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


Examination of Witnesses (Questions 70 - 79)

THURSDAY 16 SEPTEMBER 2004

The Lord Joffe

  Q70  Chairman:  The purpose of this public session is to enable Lord Joffe, as the proposer of the Bill, to briefly explain its terms and then to give the members of the committee a chance to explore these terms in such detail as they think necessary. The precise terms of the Bill will be what ultimately become law, assuming the Bill was passed into law without any further amendment. Therefore, it is extremely important to know exactly how it would work and what the different provisions of the Bill are intended to achieve. Evidence will be taken, a record of the evidence will be available and it will be, as usual, subject to correction by the witness in so far as the transcript does not appear to represent exactly what he thought he had said.

Lord Joffe: Thank you, Lord Chairman. I appreciate the opportunity to give evidence in relation to the Bill which I introduced. I will begin by outlining the background to the Bill in its present form and its purpose, and then go on to deal with the detailed provisions. My starting point is to draw attention to the recommendation of the Select Committee on Medical Ethics in 1993-94. That was part of a much wider consideration of end-of-life decisions and, amongst other issues, it advised against a change to the law criminalising voluntary euthanasia. Since then, as the Liaison Committee has pointed out, and I quote, "other countries have introduced legislation and public opinion in the United Kingdom has become more engaged in the issue". In addition to the legislation in The Netherlands, in Belgium and Oregon, motions proposing a change in the law are awaiting debate in the French Assembly, and the new Spanish Government included a commitment to change their law in their 2004 electoral programme. It is now widely recognised that palliative care, of which the Bill is totally supportive, is not the answer for a number of terminally ill patients who, suffering terribly, wish to bring their suffering to an end by being assisted to die with dignity at a time of their choosing. The purpose of the Bill is to change the law in order to allow such patients to have this option alongside—and I emphasise alongside—all the other lawfully available end-of-life options. The Bill is based on the principle of personal autonomy and patient choice, the right of each individual to decide for themselves how best he or she should lead their lives. The Bill recognises that in the exercise of personal autonomy vulnerable people should not be put at risk, and accordingly it contains an array of safeguards to protect people who could be vulnerable.

  I now briefly touch upon how the Bill reached its present form. It started last year as the Patient (Assisted Dying) Bill, which I will henceforth refer to as "the previous Bill", which was introduced on 20 February 2003 and which had its Second Reading on Friday 6 June of last year. At that reading, which was attended by approximately 100 peers—on a Friday, I might add—39 peers took part in the debate and roughly equal numbers spoke in favour for and against the Bill. In accordance with the usual convention, the Second Reading was not opposed. However, following upon a proposal by Baroness Jay, the House agreed to the appointment of a Select Committee to consider the Bill and the Bill itself lapsed in November last year at the end of the session. On 8 January of this year, the current Bill, which is entitled the Assisted Dying for the Terminally Ill Bill, and which I will henceforth refer to as "the Bill", was introduced. It contained three substantive changes from the previous Bill in response to concerns expressed at its Second Reading. Firstly, whereas the previous Bill applied to all competent adults who are suffering from a terminal or a serious and progressive physical illness, the Bill is now limited to terminally ill patients only. Secondly, responding to the reluctance of some physicians to directly bring an end to their patient's life, the attending physician may only provide the patient with the means to end the patient's life, the obligation being, or rather the option being, for the patient to decide whether to take these drugs or not as he or she chooses. The only exception to this is where the patient is physically unable to take the medication, in which event, as in the case of Diane Pretty who suffered from Motor Neurone Disease, the physician can actively end the patient's life. Thirdly, in response to concerns about patients not being fully informed about the benefit of palliative care, there is now a requirement for a palliative care specialist to see the patient. This provision illustrates the importance the Bill attaches to palliative care. We would think that palliative care is the first option and assisted dying would normally be the last resort option. The Bill had its Second Reading on 10 March of this year and, with a view to avoiding repeating the speeches made at the Second Reading of the previous Bill last year, it was agreed by opponents of the Bill that they would not oppose the Second Reading on the clear understanding that their decision was made solely for the convenience of the House and it was in no way to be considered as an endorsement of the Bill. The Bill was then read a second time and committed to this Select Committee.

