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Lord Alton of Liverpool: I do not want to detain the Committee unduly, but the Minister has just said that if your Lordships agree to the amendments people would have treatments inflicted upon them that they did not want. Yet Amendment No. 98 categorically says,
Baroness Ashton of Upholland: I was trying to be very clear that I understand the intention behind the amendments. However, as I have indicated, it is quite difficult when it comes to interpretation. I accept that the anxiety behind the amendments is to make things safer and better for vulnerable people, and I share that desire. My argument is very straightforward: we should not do this on the face of the Bill. Just as importantly, we have to be clear that artificial nutrition and hydration, while an emotive issue for very good reasons, is a treatment, for the reasons I have given. As such, it needs to come under the safeguards provided for treatments and we have sought to provide clarity in the Bill to ensure that when people decide not to accept a treatment, they are absolutely certain about what they are doing.
My final point is about the Joint Committee on Human Rights. As regards the Burke judgment, which the right reverend Prelate raised, there are issues to be considered. As noble Lords will know from what I said earlier, the Burke judgment is currently under appeal. The Department of Health has joined in the appeal to obtain clarity about the potential universality of what might be covered, but not on the basis of trying to move away from the provision of ANH when it is clearly in someone's interests to receive it.
We are looking carefully at what the committee has said. We have had the report for only a few days. As noble Lords would expect, I will consider very carefully what the committee has said and will perhaps have the opportunity to pick up some of these issues later.
On that basis, I hope that noble Lords will be reassured that I completely understand these important issues. We believe that either they should be pursued in a different way or that we do not necessarily achieve what the noble Baroness and the noble Lord seek on the face of the Bill.
Lord Alton of Liverpool: Before the noble Baroness sits down, I am very grateful for what she said about her willingness to reflect further on what the Joint Committee said about the inadequacies in the Bill. Will she consider a mechanism, before we reach Report stage, for discussing with opposition spokesmen and other Members of your Lordships' House the possibility of taking those concerns into account?
Baroness Ashton of Upholland: I am not sure that the committee said that the Bill was particularly
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inadequate. In fact, it has been largely very supportive of the Bill. Jean Corston raised specific points with me, some of which we have taken on board. I know there is concern that when people appoint a power of attorney or make an advance decision they know that ANH is part of treatment. There is an issue about whether people include that. I will look at the committee's findings and write to noble Lords who were involved in it to let them know what my deliberations suggest, so that there are no surprises on Report.
Baroness Knight of Collingtree: It is always a great pleasure to listen to the noble Baroness, Lady Ashton. The more carefully one listens to her, the more information one obtains. After making one or two brief remarks, I shall return to what she has said. Reports of debates such as these are extremely importantHansard goes far wider than we may realise.
I have said, time and again, that I am not trying, through my amendment, to force painful procedures on patients. Certainly no one here is trying to overturn the Bland decision. In fact, I should like to reassure the noble Baroness: I think that the Bland decision was perfectly understandable. I said that I was against keeping people alive in certain circumstances, and I explained why.
However, I was amazed and really rather shocked that the right reverend Prelate the Bishop of Oxford made it quite plain that he did not believe one word I was saying. I am puzzled about why he should feel
The Lord Bishop of Oxford: That is a little unfair. I took what the noble Baroness said very seriously. In fact, I took it so seriously that I wrote to all the reputable medical organisations to share with them her concerns and to ask whether they had any supporting evidence.
Baroness Knight of Collingtree: I think that if one wished to be balanced in the matter, one might seek other information, not just from the people most closely concerned. What the right reverend Prelate said was most hurtful, because I assure the Committee that I did not introduce the Patients' Protection Bill because of a flight of imagination. If he would like to meet the people who talk to me about their concerns, including the Member of Parliament whose wife was affected, I would be more than happy to arrange it. I will, if he wishes, also arrange to let him see the newspaper reports and details of the television programmes. The facts were such that they worried me. I talked to people and heard what they had to say; I introduced the Bill, and later this amendment, because of what they said.
I do not doubt for a moment that the best interests of the patients are intended to be at the heart of the Bill. I do not dissent from that, quarrel with it or fail to notice it. All we were trying to say was that the protection for patients against what had been
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happening could be more clearly written in the Bill. We were certainly not saying that the Bill did not have the very best of good intentions.
I was particularly pleased to hear what the noble Baroness said about consultation being imperative. The Member of Parliament I mentioned was not consulted, yet his wife was being systematically starved. We could use the Bill to ensure that patients receive better protection.
I am so impressed with what the noble Baroness has said that I should like to consider carefully every point she has made and talk with my noble friend Lady Masham and others on this matter. If we may also talk with the Minister and there are still concerns, we can return to them at a later stage. I beg leave to withdraw the amendment.
The noble Baroness said: We now move on to another extremely important subject and extremely important part of the Billthe question of research and participation in research by people who lack capacity. Members of the Committee have tabled many amendments to this part of the Bill. They all seek reassurance on a fundamental issue; that is, the extent to which it is possible for people with mental incapacity to take part in research where sufficient safeguards exist to ensure that they are not exploited.
Other Members of the Committee will talk in more detail about particular aspects of that matter, but as a member of the Joint Committee I take this opportunity to say that members of the Joint Committee considering the draft Bill paid considerable attention to this matter and examined it in great detail. It was a subject upon which we received a great deal of evidence from a wide range of organisations reflecting diverse opinions.
The members of the Joint Committee ultimately recommended to the Government that the Bill should contain provisions that would enable people with mental incapacity to take part in research for two key reasons. First, a number of conditions have the effect of reducing the capacity of an individualthe patient interest groups made this clear to usand it is important to conduct further research to find out more about those conditions. We felt that that research should be supported, albeit it within the right context.
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Secondly, the Joint Committee believed that a strong system of medical ethics and medical ethics committees already exists in this country. However, we considered that it would be helpful to address an existing anomaly; namely, so far as we know, there is no statutory provision governing such research and the ethics behind it. We considered that it would be helpful to address that anomaly and thereby to create a safeguard for people who lack capacity.
Amendment No. 100 deals with a slightly broader subject but none the less an important one. Obviously, for understandable reasons, most of the debates that we entered into covered physical medical research into particular conditions. However, as we have said many times, this Bill is about the lives of people who lack capacity in all its forms. It is important for us to tease out the Government's view on the ethics governing social research, including on people with mental incapacity.
Many forms of research can be intrusive but not physically intrusive; for example, research involving the observation of people's behavioural activities. Those of us who have had the pleasure of sitting through debates on DWP matters will know that intrusive questionswhich it is legitimate to askmay be asked about people's finances. People with capacity sometimes find those questions objectionable. Nevertheless, poverty among carers and people with disabilities is an important matter that we need to examine.
The purpose of Amendment No. 100, which may seem rather oddI hope that it does not convey misunderstanding of the broad sweep of this part of the Billis to ask the Government what are the ethical standards that would protect people who lack capacity as regards forms of research other than those which are strictly medical. I beg to move.
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