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

Memorandum by CARE


  1.1  CARE is a supporter-based Christian charity incorporating more than 160 pregnancy crisis centres, fostering and remand fostering initiatives and day care for people with learning disabilities. In addition to social care and educational programmes, CARE undertakes research and lobbying on associated issues in the parliaments and assemblies of the United Kingdom, European Union and United Nations.

  1.2  CARE welcomes this opportunity to make a contribution to the work of the Select Committee on the Assisted Dying for the Terminally Ill Bill ("the Committee"), and is grateful for the time given by the Committee to consultation with the public and other interested groups.

  1.3  CARE's 100,000 supporters have been interested in the issue of terminal care management for over 20 years and on their behalf, CARE's Public Policy team has submitted evidence to a large number of committees considering the issue. These included the House of Lords Select Committee on Medical Ethics and inquiries by the Law Commission into Mental Incapacity.

  1.4  CARE has regularly tested its members' views on key issues such as the withholding and withdrawal of treatment and the use of "advance declarations". Their views remain strongly opposed to any change in law that would weaken the prohibition of intentional killing or permit doctors and nurses to assist in shortening the life of patients.

  1.5  The wider issues surrounding euthanasia have been debated at length in a variety of contexts, including the House of Lords Select Committee on Medical Ethics. We take it as axiomatic that the legalisation of euthanasia or assisted suicide would fundamentally alter the ethos of medical care, undermine the trust that elderly, disabled and terminally ill patients can vest in medical professionals and lead to pressure on vulnerable patients to consider ending their lives when they would otherwise take advantage of legitimate healthcare options. We do not intend to rehearse those arguments at length, but will limit our comments to the provisions of the Assisted Dying for the Terminally Ill Bill itself.


  2.1  CARE is opposed to the Assisted Dying for the Terminally Ill Bill as it permits voluntary euthanasia, that is the intentional killing of a patient by act or omission as part of their medical care.

  2.2  CARE holds that no new evidence has been brought forward which should undermine the work, report and considered conclusions of the House of Lords Select Committee on Medical Ethics. Their findings included the following:[56]

    —  There should be no change in law to permit euthanasia (Recommendation 278).

    —  We strongly endorse the right of the competent patient to refuse any medical treatment (Recommendation 279).

    —  We do not recommend the creation of a new offence of mercy killing (Recommendation 293).

    —  We recommend no change in law on assisted suicide (Recommendation 295).

  2.3  CARE recommends that the Committee reject the Bill, which is flawed in principle, drafting and practice. Nor do we consider that the legislation could be so improved as to make it either desirable or safe for the terminally ill, disabled or mentally incapacitated.

  2.4  We observe that current legislation provides an effective framework for handling end of life issues.


The long title of the Bill

  The long title of the Bill suggests that it is intended to "enable a competent adult who is suffering unbearably as a result of terminal illness to receive medical assistance to die at his own considered and persistent request; and to make provision for a person suffering from a terminal illness to receive pain relief medication."

  CARE believes that the phrase, "to make provision for a person suffering from a terminal illness to receive pain relief medication" is misleading. Although Clause 3 requires that a specialist in palliative care has attended the patient to discuss the option, the Bill establishes nothing in this regard that is not already common medical practice in the United Kingdom.

  CARE holds that the phrase "medical assistance to die" is also disingenuous. Under the definitions of the Bill, "assisted dying" can and would include the actual killing of a patient as opposed to assisted suicide or assisted death. While the Bill and its language seek to give the impression that the aim of the legislation is to allow clinicians to help patients through the natural process of death, it is clear that the Bill deals with the assisting of suicide or purposefully killing.

Clause 1 (Authorisation of Assisted Dying)

  Clause 1 of the Bill provides that "subject to the provisions of this Act, it shall be lawful for a physician to assist a patient who is a qualifying patient, and who has made a declaration in accordance with this Act that is for the time being in force, to die."[57]

  CARE contends that the Bill establishes an exception to the offence of intentional killing. Under the Bill, a doctor can end the life of his or her patient, albeit under specific circumstances, and not be prosecuted for that action.