  Since then, two further important amendments are proposed to the Bill, as will appear from the Notice of Amendment to be moved in committee, which you will find in the plastic folder in front of you. There are a number of amendments but only two of real significance. The amendments are endorsed on the copy of the Bill in the plastic folder. I do recognise that some members of the Committee may have marked up their existing copy of the Bill but I do not think in practice this will cause any real problems because the amendments are very limited. The first amendment is the deletion of Scotland from the Bill. I have been advised that the issues contained in the Bill are devolved to the Scottish Parliament and I understand that a motion for debate in that Parliament to consider changing their law was moved last week. The second amendment removed the obligation upon physicians who had a conscientious objection to the Bill to refer patients who ask for assistance to die to a physician who is willing to provide this assistance. This amendment is necessary because the Joint Select Committee on Human Rights in its Twelfth Report this year was of the opinion that while, and I quote, "the safeguards in the current Bill would be adequate to protect the interests and rights of vulnerable patients", the existing requirement on conscientious objectors contravenes the provisions of the European Convention on Human Rights. In addition, there are a number of consequential amendments, such as replacing the words "Great Britain" with "England and Wales" and introducing a greater consistency in the terms used in the Bill.

  Before I turn to the Bill itself, I would like to underline the following. The Bill is based on the principle of personal autonomy, and central to it are the following. It applies only to terminally ill, competent adults who are suffering unbearably; it does not apply to children and it does not apply to patients who are mentally incompetent. It is very limited generally in its application. Secondly, it is the patient who must initiate the request for assistance to die, not the physician, and no physician or other member of the medical team is entitled to assist the patient to die without the patient having initiated the request and all the safeguards contained in the Bill having been complied with. I emphasise this to the members of the Committee because, among the large number of letters that I have received opposing the Bill, there is total confusion as to what the Bill really provides. Many of my letter-writers also think that the Bill is the same as the Mental Capacity Bill, which has been introduced in the House and has gone to another place. Thirdly, it is the patient who must make an informed decision to die, which he can revoke at any time. The role of the physician is limited to ensuring that the safeguards and processes set in the Bill are complied with; it is not for the physician to decide whether the patient has made a wise or unwise decision nor to decide on the patient's best interests or quality of life. Again, there is a considerable misapprehension in the letters I have received, whose writers think that the physician can unilaterally kill the patient. It is nothing of the sort. In drafting the Bill, careful attention has been given to the legislation and experience in Oregon in particular and The Netherlands and Belgium. The result is that the Bill is considerably more restrictive and has more safeguards than any such legislation. It also contains many more safeguards than other end-of-life practices which hasten death in the United Kingdom, such as the withholding and withdrawal of life-prolonging treatment.

  I now turn to the detailed provisions of the Bill. Could I start on page 1 of the Bill, without looking at the first page? The preamble sets out what I think I have mentioned. Again, it enables a competent adult who is suffering unbearably as a result of terminal illness to request medical assistance to die at his own considered and persistent request. Then there is a further important issue raised in the Bill and that is to make provision for a person suffering from a terminal illness to receive pain relief medication. It has been suggested that there is no connection between these two issues: assisted dying and pain relief medication. I will submit that they are related and it is natural to include them in the same Bill. If we then go to section 1(1), that empowers the physician to assist a patient who has made a declaration that he wishes to die, provided that all the safeguards have been complied with. When we get to the definition section I want to draw attention to a number of issues that might possibly be missed. "Assisted dying" is clear as is "attending physician" as well as competent. But then, when you get to "consulting physician", we say it means a consulting physician practising in the National Health Service. We have deliberately included that because we do not want a private practice to build up in relation to assisted dying, where one or other consultant actually makes this the main service that they offer patients. As one of the many safeguards in the Bill, we have included the requirement for the consultant to practise in the National Health Service. There is another point in the same definition which again is a further safeguard; we require the consulting physician to be independent of the attending physician. That is in the last line of this definition. Again, this is because we do not want partnerships to be developed in terms of which the attending physician has an ongoing relationship with the particular consultant to whom all patients are passed. The declaration is clear and must be witnessed.

