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"NOTIFICATION AND REPORTING OF DECISIONS
(1) The appropriate authority shall make provision by regulation for the maintenance of a record of all medical treatment decisions made by deputies and by donees of lasting powers of attorney, and the related information specified in subsection (5) below, and for that purpose the appropriate authority shall also make provision by regulation for the collection of such information from NHS bodies, local authorities and any other public bodies the appropriate authority shall stipulate.
(2) For the purposes of subsection (1) above it shall be the duty of such bodies from whom such information is to be collected, in accordance with the regulations prescribed in subsection (1) above, to maintain a record of any medical treatment decisions affecting any person in their care or for whom they are responsible where such decision is made by a deputy or by a donee of a lasting powers of attorney appointed under this Act, together with the related information specified in subection (5) below.
(3) The appropriate authority shall prepare and present a report on such medical treatment decisions and related information.
(4) The report shall be laid before Parliament and published before 31st December in each year.
(5) The report shall contain
(a) a summary, by type of treatment, of medical treatment decisions made by deputies and donees of lasting powers of attorney within the reporting period, indicating
(i) where such decisions resulted in the withdrawing and withholding of medical treatment;
(ii) where such decisions resulted in the withdrawing and withholding of life-sustaining treatment;
(iii) where such decisions were followed by a serious adverse event or reaction in relation to P within the meaning of Article 2, paragraph O of Directive 2001/20/EC;
(iv) where such decisions were followed by the disability or continuing disability of P;
(v) where such decisions were followed by the death of P;
(b) a summary of all applications to the Court in relation to those medical treatment decisions;
(c) a summary of all offences reported and convictions recorded in relation to those medical treatment decisions; and
(d) a summary of the cost to the National Health Service of legal proceedings arising out of any of those medical treatment decisions."
The noble Lord said: The amendment standing in my name and that of the noble Lord, Lord Brennan, and my noble friend Lady Masham of Ilton would insert a new clause that deals with the notification and reporting of decisions. The amendment is intended to provide a framework for monitoring decisions made by court-appointed deputies and attorneys.
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The Government are aware of the real fears about the powers that the Bill vests in proxy decision-makers, especially as regards end-of-life decision-making. A practical way of responding to those fears is to provide a framework within which Parliament can monitor the decisions being made by deputies and attorneys. I do not want to place a great burden on health authorities and I am conscious that people are already very busy, but most of the information that would be collected under the amendment is anyway in the public domain and would have to be collated. Perhaps the Minister will confirm that and tell us whether the amendment would require anything onerous that is not already being done.
The amendment would allay some of the fears that people have about the implications of the Bill, however much we have been able to address some of those concerns during our proceedings. For instance, trends and patterns could be observed so that if it appeared that decisions to withdraw life-sustaining treatment, especially artificial nutrition and hydration, were being made with increased frequency, further investigation could be conducted and abuses uncovered.
On the second day of Committee, on Thursday before last, the Minister announced that the Government would be bringing forward an amendment on Report to remove the power to make decisions relating to life-sustaining treatment from court-appointed deputies. I welcome that amendment; that is a positive step forward and I was very glad that the Government announced it. It goes some way to address the concerns that my amendment, Amendment No. 178, which was of course tabled before the government announcement, was intended to address.
However, I remain concerned about the lack of scrutiny to which the decisions of attorneys will be subject. Hence the amendment. The maintenance of a proper record comprising all the information set out in subsection (5) would allow Parliament effectively to police the legislation.
This weekend, it was reportedsome Members of the Committee will have seen the reports in the newspapersthat the Secretary of State for Health has sought permission from the Court of Appeal to intervene in the Leslie Burke appeal because of the cost implications to the NHS of granting patients the right to receive nutrition and hydration delivered by artificial means (ANH).That was a front page story in the Daily Mail headlined,
Having heard what we have from the noble Baroness and her noble friend during the course of our proceedings, I know that they will be able to lay those fears to rest. I hope that they will take this opportunity to do so because, needless to say, it has launched yet another avalanche of letters from people who are concerned about the Bill.
Nevertheless, helpfully, that highlights anxietiesespecially, as we heard in Committee, from disabled people themselves. Some kind of reporting procedure on the lines outlined by myself, the noble Lord, Lord Brennan, and my noble friend Lady Masham in this amendment would give us the chance to monitor what happens after the Bill is enacted. If patients were granted the right to request and receive any medical treatment, such as dialysis or chemotherapy, that would have significant resource implications for the NHS. We are all aware of that.
However, ANH is not the same as that kind of treatment; it is a different matter. If the Government and the medical profession had not been so dogmatic about the classification of ANH as medical treatment, then vulnerable patients such as Leslie Burke would not have felt the need to go to court to be granted the right to receive adequate nutrition and hydration. In a sense, the Government have therefore created a rod for their own back.
I have to say that as a layman and not a medic the idea that patients could be denied ANH because of resource implications would cause me profound problems. It would be pretty scary, and I notice from the affirmation of the Ministers that they would share that view. For that reason alone, however, it is important to introduce to the Bill a notification and reporting system so that decisions
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can be recorded. In that way, if evidence emerged that resource considerations played a part in the provision of ANH or any other medical treatment to those who lack capacity, then action could be taken.
If, for instance, we saw a blip emerging in some part of the country, such as Stockport, action could be taken. Let us take the example that my noble friend Lady Masham gave earlier of the involvement of someone like Doctor Shipman. In such an area, if someone were using this legislation for purposes that were never intended, and if there were reporting every year on the basis for which I am arguing, it would rapidly become apparent and it would then be possible for the Government to do something about it. But if we do not collect the data we will never know, and we will not be in a position to take effective action. Without the notification and reporting mechanism that I propose there will be no effective way to verify whether the legislation is producing the promised benefits for those who lack capacity.
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