§ 3.7 p.m.
§ The Secretary of State for Constitutional Affairs and Lord Chancellor (Lord Falconer of Thoroton)My Lords, on behalf of the noble Baroness, Lady Ashton of Upholland, I beg to move this Bill be now read a second time.
I am very glad to see the noble Lord, Lord Goodhart, in his place. The last time we worked on a Bill he became ill. I hope there was no causal connection. I am also looking forward to the maiden speech of the noble Baroness, Lady Chapman, later in the debate.
12 This Bill is long overdue. For 15 years people have consulted and deliberated over a Bill which will provide as much empowerment as possible and proper protection for adults who cannot take all decisions for themselves. More than 2 million adults in England and Wales have impaired capacity to make decisions for themselves. They may have disability, mental illness, brain injury or an illness such as dementia. One in seven adults in this country is a carer.
The Bill seeks to do six main things. First, it allows adults to take as many decisions as they can for themselves and, in any event, to put them at the centre of the decision-making process about themselves. Secondly, when adults fear that they may not be able to take decisions about their medical treatment in the future, it allows them, if they wish, and subject to effective safeguards, to make decisions in advance of incapacity about whether treatment should be carried out or continued.
Thirdly, where adults cannot make decisions and have not made any decision in advance about their own personal welfare or their property and affairs, the Bill ensures that the decisions which are made for them are made in their best interests. Fourthly, where an adult lacks capacity to make a decision for himself about serious medical treatment, accommodation in a hospital or care home, or other residential accommodation, and has no family or friends to be consulted, the Bill will require the relevant NHS body or local authority to appoint an independent consultee to support the person in these most difficult decisions.
Fifthly, the Bill will provide protection against subsequent legal liability for those carers who have honestly and reasonably sought to act in the best interests of the person for whom they have cared. Finally, it will provide clarity and safeguards around the carrying out of research in relation to people who lack capacity.
The Bill had its origins in 1989 when the Law Commission responded to concerns raised by people who work with those who lack capacity. The Law Commission consulted extensively and produced a draft Bill. The then Lord Chancellor, the noble and learned Lord, Lord Mackay of Clashfern, agreed that this should be progressed.
Last year a draft Bill received thorough and extremely constructive pre-legislative scrutiny by a Joint Committee, chaired by my noble friend Lord Carter, who I am glad to see in his place. Several other members of the committee, such as the noble Baroness, Lady Barker, the noble Lord, Lord Rix, and my noble friends Lady Wilkins and Lady McIntosh, will take part in today's proceedings. I greatly welcome that.
The committee welcomed the Bill. It stated:
We believe that there is a clear need for the Bill … Those it is intended to help have waited long enough".The Government accepted the vast majority of the committee's recommendations, and the Bill was greatly improved as a result. I am grateful to the committee for its commitment and expertise.13 The current law is confusing, often incomplete, and much misunderstood, and it does not focus enough on empowering the adult whose interests we seek to protect. This Bill will, I believe, bring about better treatment in every sense for vulnerable adults who lack capacity in any area of their lives. That is why we are promoting it. It will improve the lives of millions of vulnerable people and their carers. I hope it will effect a cultural shift in the way we treat people who lack capacity—protecting their interests effectively, and ensuring that they are at the heart of the decision-making process. I believe that is why the Bill has such widespread support among those who have experience of dealing with vulnerable adults.
Age Concern said:
Age Concern welcomes the Bill and believes that there is a longstanding need to clarify the law and provide protection for the many thousands of people, young and old, who may have difficulty making decisions and those who look after them".The Church of England Archbishops Council said:It offers legal protection and guidance not only to the incapacitated but to their loved ones and those who are entrusted with their care and treatment".The General Medical Council said that,there is a pressing need for legislation of this kind".The Bill seeks to do much more than deal with the issue of decisions concerning the giving of life-sustaining treatment to adults who lack capacity. But it is around that issue that the greatest controversy concerning the Bill has occurred, and understandably so. It is a difficult issue, and a hugely important one. It involves questions of life and death being decided for someone who cannot take that decision for himself. I shall deal with those issues at the start. I very much hope that the other issues the Bill covers do not get obscured by these issues.It is important to emphasise two important points right from the start. The Bill does not intend nor does it have the effect of authorising euthanasia. We make that clear in Clause 58. That is accepted by those who have voiced concerns about the Bill.
