Clause 24 - Advance decisions to refuse treatment: general
Mental Capacity Bill
9:45 am
Mr Paul Holmes (Shadow Minister (Work and Pensions), Work & Pensions; Chesterfield, Liberal Democrat)
I thank the hon. Gentleman for his intervention and agree with him. As he says, a will can deal with either a considerable or a small sum, and making an advance directive suggesting what an individual would wish to happen to them in certain medical circumstances is a far bigger matter for everyone concerned than the disposal of material possessions. It is important that all possible safeguards be put in the Bill.
People have expressed the fear that if there is only one witness to an advance directive, the likelihood is greater of a decision being recorded that was not fully freely arrived at by the individual. The purpose of amendment No. 102 is to add belt to braces by calling for a second witness, so that altogether there are three signatures on the advance directive. Of course, having two witnesses can never be a complete safeguard, but we have to draw the line somewhere: we could provide for three, four or five witnesses to add more safeguards, because in theory two witnesses could collude to lead a person into an advance directive. One can never be absolutely certain, but the amendment straightforwardly tries to add extra reassurance and an extra safeguard in the making and witnessing of advance directives.
New clause 1 is more substantive than amendment No. 102. On discussion of the draft Bill, on Second Reading and in Committee, what force advance directives should have and what wishes they can express have clearly been major questions. In all those debates there has been strong support for two aspects of the advance directive argument. First, there is the argument that people should have the right to make advance directives so that, in certain medical circumstances, they can exercise some control over, give some expression to, or make some declaration about, the sort of judgment that they would like to be made in respect of receiving treatment that they fear might be withheld for various reasons, for example, medical convenience, or because others might judge their best interests as they themselves would not do themselves if they had that choice. In addition, there is the argument that advance directives should cover the expression of a positive wish that certain forms of treatment and nutrition continue when one is incapacitated, even though medical practitioners might say that that is not the best thing to do.
Secondly, but equally, there is strong support for the other side of the argument: that individuals should be able to make advance directives that have more legal force to allow them, well in advance of developing a debilitating condition, to express their personal judgment about the circumstances in which certain treatments should be withheld.
Committee members have given eloquent examples of members of their families and how they informed their positions in the debate. My father had Alzheimer's; over a period of several years, I watched him die. Committee members have been sent material from all sorts of bodies, but I was
particularly struck by the material sent by the Alzheimer's Society. It points out that advance statements—advance directives, living wills, or whatever term one wishes to use—
''allow people to state what forms of treatment they would or would not like carried out should they become unable''
to express a decision. The Alzheimer's Society supports
''the use of advance directives because they enable those with dementia to have a say in their future care'',
and points this out:
''Most people prefer not to think about illness and death.''
In his opening comments, the hon. Member for Daventry (Mr. Boswell) said that there was no compulsion on people to make advance directives. The vast majority of people never do—they do not have to. However, some people do think about it, especially those who have advance warning that they will reach a state of no longer being able to express their personal opinion about what should be happening to them, as people with Alzheimer's do. Most people prefer not to think about the issue, but some do. Some people are put in the position of having to recognise that one, two, three or more years down the line, they will not have capacity. The Alzheimer's Society argues that people with Alzheimer's disease
''are often anxious about what will happen should they reach that stage.''
They may be anxious that treatment that they would like may be withheld, or that
''life-sustaining or life-prolonging treatments will continue to be provided long after they are able to achieve a level of recovery or length or quality of life that they would at present consider to be acceptable or tolerable.''
There is strong support for all aspects of the argument over advance directives, and sometimes those aspects are in conflict. It seems eminently logical that individuals should have the right and the capacity in an advance directive to express their preference regarding what should happen to them in certain circumstances—either that treatment should continue beyond the point at which a medical practitioner might say that it is not sensible or worthwhile, or that in certain conditions they do not want to receive certain treatments or nutrition. However, there is some logical inconsistency in one of the arguments that we have heard: that an advance directive for treatment and nutrition to continue is good and we should respect that wish, but if somebody makes an advance directive saying that under certain conditions they do not want nutrition or medical treatment to continue, they cannot have known what they were saying and we should therefore override that decision at a later date. It cannot logically be said that an advance directive for treatment and nutrition should be respected, but an advance directive to withhold treatment or nutrition under certain conditions should not be.
New clause 1 is designed to offer reassurance to both sides of the debate. It offers the possibility of recognising both forms of advance directive and
creates an overarching category of advance statements while distinguishing the two separate types of advance request. One type is the request for treatment, which currently does not carry legal force, which would continue into the period of the individual's incapacity, when they could not make such a decision any more. The normal doctor-patient relationship would continue because the individual would have been able to make an advance directive expressing his wishes. As we have heard during previous sittings, the doctor and other people involved would take a prolonged look at the situation and exercise their judgment, but their deliberations would be informed by the clearly expressed view of the individual. The new clause would distinguish such a directive from advance refusals, which do carry legal force, regarding the sorts of treatment and nutrition that might be withheld under certain circumstances.
If we are to extend the autonomy of individual decision-making through the Bill, which is the Bill's purpose, we must respect the individual's right to make advance directives in both directions—for doctors to provide or to withhold treatment and nutrition in certain circumstances—and their right to inform future decisions taken by their relatives, doctors and others involved. Logically, if we support one form of advance directive, we also support the other. We cannot pick and choose and say that the person is capable of expressing an opinion in one direction but is not capable of expressing an opinion in the other. New clause 1 is designed to establish a stronger legal framework to give more equal weight to both forms of advance directive.