  Then I come to what is really the key, the informed decision. Here we repeat in the Bill all the factors which have to be taken into account by both the doctor and the patient before proceeding. We will come to these subsequently in the rest of the Bill but the important point is that these all are defined as part of the informed decision which the patient is required to make. Moving down from what are self-evident definitions, we get to the "qualifying patient" and that means a patient who has reached the age of majority—which I have mentioned before—and we add "who has been resident in England and Wales for not less than 12 months as at the date of the declaration". Again, this is to stop tourists coming to the United Kingdom to avail themselves of this facility. We then define "terminal illness", which has been very carefully defined and which effectively is that the opinion of the consulting physician is that the patient's death is likely, not certain but likely, to take place within a few months at most. We then move on to "unbearable suffering". Firstly, that means "suffering whether by reason of pain or otherwise". We think, and much of the evidence elsewhere suggests, that existential suffering is actually a far greater issue than pain control. If the physician attending the patient is competent, that can normally be controlled, although not always. We make this definition. It is not an objective test. It is not a test of what the average of all people would consider to be unbearable suffering. It is very clearly defined as a subjective test, and so the wording is "which the patient finds so severe as to be unacceptable". That is actually the key to this test. It is not what a doctor might say is the norm; it is that particular patient's suffering which is the subject matter of his decision. Then we have a "waiting period". There has been some confusion, and I will clear that up in relation to the waiting period. It is 14 days from the time when the patient first informed the attending physician that the patient wishes to be assisted to die. It is not 14 days from the date on which the declaration is made. We thought very carefully about this provision. We are concerned that, if there were so many steps, and we have already included a surprising number of safeguards, the patients will all have died before we get through them.