In July, following the addition of Clause 58 and some other important changes, the Roman Catholic Archbishop of Cardiff, Peter Smith, said that,
we do not believe that the Bill can be described correctly as a Bill introducing a permission for euthanasia, which would have to be opposed for this reason".The second important point is that the Bill will never allow people who care for vulnerable adults to be motivated by a desire to kill. Instead, they must always focus only on the best interests of the patient.However, it is very important to distinguish between two separate situations which the Bill envisages. The first is where the adult currently has capacity and for particular reasons wants to make a decision about whether treatment is to be given or continued in the future at a time when he or she does not have capacity. That is the advance decision case.
The second and more usual case is where there is no advance decision and the carer or professional has to do what is in the best interests of the patient.
14 I shall deal with advance decisions first. Patients who have capacity should plainly be able to make decisions about their own treatment, both now and in the future. Once capacity is lost, those advance decisions should be effective only where it is clear that they apply to the relevant treatment, the circumstances set out in the decision apply, the decision has not been withdrawn, the patient has done nothing inconsistent with it and has not subsequently appointed a lasting attorney to take the decision, and nothing has happened since the decision was made which might reasonably be expected to have changed the advance decision.
Moreover, if the decision was intended to apply even if life would be endangered, the advance decision must say so. But if, when you have capacity, you feel strongly about refusing particular invasive treatments, even when subsequently you might become incapable of deciding, you should be able to have that refusal respected even when later you are not capable of expressing it.
If all the safeguards I have set out apply, the decision is being made, in practice, by the patient. That is how it should be. He or she has decided what is best for him or her. The decision is not based on someone else's judgment of best interests but on the free will of the patient.
Concern has been expressed, including by the Joint Committee on Human Rights, about ensuring that there is no uncertainty about the existence of the advance decision, and what it means. The committee expressed concerns about casual remarks being treated as an advance decision, about people not fully understanding the effect of their advance decision and about a person changing his mind but not being able to express that change of mind.
All those points are valid. In relation to the clarity of the decision and the understanding of it, I believe that we should specify in the Bill that it should be recorded in writing and witnessed. We are exploring whether medical advice should be obtained before the decision becomes valid. That latter point may better be dealt with by a code of practice. We will bring forward amendments to deal with these issues or indicate whether we think they should be dealt with by a code of practice. When I say "recorded in writing and witnessed", we obviously need to deal with the situation where the patient cannot write or has difficulty in recording the decision in that way.
The Bill already deals with many of the concerns I have dealt with. First, if the patient still has capacity, the advance decision does not apply (Clause 25(3)); and, secondly, where the patient does anything clearly inconsistent with the decision, it does not apply (Clause 25(2)(c)).
In any event the doctor incurs no liability for continuing with or starting treatment unless he is satisfied that there is an advance decision to the contrary. So, if the doctor has any doubt he provides the treatment.
Next, I deal with the situation where there is no advance decision. The decision about whether to continue to give life-sustaining treatment will then fall 15 to be taken by the doctor, acting with any attorney who has relevant powers or, very exceptionally, a deputy appointed by the Court of Protection.
In some cases a decision about the continuation of life-sustaining treatment will still be taken by the court. The Bill preserves the jurisdiction exercised in the Tony Bland case, and restates the principles applied in that case. These are very difficult decisions, even for a court. In making them the decision-maker must act in the best interests of the patient. Above all, he must make an objective assessment. The decision cannot simply be the personal value judgment of the decision-maker—the decision-maker cannot say, "If I were in the patient's position, I would want to die"— nor can it be motivated by the desire to bring about the death of the patient.
It can be only a decision based objectively on the best interests of the patient and all the relevant circumstances. The decision-maker must consider whether the patient may recover capacity so that he can take the decision himself. He must involve the patient as much as he can. He must consider the patient's current and past views, beliefs and values in so far as they would affect the decision, and any other things by which the patient would have been influenced. He must consult loved ones and other carers. He must begin by assuming that it is in the patient's interest to live. That was contained in an amendment introduced in the Commons by Mr George Howarth, which the Government accepted.
