Mental Capacity Bill

– in the House of Lords at 3:44 pm on 10th January 2005.

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Second Reading debate resumed.

Photo of The Bishop of St Albans The Bishop of St Albans Bishop

My Lords, back in the 1960s, when I was a university student, I worked one summer in a Barnardo's home. It was a home for severely disabled children: they were disabled mentally and they were disabled physically. It was run by a husband and wife team who in my eyes seemed to be saints. They were gentle, compassionate people who dedicated their lives to the children in their care. I have never forgotten them. Their sheer goodness and humanity influenced me deeply.

There are, as we all know, similarly saintly people working with and caring for the most vulnerable people in our society 50 years later, now that we are in the 21st century. I meet those people in hospices, in care homes, in psycho-geriatric wards and of course I meet them in all those parents, grandparents and carers at home who do so much for those who are very vulnerable and whom they love.

What this Bill does—I believe with the noblest of motives—is to ensure that the most vulnerable in our society are dependent not solely on the compassion and care of others for their own well-being, no matter how saintly and dedicated those carers might be. What it does, as a Bill, is to proclaim very loudly and clearly that all people, especially the most vulnerable, have absolute worth and value in their own right. This Bill, I believe, in its own way marks a significant moment in our national history and self-understanding—what the noble and learned Lord the Lord Chancellor referred to in his opening speech as a cultural shift. It is based on the fundamental premise that all human beings matter—and matter absolutely.

I welcome this Bill, therefore, very warmly. It is about the dignity and potential of all people—especially and particularly those who could be most at risk from the unscrupulous, the downright wicked or those who take a perverse delight in exercising arbitrary power over other people.

As we all know, there has been some confusion about whether or not this particular Bill might allow what has been dubbed "euthanasia by the back door". It has been suggested that that could be achieved through the use of advance directives or through the exercise of power by those given lasting power of attorney. I understand fully the concern of those who want, as I do—I repeat "as I do"—to ensure that neither of those possibilities could come into being. For my own part I believe that Clause 58 would prevent such things happening, and I am aware of, and very grateful for, the letter written by the noble and learned Lord the Lord Chancellor to the Roman Catholic Archbishop of Cardiff. However, for the complete avoidance of doubt, and on the basis that it is always better to say things twice in the hope that you might be heard if not the first time at least the second time, may I ask the Minister whether she will give the House the assurance that the text of this Bill cannot, in law, be used to introduce euthanasia into our society either by commission or by omission?

There has also been some concern expressed about the research aspects of the Bill. Using vulnerable people, or indeed anyone, as means to an end is obviously not ethically acceptable—even where that end is believed to be good. I recognise that a number of disability groups welcome the research potential of this Bill, but nevertheless I remain uneasy. Can the Minister assure the House that the complex ethical issues which exist inside this whole area of medical research will be subject to the most careful scrutiny before we go much further?

I know that hospitals and trusts have ethics committees but, from some of the concerns expressed to me, while people usually have confidence in the ways such committees scrutinise research protocols, they sometimes have less confidence in the capacity of those committees to deal with the broader ethical issues that they might face if the Bill became law. For example, could it be ensured that ethics committees should have at least one member who has studied philosophy and ethics at least at first degree level? I think that would help.

I have raised two questions but I want to end this brief speech on a note of appreciation. Many of us—the Church of England and all the other Churches—have been invited to give comment and to offer a critique. We have been asked to do so on a number of occasions long before the Bill reached this House. The sheer courtesy and thoughtful care with which those talks with the Churches and with user groups have taken place has been deeply appreciated and marks, I hope, a way of bringing draft legislation to this House which might well be a useful and creative model for the future.

I inadequately express my thanks to all those who have spent so many years trying to get this measure right. I warmly welcome it as a sign that all people matter in our society, and matter absolutely.

Photo of Lord Carter Lord Carter Labour

My Lords, as chairman of the Joint Committee on the Draft Mental Incapacity Bill I take this first opportunity to thank my committee, our special advisers, Professor Anthony Holland and Ms Penny Letts, our clerk, Mr Gordon Baker, and his team for the excellent job that they all did. I should also thank Susan Johnston and the Bill team for the excellent help that they provided.

A particular word of thanks is also due to my noble friend Lord Filkin, who was the Minister in charge of the Bill when we reported. He dealt with the committee in the most painstaking and courteous way and took endless trouble to meet a large number of the witnesses, sometimes more than once, before deciding on the Government's response.

I am, of course, delighted that the Government accepted the great majority of our recommendations and perhaps I can modestly say that on a Bill of this nature our work showed the value of thorough pre-legislative scrutiny. The framework of law created by the Bill has been in gestation since the late 1980s, but despite all the consultation and all the other work that has gone on, there was still enormous value in having a draft Bill on which to take evidence and report.

At a lighter moment in our consideration we took evidence from the Royal College of Psychiatrists who pointed out that, technically, inconsistency could be taken as a sign of a lack of capacity. I remember observing that I thought that was an extremely brave thing to say in the Palace of Westminster. We also took excellent evidence from a group of learning disabled people. I believe that was the first time they had given evidence to a Select Committee.

As my noble and learned friend the Lord Chancellor said, the Bill is about much, much more than advance decisions and the withdrawal of life sustaining treatment, although the comment surrounding the Bill might suggest otherwise. In my view it has not been particularly helpful that the debate on the work of the Joint Committee and the Bill itself has to some extent been hijacked by comment which, although sincerely meant, could cause great distress to those who care for people who lack capacity. Of course, there is an important debate to be had about these issues but the Bill deals with many other important matters of policy that are crucial to the rights and protection of those who lack capacity.

The Bill creates a new statutory framework for an area of law that previously relied almost entirely on the common law. The practical importance of this was brought home to me in a directly personal way. While I chaired the Joint Committee I also served as "best friend" on a protective order for an elderly lady who had Alzheimer's and no close relatives. The receiver on the order was a local solicitor who handled all matters concerning finance and administration, but I took all the decisions relating to her health and welfare, including the choice of the right care home for her. It was quite a shock to discover that I had no real protection in law and that if a relative had turned up and challenged my decisions, it would have been for the court to decide whether I was acting within the common law concept of "best interests".

This leads me to ask my noble friend the Minister about the timetable for implementation after Royal Assent. I entirely understand that some parts of the Bill, for example that relating to the setting up of the Court of Protection, will take some time to be implemented. However, am I right in assuming that what might be termed the "conceptual parts" of the Bill relating to capacity and best interests will come into force after Royal Assent?

The elderly lady I referred to has sadly died, but if she were still alive this summer and I remained involved with her protection order would the statutory framework of the Bill be available to me in defending my actions in terms of her best interest, or would I still have to rely on the protection of the common law?

My noble friend the Minister will know that the noble Lord, Lord Carlile of Berriew, as chairman of the Joint Committee on the draft Mental Health Bill, of which I am a member, and myself as chairman of the Joint Committee on the Draft Mental Incapacity Bill, have written jointly requesting the Government's proposals for dealing with the relationship between the Mental Health Act 1983, the "Mental Capacity Act 2005", as I hope this Bill will become, and a new mental health Act, which might not reach the statute book before 2006 or 2007.

There are so many areas to discuss, and I will mention just three of them in the time available: the Bournewood gap, advanced decisions, and withdrawal of life-sustaining treatment and research. I sympathise with and understand the problem faced by the Government in dealing with the Bournewood gap. The European Court of Human Rights has found that the appellant in the Bournewood case had been deprived of his liberty in the meaning of Article 5.1 of the convention. I emphasise that the court was concerned only with the deprivation of liberty of an incapacitated person, not his treatment. The Government are in breach of the convention, but I appreciate that there needs to be some wide consultation and there may be substantial resource implications. It would take too long to wait for a new mental health Act, which, as I said, may be two years away.

One way out of the problem would be to set out in this Bill the broad criteria to deal with Bournewood, and link this to an order-making power to deal with the detailed implementation later. I would appreciate the Minister's comments. I know that the Government are exercised about the problem, and they really must try to deal with it in this Bill.

There has been much comment around the question of advance decisions and the withdrawal of life-sustaining treatment, particularly artificial nutrition and hydration, with some of that comment not wholly accurate. To put the matter in context, it is worth recalling the words of the noble and learned Lord, Lord Browne-Wilkinson, one of the five Law Lords who produced a unanimous judgment in the Bland case in 1993:

"I have no doubt that it is for Parliament, not the courts, to decide the broader issues which this case raises . . . it seems to me imperative that the moral, social and legal issues raised by this case should be considered by Parliament".

That was nearly 12 years ago. The Government are to be commended for bringing forward legislation to deal with this sensitive area of law. We should remember that the Bland judgment dealt with a specific situation involving someone who had been in a persistent vegetative state for three-and-a-half years. I understand that there have been only some 36 Bland-type cases in the 12 years since the judgment. I will quote the recommendation of the Joint Committee on this question:

"We recommend the Bill should permit the making of advance decisions to refuse treatment. We recognise the genuine and deeply-felt concern of those who have moral objections to any decision being taken that could end life, but that right is recognised in law for those who are capable of making such decisions and we think it is right that the Bill should provide for those who wish to do so to have the legal means to have that decision respected should they become incapable. In doing so, the Bill should aim to set standards for good practice and ensure a means of challenge under circumstances where there were disagreements that could not be resolved".

We also asked the Government to include a declaratory clause making it clear that nothing in the Bill permits euthanasia or alters the law relating to it. The Government have done that in Clause 58.

As a Roman Catholic, I was pleased to see that the Roman Catholic Bishops had dissociated themselves from the campaign to have the Bill killed at Second Reading either in the Commons or here. They recognised the sheer irresponsibility of killing the whole of an important Bill because of one contentious part.

We also considered the question of giving legal force to advance statements of wishes requiring treatment rather than refusing it. We were advised in good faith that this was not possible because while a person was able to refuse treatment under the law, it was not possible legally to insist on it. That interpretation now seems to have been turned on its head by the Burke judgment in July last year, which found that,

"the decision as to where his best interests lie, and to what life-prolonging treatment he should or should not have is in principle determinative."

As I understand it, the Burke judgment means that if an advance decision to refuse treatment is determinative, then an advance request for treatment—for example, a request that artificial nutrition and hydration be continued in the case of incapacity—is equally determinative. If the Burke judgment had been available to the Joint Committee, I am sure that we would have recommended changes to the draft Bill to reflect that judgment. I have no doubt that amendments will be tabled to that effect.

I do not intend today to go into all the arguments surrounding this issue; that is for Committee and the later stages of this Bill. We shall have to consider carefully the best interests of four groups who lack capacity: those who have court-appointed deputy or deputies under the Bill; those with either an enduring or a lasting power of attorney; those who have independent consultees; and the great majority who will have none of those. The best interest of all those lacking capacity must be protected by clear statute and properly-drafted guidance. We shall look forward with interest to the amendments that the Government have promised to table to deal with this complex and sensitive issue.

I shall not go in to the pros and cons of research at this stage; that is a matter for later. The Joint Committee recommended that there should be research in certain conditions on people who lack capacity. We listed the six key principles that govern research, as enshrined by the World Medical Association, and in addition the specific issues that ethics committees should be obliged to consider when research includes people who may be incapacitated. I will put the matter simply: how will we ever develop treatments, perhaps even a cure for, say, Alzheimer's or motor neurone disease, unless research is carried out which, in the language of the Bill, has negligible risk, does not interfere with freedom of action or privacy, and is not unduly invasive or restrictive?

When fully implemented, this Bill will create a statutory framework to protect the civil and human rights of the 750,000 who suffer from dementia, the 6 per cent of the population who suffer from schizophrenia, depression or serious bipolar disease, the five million carers in England and Wales who look after those who lack capacity, and all those in the medical and caring professions. These figures do not include those who have temporary or permanent lack of capacity through brain injury or other trauma.

We all know that there is a strong possibility of an election this spring. We do not want this Bill to end up in the inelegantly termed "wash-up" at the end of the Parliament, when the completion of one Bill is traded for the completion of another. I have been there, and I know what happens. There is time to give this Bill the proper consideration that it should receive and ensure that it is safely on the statute book in good time to help the millions who will benefit from its provisions. I am sure that the House will do so.

Photo of Baroness Chapman Baroness Chapman Crossbench

My Lords, as one of the latest recruits to this House, I would like to express my heartfelt gratitude for the help and support of your Lordships and the staff of this House. In every other new environment that I have entered, either as a volunteer or an employee, once there I had to work on being accepted. It was a little confusing, but a true revelation, to discover that membership and acceptance are one and the same in this wonderful place.

I am a Yorkshire lass, born and brought up in Leeds. My background is very different to that of most people in this House. My education began at home, tutored by my parents, and later supported by a tutor provided by the local education authority for three hours a week. When I was eight, I entered segregated education, then mainstream further education college, and then university. That was followed by unemployment. While out of work, I volunteered as an IT tutor at a centre working to rehabilitate young offenders. That soon developed into an almost full-time voluntary post, as I also helped with job applications and benefit claim forms, taught some numeracy and literacy skills and worked on social skills in given situations.

It was with regret that I left after seven months to take up full-time employment in a clerical post with my local council. Over the next few years, I worked my way up within the council until I attained a tutoring position in an adult education centre. I worked at different projects with a variety of people from a broad spectrum of the community, and I continued to enjoy teaching for several years.

