Joint Committee on the Draft Mental Incapacity Bill Written Evidence

80.Memorandum from the Association for Palliative Medicine of Great Britain and Ireland (APM) and the National Council for Hospice and Specialist Palliative Care Services (MIB 742)


  1.  This response is focussed on the clauses dealing with advance decisions, these being our area of expertise both as medical practitioners in specialist palliative care and as ethicists[5].

  2.  Overall we welcome the principles which underlie the proposals in these clauses. In particular, we are pleased that the draft Bill addresses the problems which arise when health care professionals have to make decisions on behalf of those who lack capacity; that it allows for an LPA for health and welfare matters; that it addresses the status of advance decisions to refuse treatment; and that it provides a potential legal framework within which advance decisions can be operated.

  3.  However, we are concerned that, in their present form, the actual proposals are bland and undefined and unlikely to serve truly the best interests either of patients or of health care practitioners. In particular, the clauses are so widely drawn that, if they were to come into force without supporting codes of practice or guidance, they would in practice be almost unworkable.


  4.  The important areas here relate to those who have never had capacity and to those who have, for whatever reason, not made an advance decision.

  5.  More guidance is required for those who will make treatment-related decisions on behalf of those without capacity. These individuals include those who act under a lasting power of attorney, those who are designated by the Court as an appointed deputy and those clinicians who may meet the person without capacity for the first time when such a decision is required.

  6.  We note that clause 4 of the draft Bill sets out some guidance for clinicians (and others) when assessing a person's best interests. We would suggest that the views of donees of LPAs should take precedence over those who might have cared for a person in some minor respect, but whom the individual in question had chosen not to appoint as an attorney.

  7.  It should be recognised that there cannot be a single pro forma for these decisions which can never entirely encompass what are highly personal judgements.

  8.  Our particular concern, in this context, is to protect the interests of patients who have a long-term, or regular but intermittent lack of capacity. Although the primary focus of the draft Bill appears to be on persons with chronic incapacity, it will clearly also apply to persons with physical illness(es) which may cause either confusion or impairment of consciousness. Such situations frequently render patients incapacitated in making health care decisions, either temporarily or permanently. In the context of palliative care such incapacity may be a predictive event, but it may also be unexpected with a sudden onset.

  9.  The draft Bill requires decision-makers to form an assessment about an individual's best interests. That assessment will inevitably involve judgements surrounding the individual's quality of life, in particular the question whether or not, when reviewing all the circumstances and potential outcomes that the individual faces, that life would be considered by the patient to be worth living in the future.

  10.  An individual's view of disability and quality of life changes as he progresses along the disease or disability journey. Individuals are able to adjust to living with conditions and outcomes which, to a healthy individual, would make life intolerable. It is essential that decision-makers form perspectives which take account of that.

  11.  This is relevant to advance decisions as well. We would hope that any code of practice would include a proposal that an individual should regularly revisit his advance decision to keep it up to date and ensure that it reflects any evolution in his attitudes as he progresses along the disease path.


  12.  General guidance for establishing advance decisions has already existed for some time. It clearly states the requirement that the individual must have capacity at the time of making the decision[6] We note that the draft Bill reflects that position.

  13.  It is welcome that the draft Bill establishes the means by which a framework to operate advance decisions can be created. However, we note that there is currently very little detail about how advance decisions would work in practice.

  14.  We suggest that either more detail is included in the draft Bill concerning the proper drafting of and interpretation of oral or written advance decisions or that a Code of Practice is issued as soon as possible to guide professionals, carers and appointed proxies. This should be considered alongside the draft Bill before it is presented to Parliament, remembering that the Code of Practice for the Mental Health Act 1983 was not issued until 1990—hardly helpful in the interim for patients or those charged with caring for them. We would not welcome such a delay applying to this draft Bill.

  15.  We note that, unlike some of the other issues covered by the draft Bill, there is no requirement for a code of practice to be issued in relation to advance decisions. That is a significant flaw; the current proposals need further detail and guidance before they would be workable. A code of practice is essential before the clauses dealing with advance decisions come into force. As the draft Bill currently stands it would be possible to bring the clauses providing for advance decisions into force without any supporting code of practice. That would cause us great concern.

  16.  Given that so much about the detailed operation of advance decisions has been left to a future code of practice, we believe that, if Parliament is to be able to scrutinise effectively the practical impact of this legislation, the codes of practice should be considered alongside the draft bill.

  17.  We also note that members of the Mental Incapacity Consultative Forum were told[7] that lessons had been learned from the Scottish experience, in particular about the difficulties which arise when the publication of codes of practice is left until after the passage of the primary legislation. That experience should not be repeated here.

  18.  In particular, the following issues need to be addressed, either in the primary legislation, or in a code of practice:

    (a)  What form should advance decisions take, both in terms of their recording or reporting, and any subsequent amendments or withdrawals, as well as in terms of the required detail or clarity? For example, how would an oral amendment to a written decision work? As specialist palliative care practitioners, we frequently work with oral advance decisions, recording these in the patient's case notes—we would not wish to endorse the implication that incapacitated people will be expected to have drafted written advance decisions—as is the case in the Scottish legislation.[8]

    (b)  What level of detail will be needed to enable a clinician to give effect to an advance decision?

    (c)  Should oral and written advance decisions be witnessed and, if so, by whom, and by how many people, and from what disciplines?

  19.  There should also be clear reference to the fact that no advance decision can request any illegal act such as euthanasia or physician assisted suicide and also that physicians are not obliged to offer treatments which they believe to be clinically inappropriate.

  20.  The emphasis of the draft Bill is on decisions to refuse specific treatments. However, the sense of advance decisions is often to exclude life-sustaining or life-prolonging treatment more generally—not to focus on specific clinical procedures. It is difficult, almost impossible, for a patient to draw up a "shopping list" of treatments that he would wish to refuse, before knowing what might be relevant to the conditions that befall him.

  21.  The solution might be to distinguish between specified treatments and treatment more generally, and in particular to define what the Bill means by "life-sustaining treatment". We note that in the Scottish legislation "medical treatment and life-sustaining treatment" includes:

    (a)  surgical, medical, optical or dental procedures or treatment;

    (b)  ventilation, nutrition and hydration by artificial measures;

    (c)  any other procedure or treatment designed to safeguard or promote physical or mental health.

  Advance decisions should only relate to (b) above if the individual specifically states that is to be the case.

  22.  We would be willing to offer oral evidence to the Committee should that body consider this appropriate.

August 2003

5   Harrison MAM Advance Directives: a critical examination PhD thesis, University of Keele 1997. Back

6   BMA Advance Statements about Medical Treatment BMA 1995, reprinted 2000. Back

7   Meeting 14 May 2003. Back

8   Mental Health (Care and Treatment) (Scotland) Act 2003. Back

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