In the vast majority of cases, providing treatment will therefore be the best interests conclusion. But we all know of those difficult cases: of terminal illness where death is now very near; or where there is no prospect of recovery of consciousness or sensate brain activity because of the extent of brain damage—and of the different case where there is very great pain.
Any decision must be on the basis of the decision-maker's objective judgment of what is in the best interests of the patient. That will in some cases involve concluding that treatment that might otherwise prolong life should be withheld. Or it may involve treatment that might reduce pain but which objectively may reduce the length of remaining life.
The above approach has widespread support. Yet there are some people who argue that every possible step, irrespective of the burden or the futility of the treatment, should be taken if it prolongs life. Although we respect the sincerity of those views, we prefer the approach that recognises that in some cases it will be in the best interests of the person to withhold treatment or to give palliative care that might incidentally shorten life.
The point is put well by the Roman Catholic Archbishop of Cardiff, who said:
it is not the church's position that life must be sustained at all costs. On the contrary, one can quite reasonably, and consistently with one's responsibilities for oneself and others, decide to refuse treatment—even life sustaining treatment—which one judges burdensome or futile, knowing that forgoing the treatment will shorten one's life".16 As I said earlier, this part of the Bill has to recognise that there will be cases where the withholding of treatment or certain forms of treatment will shorten life but will, objectively, be in the best interests of the patient. Those decisions we want to authorise: decisions motivated not by a desire to kill but by an objective assessment of the best interests of the patient.We want to make that clear in the Bill, and in another place have undertaken to do so. That assurance was also given in my correspondence with the Archbishop of Cardiff. I will bring forward amendments in Committee in this House to deliver on the undertaking given to the Commons.
I now turn to the other important aspects of the Bill. The key to the Bill is Clause 1, which contains the principles of the Bill. These set out the empowering principles at the heart of the legislation. Most importantly, the Bill makes it clear in Clauses 2 and 3 that you cannot just decide, once and for all, that someone is "incapable". It depends on the individual decision. Each assessment of whether someone can take a decision must be specific to the decision needed, and made at the time that it is needed.
That will help many people. For example, someone with a learning disability may not be able to manage investments, but can do their grocery shopping; or people who find it difficult to communicate may be frustrated because carers or professionals do not bother to find out what they want. The Bill makes clear that you must do all that you reasonably can to help them to participate.
I have already explained in relation to life-sustaining treatment that where you have to take a decision for someone who lacks capacity, you must act in that person's best interests. That principle applies to all such decisions, large and small. It is the touchstone of the Bill. That is the current common law test, but is not always well understood.
As I said, the best interests test is an objective test that must take into account all relevant circumstances. The clause requires consultation and the consideration of the person's wishes, feelings, beliefs and values. The best interests test ensures that the person himself is the focus and driver of all decision-makers.
The Bill also clarifies the law when you need to commit an act in connection with care or treatment of a person who cannot consent. Many people who care for those who lack capacity worry about what they are legally allowed to do. A nurse might want to restrain someone who is having an epileptic fit. Someone who works in a care home might need to help a resident to use the toilet. Clause 5 sets out the boundaries and, again, places such acts within the framework of best interests.
The Bill then deals with formal decision-makers: attorneys in Clauses 9 to 14 and deputies in Clauses 16 to 20. An attorney—someone appointed under a lasting power of attorney—can be appointed only by someone who has capacity, if they choose to do so, to deal with specified decisions. An attorney will most often be a loved and trusted partner, close relative or friend.
17 At present, an attorney can deal only with financial matters. However, many people still believe that because they are someone's next of kin they can legally step in and take decisions on the person's behalf if that person loses capacity. They find out too late— sometimes by the hospital bed—that that is just a myth. The Bill extends provisions for attorneys to cover personal welfare matters, should the donor wish.
The ability to appoint an attorney—someone you know and trust—reassures some people. Someone with Alzheimer's, for example, may worry how they will be cared for when they cannot give a view on their care. Someone with mental health problems may be afraid of what will happen when they have an episode of losing capacity. This is one reason why the Bill is supported by organisations such as the Alzheimer's Society and Mind.