I had to give up full-time employment about 12 years ago due to several severe leg fractures, which failed to heal. From there, I began acting as an advocate for people who felt unable to deal with issues themselves. That led me to voluntary working with Habinteg Housing Association, Leeds Centre for Integrated Living and Leeds United association football club. I became more involved in disability rights, particularly focusing on independent living issues and the right to access work and leisure facilities, including sports stadiums. As I gained more knowledge and experience, I was asked to join committees at local, regional and national levels to promote social inclusivity and disability equality.

Without descending into the realms of controversy, I have to say that I have grave concerns about the Bill. People are born and they die; those are the only two certainties in life. I have no doubt of the good intentions around the introduction of the Bill, but we must not lose the basic premise of a right to live in order to allow people the right to die. Although I can accept some of the arguments for sections of the Bill, it is virtually impossible for legislation to allow such measures in a way that is not open to the abuse of a licence to kill.

Assessment of "best interest" and "burdensome" should not be medical-model based, and should not focus only on the negative aspects of a person's condition. A situation that appears intolerable to people who are fit and well may be more than outweighed by the positive experiences of the patient. They have family and friends, relationships that are part of them being a rounded individual and not simply a condition or impairment. There is a clear line between increasing pain-control medication that may hasten death and withdrawing support that causes death. That line is the quality of life of the patient, however little life remains.

I feel that at this point I should declare an interest. If the Bill had been passed 43 years ago, I would not be here. My parents were told that I would be blind, deaf, unable to communicate and have no noticeable mental function. Doctors and practitioners do get it wrong. We need to ensure that people have the opportunity to prove the medics wrong. Although protected from the Bill as a child, there would have been two or three occasions after childhood where, from a purely medical perspective, treatment could have been withdrawn from me. The Bill ignores the fact that people have a basic right to life; that issue cannot and must not be ignored.

As I feel that I am beginning to cross the line into controversy, I will end by saying—I hope that noble Lords agree—that our first duty to the people of this land is to keep them safe. The less able and more dependent they are, the greater is that duty. As it stands, the Bill does not keep people safe.

Photo of Lord Rix Lord Rix Crossbench

My Lords, as a Yorkshire lad I must congratulate the noble Baroness, Lady Chapman, on her remarkable and moving maiden speech, garnered no doubt from many years of personal and—I would hazard—heartbreaking experience. We welcome her most warmly to the House, and to the Cross Benches. Her wisdom and personal commitment will be of the greatest benefit to us all, and we look forward to many more contributions in the years to come.

I welcome the Bill most warmly, especially given that, as stated by the noble and learned Lord the Lord Chancellor, it has been 15 years in the making. As it is an extremely serious and important Bill, I shall refrain from any jokes about gestation and the length of time that successive governments have taken to bring it before us. I pay tribute to the noble Lord, Lord Carter, under whose excellent chairmanship I sat on the Joint Committee which scrutinised the draft version of the Bill. I also declare an interest as joint chairman of the All-Party Group on Learning Disabilities and as president of Mencap.

There are three crucial issues to be addressed if we are to draw the protracted search for clearer law and better practice to a successful conclusion. The first is striking the right balance between autonomy and protection. I venture to suggest that we are fairly close to getting the balance right. The heat generated by the issue may surprise some people, but it should not surprise those who have seen people's views ignored and their lives taken over by others because they have a learning disability. Nor will it surprise those who have known people suffer unnecessary pain and even die because they could not consent to the treatment that they needed.

The second issue is rather like the parable of the tares among the wheat. End-of-life decisions are a very small part of what the Bill is about but, as suggested by the servant to the householder, it has been very tempting to weed them out. I am relieved that that has not happened. The third issue is independent advocacy, which is crucial because it goes to the heart of supporting autonomy and providing protection for vulnerable people. It is an issue which has been around since the Disabled Persons (Services, Consultation and Representation) Act, known in the disability world as the Tom Clarke Act, which I should stress has remained only part-implemented for nearly 19 years.

I pay tribute to the Government for not abandoning the Bill on the grounds that they may face another heated debate on euthanasia and independent advocacy. The business of government is to do the right thing, even when that is not an easy option.

I turn first to the debate around end-of-life decisions. It was something that we wrestled with for quite some time in Joint Committee before arriving at the conclusion that the Bill should permit the making of advance decisions to refuse treatment, and should permit the making of lasting powers of attorney, albeit with various important safeguards. I will leave it to others to decide whether our Joint Committee was right, and I can only hope that the government amendments in that area of concern will be a compromise acceptable to all engaged in the debate. However, I must declare a personal interest, for both my wife and I have written so-called living wills. I would welcome a detailed pro forma being inserted into the code of practice to assist laymen like me on the appropriate form, wording and content that living wills should take.

The Bill is fundamentally about empowering people to make as many decisions as they can or to be as big a part of the decision-making process as possible. There is a powerful enabling ethos at the Bill's heart, and it is for that reason that I have been supportive of it throughout. Yet there is a clear policy gap between what the Government hope to achieve and what will actually be achieved through this legislation, particularly in the realm of independent advocacy.

It was that policy gap which the Joint Committee tried to fill by recommending that the Bill include a provision to meet "all reasonable requirements" for independent advocacy services for incapacitated adults. I am therefore extremely pleased that independent advocacy is now in the Bill, albeit disguised as independent consultees, and that the Government are committed to establishing nationwide guidelines, standards and training for that vitally important service.

It seems clear that the Government now want independent consultees to perform the same role as disabled people want them to perform—that of a well trained, highly skilled independent advocate able to use their expertise and knowledge of the health and social care system to ensure that the wishes and feelings of a person lacking capacity are properly taken into account in best-interest judgments. "Advocacy plus" was the term used repeatedly in Committee in another place. Given this, I hope that the Minister will now accept that, having changed the function to one of "advocacy plus", we should now come clean and call it "advocacy" on the face of the Bill. I hope that the Minister will forgive me if I use the words "advocate" and "advocacy" from now on in the hope that the Government will follow my example.

However, while the £6.5 million to resource this new advocacy service is very welcome, in practical terms it amounts to little more than one extra independent advocate per local authority. The Minister will know that I wrote to her recently saying that I would not be pressing for a right to an independent advocate in all circumstances but I did not mean for the Government to be as cheese-paring as that.

When even the unwaveringly diplomatic Disability Rights Commission says openly that the Bill needs more independent advisers for it to work, I believe that the Government need to listen very carefully—especially when the DRC advice is echoed by the Making Decisions Alliance, which embraces the majority of all major disability organisations, by the National Centre for Independent Living, which is a member of the I Decide coalition and, perhaps above all, by my fellow chairman of the All-Party Group on Learning Disabilities, Tom Clarke, who, with his amendments at Report stage in another place, urged the Government to broaden the range of situations in which an independent advocate could be involved so that more vulnerable people could benefit—for more vulnerable people must benefit. I was pleased to hear the noble and learned Lord, Lord Falconer, say in his introduction that regulatory powers would be taken to extend the situations which could involve independent advocates.

Disability campaigners are, on the whole, reasonably realistic and, as indicated in my recent letter to the Minister, they just about accept that an unlimited range of situations in which an independent advocate could be involved is, at this stage, beyond the bounds of possibility. However, like Oliver, they are asking, as I am asking, the noble Baroness, the Minister—the mistress of the workhouse, as it were—for more, especially on the face of the Bill. Without that extra bit of life-enhancing gruel, the disappointment of the disability movement would be intense. It feels strongly that now that the Government have made it clear that independent advocates will need to be highly skilled and experienced practitioners, it is vitally important that people who lack capacity do not miss out on this invaluable first rate assistance simply because they have family or friends to help them to express their wishes and feelings.

Your Lordships might recall that the original Bournewood case, to which several noble Lords have already referred, concerned a gentleman who had a substitute family but, for whatever reason, did not have anybody who could immediately arrange a hearing on his behalf—a hearing which could possibly have avoided much of that which followed. While I accept that advocacy alone would not have solved what has become known as the "Bournewood gap", it could certainly offer part of what is needed to fill that gap.

The Minister may argue in her response that family carers would not want an independent advocate to become involved in helping their loved ones and, being a parent myself, I have some sympathy with that point of view. It should be possible to agree that having a family carer does not rule out having an advocate as well and I am sure that there are many parents—especially the elderly—who would welcome a considerate and knowledgeable supporter. No doubt there will be much discussion on this rather delicate issue during the passage of the Bill through your Lordships' House, not least around the crucial role for citizen advocacy and I trust that this service will also receive full Government support and encouragement.

This must rank as one of the most misrepresented Bills ever, and that misrepresentation helps to explain its lamentably slow progress. If, as I hope, the Mental Capacity Bill reaches the statute book in much its present form, but with some judicious amendments along the lines that I have touched upon, many thousands of people will have secured greater respect for their views, preferences and choices; many thousands of people will enjoy better support in expressing what they want; and many thousands more will gain greater dignity, better treatment and happier lives. No Member of your Lordships' House could ask for more than that.

Photo of Baroness McIntosh of Hudnall Baroness McIntosh of Hudnall Labour

My Lords, I congratulate the noble Baroness, Lady Chapman, on her extraordinarily powerful maiden speech. It would be a hard heart that would not have been moved, but it also behoves us all to have heard what she said and to reflect on how it bears on our consideration of the Bill. I intend to make only a brief contribution to the debate, because I recognise that, with a list of speakers as distinguished as those declared for today, enthusiastic amateurs such as I would do best not to hold up proceedings for too long—particularly when there is an inevitable danger of repetition, for which I apologise in advance.

I support the Bill and I hope that it will pass into law as soon as possible, substantially as we see it today. I declare an interest as a member both of the Joint Committee which scrutinized the Bill when it was in draft form—I add my thanks and congratulations to my noble friend Lord Carter, who, as has been said by others, was an exemplary chairman and we benefited hugely from his wisdom and guidance—and of the Joint Committee which is currently looking at the draft Mental Health Bill, which is not irrelevant. I hope that your Lordships will forgive me if I digress for a moment to observe that pre-legislative scrutiny, of which I have been privileged to be part now on three Bills, is a vitally important addition to the legislative process, as my noble friend Lord Carter has said, and one which I hope that this Government and their successors will continue to develop, for that process is not yet perfect.

One refinement from which it could benefit, as I hope my noble friend the Minister would agree, would be the availability to Joint Committees on Bills such as this and the draft Mental Health Bill of draft codes of practice, preferably simultaneously with the publication of the draft Bill, but, in any event, sufficiently soon for a committee and witnesses to judge whether such codes are likely to prove robust enough to bear the weight that is inevitably placed upon them.

The Mental Capacity Bill was, as your Lordships have heard, originally called the Mental Incapacity Bill. The Joint Committee recommended the change and I believe that it was among the most important actions we took; for it made the point that the Bill was as much about what people can achieve as it was about what they could not achieve. The impact of the evidence that we received directly from people with impaired capacity, which was some of the most impressive and moving we heard, taught me that the Bill's firm presumption in favour of capacity, enshrined in the general principles which underpin it, and its stress on best interests, make this legislation necessary and distinctive.

If it is to be effective, however, it will need to be backed not only with a strong and unambiguous code of practice, but with sufficient resources to underpin the much higher levels of support and intervention necessary to make good the promise that the Bill holds out to vulnerable people—and for those who fear that they may become vulnerable later in their lives—that their interests will be better protected in future. We learned in evidence how easy it is for people with impaired capacity to lose opportunities to influence the way their lives are ordered simply because, as the noble Baroness, Lady Barker, pointed out, involving them in decision making can sometimes be a painstaking, time-consuming business. I refer your Lordships to subsection (2) of Clause 3, which states:

"A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand a general explanation of it given to him in a way",

I should emphasise,

"that is appropriate to his circumstances (using simple language, visual aids or any other means)".

Behind that simple statement lies a potentially complex reality—the cost in time and money of helping someone to make the best possible use of the capacity he or she has will sometimes be high, but we must ensure that service providers are trained and resourced to be able to meet their obligations under this legislation. I hope that when she comes to reply my noble friend will address that point.

Other noble Lords have referred to the so-called "Bournewood gap" and I have no doubt that it will be referred to again, so I will confine myself to supporting the view that an early resolution, probably through the Bill, of the difficulties presented by the recent judgment in HL v UK will not only help to make the Mental Capacity Bill more effective, but will considerably assist the work of the Joint Committee looking at the draft Mental Health Bill. The relationship between these two pieces of legislation is critical in a number of areas, not least when it comes to definitions of mental disorder, and the Bournewood case gives us the clearest pointer to the importance of ensuring that they are scrupulously integrated, as my noble friend Lord Carter has already pointed out.

There is, of course, one issue which has turned the Mental Capacity Bill into a cause of concern for many people—the provision for advance decisions to refuse treatment. It has already received detailed attention from other noble Lords and I fear will vex this House as it has vexed those in another place.

For the record, my own view accords with that of the Law Society, which says:

"An advance decision is an important mechanism that people can use, if they wish to do so, to inform medical professionals about the type of treatment they do not want to receive. No one can ask for, and be given, unlawful procedures and nothing in this Bill would permit any form of euthanasia. The law relating to murder, manslaughter or assisting suicide is unchanged. We welcome the Government's commitment to provide additional safeguards to ensure that advance decisions about life-sustaining treatment must be recorded in writing and witnessed".

