Select Committee on Assisted Dying for the Terminally Ill Bill First Report


19.  This chapter sets out the detailed provisions of the ADTI Bill, drawing on the text of the Bill itself and on Lord Joffe's own comments on the Bill in the course of the oral evidence which he gave to us on 16 September 2004.

The Bill in Outline

20.  The text of the Bill is at Appendix 4. Briefly, the Bill provides for a competent and terminally-ill person who has reached the age of majority and who is suffering unbearably to request either assisted suicide or voluntary euthanasia. It sets out the procedures to be followed in the event that such a request should be made, including an assessment by an attending physician that the patient's condition is such that he or she is likely to die of natural causes within a few months at most, that the patient is competent to make the request and that he or she is suffering unbearably. Given such an assessment and its confirmation by a consulting physician, the Bill provides for the requesting patient to sign a written declaration of intent and, if this has not been revoked within 14 days of the date on which the request was first made, to receive either the means to take his or her own life or, if the patient is physically unable to do that, to have his or her life ended through voluntary euthanasia.

21.  The Bill provides a number of safeguards both for patients and for medical staff. These include the need for declarations to be independently witnessed, for patients requesting assisted suicide or voluntary euthanasia to have the opportunity to discuss the option of palliative care, for ex post facto examination of all deaths from this means by a monitoring commission, for doctors with a conscientious objection to be able to refer a requesting patient to another practitioner and for medical staff who comply with the terms of the Bill to be immune from both prosecution and breach of any professional oath or affirmation. The Bill also provides for terminally-ill patients to request and receive such pain-relief as they need to control the symptoms of their illness.

The Bill in More Detail

22.  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" (Q 70). For this reason the Bill applies only to competent patients. In Lord Joffe's words, "only a competent patient can make a decision in relation to his or her own life. For people who are mentally incompetent there needs to be, perhaps, a different system, but it cannot be based…on personal autonomy" (Q 108). The Bill does not require positive evidence of competence, simply that the attending physician shall "have no reason to believe that the patient is incompetent"[10]. The only requirement for proof of competence comes in Clause 8 of the Bill, which provides that, "if in the opinion of either the attending or the consulting physician a patient who wishes to make or has made a declaration may not be competent, the attending physician shall refer the patient to a psychiatrist for a psychiatric opinion" and that "no assistance to end that patient's life may be given unless the psychiatrist has determined that the patient is not suffering from a psychiatric or psychological disorder causing impaired judgement, and that the patient is competent"[11].

23.  Clause 8 suggests however that there could be a distinction to be drawn between incompetence, which is defined in the Bill as "not having the capacity to make an informed decision"[12], and psychiatric or psychological disorder (for example, depression), which might be temporary and treatable. This distinction was exposed in the course of oral evidence, when Lord Joffe expressed the view that "the key to it is really competence to make the particular very serious decision which has to be made, and we might not need anything about psychiatric illnesses, which I think muddies the position" (Q 151). Lord Joffe accepted however that this issue merited further exploration in the light of medical advice.

24.  The Bill sets out[13] the actions which must have been completed before a patient can make a declaration that he or she wishes either assisted suicide or voluntary euthanasia. The Bill makes clear[14] that the request must originate from the patient. In oral evidence to us Lord Joffe's stated that, "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" (Q 70). Lord Joffe speculated subsequently(Q 131) that, in circumstances where a patient is suffering unbearably towards the end of his or her life and has not raised the subject, there might be a duty on the doctor to raise it as one of the available options, though he has since proposed an amendment designed to make clear that there should be no such duty. However, nothing in the Bill as it stands prohibits a doctor or nurse suggesting assisted suicide or voluntary euthanasia to a patient.

25.  The Bill itself does not define precisely at which point a patient could be deemed to have made a request. In his oral evidence Lord Joffe recognized (Q 140) that some requests to die might not be seriously intended but might be rather a cry for help and that the Bill should be amended in such a way as to make clear that it is a formal request which would start the processes laid down in the Bill and that such a request should be made in writing and should be signed by the patient. Lord Joffe has proposed an amendment to cater for the situation where a patient cannot write.