Although appointing an attorney is a private matter, the Bill has numerous safeguards. Attorneys cannot do as they please. They can act only in the person's best interests. Lasting powers of attorney must now be registered before use. They can be investigated and revoked. As I said, an attorney cannot take decisions about life-sustaining treatment unless the lasting power of attorney appointing him or her explicitly says so.
A deputy is appointed by the Court of Protection if it is in the best interests of the person to do so. The court currently appoints receivers to oversee financial matters. We expect that most deputies will still be for financial matters, but the court will be able to appoint a deputy to deal with welfare decisions as well and, very exceptionally, the court can appoint deputies to make decisions about life-sustaining treatment. That may help, for example, if someone needs a series of decisions to be made about a course of treatment and there are distressing and lengthy disputes between doctor and family.
Turning to research, noble Lords will know that we included research provisions in the Bill in Clauses 30 to 33 on the recommendation of the Joint Committee. It said that people who lack mental capacity should not be denied the benefits of properly conducted research. The Bill provides proper safeguards for research to be carried out in relation to people who lack capacity, where it would potentially benefit them or people who are affected by a similar condition. There is insufficient clarity in the law and in practice concerning such research at present.
The Bill will ensure that research can take place only when, first, the research has been approved by the relevant expert, authorising body; secondly, there has been consultation with the person's carers or other consultee and they do not object; and, thirdly, there is no indication of any objection from the person himself or herself either in advance of or during the research.
Next, there are independent consultee provisions in Clauses 34 to 39. Those respond to concerns that we should provide more protection for the most vulnerable people for particularly serious decisions. Decision-makers, such as health and social care professionals, will have a duty to consult the independent consultee when 18 serious decisions are made about future living arrangements, care or treatment where people have no friends or family to be consulted. That is a brand new protection for those very vulnerable individuals. We are committed, after full consultation, to extending those provisions to cover other groups and situations and have taken a regulation-making power to do so.
Finally, the Bill establishes a new Court of Protection in Clauses 43 to 53, which will provide a specialised forum dealing with all issues relating to people who may lack capacity. The current Court of Protection can deal only with the property and affairs of those who lack capacity. Cases involving the person's personal welfare and healthcare must be heard in the High Court. The court will be complemented by a specialised public guardian, dealt with in Clauses 55 to 56, who will maintain registers of all lasting powers of attorney and deputies and be a central point for information on matters relating to lack of capacity.
Millions of people rely on us to make this important Bill happen. It will empower and protect vulnerable people. It will bring about an important improvement in all their lives and in the care that they receive. I commend the Bill to the House.
§ Moved, That the Bill be now read a second time. — (Lord Falconer of Thoroton.)
§ 3.30 p.m.
§ Earl HoweMy Lords, the House will be grateful to the noble and learned Lord the Lord Chancellor for introducing the Bill with his customary clarity and thoroughness. It is, as he so rightly said, a Bill of unusual importance, not simply because of its potential significance for countless people who lack mental capacity or who may in future lose it—that includes all of us—but also because of the sensitivity and difficulty of the issues that it embraces. Those considerations surely heighten the sense of responsibility, which I am sure we all share, for us in Parliament to do justice by the people whose lives the Bill will touch, and to ensure that on their behalf we legislate wisely and humanely.
I start by saying to the noble and learned Lord that I welcome the arrival of the Bill. I support the aims that lie behind it and recognise the considerable care and thought that has gone into its preparation over many years. In the latter context, I pay tribute to two people in particular. The first is my noble and learned friend Lord Mackay of Clashfern, who, in 1989, as Lord Chancellor, invited the Law Commission to carry out the initial investigation into this area of the law The second is the noble Lord, Lord Carter, who so ably chaired the joint pre-legislative scrutiny committee that did much to inform the deliberative process on the Bill, both inside and outside government.
If we stand back and look at the broad sweep of the Bill we can readily identify the key objectives that lie at its heart: the need to protect the rights and interests of those who lack the ability to take decisions because of mental impairment; and the need to provide clarity in the law for those who look after such people. Those are noble and worthwhile aims, to which I hope we can all subscribe.