It goes on to say:

"We also welcome the Government's undertaking to make clear that anyone assessing best interests is expressly prohibited from being motivated by a desire to bring about death regardless of best interests".

I, too, welcome those undertakings and look forward to seeing the Government's proposed amendments in due course. I wish the Bill a swift and safe passage through your Lordships' House.

Photo of The Bishop of Worcester The Bishop of Worcester Bishop

My Lords, I echo the sentiments of all those who have paid tribute to the work that lies behind the Bill. I regard the Government's actions in bringing it forward as courageous, and the noble and learned Lord the Lord Chancellor introduced it in a way that I found both courageous and compassionate. I echo fully the words of my right reverend colleague the Bishop of St Albans, except perhaps in that he was somewhat modest about his own contribution to the consultative process.

The result is not just a Bill with important protections for vulnerable people; Clause 1 contains a statement about a vision of humanity and how humanity is to be regarded. I hope children in generations to come will study that as one of the clearest and most eloquent expressions of what we think a human being is and how a human being is to be treated. The Bill has relevance far outside its concerns, so, in that sense, I am very pleased to take part in the process in which it is debated and scrutinised.

Having said that, I want to address fairly directly the most controversial points that are being made about the Bill, and I do so in the context that this is not a Bill about other people. Behind the faces of all of us in this Chamber is a wealth of experiences—no doubt some are very intense and personal—in which we have had to make decisions covered by the language of the Bill. Therefore, in that respect, it is not a Bill about other people.

But it is also not a Bill about other people in another important respect. Although we rightly have in mind those whom we see around us who, in some long-term or very intense way, lack capacity, the Bill is fundamentally about my future and that of all noble Lords. Unless we happen to be among those who die suddenly and without the possibility of medical attention, we all have before us some moments, weeks, months or years when we shall lack capacity. I think we have all assumed that at those difficult and crucial moments we shall be able to trust those around us to sustain us with the love, concern and compassion with which we have been supported throughout our lives. That seems to me to be absolutely basic. The Bill sets down in writing and in a legal framework the basis of the trust that we shall be treated in accordance with the principles contained in Clause 1.

First, it is important to consider the discussion of the right to life in that context. I am extremely clear that this is not a Bill about euthanasia—either in intention or in practice. I am very clear that those who support euthanasia and who use support in the debate on this Bill as a sign that they can expect sympathy when they bring their Bill to this House, if that is what they choose to do, are greatly mistaken. I believe that there are extremely important differences and that the opposition to assisted suicide in any form must be robustly sustained. That is not what the Bill is about.

Secondly, it seems to me that part of my absolute right to life is the right not to have things done to me against my wishes, without my consent and in abuse of the principles contained in Clause 1. The life which we have been given as human beings contains, by long and well established tradition, the right to refuse burdensome treatment. What I am entitled to refuse when I have capacity I should be entitled to refuse in anticipation of the time when I do not. Those who love and care for me and who gave me my capacity throughout years of upbringing, care and compassion, or those of future generations, should also be able to exercise the same compassion which will value me as a person in the same way and sustain my right not to be treated in a manner to which I have not given, and would not give, my consent and which is not in my interests.

Therefore, I submit to this House that we should support the Bill and, indeed, that we should regard it as historic. As I said, it is not a Bill about other people. That means that in our debates we shall face setting side by side the different experiences that lie behind our views. Those experiences can often be very painful but they are always extremely important. It was extremely important that early in the debate we heard the powerful maiden speech of the noble Baroness, Lady Chapman—for all that it might seem to point in a different direction from my own experience. That is part of what a serious debate about a fundamental Bill should be.

I renew my congratulations to those who brought the Bill forward and to all those who worked to make it what it is. I believe that it states what is fundamentally right. In the course of Committee we shall no doubt improve and tighten some of the wording, but we shall never take away the powerful and eloquent statement in Clause 1. That should underlie our treatment of one another in all circumstances and for all purposes.

Photo of Lord Clarke of Hampstead Lord Clarke of Hampstead Labour

My Lords, I hope that by the end of this Second Reading debate my noble friend will be able to assure the House and the very many people outside Parliament that their serious concerns—I share their concerns about parts of the Bill—and their views will be respected and acted upon. I also hope that she will make the position clear and unambiguous in order that the debate on the central issues that concern me and many others can be put to bed very quickly in our deliberations.

Many positive parts of the Bill are worthy of the support of Parliament. It is my hope that during its progress we shall not lose sight of the fact that the Bill, suitably amended, could make a tremendous difference to the day-to-day care of people who suffer mental incapacity and that carers could receive greater protection and obtain reassurance. The vital job that they do—at times in very difficult circumstances—requires us to provide that extra degree of protection and reassurance.

While recognising the difficulties that face the professionals, who do such a wonderful job, at the same time we must be cautious that what we do does not lead to the Bill being an instrument for euthanasia if it is not amended and amended clearly. I share the fears of those who believe that the Bill will, if not amended, be a vehicle for the legalisation of euthanasia by omission. Reflecting on the debate in the other place, I have been struck by the powerful cross-party coalition of MPs who campaigned for amendments to the Bill.

Like others, I do not want to see your Lordships' House bogged down in a debate on euthanasia. I am, therefore, pleased to see that the Government have given an undertaking to adopt the spirit of the Commons amendment, new Clause 1, in a government amendment to be tabled and I welcome the statements made by the noble and learned Lord the Lord Chancellor when he introduced the Bill. I hope that the amendment will fully meet the concerns that I and others hold. After the proceedings at Report stage in the other place, the Government have much to do and many bridges to mend with their own MPs. The amendment offers the perfect starting point.

In the other place the Labour MP Brian Iddon gave a particularly powerful speech in which he set out the dangers of legally binding advance directives or living wills as the press likes to call them, of which mention was made earlier this afternoon. For those of you who have not read his speech, I would like to highlight some of the points he raised as they are highly relevant to this debate.

Under the Bill, advance decisions to refuse treatment will become legally binding. That runs contrary to the equivalent legislation in Scotland, the Adults with Incapacity (Scotland) Act 2000, in which no reference is made to legally binding advance decisions. The Scottish Act adopted the recommendation of the 1994 House of Lords Select Committee on Medical Ethics that statutory force should not be given to advance decisions.

The Bill's proposals on legally binding advance decisions have come in for sustained criticism from the 23rd report of Session 2003-04 from the Joint Committee on Human Rights. It is clear from that Joint Committee report that the safeguards around advance decisions are far from satisfactory and give rise to serious concern about whether the current proposals are compatible with the European Convention on Human Rights.

I accept the good intentions of the Government in introducing the Bill, but I urge the Minister to reflect on what is being proposed, particularly on legally binding advance decisions. Why are we adopting a position different from that in Scotland? Why do the Government no longer accept one of the key recommendations of the House of Lords Select Committee on Medical Ethics? Those are key questions that need answering.

In his powerful speech in the other place, Brian Iddon observed how advance decisions or living wills have for years been a key component in the drive towards legalised euthanasia. It is, therefore, far from unreasonable for us to be gravely concerned about the long-term implications of the Mental Capacity Bill on our own legal prohibition against euthanasia when living wills form part of the statutory framework introduced by the Bill. It would be extremely helpful if the Minister could set out quite clearly today the Government's position on euthanasia, particularly as there is currently a Bill before your Lordships' House which sets out to legalise the practice.

I appreciate that advance decisions will, in theory, be entirely voluntary and that no one will be forced to sign one. However, I understand that the Hammersmith Hospitals NHS Trust is offering all elderly patients a checklist which includes a tick-box form of advance decisions. No doubt other hospital trusts will follow suit. I fear that once advanced decisions are legalised, subtle pressure will be placed on all, particularly the elderly, to sign advance decisions refusing treatment, including assisted food and fluids.

I am advised that a Member of this House has recently given us a glimpse of where this is leading. It is said that that person argued that it is better for the elderly to kill themselves than be a burden on others. I admire the intellectual honesty of the Member but such comments represent a classic exposition of the slippery slope we could be going down. I urge the Government to proceed with great caution in this matter. People who sign advance directives are usually convinced that they are taking greater control of their lives, whereas in fact they may be giving up control. That is one of the dangers.

Legally binding advance decisions, as envisaged by the Bill, will make it very difficult for practitioners faced with the need to make rapid decisions in acute medical emergencies to decide when an advance decision is valid and applicable. Fear of litigation may well result in doctors withholding appropriate care with resultant harm to the patient. This is not about looking after the interests of doctors. If doctors are legally obliged to respect ill-advised, vague, but apparently binding advance refusals it is the patient concerned who will suffer.

In the other place, cross-party amendments were tabled at Report stage, in particular new Clause 1 and Brian Iddon's own Amendment No. 32, which drew substantial support from Labour Party MPs. The Government stand to gain a lot of credit from Members in both Houses if they respond properly to our concerns. If they do, we can avoid embarking on a protracted and divisive debate on euthanasia and devote sufficient time to many of the other issues raised by the Bill.

Photo of Baroness Greengross Baroness Greengross Crossbench

My Lords, I am one of those who has waited years for this legislation. I declare an interest as Vice President of Age Concern England. From the 1970s and during the many years that I worked with that organisation, I dealt with issues raised in the Bill. I was responsible for a book published in 1982, The law and vulnerable older people, which dealt with many such issues, including autonomy, choice, compulsion, representation, advance directives and so on. The advisory board which was influential included the then Master of the Court of Protection, a member of the Law Commission and a wide range of other experts. It dealt with the issues raised and made proposals for changes in the law which were largely supported by the Law Commission.

I have been passionately interested in these issues since I worked with children and young people earlier in my life and when I became aware that the law on the protection and representation of children was about 15 years ahead of that pertaining to adults and particularly to older people. That gap largely remains, although it may not be 15 years in arrears. The situation in relation to children and young people is still not quite right, as we know, although it is much better.

To a great extent, the Bill redresses that balance, but it cannot be described as rushed. It is now almost eight years since the Green Paper following the 1995 Law Commission report. As we have heard from other speakers, it is needed because currently there is no comprehensive statutory framework governing decision making in this area. That results in uncertainty and, sadly, in abuse.

The law is currently based on what can best be described as a kind of medieval custom through which decisions on behalf of someone who is incapacitated mentally can be made regarding their finances but not their health and welfare. This is illogical and outdated. As the former Lord Chancellor, the noble and learned Lord, Lord Irvine, said in his introduction to the Green Paper in 1997,

"the law is confusing and fragmented . . . carers . . . make decisions without a clear idea as to the legal authority for those decisions".

I am clear that this Bill is not about euthanasia. It is about giving choice to people: choice to refuse treatment in certain instances and, depending on the outcome of the Burke case, it may also give some people choice at least about what they would like in the form of treatment. An adult with capacity takes such choices, particularly the choice to refuse treatment, for granted and as of right.

I agree with the noble and learned Lord the Lord Chancellor that the Bill's overall approach is right. Everyone must be assumed to have the capacity to make decisions unless it is proved otherwise; no one should be labelled incapable; each decision should be considered individually. The Bill gives people who lack capacity the respect that other people take for granted. It ensures that their lives are valued and not assumed to be worthless because they are incapacitated.

There has been huge uncertainty among family and carers who have not had a right to be consulted. Of course, there is a danger of abuse within families but that exists with or without the Bill. The vast majority of care is loving and carers should be consulted. The danger of abuse is not a valid reason to avoid updating the law as long as appropriate safeguards are put in place. If further safeguards are needed, I hope that at the Committee stage we shall be very keen to see that they are inserted into the Bill.

I am very sympathetic to the Joint Committee's conclusion that advance directives should be written and witnessed by someone without a financial interest. I ask the Minister what safeguards will be built in specifically to root out financial abuse in lasting powers of attorney. I was staggered by the Joint Committee's evidence that 20 per cent of EPAs might be subject to financial abuse. I am very sympathetic to organisations such as Age Concern that favour incorporating the appointeeship system with the lasting power of attorney provisions of this Bill.

Increased longevity and medical advances have made conditions such as dementia much more prevalent than before. Recently, one expert has warned of "an epidemic of dementia". That is another reason why this Bill is essential and, as we have heard, it is supported by organisations such as Age Concern and the Alzheimer's Society.

People with dementia and other conditions can regain some of their capacity. It is not necessarily a continuous and permanent decline. Their condition can waiver between capacity, limited capacity and total incapacity. We do not use the American term "semi-incapacity"; perhaps we should consider it. I seek clarification from the Minister on how the Government will address some of these very difficult issues regarding definition.

I welcome particularly the Government amendments to eliminate discrimination against people who lack capacity. They must never be considered lesser mortals and, as the noble Earl, Lord Howe, said, left out in the cold. Worse than that, sometimes they are not considered at all. The Making Decisions Alliance's suggestion of an equal consideration clause may therefore have merit. But it is absolutely essential, as recognised in another place, that there are safeguards. The emphasis has to be on whether treatment is of benefit and of value and in the best interests of the patient and not a judgment on the value of that person's life. I believe that this Bill will lead us to value those with incapacity more, not lessen their value, as many people who are genuinely opposed to this Bill believe. The Bill should make it easier to deal also with conflicts of opinion as to whose best interests are being met.