  I next refer to the qualifying conditions, which are key to the whole administration and implementation of the Bill. The attending physician must have examined the patient and the patient's medical records, and that is sub-section (b). That reference to the patient's medical records is very important because there will be a lot of information there which it is important for the attending physician to consider. He has to make a determination that the patient has a terminal illness at (c) and at (d) that the patient is suffering unbearably as a result of that terminal illness. Then we have to go on to a number of issues which must be raised with the patient. He has to inform him of the diagnosis, the prognosis, the process of being assisted to die and of the alternatives, including, but not limited to, palliative care, care in a hospice and the control of pain—all of these and any others. It is only then, if a patient persists with his request, that he or she is referred to the consulting physician. The consulting physician has to go through the same process as the attending physician all over again. This provision is somewhat unusual in the NHS and in most areas of end of life decisions, but we require a "consulting physician" as well. Then, at the end of that process, if he is satisfied that the patient has complied, that the patient has thought about everything and he is able to make an informed decision, he asks him if he would like to complete a written declaration. He tells the patient that it can be revoked at any time. Then we get to clause 3, which is this offer of palliative care, which is unique when compared to the countries in which assisted dying is permitted. It was, in fact, recommended in Belgium but not accepted by the legislators. Under this offer, the attending physician has to ensure that a specialist in palliative care, who could either be a physician or a nurse, has attended the patient to discuss the option of palliative care. We then move on to the declaration. The declaration is described in 4(1) and it can only be completed after all these other processes—two consultations, an offer of palliative care and, as I will touch on later, if there is any doubt about competence—that the patient is referred to a psychiatrist. After all this has happened, a written declaration can be made in the form set out in the annex to the Bill. This declaration has to be witnessed by a solicitor to whom it must appear that the patient is of sound mind and that he has made the declaration voluntarily and the solicitor has, in subclause 2 (3)(c), to satisfy himself that the patient understands the effect of the declaration. An independent witness is referred to in (4), and it must also appear to him that the patient is of sound mind and has made the declaration voluntarily. They should have to sign this document, this declaration, in the presence of each other. Then there are exclusions, again as part of the precautions and safeguards, of individuals who are not allowed to sign as witnesses, including anyone who has a financial interest in it or who can benefit from it. Then, after all this, under clause 5, the attending physician comes to the stage where he or she has to attend the patient for the purpose of ending their life. In all cases the physician, after informing the patient of his right to revoke the declaration and verifying that the declaration is in force and that it has not been revoked by the patient, will ask the patient immediately before assisting him whether he wishes to revoke the declaration. It the answer is "no", the attending physician will produce the prescription which will prescribe the drugs which the patient will ultimately take, and this will be taken to the pharmacist and the pharmacist in due course will produce the drugs, which will be provided to the patient to be taken or not to be taken at his or her option. The timing is very important. The timing, if the patient decides to go ahead, will be at the patient's option and it will be his decision as to when and who will be there. In the case of someone like Diane Pretty who suffered from Motor Neurone Disease, the doctor will be allowed directly to administer the appropriate drugs to assist that patient to die. Clause 6 just deals with the revocation of the declaration and ensures that a note is made recording its recommendation, that the declaration is removed from the patient's medical file and destroyed. There is then the question, under clause 7, of conscientious objection. As it now reads, or will read if the amendments which I have proposed actually are passed, it will state specifically that any member of the medical care team and any of the physicians involved can distance themselves from the process if they have a conscientious objection to it. There is no requirement on them any longer to refer the patient to another physician who might be willing to assist. This deals with what I think was a constant concern of many commentators about the Bill, and I think it is right that if a physician has a conscientious objection, he or she should be entitled to withdraw completely. This, of course, applies not only to the physician but to the whole medical team, including the nurses and social workers and everybody involved. Clause 8 deals with the position of psychiatric referrals, to which I have referred. If any of the physicians have any doubts about the patient's mental competence, those doubts must be referred to a psychiatrist who will have to satisfy himself that the patient is competent in order for the process to continue. Clause 9 deals with the notification of next of kin. It says that the attending physician shall recommend to the patient that he or she notifies their next of kin of the request for assistance to die, but it does not require the patient to do this. That again is a considered decision and comes directly from the key principle underpinning the Bill of personal autonomy. It is the patient always who must decide what is in his best interests, not his family, although I am sure that the great majority of patients would wish to consult their family. Certainly, the evidence that we have received suggests that their families, far from encouraging them to be assisted to die, will try to get them to prolong their lives for as long as possible. Clause 10 deals with the protection of physicians and other medical personnel. In addition to protecting them from the consequences of the existing law, it also provides, under (3), that they will be deemed not to be in breach of any