19 At present, people who lack mental capacity are, legally speaking, out in the cold in many respects. It is a common misconception, for instance, that if someone is taken to hospital with a stroke or brain injury, that person's wife, husband or next of kin has a legal right to be consulted by the treating doctor about what happens to him or her. That is not so. Nor is it possible for people while in good health to nominate, for example, their spouse or child to take legal responsibility for decisions about their health or welfare if ever they should become mentally incapacitated.
The ability of a carer to look after someone lacking capacity and to know that, so long as they act conscientiously and competently, they are protected under law is of fundamental importance; yet at the moment the law does not provide a carer with any such reassurance. If we mind about the dignity of the human individual, we should surely welcome the attempt to find better ways of upholding and protecting that dignity. What I see in the Bill—and I say this without prejudice to those areas of it to which we shall need to devote special attention—is an essential humanity of approach, whether we look at the set of basic principles in Clause 1, the "best interests" provisions in Clause 4, or the Bill's insistence in many places that the wishes of the individual, wherever possible, should be respected and should prevail. I hope, therefore, that we can start off by recognising that the potential benefits of the Bill are such that any reservations that we may harbour about aspects of it, however deeply held, should be aired in a positive and constructive spirit.
Having said that, I am not sure that it is possible for us to reach an outcome that will satisfy everybody. For some, the very idea of an advance decision is unacceptable. That is because it carries with it the scope for a legally binding instruction to a doctor to withhold or withdraw medical treatment, within which definition is included artificially administered nutrition and hydration (ANH). Any withholding or withdrawal of ANH is regarded by some as tantamount to murder. I feel that I need to nail my colours to the mast by saying that I do not share that view. Anybody who has spoken to the Alzheimer's Disease Society, to take but one example of the organisations that passionately support this Bill, will appreciate that for people with severe dementia, artificial tube-feeding often does little or nothing to prolong life, can be deeply distressing and burdensome to the patient, and carries the severe risk of infection and other medical complications. With any Alzheimer's patient, a moment comes when doctors and carers need to judge that the quality of that person's dying is more important than the length of his or her life.
There are many sets of circumstances where ANH is appropriate and absolutely necessary, but it is not correct to equate the withholding or withdrawal of ANH with murder or euthanasia. For my own part, I do not believe that we should be in the business of seeking to overturn the judgment in Bland, essentially 20 because I regard it as having been a humane decision. Equally, I am convinced that providing a statutory framework for the concept of advance decision-making is right, because it is one of the most powerful ways of respecting the right of every man and woman to take decisions about themselves.
Of course, the necessary safeguards must be in place. Despite earlier amendments to the Bill and all ministerial reassurances to the contrary, there is widespread concern that the Bill as it stands would in certain circumstances permit passive euthanasia. I pass no opinion one way or the other on how the Bill should be interpreted, but, because of the existence and degree of that concern, I very much welcome the Government's undertaking to table an amendment at an early date to put the matter beyond doubt. It is essential that they do that. The wording of the amendment will naturally be crucial, but I am sure that we can take comfort from the fact that the Roman Catholic Archbishop of Cardiff, who has done a great deal to focus the minds of parliamentarians on this very grave issue, has expressed satisfaction with the broad outline of what the Government have promised to do.
There is a danger here that we try to be too prescriptive in the Bill about what doctors should or should not do in particular circumstances. While seeking to forestall the possibility of passive euthanasia, which nobody wants to see in this Bill, we must not simultaneously create a situation in which no terminally ill person will be allowed to die peacefully at home. It must be open to doctors and carers to follow the principle articulated in the recent judgment in Burke that, while there is a presumption in favour of life-sustaining treatment, as reflected in Clause 4(5), that presumption falls away if the patient's life, thus prolonged, would thereby become intolerable. Government amendment or no, the House may well have a great deal to say on those issues in Committee.