I welcome also the establishment of a reformed Court of Protection and the Public Guardian. Both are long overdue. But, as other speakers have made clear, we should not confuse advance directives with lasting powers of attorney. I like the idea of independent consultees, although I am very sympathetic to the Making Decisions Alliance's argument that the provisions are too narrowly drawn. Clearly, difficulties remain and I hope that we will be able to iron out most, if not all, of them in Committee.

Some other areas of concern to me include the consent to research. Perhaps the Minister can clarify the Government's thinking on that. It may not have been what the patient would have wanted, but it might be of immense benefit to countless others in the future and could also benefit medical staff working with those patients.

I welcome the Government's commitment to redefine "general authority", as recommended by the Joint Committee. Like others, I am concerned at the potential implications of our increasingly litigious society. But there will always be problems in such a complex and sensitive area of decision making and its implementation. It seems almost a built-in dilemma that people who have to implement a decision which they think is wrong will seek to reinterpret that decision once a person is deemed mentally incapable.

In conclusion, we have been reminded that, while this Bill is not about euthanasia, it is important to recognise as well that it is not only about end of life issues; it is also of benefit to people who have conditions, perhaps lifelong or degenerative ones, which make them incapacitated permanently or indeed temporarily, such as those with Downs Syndrome, autism, those who have had a stroke, accident victims or even drink and drug abusers. I strongly support the Bill.

Photo of Lord Christopher Lord Christopher Labour

My Lords, I rise to welcome the Bill. I share some of the doubts which other noble Lords have expressed. The change in the Title is positive and should secure the greatest good for the greatest number, but I suggest that we need to be alert to some of the negative consequences. The presumption of capacity could easily lead to a failure to recognise incapacity and thus overlook the interests of the smallest number.

The noble Baroness, Lady Barker, referred at some length to the Scottish Act. It is important to emphasise that the Scots are four years ahead of us. That does not always seem to be realised. Without going on at any length on the matter, I think that we need to have more general information about the work that has been done as opposed to the detail from those who have had the opportunity of studying what has been done in Scotland.

The Scottish Executive commissioned a two-year study. It produced eight main findings, one of which was a major question for us, and begs the questions about how different our Bill is from the Act. The Act is probably meeting its central aim to provide protection. I think there are gaps in our Bill where protection, particularly in the financial area, is not provided for. The Executive has appointed a National Practice Co-ordinator with a large job description. We should be seeking some information about that.

Perhaps I may refer to one or two detailed points. I want to make it clear that I am doing so largely for illustration and certainly I am not looking to my noble friend for any answers. I hope we shall be able to discuss some of them informally. A number of them refer to unintentional consequences of the drafting of this Bill as opposed to what is probably the intention.

One concern lies in the proposed change under which the court will be able to refuse to register an LPA. The anxiety stems from those who are all too well aware of undue influence and the fact that a person may be vulnerable even if they have capacity to make some decisions.

As I understand it, under the Bill the court will have narrower scope for considering the suitability of a donee of an LPA, or indeed its cancellation. The result could lead to the court being compelled to register an LPA where today an EPA would not be registered—notwithstanding, for example, the significant conflict of interest between the donor and the attorney.

I have a lovely little example, but I shall save time and leave it out at this point—the "if"s and "but"s of considering the example would be lengthy. Under present arrangements a reasonable case by one son would almost certainly be supported whereas under the Act I am told it would not.

In a case with which I have been involved for the past two and a half years, and to which I will refer later, I am advised that some of the decisions of the Court of Protection might well not have been possible under the Bill. If so, in my judgment that would have been monstrous and one example would be that a disastrous LPA would have been approved whereas an existing EPA was not.

Staying with influence, at present notice of an application to register an EPA must be given to at least three relatives. Under the Bill—and lots of people have cheered at this—notice is to be given only to such persons as the donor names. That opens the door, I suggest, to manipulative, influential and self-serving prospective attorneys.

Next there is some concern that with the potentially wider scope of LPAs, there may be more situations where it is unclear whether an LPA has been revoked. There should be specific formality for revocation. It would certainly seem sensible for several reasons to give the court power to remove clauses from LPAs which, perhaps because of illegality, would prevent registration.

I see a problem over paragraph 3(2) of Schedule 1. It states:

"The court may declare that an instrument which is not in the prescribed form is to be treated as if it were, if it is satisfied that the persons executing the instrument intended it to create a lasting power of attorney".

I am worried that that paragraph drives a coach and horses through the requirement that there should be a prescribed form and a certificate certifying that the donor had the capacity to create the power.

In a memo to the Joint Committee, which did such a splendid job of work, Mr Denzil Lush, Master of the Court of Protection, opened his submission with this sentence:

"I support the thrust of the Bill, but I think it's weak in terms of protection".

I agree with that. More importantly Denzil Lush writes with about seven years' experience in his post. Noble Lords will recall that he said that there is financial abuse in about one in eight existing EPAs. Turning to more general aspects, including financial abuse—including the consequences of undue influence—and the dangers of the doctrine in Clause 1(4), he states:

"A person is not to be treated as unable to make a decision merely because he makes an unwise decision".

Whilst both aspects concerned Mr Lush, I do not see how the Bill addresses those concerns effectively. On both issues I speak from painful experience, and the press from time to time report other cases.

In a case I know well, Miss X at the age of 79 to 80 had the misfortune to require two periods in hospital for quite serious conditions. When she returned home, she was clearly not herself and clearly unable to work, to walk or to care for herself.

During the next five years, a succession of carers was employed part time, with one continuing resident carer, Miss Z, who is said to have taken an assiduous interest in more than welfare. An unregistered power of attorney was completed—although not, I think, used—and a succession of seven new wills was drawn up, each one advancing the prospect of Miss Z. It would appear that all the financial transactions that took place during the five years were performed in Miss X's name, Miss X compliantly approving and signing cheques and related papers. Of course, "compliantly" was not the word used by Miss Z during the investigation.

In a very few words, £950,000-worth of investments were sold—resulting, in passing, in a huge capital gains tax bill and, among other things, crazy investments were made. During five years, a tad under £1.5 million of income and capital went in and out of the bank account and her income was reduced from £40,000 to £10,000 a year.

In my mind, the history of this case demonstrates beyond doubt that, without some qualification, Clause 1(4) is ludicrous. A succession of unwise decisions reduced income to the point where she could no longer afford to stay at home and pay carers without external support—which, happily, was forthcoming. There are lessons in that case that need to be considered under the Bill. Friends and family were driven away—which needs more widely to be understood as an implication. A long list of professionals—solicitors and accountants—all had anxieties that they expressed afterwards but had nowhere to go to take them. I suggest that we need an intelligence unit of the court, similar to that of the Law Society: concerned professionals need somewhere to go.

The situation in which doctors and other medical personnel find themselves remains confusing. I hope that we can clear that up. They are concerned, among other things, that the assessments that they will be called on to make will be both time and issue-specific. As Mr Lush has made clear, real problems arise most often not with the young or with the elderly indisputably without capacity but with all those in between. Doctors are apprehensive about assessments that may be urgent and where there are significant uncertainties.

In his opening contribution, the noble and learned Lord, Lord Falconer, was extremely helpful. I certainly share the view of those who look forward to what he has to say. However, it would be wholly wrong to regard advance decisions as the same thing as a will. However long the lapse of time between making a will—whatever the difference may be in truth between the will and the will that a person might have made a year, say, before their death—the welfare of the deceased is not affected. Advance directives on treatments, whether or not they include A&H, affect the patient directly. I hope that we shall see that those are to be full and that doctors have some freedom to consider the range of related issues—for example, how long ago the decisions were made; what information the patient had at the time; whether the patient was aware of medical advances since; and so on.

Lastly, I conclude with a few words on the draft code of practice, which I have read twice. As it stands, it begs too many questions: how, by whom, how defined? As an aside from that, perhaps it is not practical to have a one-size-fits-all document. It needs to satisfy the needs of all for whom it is designed: from specialists and GPs to paid carers and a whole variety in between. I hope that I have indicated the need, as I see it, for a deal more work on this Bill, not least in those areas that bear most on euthanasia, which has been the issue of so much debate here and in another place.

If I may, I conclude with a vote of thanks to my noble friend the Minister for help so far, and help that I anticipate.

Photo of Baroness Murphy Baroness Murphy Crossbench

My Lords, this is a good Bill long overdue. It may need some tweaking in Committee; it certainly needs some detailed code of practice; and I am not sure that we have it quite right at the moment. However, the provisions for decision-making for day-to-day care and for research with incapacitated adults are sensible, workable and clarify what has long been a quagmire of outdated precedent and woolly fudge for those, like me, directly concerned in the business of providing healthcare for older people with dementia. If I today address the clauses in the Bill that have received a great deal of inaccurate publicity and leave aside the more widely applicable provisions of the mainstream of the Bill, it is simply because I support those as they stand.

About 10 years ago, I made an enduring power of attorney and, with it, I have a witnessed letter of wishes to my donee, expressing how I hope to be cared for, if and when I become mentally incapacitated. Several Members of the House told me before this debate that they, too, have done so. Mine mostly reminds people that I want good food, good wine and kindly smiling faces around me because, in my experience, that is what is least available when you become mentally incapacitated, but it also expresses my desire to avoid any medical interventions to prolong my life, except in so far as they are necessary to secure my comfort.

I did so because, while I was the consultant psychiatrist responsible for about 120 long-stay beds for people with dementia, about two or three times a month I would sit down with a relative or a family to try to work out together what they believed the patient would be asking us for in those final weeks of that dreadful illness. Those are not usually dramatic life-or-death decisions involving machines being switched off or cardiac resuscitation, nor even to do with taking tubes out or whether we should artificially feed—although, occasionally, all those things are involved.

I am talking about the everyday decisions that are the clinical work of GPs, psychiatrists and physicians working with mentally frail people at the end of their lives. Perhaps the second or third chest infection that winter had started: should we give antibiotics, perhaps prolonging the distressing limbo of this puzzled, lost soul, or do we let nature take its course this time?

I might say that, whatever the decision, the human body does not always respond predictably but, nevertheless, there is a potential opportunity to respect an individual's wish not to have life prolonged if that would indeed have been his or her wish in those circumstances. In my experience, close relatives, especially husbands and wives, have a view about what their relative would want if they could make a decision for themselves. They have often discussed those things in the past. Of course, less close relatives are not always so clear. Countless times I have wished that I had guidance from the individuals themselves, made when they had full capacity.

At last we have a mechanism in the Bill to allow their voices to be heard and, indeed, to make decisions where their voices can still not be heard. That is no more than recognising the fundamental and legitimate right of patients to accept or reject treatment options, while all along continuing the personal nursing care that ensures comfort and promotes least pain and distress. As has been said, the clauses are supported by the Alzheimer's Society, of which I am a vice-president. I strongly support the fact that we should be able to encourage people to say what they would like for the future.

Sadly, I know that very few people will make an advance directive in association with their financial lasting power of attorney. It has been estimated that there are between 100,000 and 250,000 enduring powers of attorney in use, donating powers on financial matters, whereas there are probably more than 1 million lacking capacity who really should have one. No one ever really believes that they personally will succumb to cerebral failure. That is not something that we plan for. But I shall be one of the first to get my new LPA registered when the Bill is made law.

I have one final point about the Bill. How is it that we have guidance here about the conduct of every type of health and social care treatment except treatment for the very disorder that is the cause of the mental incapacity—at least when people are refusing treatment?

Clause 28 leaves that to the Mental Health Act. Why should it? If we had some safeguards, notably an appeals system that satisfied the European Court and therefore the "Bournewood gap", which, I gather, has been put to the side while we consider the terrible conundrum with which we have been faced, we would not need another mental health Act at all, except in respect of the interface with the criminal justice system. We would at a stroke have removed the discrimination against people with a mental illness that prevents them having their wishes respected when they have full mental capacity. I fear that that is a vision too far for the present, so I shall not labour the point.

I have been waiting for this Bill for 14 years, since the Law Commission published its excellent working paper 119, on mentally incapacitated adults. I have looked forward every year to something happening. It is difficult to say why it has taken this long, but I expect that it is Murphy's law that the Act will take effect just when I am giving up clinical practice. Ah well; others, particularly patients and their family carers, will benefit. I commend this excellent, long-awaited Bill to the House, and I would have looked forward to using it.

Photo of Baroness Masham of Ilton Baroness Masham of Ilton Crossbench 6:20 pm, 10th January 2005

My Lords, I apologise to the House, particularly the noble and learned Lord the Lord Chancellor, that I arrived during his speech. My train was late, due to high winds, and it developed a malfunction after York. It was very frustrating.

The Bill may be well intentioned but it is causing many, particularly disabled people and their loved ones throughout the country, concern on several counts. I must declare an interest, again on several counts. I am disabled, with a long-term condition of paraplegia, having broken my back more than 40 years ago. I also became my brother's spokesperson, having been asked by him to make decisions on his behalf when he became terminally ill. Also, I have a very ill husband who has several difficult conditions, one because of post-stroke and Parkinson's disease, which causes difficulty with swallowing. We often have to assist him with taking food and drink, which has to be thickened.