professional oath or affirmation. Sub-Clause (4) is yet a further safeguard. It disqualifies the physician or any member of the medical care team from taking any part in assisting the patient to die if they have grounds for believing that they will benefit financially or in any other way as a result of the death of the patient. Again, that is a safeguard to make sure that no physician or member of the team has any inducement at all to assist in the process. Clause 11 deals with the offences. Sub-Clause (1) is where some person wilfully falsifies or forges a declaration with the intent or effect of causing the patient's death. This seems to be equivalent to murder, or homicide, and the provision is that the person would be guilty of an offence under this subsection and liable on conviction on indictment to imprisonment for life or whatever shorter term the court provides. In the further three subsections, which deal with a range of possible offences, which I do not think it would be particularly helpful for me to comment upon, the person committing the offence is liable on conviction to up to five years' imprisonment. We then move on to section 10, which is insurance. In order to ensure that no policy of insurance is invalidated which has been in force for 12 months, we have put in this provision that the insurance will remain in place after it has been in force for 12 months. Clause 13 deals with all the documentation, which has to be very carefully provided and retained so that the attending physician can send a full copy of the file to the monitoring commission within seven days of the patient having been assisted to die. The monitoring commission is set up under clause 14 and consists of a registered medical practitioner, a legal practitioner and a lay person having first-hand knowledge or experience in caring for a person with a terminal illness. The intention of the lay person is that such a person would have an understanding of how patients react on a day-to-day, hour-to-hour, even minute-to-minute basis. If the monitoring commission is of the view that the necessary safeguards and processes have not been followed, it will refer the matter to the district coroner. If it is in order and they are satisfied that all the conditions have been complied with, they will advise the attending physician of that fact. I now move on to section 15, which needs a little clarification. It relates to the administration of drugs to patients suffering severe distress and provides that a patient suffering from a terminal illness shall be entitled to request and receive such medication as may be necessary to keep him free, as far as possible, from pain and distress. I have been surprised at the opposition by much of the medical profession to this particular clause. The reason for its insertion and inclusion is that there is clear evidence that many patients do not get sufficient pain relief perhaps for any one of a number of reasons. Research published by CancerBACUP this year[1] demonstrates that a large number of patients are not even consulted about their pain relief. Research from the Nuffield Trust last year found that a considerable number of patients actually suffered unnecessary pain which could have been prevented. There is a range of other research elsewhere which supports this. Of course anecdotal evidence from any number of people with whom I and others have spoken always refers to the terrible death of somebody they have known or who was close to them who suffered terribly. Finally, in relation to this clause, there is the view of a very well-known antagonist of assisting the dying by the name of John Keôwn, who has written extensively on the subject. His concern is that the case of Rex v Woollin has undermined the double-effect principle, which is so key to palliative care, and that doctors will feel at risk, if the principle of palliative care has been adversely affected by this particular judgment of the Appeal Court. There is a further factor which is also very relevant to this clause and that is that it is clear that there are a number of doctors who are concerned about using the double-effect principle in order to ease the pain of their patients because they are frightened that they may be prosecuted; there might also be a question of religious belief. The principle of course, as is known to the Committee, is that if a doctor prescribes medication which he believes could hasten the patient's death, this is not in any way an offence if his intention was to relieve pain. One of the further issues which concerns many medical practitioners, and which was the subject of a doctors' survey, is that new legislation is being proposed in relation to the role of the coroner. As the presiding chair of I think it was the Shipman Inquiry said, coroners must start to "think dirty", and that means to be suspicious of all the cases where somebody has died if in any way it could be suggested that their death had been foreseen. We move on to Clause 16, to the usual power of the Secretary of State to make orders or regulations. There we have replaced the wording which we originally had in the Bill, which I do not feel was appropriate, with what we believe to be the standard rights of the Secretary of State. The Bill then provides for the schedule which incorporates all the safeguards which I have mentioned and which has to be signed by the patient when he has finally made his decision to ask for assistance to die, even if he subsequently withdraws that request. In addition to the Bill, there will naturally be regulations by the Secretary of State. Additionally, it is good practice for the BMA and/or the General Medical Council to prepare detailed guidelines along the lines of those they prepared in relation to the withholding and withdrawing of life-prolonging treatments. I believe that this Bill is a deeply humane piece of legislation which will protect patients as well as their physicians and families and, for the first time, will regulate assisted dying which already takes place in England and Wales. As I reflect on the suffering of these patients and their families, which is so graphically described in the three typical letters included in your plastic folder which has not yet been distributed by the Clerk to the Committee, it is my belief that in our caring society we can no longer ignore the suffering of vulnerable people like Diane Pretty and brush away their pleas to end their suffering with the uncaring message that they must simply continue to suffer in order to protect others. Thank you,