We shall also wish to look carefully at a range of matters relating to advance decisions, to ensure that neither the patient nor the doctor is placed in a situation that is unintended. Many, for example, have argued that, to be valid, an advance decision needs to be in written form. I welcome the Government's undertaking to amend the Bill to address that concern, though I simply add that there is an important difference between insisting that the decision be recorded in writing and stipulating that the patient himself needs to record it. Someone who verbally changes his mind while being wheeled into the operating theatre should be able to have that wish respected.
The lasting power of attorney is in principle a welcome concept. However we shall, I think, need to look at several issues surrounding it. One of them is conflict of interest, which is not addressed in the Bill. Another is the appropriateness, not least in the context of the European Convention on Human Rights, of allowing LPA donees and court-appointed deputies to veto life-sustaining treatment. In particular, I believe that we should question whether a deputy, who is not medically qualified, should have the ability to second guess a doctor's professional judgment on such grave matters.
21 Patient groups have welcomed the creation of lasting powers of attorney as a means of ensuring that important welfare decisions about a person, including life-and-death decisions, are not taken by strangers. But they have also said that there is a need to facilitate wider access to independent advocacy where a mentally incapacitated person, and perhaps his or her carer, has a need for support when making important decisions. The independent consultee, provided for by the Bill, will be accessible only in very limited sets of circumstances. I am sure that we will need to explore whether someone in genuine and serious need of help should have a right of access to an advocate on a much wider basis.
Clauses 30 to 33 relate to research on mentally incapacitated people. It is right to acknowledge the sensitive way in which these provisions have been drawn up, with the emphasis very much on the autonomy of the individual. However, the provisions suffer in several respects from a lack of clarity and we shall wish to tease out their precise intent through a number of probing amendments. We shall also, I think, want to press the Government as to the conditions under which invasive research that is not likely to result in any direct benefit to the incapacitated person might be eligible for approval.
I cannot conclude without mentioning what many see as a very significant omission from the Bill; I refer to the absence of any provision dealing with the recent judgment in the case of HL v UK. This case, as your Lordships will be aware, centred around the issue of whether a person who lacked capacity to consent to medical treatment was unlawfully detained when he was admitted to hospital informally and did not object to his admission. The lack of legal protection for such individuals has become commonly known as the Bournewood gap. I should be glad if the Minister, when she comes to wind up, would tell us how the Government intend to respond to that judgment in the context of Article 5 of the convention and whether she believes, as I do, that the matter could be appropriately dealt with within the scope of the Bill now before us.
The Minister will know that the concern about euthanasia is far and away the most urgent of those matters left unresolved in another place; and it must be put to rest. Leaving that aside, if I have identified areas of potential disagreement in the Bill, they are largely issues to do with achieving a better balance and greater clarity as opposed to fundamental issues of principle. That, I suggest, should encourage us as we look forward to the Committee stage. I firmly believe that we have before us an opportunity to improve the lives of many hundreds of thousands of very vulnerable people and to provide much greater legal clarity for the professionals and carers who look after them.
There will be many points of view expressed in the Chamber today, but I venture to suggest that in a matter of this kind it is the role of this House to pool its expertise on as much of a non-party basis as possible in order to arrive at an outcome which commands widespread support. From these Benches, we undertake to play our full part in that endeavour.
§ 3.44 p.m.
§ Baroness BarkerMy Lords, I declare an interest as an employee of Age Concern England. I had the privilege of being a member of the Joint Committee. I shall start by commending the noble Lord, Lord Carter, for his outstanding chairmanship of that committee.
One of the most touching of the committee's experiences that I could relay to this House was the moment when a gentleman who was a service user came to see us to discuss the report that we had produced. Perhaps I had better rephrase what he said: "When I saw the draft Bill I thought it was absolutely terrible. But I think you've done a really good job". We do not get many plaudits for our work in this House, but that one was particularly fine.
Unusually at this stage, I want to commend the Bill team for the way in which it, working particularly with the noble Lord, Lord Filkin, when he was the Minister, has not merely consulted but included user groups throughout the process of getting the Bill to this point. What we have before us bears the distinctive hallmark of legislation drawn up in I hat way. I also commend that approach to other departments, which I hope will learn the lesson of that process.