We now live in the past shadow of Dr Shipman, and another doctor is now being investigated in County Durham, also for murdering patients. When one considers those cases, there is great concern when one sees the ease with which patients were knocked off. With the power that doctors have, if used in the wrong way, the Bill could give them sanctions, or be seen to give them sanctions, to kill off their old and terminally ill patients. When hospitals and community services are under pressure, it could become an easy way out to cut waiting lists and save money.

There should be greater safeguards in the Bill. We are dealing with the most vulnerable people. With the recent disaster of the terrible tsunami and the tragedy of so many people dying, the importance of living has been vividly brought to the forefront of our lives. The importance of dying is such a sensitive matter. I cannot understand how starving people to death and denying them fluid can ever be even thought of. That the Bill should allow such a thing to happen is simply unacceptable.

In 1958, when I sustained my injury of a fractured spine, resulting in paralysis, I also had a suspected fractured skull, several fractured ribs, internal haemorrhage and was semi-conscious and in a great deal of pain. The doctor on duty said to my fiancé, "If she lives through the night, she may never move again". If I had not had blood transfusions and various procedures, I would have died. The Bill, if enacted, may make much easier a doctor's decision just to let such a patient die. The fear of this Bill by people who consider themselves vulnerable is that it enables other people to decide whether a patient should live or die. Judging other people's quality of life is very dangerous, as the quality of different things changes and they can become much more important. Pleasure can be derived from small things that some people would never even think of. I heard a ward sister at the spinal unit of Stoke Mandeville Hospital, when looking at a high-lesion tetraplegic—someone who has broken their neck—say "If it were me, I would want to die".

Thirty years ago I founded the Spinal Injuries Association with colleagues, including the noble Baroness, Lady Wilkins, who was one of the first members of our management committee. The first book that our association wrote was called So you're paralysed . . . , which was to show people with spinal injuries resulting in paralysis and the general public that there is life after serious injury.

Where there is life there is still hope. My husband's aunt used to say to us when she got incapacitated, "Please put me down". She eventually developed Alzheimer's disease but she always enjoyed her food. How could she just be left to starve? Had she left a living will, how and when would she have been "put down"? People's wishes often change when their circumstances change.

For a few moments, take the scenario of a young man who, having seen one of his friends die after a long and distressing struggle with brain cancer, signs an advance decision stating, "If I become mentally incapacitated I do not wish my life to be sustained". Many years later a road accident leaves him unconscious for several days. Both doctors and relatives wish him to be provided with standard simple treatment and care that will sustain his life until he becomes conscious again. Such a situation may be that he would be saved by a tube, artificial ventilation and a blood transfusion. Because the new Mental Capacity Bill defines treatment as including a diagnostic or other procedure and allows advance decisions to apply to life-sustaining treatment, because the courts in the Bland case have defined sustenance through a tube as medical treatment, and because the man's advance decision expressed in broad terms or non-scientific language is none the less legally binding, his advance decision prohibits such simple treatment and care. The man therefore dies, even though he was not terminally or incurably ill. He has unwittingly caused his own death because a dangerous law exploited his understandable fear of cancer.

Even if that patient, instead of being incapacitated by a road accident, had contracted brain cancer, his advance decision may, in the words of the 1994 report of the House of Lords Select Committee on Medical Ethics, have deprived the patient,

"of the benefit of the doctor's professional expertise and of new treatments and procedures which may become available since the Advance Directive was signed".

That is why the 1994 committee opposed giving advance decisions greater legal force. Regarding lasting powers of attorney, the 1994 committee concluded that such a system,

"is vulnerable to the same problems as advance directives, and indeed to a greater degree".

The BMA wants to know whether the Mental Capacity Bill can reconcile the increasing trend towards informality with the need for appropriate safeguards. I agree that it is critical that incapacitated people, their relatives or carers, as well as health professionals, have confidence that the system can both support and protect the interests of incapacitated people.

I hope that the Minister can answer some questions about the independent consultee service, as recruitment for good carers of all sorts for disabled people is not an easy matter. Where will independent consultees be recruited from and what qualifications will they require? Will an independent consultee (IC) be able to make an assessment of the best interests of a seriously incapacitated adult with whom he or she is unable to communicate effectively?

What will be the relationship between the IC and an advocate? How will a conflict between an IC and a health professional be managed? Who will pay for the information needed by the IC? Will that service be means tested? Who decides if the IC is not the right person for the job or, if he can no longer do the job, who do they tell? Will they be paid or will they be volunteers?

Can the Minister say whether non-therapeutic interventions are to be allowed? That could include, for example, harmless or minimally harmful interventions that are not directly in the best interests of the incapacitated person but provide a significant benefit for third parties—for example, testing for blood-borne diseases following a needlestick injury to a health professional.

I hope that the Minister will be able to tell your Lordships what can and cannot be undertaken in the interests of medical research under the Bill. The interest of the patient and future patients should always come first. But it was of great concern to see Britain at the bottom of the list of European countries in the treatment of cancer, recently printed in the press, which is something that has shocked many people.

Medical research is vital for progress. It is alarming that we have sunk so behind. Mental incapacity and medical research are most sensitive issues with the memories of concentration camps, but for the benefit of patients and, under ethical protection, medical research for the advancement of all fields of medicine should proceed.

I will be supporting amendments to the Bill to prevent any act or omission with the purpose or motive of causing the death of a patient; to ensure that the definition of "best interests" includes the health and life of the patient, which, at present, relates only to the wishes of the patient or what someone else claims are the wishes of that patient, which is even more dangerous as I have tried to explain; and to prevent advance directives from being made legally binding in law. I have received a letter from someone who works in a high dependency unit looking after patients with severe mental and physical disability. He says that his patients are totally unaware of the fate which confronts them if the Bill passes unaltered. There are many people who are looking to your Lordships to make this Bill safe for those very vulnerable patients.

Photo of Baroness Pitkeathley Baroness Pitkeathley Deputy Chairman of Committees, Deputy Speaker (Lords)

My Lords, I am delighted to welcome this Bill, which many of those of us who work for and with vulnerable people have long hoped to see on the statute book. I declare an interest as vice-president of Carers UK. As others have done, I would like to pay tribute to the members of the scrutiny committee who have worked so hard on the Bill, some of whom I now have the pleasure of working with on the scrutiny committee for the draft Mental Health Bill. Their careful work on this Bill and suggestions for inclusion and improvement has resulted in a better Bill, while their wisdom and experience also contributes to whichever mental health Bill eventually emerges.

It was of course through my work with carers that I first became aware of the need for a Bill such as this. I saw how families and those who lacked capacity struggled with making decisions that are in the best interests of everyone, with little help from the legal system and no accepted principles by which the rights of someone who lacks capacity can be protected. I shall concentrate only on that aspect in my brief remarks today.

When I first started working with carers it was quite common for cared-for people to be referred to as "dependants". Of course, the terms "handicapped" and even "defective" were still used. Terminology has come a long way since the mid-1980s. Mercifully, so have our ideas about the rights of people with disabilities of whatever kind to make or at least be involved in decisions about their affairs and care. What we have been lacking thus far is the legal framework that reflects the changes in policy and practice. This Bill goes a long way towards providing us with that.

I have seen carers astonished and distressed by finding out that others have a right to decide how a much-loved parent recently diagnosed with Alzheimer's will live—but that neither they nor the patient has any right to challenge decisions. I have seen someone who cares for a patient who has had a stroke excluded from any decision about treatment, even though they had discussed such an eventuality with their loved one and knew perfectly well what his or her wishes would be.

I have seen carers struggle endlessly with the complication of the Court of Protection and enduring powers of attorney, which are not user-friendly at the best of times, but are truly dreadful when you are already distressed about your relative's waning capacity. As an aside, I have, of course, like many of your Lordships, considered the needs of my own family to know my own mind about treatment in the event of serious and irreversible impairment. Indeed, I know how helpless my family felt at not knowing my mind on these issues when I faced death myself. Let us be clear that in spite of the impressions to the contrary, that is all that this Bill does: it gives those who wish to do so the opportunity for advance directives.

The Bill will address all those issues, which are underpinned by the five key principles set out in the Bill, to which we have heard reference many times today. Of particular value will be assessing lack of capacity in a decision specific test—a single clear test to assess whether a person lacks capacity to take a particular decision at a particular time—so that you cannot be once and for all labelled as incapable just because you have a mental disability or a condition such as Alzheimer's. Even with those, you are quite capable of taking some decisions, if not all.

It is significant, too, that everything done for a person who lacks capacity must be done in their best interest. That, of course, is not the easiest of issues when it comes to carers since the needs or interests of the carer and the cared-for may not always be the same—indeed, sometimes they are in conflict—but the checklist in the Bill will be helpful in enabling decision-makers to work through such difficulties. At least carers and family members will gain a right to be consulted, which they have lacked before.

However, the Bill does still not sufficiently distinguish between carers as I mean them—those who give support to a chronically sick, disabled or frail partner, relative or friend—because of a pre-existing relationship and those people who provide care as part of their employment or as a volunteer. That is inconsistent with other legislation to date; namely, the Carers (Recognition and Services) Act, the Carers and Disabled Children Act and the Community Care (Delayed Discharges etc.) Act. Of course, the draft Mental Health Bill also makes clear distinctions in primary legislation between those two groups. It is very important that we remember that.

There are several practical reasons why the Bill needs to distinguish clearly between those two groups. Carers are the people who provide the bulk of care to people who are chronically ill or disabled in the community. As your Lordships have been reminded by me many times, the contribution that they make amounts to £57 billion a year. If they provide substantial care over a period of time, they gain significant knowledge and insight into the condition of the person they care for.

Carers want to be seen as partners in care and want to contribute to decision-making. However, there are also times when carers are acting in the best interests of the person they care for, but they disagree with the opinion of the professionals. In many circumstances I am afraid that professionals are listened to more readily than carers. That is true not only in decisions about where to live, medical treatment and so forth, but also in day-to-day decisions on the way people are cared for and what they enjoyed doing before they were incapacitated. Carers often tell Carers UK that professionals do not respect their judgment, their knowledge of caring, or heed the preferences of the person being cared for.

We should remember that the decisions made and action taken by paid staff in relation to the mentally incapacitated person impact directly on the carer's life. For example, a decision to change frequently the care assistance rota for a man with Alzheimer's disease means that his wife, the carer, has to train each care assistant in how to move, handle and talk to her husband. Her husband finds the change of carer stressful, which makes him anxious, so she has to spend more time reassuring him. We must ensure that the correct weight is given to the opinions of all the participants in these decisions: those of the patient, the informal carer and any paid carer involved.

I hope that, as a result of the Bill, the Government and carers' organisations will now embark on a programme of public education, encouraging families to discuss their wishes in such situations more openly, and perhaps to take advantage of one of the provisions of the Bill to appoint an attorney to act on their behalf should they lose capacity in the future. In this regard, the ability to appoint someone who can act on health and welfare matters as well as finance is a most welcome addition.

I remain concerned that families will be confused about the new provisions at first, and we shall need to give them as much help as possible. It is vital that the promised final agreed codes of practice are published as soon as possible and that they are disseminated widely and effectively. I hope that the Minister will be able to give us both a timetable and a budget for this information sharing.

Like the noble Lord, Lord Carter, I am concerned about the interface between this Bill with any new mental health Bill, and in particular about the time delay between the implementation of these two important pieces of legislation.

Many unjust things have been said about the Mental Capacity Bill and noble Lords will be familiar with most of them. But I think the fact that it has been welcomed by so many professional and voluntary organisations, especially those representing vulnerable people and their carers, proves that it is a welcome addition to the ever-developing panoply of law for the protection of these individuals.

Photo of Lord Adebowale Lord Adebowale Crossbench

My Lords, having listened to the many excellent contributions that have already been made, it is with some humility that I rise to contribute to this debate. I congratulate in particular my noble friends Lady Chapman and Lady Masham of Ilton on their remarks. I hope that their detailed comments will contribute towards improving the Bill when it is considered in Committee and during the remaining stages. However, I have to say that my sympathies lie with the remarks made by the noble Baroness, Lady Pitkeathley, and my noble friend Lady Murphy. I should like to take a positive approach to the Bill, and at this point I declare my interest as the chief executive of Turning Point, one of the key members of the Making Decisions Alliance which has campaigned tirelessly over a considerable time for this Bill.

I want to make clear that the Bill will empower millions of people who find it hard to exercise what I believe to be their right to make decisions in their own interests. The framework of rights, safeguards and duties provides an opportunity for people to take control of their lives and be protected when decisions must be made on their behalf. I know from first-hand experience that this is needed.

Turning Point supports many people with learning disabilities who only recently have left long-stay hospitals where their autonomy was overruled on a daily basis. Decisions are often based on what is easiest for support workers rather than in the best interests of the individual. That reduces people's capacity to make decisions for themselves. Research shows that on leaving hospital, more than half were unable to wash without assistance, one-third could not dress themselves and four-fifths did not know how to shop alone. But after leaving hospital with the right support, people develop the capacity to do tasks which others had assumed they never could. For the first time, the Bill will set out the rights of such people, providing them with protections when others must decide on their behalf. That is why I welcome it.