  Chairman: Thank you, Lord Joffe.

  Q71  Lord Carlile of Berriew: Lord Joffe, I am sure everyone would agree that you have given us a very valuable outline of the Bill. Might I start at the beginning? What you set out in the Bill seems to me to be an evidential process followed by, much more briefly, an assisting process. Would you agree with that?

  Lord Joffe: I would agree with that, yes.

  Q72  Lord Carlile of Berriew: Why is it that the decision-making on the evidential process is placed in the hands of the medical profession as opposed to somebody who is more accustomed to making crucial decisions in relation to what may be evidentially difficult matters, such as a judge or a coroner?

  Lord Joffe: I think basically the underlying approach to the Bill has been that doctors are in a close relationship with their patients. They know their patients, particularly if they are general practitioners, and it is particularly appropriate for them to discuss these issues in a non-aggressive, caring way with patients whose lives, in the main, they would wish to prolong rather than to end. This is the underlying principle, and doctors are particularly well equipped to form a view on issues like diagnosis and prognosis and many of the other issues which they need to address.

  Q73  Lord Carlile of Berriew: Given that the consequence of this process is the ending of a human life, do you not feel that it would ensure much greater public confidence, if your Bill is enacted in principle, were the actual decision to be taken by somebody who is far removed from the patient, on the basis, hopefully, of cogent evidence beyond reasonable doubt?

  Lord Joffe: I do not think this is a case where we are talking about evidence beyond a reasonable doubt. What we are talking about is the exercise of the patient's autonomy. This is the underlying principle. We are looking for a patient to make an informed decision, not anyone else, and the doctor simply to be satisfied that all the processes have been complied with.

  Q74  Lord Carlile of Berriew: Given your lack of confidence in the private medical profession to carry out this regime satisfactorily, what is the foundation for your greater confidence in practitioners in the NHS?

  Lord Joffe: It is not a question of not having confidence in doctors practising privately. In fact, as you and the Committee will well know, a great many consultants who practise in the NHS actually have a private practice as well. What we are seeking to do is to ensure—and it is just one of a number of safeguards that I would be quite happy to take out if you felt that was necessary—is an added precaution that we should not have individual consultants who specialise in assisting patients to die.

  Q75  Lord Carlile of Berriew: What proportion of unlawful killings by doctors in the last 10 years has taken place in the private sector and the NHS respectively? Is it not the case that the vast majority has taken place in the National Health Service and that there are very few cases which have been before the General Medical Council where gross negligence by doctors and unlawful killing has taken place in the private sector?

  Lord Joffe: I think if there is total confidence in the private sector, I would be very happy to amend the Bill.

  Q76  Lord Carlile of Berriew: But that is not your starting point? You told us with force, if I may say so, that you thought it was inappropriate for this to occur in the private sector. The point I would like to put to you is that there is very little evidence that one could have total confidence in either sector and that there is a danger of mavericks operating in this field, both in the NHS and anywhere else, even in British medicine, is there not?

  Lord Joffe: There are always the occasional mavericks operating everywhere and in every field of law; people can murder other people. There are always maverick people out of step with society. I accept that. I am not sure what the point is that you are making.

  Q77  Lord Carlile of Berriew: Like Dr Shipman, they find their niche, do they not?

  Lord Joffe: No. Dr Shipman might have found his niche but the point about it is that he found his niche under the existing law. In my view, it is highly likely if this Bill had been in force that he would have been found out earlier and, what is more, the last thing that Dr Shipman would have wanted to do was to call in another GP, a palliative care consultant and a solicitor before, sadly, he killed his patient.

  Q78  Lord Carlile of Berriew: I have two further questions, if I may, at this stage, and one relates to a solicitor. The question before that relates again to the NHS. If this procedure were to be carried out in the NHS, then presumably in many cases it would be carried out in an NHS hospital, which is under the direction of an NHS health care trust. If an NHS health care trust is unable to agree that this procedure should be carried out in their trust area, as seems very possible for a great many NHS health care trusts, is it your view that they should be forced to agree to carry out this procedure as part of their NHS responsibility? If so, what protection does that give to directors of NHS trusts?

  Lord Joffe: I think that is a very valid point which needs to be considered and looked into[2].


  Q79  Lord Carlile of Berriew: Have you not considered it?

  Lord Joffe: No, I have not considered it.


1   Note by Witness. This research was, in fact, published in 2001. Back

2   Note by Witness. In Oregon 94% of patients who have an assisted death die at home: only 1% die in hospital. Back


 
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