It would also be fitting for this House to acknowledge the valuable contribution of all those involved in the development of the Adults with Incapacity (Scotland) Act 2000 and the generosity with which they gave their expertise and time. I also commend to your Lordships research that has just been published by the Scottish Executive, which is a review of the implementation of that Act. It is for that reason, and for all their work, that we have this Bill of principle.
Of necessity, this is a framework Bill. We on this side of the House do not normally like framework Bills, but this is an exception—because it should be. Much is left to regulations, guidance and codes of practice. Again, I commend the Bill team for working so hard to get the draft code of practice to parliamentarians before they began to discuss the legislation. That is right because in this legislation we seek to determine what will happen to millions of people whose circumstances are different. That is why it is important that we have this Bill with those principles at the very heart of it.
The Bill goes a long way to establishing a legal framework for individuals who, as the noble Earl, Lord Howe, said, have been very much out in the cold. All too often, people who lack capacity, and those who care for them, have no right to inform or make decisions about their own lives. At times, carers in particular have had to depend on the support, and at times the collusion, of professionals to do what is right for the person for whom they care.
I shall give two examples. On the one hand, people who lack capacity and live in residential care are frequently denied access to the personal care allowance element of their pensions. Currently, there is nothing that they can do about that. On the other hand, carers find it extremely difficult to obtain access to the bank accounts 23 of people who lack capacity to get the small amounts of money needed to ensure that that person's life continues in the comfortable way that it should. Those are very mundane matters, which do not go to the Court of Protection, but they are very important for the people concerned.
We warmly support this Bill. In particular, we support the fundamental approach within it; that is, in every case we are talking about individual people and what is right for them. That said, there are some deficiencies in the legislation. A most fundamental deficiency is the lack of an equal consideration" clause, which would ensure that all options for treatment and care are considered for people who lack capacity, irrespective of their age, illness or disability.
There is a need for an explicit provision for that in the Bill as opposed to an inference or a read-across from other legislation—for example, the Disability Discrimination Act. It stems from the very strong belief by disabled people that they are not subject to equal treatment in healthcare provision. Were such an explicit provision to be made in the Bill, many of the misinterpretations of this legislation could be swiftly obviated. Everyone, no matter what their age, illness or disability, would have to be given the same consideration. The principles of the Bill and important considerations, such as a person's wishes and feelings prior to becoming incapacitated, would have to be treated with the same consideration as for anyone else.
There have been many claims that the Bill, including as it does provision for advance directives by which individuals inform medical professionals about the type of care they do not want to receive, will be a route to euthanasia. I strongly concur with the view of the Alzheimer's Society that it would not. I welcome the Government's statement that they wish to bring further clarity to this.
For those who struggled with this issue in Joint Committee—and struggle we did—we came to realise that what we were trying to achieve in law was a definition of the point towards the end of an individual's life when one would not seek to prolong suffering. It is the most difficult issue on which we have tried to advise the Government to legislate. The Joint Committee heard evidence from many distinguished religious and professional bodies. What emerged is what I can best describe as an advanced decision not to refuse treatment. We would have liked to see something on those lines brought forward. At the time we were told that because the Burke case was being considered, we could not pursue it, but we saw the merit in a provision which, for want of a better phrase, would provide for an advanced decision not to refuse treatment. We could see the benefits for those who suffer from episodic periods of incapacity. During a period when they were not ill, they would be able to say that at a future stage they may say that they wish to refuse treatment, but at that point such a wish should not be followed. That is a matter to which we may need 24 to return as the Burke judgment, which is being appealed, goes through. However, it is clear that something within the territory needs to be looked at. We should consider that sort of provision because anything which makes it possible to move legislation away from judgments about the value of the lives of groups of people to that which focuses on the rights and wishes of individuals, whatever their capacity, should be seized.
The same can be said about the question of participation in research, and I was glad to hear the Minister refer to the recommendations of the Joint Committee. Members on these Benches believe that we have and should retain an extremely strict system of medical ethics covering approval for medical research. In the spirit of this Bill, therefore, we did not think it right to make a blanket exclusion of those who lack capacity. As someone put it to me so memorably, a person who is disabled or lacks capacity may still have the capacity to want to give. I took that comment to heart and we should not exclude those individuals.