26.  The attending physician must decide that the patient is suffering from a terminal illness, which is defined in Clause 1 of the Bill as an illness which "is inevitably progressive, the effects of which cannot be reversed by treatment (although treatment may be successful in relieving symptoms temporarily) and which will be likely to result in the patient's death within a few months at most". The attending physician must also have concluded that the requesting patient "is suffering unbearably as a result of that terminal illness". Clause 1 defines "unbearable suffering" as "suffering whether by reason of pain or otherwise which the patient finds so severe as to be unacceptable". It is clear from this, and from Lord Joffe's evidence to the committee, that the definition of "unbearable suffering" is intended to be subjective—in Lord Joffe's words, "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"
(Q 70). Lord Joffe does, however, add a proviso (Q 142)—that the doctor must assess "whether it is reasonable for the patient to have come to that conclusion". And, as Clause 1 makes clear, "unbearable suffering" might encompass suffering other than as the result of physical pain—what has been termed "existential suffering" (Q 70), including feelings of loss of dignity or self-worth—but does not include loss of competence resulting from suffering.

27.  The requesting patient must be informed by the attending physician of his or her medical diagnosis, of the prognosis of the disease, of the process of assisted suicide or voluntary euthanasia and of the alternatives, "including, but not limited to, palliative care, care in a hospice and the control of pain"[15]. Clause 3 of the Bill places on the attending physician an obligation to ensure that "a specialist in palliative care who shall be a physician or a nurse has attended the patient to discuss the option of palliative care"[16]. Lord Joffe has made clear in oral evidence that such a consultation should not be construed as a guaranteed offer of palliative care. "All we can say is that, if the patient wants to have palliative care, he should ask for it and they should try to arrange it; but, if they do not or it is not possible, then the patient must make up his mind. That is what autonomy is about. It is about choosing between the options available to you rather than the ones you would like to have" (Q 148).

28.  Once the attending physician has completed the various actions placed upon him in the Bill, and given that the patient has not withdrawn his or her application, the process must be repeated at the hands of a consulting physician in order to provide the safeguard of a second opinion. The Bill defines both the attending and consulting physicians in Clause 1. The consulting physician must be "practising in the National Health Service" and must be someone who is "qualified by speciality to make a professional diagnosis and prognosis regarding the patient's illness and who is independent of the attending physician". Lord Joffe explained in his oral evidence the thinking behind the requirements for NHS practice and for independence. "We do not want," he said, "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"; and "we do not want partnerships to be developed in terms that automatically a doctor within the attending physician's practice has an ongoing relationship with a particular consultant, to whom all patients are passed" (Q 70).

29.  Clause 4 of the Bill sets out the requirements which must be met in the event that a patient, having completed the various steps required under Clauses 2 and 3, persists with his or her request and wishes to make a declaration. This must be witnessed by two individuals, of whom one must be a solicitor. The patient must be "personally known" to each witness or must have "proved his identity", and it must "appear" to each witness that the patient is of sound mind and has made the declaration voluntarily. The solicitor must also be satisfied that the patient understands the effect of the declaration[17]. In answer to questions, Lord Joffe made clear that it was not intended that the witnesses should have in-depth knowledge of the patient. "We are asking them to sign a document saying that they were there at that particular time and that the patient appeared to them to be of sound mind and to have made the declaration voluntarily" (Q 88).

30.  Clause 4 also precludes members of the medical care team and various categories of people who might have a vested interest in the patient's death from acting as witnesses; and it provides that a declaration, once made, shall come into force after the requisite waiting period (defined in Clause 1 as 14 days, commencing on the date of the request) and shall remain in force (unless revoked) for six months. Revocation may be made at any time "whether orally or in any other manner without regard to [the patient's] physical or mental state"[18].