  With this in mind, CARE refers the committee to the report of the Medical Ethics Select Committee 1994 and their findings relating to the legal prohibition on intentional killing:

    (a)  Belief in the special worth of human life is at the heart of civilised society. It is the fundamental value on which all others are based, and it is the foundation of both law and medical practice. The intentional taking of human life is therefore the offence which society condemns most strongly. (Paragraph 34)

    (b)  The prohibition [of intentional killing] is the cornerstone of the law and social relationships. It protects each of us impartially, embodying the belief that all are equal. We do not wish that protection to be diminished and we therefore recommend that there should be no change in the law to permit euthanasia. We acknowledge that there are individual cases in which euthanasia may be seen by some to be appropriate. But individual cases cannot reasonably establish the foundation of a policy which would have serious and widespread repercussions. Moreover, dying is not only a personal or individual affair. The death of a person affects the lives of others, often in ways and to an extent which cannot be foreseen. We believe that the issue of euthanasia is one in which the interests of the individual cannot be separated from the interest of society as a whole. (Paragraph 237)

    (c)  . . . issues of life and death do not lend themselves to clear definition, and without that it would not be possible to frame adequate safeguards against non-voluntary euthanasia if voluntary euthanasia were to be legalised. (Paragraph 238)

    (d)  As far as assisted suicide is concerned, we see no reason to recommend any change in the law. We identify no circumstances in which assisted suicide should be permitted, nor do we see any reason to distinguish between the act of a doctor or any other person in this connection. (Paragraph 262)

  CARE argues, in line with the findings of the Medical Ethics Select Committee and of other previous select committees, that the prohibition on intentional killing should not be weakened by the legalisation of assisted suicide. It would be impossible to establish sufficient checks for it to be safe to allow doctors to be treated differently in this connection.

Clause 2 (Qualifying Conditions)

  Clause 2 establishes a number of conditions that must be met before the attending physicians should be able to allow the patient to die. It is CARE's view that the clause represents a number of potential difficulties.

  Clause 2 (2a) requires that the patient shall have informed the attending physician that he or she wishes to die. The clause does not stipulate what should constitute a request to be assisted to die, thereby beginning the process given under the Bill. Presumably, a request made when the patient is suffering from pain or distress that could be relieved through appropriate palliative care would qualify.

  CARE believes that this would potentially set the patient on a course resulting in euthanasia and limit the potential for legitimate health care options.

  Clause 2 (2b) stipulates that the attending physician consider the patient's medical records and establish that there is no reason to believe that the patient is incompetent, where "incompetent" means not having the capacity to make an informed decision. CARE believes that there are a variety of problems with this condition:

    —  The definition of incompetence is vague. CARE does not believe that the clause is fit for any objective criteria for establishing competence and, moreover, would argue that the desire to end one's own life could potentially be an indication of mental incompetence.

    —  The physician, who must only be a registered medical practitioner, may not have the aptitude or expertise to establish that the patient is or is not competent.

    —  This provision creates a clear potential for "doctor shopping" where patients who are denied a request on the grounds on mental incompetence would seek to be treated by a doctor more likely to agree to his request.

    —  CARE suggests that the Committee should seriously consider the implications of the Bill that establishes euthanasia as a normal part of medical treatment if the Mental Capacity Bill should become law, particularly if proxy decision makers would be able to request the active commission of euthanasia on behalf of a patient without capacity, and whether this could be considered to be in the patient's best interests.[58]

  Clause 2 (2c) states that the attending physician should have made the determination that the patient has a terminal illness, where terminal illness means an illness which in the opinion of the consulting physician is inevitably progressive and which will result in the patient's death within a few months at the most.

  CARE believes that the definition of terminal illness, which relies on the opinion of the consulting physician of death within a few months, is unavoidably subjective and indefinite. Given the wilfully imprecise nature of this definition, it would be very difficult to determine which patients would not meet the qualifying conditions.

  Clause 2 (2d) stipulates that the attending physician must have concluded that the patient is suffering unbearably, where unbearable suffering means suffering by reason of pain or otherwise which the patient finds so severe as to be unacceptable and results from the patient's terminal illness.

  Again, CARE holds that this provision would be impossible to apply in practice—does it relate to physical suffering or mental and emotional suffering also? Does it apply when appropriate palliative care is in place or when it is withheld? Clearly, the Clause would not preclude "perceived" suffering, such as frustration over the loss of movement.

  Indeed, "suffering" and "pain" are complex terms, subjectively felt within a network of different factors—not all are physical but some are social, mental, or spiritual. The decision cannot be made by the attending physician, or perhaps even by the patient. The decision can also change over time, stages of illness and depending on the treatment available.