We have heard throughout the debate that many people have expressed concerns about euthanasia. Indeed, I have received many letters and e-mails about this subject. I think it is clear that the legal position remains unchanged. Euthanasia is and will remain illegal. Clause 58 and the Government's most recent commitment to make this more explicit in the Bill should provide the reassurances needed.

The inclusion in the Bill of advance refusals of treatment—living wills—has given rise to particular concerns about euthanasia by neglect. I hope that it is now clear that that is not the consequence of these provisions; rather, advance refusal will simply respect an individual's autonomy to refuse treatment. I understand that this right already exists in common law, and by setting out a framework in statute the safeguards are now stronger and clearer than ever before. It now includes a requirement that advance refusals must be written, which should be welcomed.

In addition, for an advance refusal to apply to life-sustaining treatments such as artificial nutrition and hydration, ANH, the Bill requires this to be explicitly stated in the refusal. In my view it is right that the Bill allows for this. ANH can be an unbearable burden, and evidence suggests that in some cancers it can stimulate the growth of the tumour, while for people in the late stages of dementia, ANH can increase the risk of infection. It is not a clear-cut case, and some of the emotive language used when referring to ANH muddies the waters and does not lead to clear decision-making under very difficult circumstances. I do not believe that using terms such as "starving to death" and "putting people down" are of any help. While I understand where such terms come from in the experience of some individuals, I do not believe that they help the debate—one that is already difficult and challenging enough.

As I have said, in some cases ANH can increase the risk of infection. People must have the right to dignity and good quality palliative care. But they must also have the right to refuse interventions which prolong life with no improvement in its quality. The provisions of the Bill do this with what I think are sufficient and appropriate safeguards.

However, the Bill could better deal with concerns that decision makers sometimes make treatment decisions based on assumptions about the quality of life of those without capacity. I believe that an equal consideration clause would ensure that the person who lacks capacity is treated no less favourably than someone who has capacity. Such a clause would address the concerns expressed about euthanasia by neglect and, in my view, would strength the value base of the Bill.

As I said at the start of my contribution, I believe that the Bill will ensure that individual autonomy is respected and enhanced. However, I should like to highlight two key areas for further consideration and amendment before they fully achieve their aims. I refer to independent consultees and, of course, the Bournewood gap.

We have heard from other noble Lords why advocacy is so important. We know that, when the most serious decisions are made, those with families can be as vulnerable as those without, so I am not content to leave the right to an advocate limited only to the unbefriended. What is more, I am not content for any extension to be left to regulations with no guarantee that it will actually happen. The statutory right to an advocate for all persons who lack capacity when the most serious decisions are taken must be in the Bill.

I turn now to the Bournewood gap. Why do the Government need to consult on safeguards for people who are "informally" detained when the draft Mental Health Bill 2002 already provides a blueprint? If this is not what the Government envisage, the safeguards proposed must include a treatment plan, a review process, a second opinion, advocacy services, a nominated person and a clear process for appeal.

Lastly, how confident is the Minister that the Mental Capacity Bill and the Mental Health Bill will work side by side? Their relationship is complex and I am still concerned that it will not be properly analysed or understood.

So to conclude: the Bill will empower people, but we need progress on advocacy and Bournewood as well as in other areas mentioned by other noble Lords during the course of the debate before it will achieve its full potential. I hope that the Minister will be able to reassure us that due consideration will be given to many of the issues I have raised in my speech as well as those in the contributions made by other noble Lords. We want to increase the positive effect of this Bill on the lives of many thousands of people and, possibly, many of us in this Chamber.

Photo of Lord Pearson of Rannoch Lord Pearson of Rannoch Conservative Independent

My Lords, like other noble Lords who had the privilege of sitting on the Joint Committee which considered the Bill in draft, I should like to pay particular tribute to the chairmanship of the noble Lord, Lord Carter. The noble Lord needed all his well-known diplomatic skills during some of our inevitably controversial sessions and he deployed them with fair-mindedness, courage and sincerity.

As usual in debates of this kind, I should declare my interest as the father of a daughter who suffers from Down's Syndrome and who has therefore been intellectually impaired from birth. I am also the honorary president of RESCARE, which has recently changed its name and is now the National Society for Children and Adults with Learning Disabilities and their Families.

Your Lordships may have noticed that I described my daughter as "intellectually impaired" rather than "mentally handicapped", which is how I have described her in the past. I mention this because the nomenclature used by the various sides in the debate about what are usually described as "learning disabilities" generates considerable heat at the expense of the light which we all seek.

Indeed, I have attracted considerable antagonism in the past for using the expression "mental handicap" as opposed to "learning disabilities" and I assumed that it was the word "handicapped" which caused the offence. But I learnt recently from a friend in Mencap that it is the word "mental" which annoys many in our sector, and so I am, of course, happy to drop it.

Personally, I am still not entirely happy to describe the people whom I represent as merely having "learning disabilities". We all have learning disabilities of one kind or another and so, for me and for many parents of similar children, the expression does not quite hit the spot. It is interesting to note that the World Health Organisation sanctions the general use of the expression "learning disabilities", but not when one is referring to someone with "mental retardation", which it also sanctions and which is, perhaps, a fairer description of the condition of the people that I represent. Anyway, I trust that it will not cause offence if in future I use an expression such as "intellectual impairment" or "handicap".

One of the difficulties with the Bill is that it covers both those who lack mental capacity from birth and those who come to lose it later in life—probably much later; indeed, towards the end of life. I trust that I have made it clear that I speak on behalf of many of the former category and their families, who generally extend a warm welcome to the Bill. My comments and questions for the Minister are therefore concerned more with detail than with the broad thrust of the Bill.

One question concerns the powers of the proposed independent consultees, who were introduced after the Bill left the Joint Committee. The Bill assumes that family and friends will often make decisions in someone's "best interests" where the individual clearly lacks capacity. In the absence of such family or friends, an independent consultee is to be appointed. There is a concern that specific powers given to independent consultees are not given equally to family and friends acting in a person's best interests.

For instance, Clause 34 allows the Secretary of State to make regulations governing independent consultees and there is some provision for payment. Subsection (6)(b) states that they may examine and take copies of any health record and any local social services record which the person holding the record considers may be relevant to the independent consultee's investigation. Fair enough—I am sure that that will be helpful to the independent consultees—but the difficulty at the moment is that neither in the Bill nor in the draft codes of practice do these powers appear to be given to family or friends who may be acting in the best interests of the individual.

I understand that RESCARE has been in communication with the department about this anomaly and that the department agreed it should be corrected. Since then there may have arisen a feeling that family members do not always agree with each other and so it is difficult to identify to whom to grant the power. If this is so, perhaps I may suggest to the Minister that the next of kin, or a person nominated by them, should be granted the same powers as are proposed for the independent consultees. I trust the Minister will agree that it will sometimes be difficult for families and friends to reach the right decisions if they do not have the information in question. I hope that we can find a solution to this lacuna.

I suggest that the same goes for appointed deputies— often family members—who will have their powers specified by the new court. These powers are not therefore spelt out on the face of the Bill but one needs to be sure that their powers—for example, on health and welfare matters—will not be less than those proposed for the independent consultees.

While on the subject of deputies, there seems to be a feeling that the appointment of a deputy will be a relatively rare occurrence. This may be true for many of the categories of people covered by the Bill, but for people with lifelong severe incapacity it could become quite usual. Of course there will be less need for deputies with formal powers if family and friends acting in the person's "best interests" have automatic access to medical records and so on.

I make no apology for once again emphasising the importance of families to the well-being of those who are born with intellectual handicap or severe learning disabilities, or however you want to describe it. All things being equal, it is really only the family which has the lifelong interest, the lifelong duty and, yes, often the lifelong burden of looking after their relative. The fear that some greedy family member may take control of a relative's life and fortune for their own personal gain really does not apply to the people and families that I represent. They simply do not have the assets to be pilfered.

Here I would associate myself with one of the most important points made today by the noble Baroness, Lady Barker, when she said that we really must try to get away from thinking about anonymous groups of people and move towards consideration of their individual needs; to consider them as individuals as much as possible. That aim must surely lie at the heart of the Bill.

So I hope that I do not transgress if I point out that even among those born with intellectual impairment there is a range of disability, from the severely disabled who will never be able to decide matters covered by the Bill for themselves—even bearing in mind Clause 3(2), which was referred to by the noble Baroness, Lady McIntosh, which I accept—to those who clearly should have a very considerable input into how they live their lives. Some of these more able people came to talk to us in the Joint Committee and impressed us all with how articulate they were.

At the risk of further generalisation, I would say that there is a tendency for the more disabled to depend on their families with complete love and trust, whereas among the more able there can clearly be frustration with their families, whom they find sometimes to be over-protective, as indeed we heard from some of our witnesses. I submit that it is to this last category— perhaps to those largely represented by the Making Decisions Alliance and similar bodies—that the proposed independent consultees may prove to be most helpful.

However, I speak for the more severely handicapped when I remind your Lordships of something said by my honourable friend Mrs Angela Browning—who speaks from personal experience, as do I—during our Joint Committee deliberations. She said:

"I am in favour of the principle of independent advocacy, but when somebody has to go that extra mile to take on and challenge the so-called professionals, it is not going to be an independent advocate who is going to run with it".

In other words, only a committed family member is likely to do that.

A very good example of this—and I fear there are hundreds of others—was tellingly exposed by Minette Marrin in the Sunday Times on 12 December last under the headline "How the carers hijacked an autistic man called Andrew". I shall not repeat the details now but I will put a copy of the article in your Lordships' Library. I shall also give a copy to the Minister, just in case she has not read it. In summary, Bolton Borough Council was eventually reprimanded and fined by the ombudsman for drugging Andrew, who has Fragile X syndrome, which involves autism and epilepsy, and putting him into a secure psychiatric ward for 18 months. Andrew was lucky because his mother is the niece of RESCARE's chairman so presumably the family knew how to fight the present system. Even so, they only just saved him.

This is the sort of case that I hope the Bill will make a thing of the past. I trust that we can all work together to achieve that, as well as the Bill's other laudable aims.

Photo of Lord Maginnis of Drumglass Lord Maginnis of Drumglass Crossbench

My Lord, while much of the Bill is well intentioned, it contains a significant section that is unacceptable, set about by stealth and the thin end of a dangerous wedge. It is that aspect alone that I will address today. Because I feel strongly about this, I hope that people will not doubt that I have thought long and hard about it.

I would like to believe that somehow, in respect of the Bill, what we used to be allowed to call values, principles and the sanctity of human life can still influence the decisions that we are asked to make today. But how can I? Those values by which many of us have been brought up to conduct our lives, and to fulfil our responsibility within society, are increasingly derided and denigrated.

In this respect, no government in living history have done more than this one to accommodate those who would trample on those sensitivities, undermine our traditional values and erode the moral welfare of the ordinary decent people of the United Kingdom. For "community interest", we now have the overbearing "minority and partisan rights"; for "things British", we now have "Euro-diktat"; and "group responsibility" is sacrificed on the altar of "individual rights". Selfishness comes before any real interest in sustaining a morally healthy and caring society.

Is it not ironic that in an age when we have turned our backs on capital punishment—and I voted to do so— we murder thousands of unborn babies for purely social convenience? Yet we would criminalise a mother suffering from post-natal depression if she dared to harm her new-born baby just a few weeks later.

I fear the Bill will be just another step on the path the Voluntary Euthanasia Society wants us to tread. Unless the Bill is substantially amended, we will inevitably move those elderly who are mentally incapacitated in the same direction as so many unborn children; that is, being able to be easily discarded and to have their lives aborted.

The Bill in its current form would effect a major shift in our criminal law and medical practice. It will favour omitting medical treatment in a range of cases where hitherto it would have been omitted only if the patient had been capable of refusing it. It will lead to mentally incapacitated patients having provision of water and food, the very basics of life, withdrawn in circumstances where, but for the Bill, such treatment and sustenance might well have been given.

Looking at the recent report from the Joint Committee on Human Rights, I was struck by its reference to the fact that individuals who make advance decisions, or who execute an instrument with a view to creating a lasting power of attorney while competent, may not appreciate that the refusal of life-sustaining treatment includes the refusal of food and water delivered by artificial means. Who will be on hand to advise those individuals of this fact?

We can surely see where this is leading. Mentally incapacitated individuals will be denied medical treatment, including food and water, with the result that they die slow, lingering and distressing deaths. The lethal injection, quick and apparently painless, will seem truly merciful in comparison and the noble Lord, Lord Joffe, and his allies will soon get their way with the full-scale legalisation of euthanasia.

I am not exaggerating. In the Commons debate, the pro-euthanasia advocate, Dr Helga Kuhse, was quoted. It is worth repeating what she said:

"If we can get people to accept the removal of all treatment and care—especially removal of food and fluids—they will see what a painful way this is to die and then, in the patient's best interests, they will accept the lethal injection".—[Hansard, Commons, 14/12/04; col. 1560.]

Dr Kuhse refers here to the patient's "best interests" and "best interests" is the pivotal concept of the Bill. All decisions taken in respect of the personal welfare of a mentally incapacitated patient must be in his or her "best interests". It all appears relatively benign, until you delve a little more deeply.