That point leads me on to the key issues of communication and advocacy. The Bill goes a long way towards improving the requirements for information that must provided to individuals when they are making decisions. However, Members on these Benches are of the view that much more needs to be done to ensure that, where someone lacks capacity, the person making the decision must provide adequate and appropriate communication to ensure that the individual with incapacity is as fully involved as possible in the decision-making process and in living with its consequences. The organisation Rescare made powerful representations to the committee showing just how long it takes to develop an understanding of the wishes of someone with very severe communication difficulties. In addition, I was told recently about some very interesting research being carried out with people with learning disabilities. The researchers found that if one writes out a description of an injection, only a few would understand it. If one gives an oral description of an injection, a few more would understand. However, when one makes a presentation of an injection with an accompanying oral explanation, lots of people understand what an injection is. I think that we are trying to establish a legal framework within which best practice and communication of that nature becomes the norm right across a whole set of disciplines.
Both the Minister and the noble Earl, Lord Howe, referred to advocacy or, to quote the curious phrase used in the Bill, independent consulteeship. Not surprisingly, we think that the provisions set out in the Bill are far too limited and that it is important to make a clear statement about the role of the independent consultee: it is to advise individuals, not to make decisions for them. We also believe that it is wrong to limit the provision of consulteeship to those who have not a friend in the world. It presupposes that the views of those who do have friends and relatives will always concur, although quite frankly that is often not the case. Profound disagreements can arise among family members and individuals about what they want and 25 what would be best for them. When dealing with professionals, advocacy is often needed for friends and families in trying to establish what it is that a person wants. So I have to say that we do not think that these solutions are workable as they stand.
As one of a number of Members of this House serving on the Joint Committee scrutinising the Mental Health Bill, I am rapidly becoming very familiar with the Bournewood gap, and I shall leave it to the Minister to give a full explanation to the House.
In summary, the noble Earl, Lord Howe, is right: cases have arisen where individuals who lack capacity have become voluntary mental health patients, but then have been subject to detention. That has been found to be unlawful. We should note that the same situation could apply to many people in residential care, and thus we begin to see the scale of the problem. Having visited a group of mental health service users just before Christmas, this is not so much a Bournewood gap as a Bournewood chasm; it is going on all over the place. The Government have promised consultation and I think that there is now an urgent need for proposals to be brought forward.
I shall deal briefly with powers of attorney and financial abuse. Throughout all the deliberations on the Bill in which I have been involved, I have said that there are many more vulnerable people at risk of having their financial affairs and property dealt with in ways they would find inappropriate than there are those at risk of being subjected to inappropriate medical treatment. The proposed extension of powers of attorney to cover welfare matters is welcome in one sense, but what is not clear and may be lacking is how the system is to Work in practice. We question the extent to which the Court of Protection and the Public Guardianship Office will or will not have the power to examine the use of powers of attorney once they have been registered, thereby preventing abuse. I remain quite exercised about this.
When the Scottish Executive reviewed its legislation, a "springing power" was discussed; that is, the provision of a trigger to bring into force the power of attorney arranged by someone who has capacity for someone who does not. I understand that in Scotland GPs issue certificates of capacity, but that is not being proposed in this Bill. I want to know how the Government envisage such powers of attorney becoming operational and how those dealing with them—banks and other institutions—will know that they are in place.
Finally, I shall make two points. The extent to which this Bill becomes a reality for people will depend entirely on the extent to which training is provided for professionals, the voluntary sector, solicitors and CPNs. At that point these provisions will become not just legislation or a code of practice, but a way of life for those professionals dealing with people who lack capacity.
Last year, the Making Decisions Alliance held fringe meetings at all the party conferences. I attended one which was addressed by a gentleman who had been subject to compulsory mental health treatment after his condition was nailed down to the degenerative brain disorder, Lewy's disease. He spoke very 26 movingly about his life and this legislation. He was knowledgeable about the Bill and what it would mean to people like him, and he understood its imperfections. He ended by saying the following:
This is nothing short of a Bill of Human Rights for people like me, who know that they will inevitably lose their capacity to think, but who, above all, want to retain their dignity".It is our task to send from this House a law that will do exactly that.