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Earl Howe: Once again I am grateful to the Minister for her full reply which largely persuades me that the amendment I have proposed is wrong. However, I shall reflect further. I beg leave to withdraw the amendment.
The noble Earl said: In moving Amendment No. 117 I wish to speak also to Amendment No. 118. These amendments are, I hope, self-explanatory and were suggested to me by the Making Decisions Alliance. Having said that, the MDA did not draft them, I did, and I apologise for the technical defect in Amendment No. 118, which refers to a deputy consenting to the research. Technically, a deputy would not do that even
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under the terms of the Government's proposals. Consent does not enter into this part of the Bill. However, if the Minister is kind enough to overlook that mistake, I hope that I may explain what lies behind the amendments. They are intended to ensure that where the opinion of a deputy is being sought on whether research may be carried out on someone, and the research is not of a kind that is likely to benefit the patient, that deputy is eligible to be a consultee only if he or she is also a close relative of the patient.
This is one of those amendments about achieving the right balance in what are quite a complex set of provisions, and I admit that it is a very fine balance. But we need to look at the broader context. The type of research falling under Clause 34(3)(b), which is the research I am concerned about here, is not the kind that is likely to provide direct benefit to the patient. The sensitivities are therefore considerably greater, and we can see these added sensitivities reflected in the wording of the European convention which permits research of this nature only in exceptional circumstances, as we have just debated. The safeguard in this clause of the researcher having to consult a person close to the patient before being allowed to proceed, is a good one, the rationale surely being that only a close relative or friend or carer will be in a position to know what the patient's beliefs, wishes and feelings arefor example, whether the patient is the kind of person who has an altruistic outlook on life, or whether he is not.
So to say, as it does in Clause 32(7), that a deputy may be one of the categories of people who can be consulted over permission to proceed with this type of research is rather odd. A deputy may or may not be someone close to the patient and may or may not know him well. If he is not, or does not, I do not see how he can possibly be in a position to make a judgment of the kind that the clause invites him to make.
I am therefore proposing that while a deputy may indeed be consulted for permission to proceed, he or she will at the same time have to be a close relative as well. I hope that the Minister will appreciate the rationale behind the amendment. I beg to move.
Baroness Barker: I air what I think is a legitimate concern about this amendment. The noble Earl, Lord Howe, and I have mostly been in agreement on the MDA amendments, along with other Members of the Committee. However, what happens if a person who lacks capacity does not have anyone who falls into the categories named in Amendment No. 118?
Let us take another possibly real-life situation. What if the person who lacks capacity has someone and that is the person whom he would wish to trust with this sort of decision? I do not disagree with the noble Earl, Lord Howe, when he says that it is of the utmost importance that someone who is close to the person and knows and understands his wishes should be involved. I think that the noble Earl used the word "friend", but that word is not in the amendments. Let us say that someone was raised in a family of Jehovah's Witnesses but had discontinued his subscription to
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that belief and moved on. Would this amendment mean that his blood relations, for example, would have the power to overrule his wishes?
I think that there is a parallel in the mental health legislation that is currently being debated. I am sorry that the noble Lord, Lord Carter, is not in his place. I think that the phrase used in that legislation is something about "a nominated person". The intention of that provision is to widen the category of those whom people can nominate to take decisions for them.
Baroness Andrews: I am grateful to the noble Baroness for making some of the comments that I shall make and for doing so more briefly than I will be able to do. And far from overlooking the noble Earl's mistake in the amendment, I did not even see it. So I cannot blame him for anything.
The question of who should or should not be consulted is a very important one. Consultees will have to consider what is involved in the research project and what the person without capacity feels about it. Those are very important responsibilities. Obviously, they will have to know about the aim of the research. It is important, therefore, that the noble Earl has drawn our attention to the issue of research that is slightly distant to the direct benefit element. Consultees will need to know about the procedures involved, the risks and any inconvenience, and then give advice on whether the person without capacity should take part and on the person's beliefs, values, likely wishes and feelings, and, of course, whether the person has made any advance decisions.
I am very sympathetic to what noble Lords have said. It is extremely important that the consultee knows the person well enough to be able to give advice on that sort of information. Much more often than not, the relationship is likely to be one of carer, spouse, partner or close family member. However, that may not always be the case. That is why we cannot arbitrarily rule out someone who knows the person better than anyone else simply because he is what we call a deputy. It is very important that he knows the person well and is concerned about the person's welfare. That is why we state in Clause 32(2) that the person consulted must not be acting in a professional capacity or for payment. That would, for example, rule out a solicitor who might be handling financial affairs for an unbefriended person.
However, we believe that it is unlikely that the courts would explicitly grant a deputy powers in relation to research. So we do not want to rule out the possibility, for example, that a health and welfare deputy could be consulted. A deputy, or an attorney, may often be a parent or a spouse, who will know the person better than anyone else. For that reason, as I said, the Bill states that it does not automatically
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follow that someone cannot be consulted simply because he has been appointed as a deputy or has lasting powers.
We have again run into the problem of the listthe curse of the list. The problem, by definition, is that we risk excluding people, as the noble Baroness said. The issue is who is best placed to make a decision and how to draw up a list. What about a step-child, for example, or a step-sibling, cousin, great-niece, partner who is not a registered civil partner or friend who acts as a carer? Any of those might be very suitable to act as the deputy but they would all fall outside the amendment and automatically be excluded. There may therefore be the unintended consequence of denying a relative or partner any direct say in that involvement.
However, we sympathise with the concerns. We have already made a commitment to amend the code of practice on this point. In particular, we will make it clear that a deputy who had no relationship with, or knowledge of, the person who lacks capacity before his appointment as deputy should not be consulted about participation in research. So although I cannot meet the entire spirit of the amendment, I hope that my comments will reassure noble Lords.
Earl Howe: I am grateful to the Minister for her reply and to the noble Baroness, Lady Barker, for her remarks. Yes, I concede that the list of relations is arbitrary. The list could probably be varied without countering the point of principle too greatly, but it would still be a list and would therefore offend the noble Baroness. So I am sure that if I bring this point back at Report stage, it will not be in the form of a list. But I think, perhaps, the noble Baroness has said enough to persuade me that I should not take that action in that she has very helpfully told the Committee that the code of practice has reflected the point at issue.
Of course, what troubles me is that a court deputy who is not someone close to the patient is the only type of consulteepotentially, on the face of the Bill at leastwho is not close to the patient. That makes a nonsense of the requirement in Clause 32(4)(b), which says that the researcher must ask the consultee the question about "P's wishes and feelings". It does not say that whoever is being consulted has to give an informed answer, though that is clearly what it implies. But it does not actually say that.
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