"Best interests" in the Bill, it appears to me, is defined in a largely subjective manner, with the result that there is little to prevent, or even to discourage, an attorney or deputy from determining that it is in the patient's best interests not to receive treatment and that it is in the patient's interest to die, because that is what they consider the patient, if he had not been incapacitated, would have wanted under the circumstances. Not only would this be presumptuous to the point of being immoral, but it could, and will, evolve just as abortion legislation has evolved. That will ultimately happen when a reasonable medical judgment would be that treatment would be neither futile nor unduly burdensome, but possibly beneficial.

Government amendments that were approved in the Commons make the situation even worse. Where life- sustaining treatment is concerned, any decision-maker must now,

"begin by assuming that it will be in the person's interests for his life to continue".

Again, this seems benign until one considers that this will lead to doctors, social workers, hospital chief executives and others sitting in judgment over whether the lives of certain mentally incapacitated individuals are worth while. Can the Government convince me that, as average life expectancy increases and hospital and social services become more financially burdensome, the long-term implications of the Bill are not clearly understood? The question must always be, "Is this treatment worth while?", not, "Is this life worth while?".

The Bill is supposed to be about improving the lives of vulnerable adults, not making them worse. I hope that the Government will listen to the widespread concerns about the Bill and adopt the amendments that were proposed in the Commons, particularly new Clause 1.

Unlike the Bill of the noble Lord, Lord Joffe, this Bill, once passed, will not legalise euthanasia overnight. None the less, bearing in mind that it is more about selfishness than it is about rights, it will, if unamended, accelerate the drift in that direction and betray those mentally incapacitated people who it is supposed to protect.

Finally, at the end of the day, how would we be able to be confident that our doctors, nurses and carers were indeed our benevolent protectors, and that they were not to be relegated to performing a judgmental role that would be the very antithesis of what we know?

Photo of Baroness Royall of Blaisdon Baroness Royall of Blaisdon Labour

My Lords, I participate in this debate because I firmly believe that the Bill will bring invaluable benefits for people who lack mental capacity, their carers and the medical profession. In addition, it is of great advantage to those of us who may wish to plan ahead for situations in which we no longer have full mental capacity but in which we wish to retain an element of control. As the right reverend Prelate the Bishop of Worcester so eloquently pointed out, the Bill also provides us with a fine and clear statement of the principles according to which human beings should treat each other.

I speak neither as a professional nor as a member of any relevant organisation but as an ordinary citizen who has had to make difficult decisions with and on behalf of parents and as someone who has always taken a strong interest in the rights of people with mental illness. Too many of my friends are now confronting decision-making with, or on behalf of, parents who are suffering from various stages of dementia or Alzheimer's. The Bill will, I believe, improve their lives.

The prolonged debate on what the Bill does not provide for—that is, euthanasia by the back door, or euthanasia by omission—has, I believe, clouded the very real advances that the Bill will bring in terms of empowering, protecting and supporting 2 million vulnerable people in society, their carers and their families. By providing a legal framework, it will also relieve pressures on the medical profession and reduce the dilemmas with which its members are confronted.

The need for the Bill is clear and, as many have said, after 15 years of deliberation and consultation, it is now urgent. In an ageing society, there may well be more and more people who lack some mental capacity and an increasing number of carers, doctors and nurses engaged in their care. The Bill is needed to safeguard the interests of them all.

Like my noble friend Lady Pitkeathley, I celebrate the new legal presumption that everyone has capacity to make decisions unless it is shown otherwise. I fully support the principle that people must be empowered and enabled to make their own decisions whenever possible. The "does he take sugar?" ethos is still too frequently pervasive in the lives of people with disabilities—especially those with learning disabilities—people with mental health problems and people with brain injury.

The Bill will ensure that people with limited decision-making abilities are properly supported to make as many decisions as possible. People who do not have the capacity to make their own decisions will be enabled to participate in the decisions that affect them and their rights will, importantly, be protected when decisions are made on their behalf. As the noble Baroness, Lady Barker, pointed out, in addition to empowerment and protection, the Bill extends the human rights of people who lack mental capacity—the right to be able to express one's opinion. This point was very well made by the Joint Committee on Human Rights.

The principle of fundamental importance that underpins the Bill is that of "best interests". Someone taking substitute decisions, be they carers or doctors, attorneys or deputies, must act in the best interests of the person concerned and choose the options which are least restrictive of their rights and freedoms. This provides a truly essential element of protection for vulnerable people in our society. That protection is enhanced still further by the creation of a new criminal offence of wilful neglect or ill treatment of a person who lacks capacity with a maximum sentence of five years.

I firmly support the research provisions included on the recommendation of the Joint Scrutiny Committee. As a lay person, it seems to me that the Bill sets out clear parameters for research, although I recognise that there are always difficult ethical questions in these situations. For example, research undertaken might only be in the potential best interests of the person concerned, and the real benefit will be enjoyed by others. I am sure that there will be much informed debate about this particular issue in Committee but, importantly, the Bill provides an opportunity to clarify and enshrine in law the requirements relating to the inclusion in research of adults lacking the capacity to consent. Such research will contribute to knowledge of the causes, treatment or care of people with the same or similar condition. The potential is therefore enormous.

My concern in relation to the Bill, as it continues its legislative progress, is that any improvements should not add complexities; that the language should be simple and the information presented in the most user-friendly way possible. The Bill is intended to provide clarification about who can take decisions, in which situations, and how they should go about this. It is intended to empower and protect people who lack capacity to take decisions and to provide guidance and safeguards for vulnerable people and those who care for them. They must, therefore, be able to understand the Bill and the new rights that it extends.

I welcome the code of practice which will enable individuals, families, carers and professionals to use this new legal framework to the best advantage of people who lack, or may in future lack, capacity. I also welcome the fact that, following consultation, the code will return to Parliament for final consideration. However, I urge the Minister to ensure that there will also be some sort of information campaign to raise awareness. People must be made aware of the Bill in order to exercise the new rights and enjoy the new protections that it provides. It is only through good information and communication that we will really achieve the necessary change in culture.

I realise that the wide range of organisations which support the Bill will keep their members informed. There are, however, many people who currently have decision-making capacity but who may wish to take advantage of the new opportunities to decide how they are cared for in the future, to plan ahead for a time when they might lose capacity.

I have only touched lightly on a few of the issues considered in this crucial Bill. My main purpose was briefly to draw attention to key principles which I believe have been obscured to date in the debates that have taken place and in the media coverage. The Bill will offer real help to vulnerable people; it will protect them and enable them to maintain the maximum level of autonomy. Empowerment and control of our own lives, wherever possible, enhances our dignity and our pride as members of our community and of society as a whole. I am proud that the Government have had the courage to bring forward this Bill, which I strongly support.

Photo of Lord Alton of Liverpool Lord Alton of Liverpool Crossbench

My Lords, I support the principle of creating a statutory framework to protect those individuals who lack mental capacity. I recognise also that the Bill presents a once-in-a-generation opportunity to remedy the deficiencies that currently exist and to safeguard the rights and interests of adults lacking mental capacity. That is why it is so important that we get it right and why we must adequately address the fears expressed in your Lordships' House today and outside as well. In that context, I especially welcome the moving and powerful maiden speech of my noble friend Lady Chapman and also the speech of my noble friend Lady Masham.

I should like to flag up three key areas to which I hope your Lordships' House will give detailed consideration in Committee and on Report. Most of my remarks will be about the withholding and withdrawing of medical treatment, including nutrition and hydration delivered by artificial means—often called euthanasia by omission. If that threat were not in the Bill, the noble and learned Lord the Lord Chancellor would not have pledged to your Lordships' House earlier today to introduce amendments at a later stage. I should like to mention, secondly, the definition of "best interests" in the Bill and, thirdly, medical research on the mentally incapacitated.

The noble Baroness, Lady Ashton of Upholland, who will reply to the debate, will be aware of my long-standing interest in the Bill. On a number of occasions over the past year or so, I met with her predecessor, the noble Lord, Lord Filkin. Those meetings were extremely useful. Along with others who have expressed appreciation of Ministers and officials for their willingness to engage, I should like to put on record my particular gratitude to the noble Lord, Lord Filkin. I pay tribute to him for the painstaking and sensitive way in which he addressed many outstanding anxieties. For example, some have suggested that the new Clause 58, to which I will refer again in a moment, is otiose and unnecessarily included in the Bill. I know that the noble and learned Lord had a battle even with officials in his own department to ensure that it was included, so important is it that people outside your Lordships' House know that we are committed to opposing the introduction of euthanasia by commission or omission—a point to which I will return.

During the Bill's passage, which began in another place, the debate was dominated by this issue of euthanasia. However, putting that aside for a moment, there are other aspects of the Bill that are deficient and that can be improved upon—not least the inadequate provision of independent advocacy to which the noble Lord, Lord Rix, and others referred, the need for regular reporting of how the lasting powers of attorney and court appointed deputies have been used, perhaps the overly rigid interpretation of advanced directives and maybe the need for a sunset clause requiring the efficacy of the enacted legislation to be addressed in due course.

I was also taken with many of the points made by the noble Earl, Lord Howe, especially on the question of potential conflicts of interest, the veto of life-sustaining treatment and the need to close the Bournewood gap—an issue referred to by many noble Lords. However, when we reach Third Reading, I and many other noble Lords would not want to be forced to vote against the Bill—the positive aspects to which I have already alluded—because of any ambiguities about euthanasia. That is why it is important that we use Committee and Report to get those questions right.

Those concerns were well debated on 14 December in another place and are also set out in the all-party Early Day Motion 336 tabled by Mr Iain Duncan Smith and supported by Mrs Claire Curtis-Thomas and Mr Paul Burstow, the Liberal Democrat health spokesman. More than 106 Members had signed that Motion by this morning.

Let me turn, then, in detail to this first area of concern. Like many others I am troubled by those clauses in the Mental Capacity Bill which, if unamended, might become a vehicle for euthanasia by omission. The Joint Committee, so well chaired by the noble Lord, Lord Carter, and the Government have trenchantly argued that such creeping change—and euthanasia by default—would be wholly unacceptable. In particular, I strongly welcome the Prime Minister's recent remark that,

"we will not in any shape or form countenance the deliberate killing of people".

He went on to offer the hope that he,

"would have thought that that position would recommend itself to everyone".—[Hansard, Commons, 15/12/04; Col. 1670.]

Sadly, as we know from the unremitting campaign being waged by the proponents of euthanasia, and even supported by some Members of your Lordships' House—we currently have a Select Committee considering the issue—we know that it is not a position that recommends itself to everyone. We must therefore particularly guard against euthanasia by stealth.

Many will have read with concern the reported comments of the noble Baroness, Lady Warnock, on 12 December last. She said:

"Maybe it has come down to saying: Okay, they can stay alive, but the family will have to pay for it. Otherwise it will be an awful drain on public resources".

She went on to say:

"I don't see why the rest of us should be sacrificed to the scruples of the medical profession".

It would therefore be na-ve to believe that the Prime Minister's position "recommends itself to everyone". Unfortunate though it is that there is no consensus about the matter, there are those who now talk in terms of people's economic worth and the subjugation of medical ethics. That must be clearly recognised in the context of a Bill that gives legal backing to measures that may make frightened, sick or depressed people feel they have "a duty to die" and to sign a living will accordingly.

It would be disastrous if the Mental Capacity Bill, which has the laudable aim of seeking to transform the lives of mentally incapacitated individuals and their carers, were to become a vehicle for the introduction of euthanasia and assisted suicide. The noble Lord, Lord Clarke of Hampstead, drew attention to the excellent speech of his honourable friend Mr Brian Iddon, on 14 December. In another place he quoted official documents from other jurisdictions that approvingly stated that,

"the cost-saving from a nation-wide push towards living wills is likely to be enormous".—[Hansard, Commons, 14/12/04; Col. 1558.]

He also quoted the equally chilling remark of Dr Helga Kuhse, to which the noble Lord, Lord Maginnis of Drumglass, referred.

I was struck by the briefing that I received from the "I Decide" coalition, a group of disabled people's organisations who are concerned about the potentially negative impact of the Bill on their lives. They say that,

"the Mental Capacity Bill will make it harder for disabled people to protect our right to life if the decisions about our lives and our access to medical treatment are taken away from us and put in the hands of self appointed decision-makers. We are very worried that decisions will be made to withdraw medical treatment (which includes food and water), based on incorrect assumptions about the quality of our lives".

Although I, like the noble and learned Lord the Lord Chancellor, oppose invasive and burdensome treatments and unthinking vitalism, these concerns do not fall into that category. Therefore, just as Clause 58 makes a welcome declaratory provision about euthanasia by commission, it is clear that the Bill also needs to do the same thing with regard to euthanasia by omission. It also needs to address the High Court judgment in the case of Mr Leslie Burke, which was referred to by the noble Earl, Lord Howe, earlier. Mr David Lammy, the Minister in another place, said:

"We want to ensure, however, that under the Bill it is not possible for someone by omission to act to assist suicide or euthanasia".—[Hansard, Commons, 14/12/04; Col. 1580.]

I welcome that statement and that made by the noble and learned Lord earlier today and will watch carefully to ensure that amendments do indeed do that.