  Clause 2 (2e) requires that the attending physician inform the patient of his medical diagnosis, prognosis, the process of being assisted to die and the alternatives to assisted dying.

  CARE argues that the patient's continuing decision will depend much on how the patient is informed of these factors, not just that they are informed. The process then is open to considerable abuse, and patients may be given information or medical advice that is "leading" or unsympathetic to their values.

Clause 3 (Offer of palliative care)

  Clause 3 is superfluous, and seems to be intended to divert attention from the genuine objective of the Bill.

  CARE is also concerned that the Bill in general takes a tick-box approach to palliative care. Patients may be made aware of its availability, but may not be aware of its potential in relieving pain and maintaining quality of life.

Clause 4 (Declaration made in advance)

  CARE believes that there are considerable problems, particularly with the witnessing provisions of the Clause. For example, the solicitor must ascertain that the patient is of sound mind and has made the decision voluntarily—again, it is questionable that he or she would be able to make this judgement.

  Furthermore, it is unclear who will be able to perform as the second witness. Neither the attending physician, consulting physician, psychiatrist, member of the medical care team, relative or partner may serve as the second witness.

  CARE recognises that this is intended to reduce the potential of abuse, but argue that it is ineffective. Indeed, it seems that the second witness would provide no check against abuse, given that it would potentially be someone who is not familiar with the patient or his or her illness and would, again, be unqualified to judge whether the patient is competent, understands the implication of his or her decision and, furthermore, has made the decision voluntarily.

  No provision is made in the Bill for witnessing third parties (ie, consulting physicians, witnesses) to actively prevent the process of euthanasia if they believe that the patient's request for assisted death is involuntary.

Clause 5 (Further duties of attending physician)

  Clause 5 sets out further duties for the attending physician, including the need to inform the patient of his right to revoke the declaration. However, the Bill does not deal with the question of what status the declaration should have should the patient lose his or her ability to revoke the declaration or his become mentally incapacitated or unable to communicate their a desire to revoke the declaration during that time. Indeed, it seems that it would remain in force. Clause 5, therefore, represents an inadequate safeguard against abuse.

Clause 6 (Revocation of declaration)

  Clause 6 stipulates that a patient may revoke a declaration without regard to physical or mental state.

  Again, CARE argues that the clause offers insufficient safeguards, as a patient may well lose the actual physical capacity to revoke a declaration and to communicate that decision effectively (a definition of capacity within the Mental Capacity Bill). Moreover, that patient may be able to revoke the declaration without regard to his mental state, but he may become unaware of his previous decision and of its significance.[59]

Clause 7 (Duties of physicians, and conscientious objections)

  Clause 7 provides that no person is under a duty to, whether by contract or by any statutory or other legal requirement, to participate in any diagnosis, treatment or other action authorised by the Bill to which he has a conscientious objection.

  CARE argues that the clause is ineffective, since there is an obligation to become materially involved in a process of referral. It is both illogical and unreasonable to conclude that a physician whose conscience would be violated by performing or participating in assisted dying or voluntary euthanasia would then be content with passing his patient to a doctor who will commit euthanasia.

Clause 8 (Psychiatric referral)

  Clause 8 provides that physicians who believe that the patient may be incompetent must make a referral to a psychiatrist.

  CARE is concerned about the limited nature of the provision and that a referral to a psychiatrist is not an integral part of establishing competency on the part of the patient. It is also unclear why the attending and consulting physician can take the view that a patient is not incompetent (as in Clause 2 (2b)) but is deemed incapable, and must seek the psychiatric referral, if finding the patient incompetent. In other words, a higher standard of evidence is required to establish that the patient should not receive assistance to die than to establish that he meets the qualifying conditions. We fear that this may create a situation where it is easier for a doctor to carry out euthanasia than it is to withhold it.

  Furthermore, the psychiatrist may only give a narrow determination (that the patient is not suffering from a psychiatric or psychological disorder causing impaired judgement) and thus presents a very low hurdle taking no account a variety of subtle judgements that a psychiatrist could make.

  This clause, like others, would leave no room for objective definition. What can be considered a psychiatric or psychological disorder causing impaired judgement?

Clause 9 (Notification of next of kin)

  Clause 9 establishes that the attending physician shall recommend that the patient informs his or her next of kin of the request for assistance to die.

