" at the end of it, which could be an option taken away if people cash in their insurance policy too early. It is very difficult to evaluate that one, but do you have any sense or response about that?

  Miss Annetts: There have been a number of investigations carried out by Oregon Health Sciences University and Oregon Department of Human Services, often led by Dr Linda Ganzini, who is herself a psychiatrist, and takes no position in relation to the Oregon legislation, and it was she who started to uncover this unseen benefit of the insurance policy[6] . But I think there are other aspects as well which need to be considered, which again come from Oregon. Largely, that once the prohibition of medical assistance to die has been removed there can be a fuller and more meaningful discussion between the physician and the doctor at the end of life. The patient can raise all of their concerns, nothing is off limits; all of those concerns can then be addressed and the best solution found for that particular patient. In many circumstances that would be palliative care. At the moment we have a prohibition, which means that, if a patient actually starts talking about medical assistance to die, then that immediately triggers concerns and difficulties for the medical team and the nursing team as well, and I have heard that from talking to many professional people working in this field. What do they do with that request, because they are immediately edging into the Suicide Act? Once you put in place Lord Joffe's Bill, it is much easier to have that full discussion and to put the patient perhaps in the right area for their needs to be met fully, and many of those patients will be feeling despair and despondency. Again, once you have a system of regulation, you can take the patient through the prognosis, the diagnosis and palliative care. The palliative care specialist will be required to attend and to talk to the patient about all these different aspects and how they can be best helped. So I suspect you would see better end of life care and, again, that is something coming through from Oregon and The Netherlands. Once you regulate in this area, doctors start considering end of life care in a slightly different way, which means that everybody ends up with a better standard of care at the end of life[7].

  Q26  Lord McColl of Dulwich: Can I go back to this business that the doctor should be expected to take part in this as part of his job? Your thinking, of course, is from the point of view of the patient. There is another side, which is illustrated by the man who witnessed his mother having euthanasia, and it was done by an anaesthetist who came in and said to the lady, "I am going to put a little needle into your arm, it will not hurt, it will be quite painless and you will go off to sleep and everything will be fine." A month later the man was involved in a serious accident, was taken to the hospital and had to have an emergency operation. You can imagine his horror when the same anaesthetist came into the room and said to him, "I am going to put a little needle into your arm, it will not hurt, it will be quite painless and you will go off to sleep and everything will be fine." So there is another side to this too.

  Dr Harris: For that anecdote there are presumably also other alternative anecdotes out there of people who see a doctor who is actually helpful to their loved one in easing their suffering at their request and respecting their view and, indeed, therefore, that would make that family have more faith in that general practitioner or that consultant, whereas at the moment there is the despair. There is the case of Dianne Pretty, for example, and her family, that the doctors could not help. So there are two sides to those experiences which will be personal.

  Professor McLean: You did not actually mention in the example whether or not the lady in question had asked for assistance in dying.

  Q27  Lord McColl of Dulwich: Yes, of course she had. That is not the point I am making. I am saying that there is a question of confidence among the general population.

  Professor McLean: I appreciate that, but my point is that I am unclear why the young man in question, or the middle-aged man in question, would have been so concerned if in fact his mother asked the anaesthetist to do that and he understood that the anaesthetist only did that on the basis of a competent autonomous request.

  Lord McColl of Dulwich: But we are all human and the man was just very worried, and I am saying that there are a number of other people who might be worried under similar circumstances.

  Chairman: I think that we have managed to finish this session with everyone having had the opportunity they wished to ask questions. Thank you all very much indeed for coming and giving us your evidence. As I said at the outset, a draft statement of what you have said will be circulated for you to get a chance to see whether they are as good as you thought they were, without of course altering the substance, only to correct anything that appears to be a mistake in the transcription. Thank you all very much and I look forward to receiving the account of the researches that you mentioned earlier into the attitudes of people in relation to the problems that we have faced in this Bill.

6   Note by witness: The view that the Oregon Death with Dignity Act can act as an "insurance policy" has been noted by commentators such as Dr Timothy Quill and Professor Margaret Battin. Back

7   Note by witness: Bascom and Tolle (2002), Goye et al (2003) and Dobscha et al (2004). Back

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