A matter of life and death

Through the Mental Capacity Bill’s ‘living will’, patients will be able to make advance decisions about the treatment they receive. Julia Abrey reports

The Mental Capacity Bill has been a long time in its gestation. The background to the bill was a series of Law Commission reports in the early 1990s followed by a number of consultation papers culminating in the draft bill (at that stage called the Mental Incapacity Bill) published in June 2003. The bill was to provide a statutory framework to empower and protect vulnerable people who may not be able to make their own decisions. This was to make it clear who can make decisions, in which situations and how they should go about it, which would enable people to plan ahead for a time when they might lose capacity.

The progress of the bill has been slow and subject to a significant amount of consultation. Following publication it was subject to pre-legislative scrutiny by a parliamentary committee that published its report in November 2003, to which the Government responded in February 2004. The bill passed its third reading in the Commons on 14 December 2004 and has now completed its committee stage in the Lords. The Scrutiny Committee, consisting of eight members of each of the Houses of Parliament, conducted nine sessions of oral evidence from 61 witnesses, considered 139 written responses that were subsequently published and 1,000 pages of further responses. In addition to the bill itself, a detailed Code of Practice was published in September 2004 to give guidance on how the bill will operate in practice. It is likely that it will be enacted later this year, but as it is such a wide-ranging statute, it is not planned to come into force until 2007.

Although the bill covers a wide area, recommending among other things a new form of enduring power of attorney known as lasting power of attorney and a restructured Court of Protection, one of the most controversial provisions concerns advance decisions to be refused medical treatment, commonly known as ‘living wills’.

Living wills are documents made by competent adults that give directions in relation to their healthcare intended to come into effect at a future time when they have lost the capacity to communicate their wishes. Although there is more than one type of living will, the provisions set out in Clauses 24 to 26 of the Mental Capacity Bill concern the most commonly used type – a direction to be refused treatment should donors find themselves in a specific set of circumstances. The common law has always provided that a competent adult has a right to refuse medical treatment and, if a person who has validly refused treatment is then treated against their will, this is a trespass to their person. Various cases in recent years have extended the refusal principle, and a refusal made by a competent patient with capacity can now be treated as extending to a time when they no longer have that capacity.

What the bill seeks to do is enshrine the effect of common law decisions into statutory form while clarifying the present position both for the benefit of patients and the protection of doctors. Under Clauses 24 to 26, an adult aged 18 or over with the necessary capacity can make an advance decision to refuse medical treatment, although this is subject to certain conditions. No patient has a right in law to demand specific forms of medical treatment and no one can ask for or be given unlawful procedures, such as assistance with suicide. Clause 58 of the bill confirms that the law relating to murder, manslaughter or assisted suicide is unchanged.

In drafting the bill, the Government was anxious to ensure that the provisions concerning advance decisions had sufficient safeguards. An advance decision, therefore, can only be treated as effective insofar as it is both valid and applicable. To be valid, the advance decision must not have been withdrawn, overridden by a subsequent lasting power of attorney or if the donee had done anything else which is clearly inconsistent with the decision remaining their fixed decision. An advance decision will not be applicable if the person has the capacity to make the decision at the particular time or if the treatment involved is not specified in the advance decision, or if the circumstances are not those specified. It will also not be applicable if circumstances exist that the donor did not anticipate that would have affected the decision had they known about them. There are also special safeguards relating to the refusal of life-sustaining treatment.

The clarification of the position of doctors acting under an advance decision is one of the aims of the bill, especially as there is no prescribed form in which an advance decision needs to be made and both written and oral advance decisions are capable of being legally effective – this was previously the case of common law. Healthcare professionals may be aware of the possibility that a patient may have an advance decision and if they have reasonable grounds to believe or are alerted to the existence of a relevant written or oral advance decision they should, it time permits, make reasonable efforts to find out what that decision was. Reasonable efforts might include having discussions with the patient’s relatives, looking in their notes or contacting their GP. Once a healthcare professional considering treating a patient has been informed of the existence of an advance decision, they must satisfy themselves that it is an advance decision within the terms of the bill and that it is valid and applicable. Insofar as they are clear that this is the case, a doctor may withhold or withdraw treatment without concern about liability. Conversely, a doctor may safely treat unless they are satisfied that there is a qualifying advance decision that is valid and applicable. Where there is doubt about existence, validity or applicability, a declaration can always be sought from the court as to whether such an advance decision exists. Clause 26 of the bill covers emergency situations and provides that a doctor may provide necessary treatment to prevent serious deterioration of a patient’s condition or life sustaining treatment while a decision is being sought by the court.