  CARE expresses surprise that there is only a requirement to recommend that the patient informs his or her next of kin, and that there is not an absolute requirement that the next of kin be notified.

  The implications for third parties are clearly worrying. Firstly, it may be the case that third parties such as family members hold information relating to specific qualifying conditions which the attending and consulting physicians do not (ie, evidence of mental incapacity). Secondly, a close relative or carer may, for instance, return from holiday to discover that a terminally ill loved one had received assistance to die.

  Again, CARE draws the attention of the committee to the conclusions of the Medical Ethics Select Committee, which found that "dying is not only a personal or individual

affair". CARE is surprised at the extent to which absolute autonomy is placed at the heart of the Bill, and while there is a clear need to respect and defend the principle patient autonomy we argue that we must also establish limits where choice affects and impacts upon third parties and society at large.

Clause 10 (Protection for physicians and other medical personnel)

  Clause 10 establishes protection for physicians and other medical personnel who have acted in good faith in accordance with the Act.

  We are concerned that the clause establishes a "good faith" defence where euthanasia has been committed outside the conditions of the Bill, increasing the potential for abuse.

Clause 12 (Insurance)

  Clause 12 requires that no insurance policy that has been in force for 12 months or more shall be invalidated by reason of a doctor having assisted a qualifying patient die in accordance with the Act.

  CARE argues that the clause provides further opportunity for abuse of the patient. His or her death presents potential for pecuniary gain for third parties.

  Even if third parties do not seek to persuade the patient to request assistance to die the potential to benefit third parties may convince a patient to request assisted suicide where they would not in other circumstances.

Clause 14

  Clause 14 establishes a monitoring commission that will monitor the workings of the Act and all medical practitioners who have assisted a patient to die will forward all medical records for consideration by the three Commissioners.

  The commission shall receive the medical files and consider if the qualifying conditions have been met. If they believe that they have not, they shall refer the matter to the coroner (or procurator fiscal in Scotland) for further investigation.

  CARE notes that the requirement to report to the monitoring commission in the Netherlands, where doctors complained that they were forced to criminalize themselves by reporting to the Commission, created an impetus towards full legalization of euthanasia.

Clause 15 (Administration of drugs to patients suffering severe distress)

  Clause 15 gives that a patient suffering from a terminal illness shall be entitled to request and receive such medical treatment as may be necessary to keep him as far as possible from pain and distress.

  Again, CARE argues that the clause is superfluous and establishes nothing that is not already an accepted part of medical practice. For instance, in the so-called "Lindsell Case" of 1997 the legal principle that patients are entitled to medical relief from pain and distress under existing legislation was established.


  4.1  CARE is grateful for the time given by the Committee to consultation with the public and other interested groups.

  4.2  CARE would be opposed to the introduction of assisted suicide or euthanasia. It would threaten legal and clinical safeguards for vulnerable patients such as the terminally ill, mentally incapacitated and disabled.

  4.3  We see no reason why the considered conclusions of the Medical Ethics Select Committee of 1994 should be challenged. No new evidence or factors have come to light that would substantially dispute their findings and the law has been periodically tested in the courts.

  4.4  We consider that the problems presented by the clauses of the Assisted Dying for the Terminally Ill Bill are indicative of the dangers of weakening the law on intentional killing and of the clinical risks that would accrue to such changes. We do not believe that it is possible to improve or amend the Bill to make it either ethically acceptable or safe for patients.

  4.5  Of particular concern to us is the interplay between such a Bill as the Assisted Dying for the Terminally Ill Bill and the upcoming Mental Capacity Bill. We strongly suggest that the Committee consider the impact of the Bills in tandem.

  4.6  We urge the committee to reject the Bill and to prevent its progress to further stages.

August 2004

56   Page 58, House of Lords Report of the Select Committee on Medical Ethics, Vol 1. Back

57   Assisted dying is defined as 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. Back

58   Clause 1(5) of the Mental Incapacity Bill establishes that "an act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests. Clause 4(1) of that Bill states that the person making the determination on best interests must consider "all the circumstances appearing to him to be relevant", while Clause 4(2)-(6) establish a number of particular factors, such as "beliefs and values" that would influence decisions, or "past and present wishes or feelings". Back

59   The ability to retain information is another possible criteria for mental capacity, given under Clause 3 of the Mental Capacity Bill. Back

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