31.  Clause 5 provides for the attending physician to act on the patient's request for assisted suicide or voluntary euthanasia once the actions set out in Clauses 2 to 4 have been completed and provided that the patient has not revoked his declaration. The executive clauses of the Bill do not distinguish between providing the patient with the means to end his or her own life and ending the patient's life for him or her. They are expressed in terms of "assisting the patient to die", which is defined in Clause 1 as "the attending physician, at the patient's request, either providing the patient with the means to end the patient's life or, if the patient is physically unable to do so, ending the patient's life". In his evidence Lord Joffe underlined this distinction. "The attending physician may only provide the patient with the means to end the patient's life, the obligation being or 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" (Q 70).

32.  With the exception of Clause 8 (Psychiatric Referral), which arguably would sit better earlier in the text, the remainder of the Bill deals with the actions to be taken in the wake of a patient receiving assisted suicide or voluntary euthanasia, with the legal protection of medical personnel involved in the act and with the administration of drugs to patients suffering severe distress. Clause 7 attempts to deal with the situation of persons, and especially physicians, with conscientious objections. Subsection (1) provides a general employment immunity to persons with conscientious objections from being obliged to participate in any way in the process of assisted suicide or euthanasia provided for in the Bill, while subsections (2) and (3) require attending and consulting physicians with conscientious objections to "take appropriate steps to ensure that the patient is referred without delay" to attending or consulting physicians who do not have such objections. In his oral evidence Lord Joffe recognized the difficulty, to which the Joint Committee on Human Rights had drawn attention[19], that an obligation to refer a requesting patient to a colleague could nonetheless be regarded as an infringement of conscience, and he accepted that a new "conscience clause" would be needed in the event that the Bill were to move forward, which would place on the patient the responsibility for finding a physician without conscientious objection.

33.  Clause 10 of the Bill provides that a physician or member of a medical care team who in good faith complies with a patient's request to die in accordance with the provisions of the Bill shall not be in breach of either the law or any professional oath or affirmation, while Clause 11 makes it an offence to falsify, participate in the falsification of or destroy a declaration.

34.  Clauses 13 and 14 provide for the documentation necessary for an audit trail of the operation of the bill. The attending physician must collect the relevant documents, including the patient's declaration and the evidence that all the qualifying conditions have been met, and forward them to a monitoring commission within seven days of the patient's death. The commission, which shall consist of three members—a registered medical practitioner, a legal practitioner and a lay member "with first-hand knowledge or experience in caring for a person with a terminal illness"[20], must assess the records and decide whether or not the terms of the law have been fulfilled.

35.  Clause 15 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". Lord Joffe explained the need for this section, which appears out of character with the rest of the Bill, as follows: "There is clear evidence that many patients do not get sufficient pain relief, for any one of a number of reasons. Research published by CancerBACUP this year 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". Lord Joffe added: "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" (Q 70).

36.  The Bill as drafted does not extend to Northern Ireland. Lord Joffe has, however, announced his intention to exclude Scotland also from its ambit on the grounds that the issues covered by the Bill are devolved to the Scottish Parliament.

37.  Lord Joffe described his Bill to us as "a deeply humane piece of legislation which will protect patients as well as their physicians and families" (Q 70). Lord Joffe has pointed out that his Bill "contains many more safeguards than other-end-of life practices which hasten death in the United Kingdom" (Q 70) and that "in all these cases there is no legislation, no safeguards whatever. There are guidelines in relation to withholding treatment and advice given by the General Medical Council or the BMA… but there is no legislation" (Q 98).

38.  We now proceed to examine the fundamental ethical principles underlying the Bill (Chapter Three) and a range of practical issues concerned with its implementation in the event that it were to become law (Chapter Four).

10   Clause 2(2)(b) Back

11   Clause 8 Back

12   Clause 1(2) Back

13   Clause 2 and 3 Back

14   Clause 2(2)(a) Back

15   Clause 2(2)(e)(iv) Back

16   Clause 3(1) Back

17   Clause 4(2)-(4) Back

18   Clause 6(1) Back

19   HL paper 93, HC 603, Paragraphs 3.11 to 3.16 Back

20   Clause 14(2) Back

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