The Joint Committee of Human Rights, in its 23rd report of Session 2003–04 was severely critical of sections of the Bill dealing with the withholding and withdrawal or medical treatment. It concluded that the presumption in favour of life-sustaining treatment, including nutrition and hydration delivered by artificial means, is not sufficiently strong in the Bill to satisfy the requirements of Articles 2, 3 and 8 of the European Convention on Human Rights.

Turning from the issue of euthanasia by omission, the second area that I would like to flag up is that of "best interests". The Bill states that all decisions taken in respect of the personal welfare of a mentally incapacitated patient must be in his or her "best interests" but this fails to calm my fears about the negative impact of the Bill. "Best interests" is the pivotal principle in the Bill. Therefore we must get the definition right. There has been widespread concern about the subjective nature of the Bill's definition of "best interests". In response, the Government supported and incorporated amendments on Report in another place so that where the determination of a person's "best interests" relates to life-sustaining treatment, any decision maker must now,

"begin by assuming that it will be in that person's interests for his life to continue".—[Hansard, Commons, 14/12/04; Col. 1618.]

I ask noble Lords to consider the full import of those well intentioned words. Far from making the situation better, this change actually makes the situation worse by encouraging decision-makers to adopt an approach based on euthanasia in decision making. It invites the wrong question to be asked; namely, "Is it in this person's best interests for his life to continue?". The right question to be asking is: "Is it in this person's best interests to be provided with this treatment?". Focus is placed on the worthwhile nature of the treatment rather than the worthwhile nature of the person's life. That thinking again recalls the emphasis in the remarks to which I referred earlier about the economic costs of treating the sick—an issue that we must guard against.

I hope that the Government will look again at this matter in Committee. From the start I have argued that it should be made explicit on the face of the Bill that when taking decisions about another individual's personal welfare, the decision-maker must consider—as one factor along with many others—the person's life and health as basic to that welfare. That is perfectly reasonable and I have to confess to being slightly confused as to why the Government have not agreed to such an amendment thus far.

The third and final area that I would like to briefly flag up is that of medical research on the mentally incapacitated. The Joint Committee on Human Rights severely criticised the Bill's proposals on medical research on the mentally incapacitated, particularly the controversial area of non-therapeutic research. The Joint Committee pointed out that the provisions in the Bill did not match those of the European Convention on Human Rights and Biomedicine. The UK has not yet ratified the convention, but accepts in relation to its provisions on research that it represents "long-standing international consensus". The report states:

"We find it impossible to avoid the conclusion that the nature of the benefit from the research required in clause 31(4) of the Bill has the effect of lowering the threshold of when research will be permissible compared to the standards contained in the Convention. The absence of a reference to the potential benefit being 'real and direct' in clause 31(4)(a), the breadth of the test for whether the research is intended to add to the sum of general knowledge on the subject under clause 31(4)(b) and the absence of a structure in which it is only in exceptional cases that research may be conducted which does not have the potential to confer a direct benefit on the person concerned, all amount to relaxations of the standards contained in the Convention".

It is surely incumbent upon the Government to ensure, as the Joint Committee on Human Rights suggests, that the provisions on research are in accordance with internationally agreed standards. It is difficult to comprehend why a Bill, which purports to safeguard the rights of the mentally incapacitated, should allow research to take place on incapacitated people without their consent and without benefit to the person being experimented upon. Assurances from the BMA and others that everything will be in order and that we just have to trust the researchers do not really wash with the general public.

The World Medical Association's Declaration of Helsinki provides a useful model for the Government to adopt, in particular the final section on non-therapeutic research. I commend to the Government parts 1 and 4. Part 1 states:

"In the purely scientific application of medical research carried out on a human being, it is the duty of the physician to remain the protector of the life and health of that person on whom biomedical research is being carried out".

Part 4 goes on to say:

"In research on man, the interest of science and society should never take precedence over consideration related to the well-being of the subject".

That final paragraph is particularly relevant to the Bill. If that form of words could be incorporated into the Bill, it would assuage a lot of the fears surrounding medical research on the mentally incapacitated. The Government could also help by giving us some clear examples of the types of non-therapeutic research on the mentally incapacitated that they envisage being approved under the Bill's provisions.

The three areas of concern that I have mentioned—euthanasia by omission, best interests, and medical research—can all be addressed successfully by the Government, enabling the Bill's passage at Third Reading and through the final stages in another place. The amendments that I and other noble Lords propose would strengthen protection for vulnerable adults who fall under the Bill's jurisdiction. I hope that the Government will accept the spirit of this constructive criticism and engagement and feel able to respond when we reach Committee and Report stages.

Photo of Lord Brennan Lord Brennan Labour

My Lords, this Bill has considerable moral and social implications, which when taken together make the consideration of its terms particularly onerous for this Chamber. When considering a Bill dealing with mental incapacity, whether one is against it or in favour of it, it is extremely important to note that it is designed to provide a system of care for people who do not have capacity for the whole of their lives, whether that incapacity dates from birth or occurs in later life. Life or death at the end is important, but the structure of the Bill is for the whole of life.

I shall give three examples from my professional experience. Some children are born brain damaged and will never have capacity or cognitive function, yet they are loved and they can love; their life has value. There are those who once had capacity who, by accident or illness, have lost it. In one such case, a client whom I represented had for 12 years, while being able to walk and grunt but not talk, been treated as a zombie, because his family did not believe that he was capable of any cognitive function. After obtaining a judgment on liability and getting an interim payment, at the second meeting with a speech therapist who knew about communication my client was able to converse with her. When challenged by me in conference, he readily spelt the word "encyclopaedia". Yet his family—his carers—were convinced for 12 years that his life was pretty well worthless.

The third category comprises the physically disabled who suffer a head injury. Because of their physical disability they are awkward and difficult to deal with—yet they have capacity. One thing that they are awkward about is having people treat them on their merits as a disabled person, rather than treating them in a way that people would expect they wanted to be treated.

Those three examples—of permanent incapacity, the onset of incapacity and the challenge of capacity—illustrate the enormously complex range of matters that we are discussing. On the one hand, those who are against the Bill should not find succour in the strident, either in the content or tone of their contributions. On the other hand, those in favour should not find succour in the belief that the Bill has a good purpose and that all problems will be solved in the end by a good code of practice. That is not good enough for effective legislation in a complex area.

What are the complexities? First, the matter is complex. The code of practice, covering seven categories of people, runs to 136 pages. My noble friends Lady Pitkeathley and Lady Royall confirmed the importance of educating those who might be involved in these problems about everything related to the matter. On palliative care, a decision made about incapacity and what someone wants to be done about his life, taken when poorly informed, is not a fair, just or proper basis for ultimately terminating that life. People must appreciate that palliative care has changed the horizon of death and created dignity for the dying, to a far greater extent than it ever did in the past.

The second point of complexity is the question of mental capacity. It can vary from somebody who is teetering on the brink to somebody who is totally incapable in terms of mental function. Who is to judge? Should it be a local GP, if it is a difficult case—and how? Should it be a nurse or a carer—and how? Who is to decide when the stage of incapacity has been reached and when a court, attorney or deputy can act as the proxy? Those are serious issues, and the code of practice must include an effective way in which to determine incapacity.

The third area of complexity relates to "best interests". Clause 4 deals with a process of acquiring evidence, but it does not give us the criteria for what are the best interests, personal or financial, that will dictate a decision, yeah or nay, in favour of particular medical decisions. No criteria are given. Subsections (5) and (10) are on the periphery of criteria but do not give them. If the Bill does not tell us what best interests are—whether they depend on the opinions of the family, the quality of life, intolerability, which are nebulous concepts—who is to determine them and how? That is a serious question.

I turn next to the effect of advance direction. That they should be in writing seems obvious, otherwise the person who is subject to incapacity might become the victim of his own capricious comment, which may have been oft-repeated. It should be in writing; but what of the state of affairs when, as time goes by, Clause 25(4) does not operate, and the doctor, whatever the terms of the advance direction, decides that he is medically satisfied that it is not in the patient's best interests to terminate treatment? What is then to happen? Is the doctor to go to court, as the Bill envisages? Is the advance decision to become mandatory, even in circumstances in which pursuing the notion of autonomy actually damages the patient's best interests? How would one resolve the conflict between the doctor and patient if the doctor genuinely believes that treatment should continue? If it is to be by a decision of a court, I return to the question of "best interests". What are they?

Finally, there is the question of the withdrawal of artificial nutrition and hydration. The fear expressed by many is not that the Bill is intended to introduce euthanasia by omission—that is patently absurd—but that by its terms it might create the risk of that event. Therefore, they are saying, we must get the terms right. Clause 58 rehearses the existing criminal law: murder or manslaughter or assisted suicide involving acts of commission, not omission. The query then arises of how the Bill deals with the problem of termination of treatment which by omission—stopping the treatment—causes a death.

Perhaps I may remind the House of what Bland was about: someone in a permanent vegetative state. The Official Solicitor's position was that to withdraw treatment was murder. The House of Lords decided that it was not murder because to withdraw treatment was an omission and did not come within the definition of murder. But the patient was in a permanent vegetative state, had no prospect of recovery and was completely insensate. In the House of Lords' finding for the doctor and the decision to withdraw treatment, two of the five said, "This is not for us to decide. This is an issue for Parliament to decide on behalf of the country".

What the House of Lords had in mind surely was not the Bland case but where the patient is sensate to some degree. There may or may not be a question of recovery; prognosis as well as diagnosis may be exceptionally difficult. Are you then to withdraw treatment and rely on Bland or some notion of best interests that appears to be reasonable in the circumstances of the particular case? That seems to many to be extremely dangerous because it raises the prospect that somebody who is not in a permanent vegetative state and who is not dying can have treatment withdrawn, which will end his life. I know of no other way to describe that than euthanasia. If there is a risk, let the Bill clear away that risk by proper amendment.

I am very much reassured by the Government's desire to come forward with an amendment. I cite the correspondence between my noble and learned friend the Lord Chancellor and Archbishop Smith and the undertakings given by Mr David Lammy at Report stage in the other place in December. The Prime Minister has spoken to Cardinal Murphy-O'Connor. With today's undertakings, we can expect a genuine attempt to reach a solution to reassure the country that this Bill could not be used to create euthanasia by omission.

It does not really matter what we think the Bill means, what we hope it means or what we intend it to mean; a Bill like this means what it says. If it says that euthanasia by omission is acceptable by inference, I have counted seven or eight public statements—not just by pro-euthanasia lobbyists, but by health economists—saying that living wills should be given to every patient coming into hospital because it will save a lot of money as well as help those who favour euthanasia.

These are genuine concerns. This House of ours is not a crystalline ethical world in which we are all capable of taking perfectly rational and enlightened decisions. That is not the real world. This Bill will be tested many times as to its scope and effect. It is our obligation to get it right.

As regards the Committee and Report stages, I should stress that those of us who question how to get this legislation right are not against the Bill; we are in favour of good law. We are not lacking in compassion; we are in favour of social principles of overriding value. When we reach that stage, I hope that the House will constructively, with the Government, seek to make this as good a Bill as its proponents wish it to be.

Photo of Baroness Finlay of Llandaff Baroness Finlay of Llandaff Crossbench

My Lords, I must start by declaring an interest as I am involved clinically in end-of-life decisions on a daily basis for patients in palliative care. I also sit on the UK Biobank ethics and governance council.

Like so many noble Lords who have already spoken, I welcome the Bill. It captures good practice. I believe that it will result in better practice in a more widespread way. I think that it also captures good practice in the way in which it has been created. I should like to commend the excellent, open attitude that I experienced from the noble Lord, Lord Filkin. I believe that the Bill team took its lead from him. The committee of the noble Lord, Lord Carter, also listened to and considered everything put before it. Those were examples of good practice, too.

The recommendations of the noble Lord's committee are very important. We must take on board his words today about looking again at the refusal of treatment in the light of Burke judgment and address that as a matter of urgency.

Every day, myriad complex clinical decisions are taken in the United Kingdom. I think that the Bill will help to clarify those decisions. However, many of those decisions involve shades of grey; they are not black and white. Let us consider the example of fluids. A patient is to have fluids, but how much, and by what route? What are the constituents of the fluid? Will it be administered by oral sips or subcutaneously? Will it be an intravenous drip or a central line? Will it be TPN? The list goes on.

Those are not straightforward, simple, black and white decisions. That is why the Bill has to be a framework. It cannot simply deliver a verdict one way or the other for each clinical decision. The other problem in clinical practice is that things change all the time—sometimes hour by hour, not just day by day or month by month. Communication is the key to that. The noble Lord, Lord Brennan, has just outlined the importance of communicating with the person, assuming that they have capacity and that one is doing all one can to enhance that capacity.

Modern technology can help in so many ways, from video recording by means of mobile telephones to the rapid creation of images to explain treatments. Technology is often credited with miraculous life-conserving abilities, but the miracle is that it usually exercises those abilities by means of much less invasive and less risky ways than were used formerly. However, all those developments owe much to research. Sometimes those who lack capacity are not the beneficiaries of the research—benefiting, for example, from the improvements in the management of acute head injuries—whereas others do benefit. I shall return to the issue of research. I should like to begin with the issue of advance decisions.

Advance decisions are already recognised in common law. Clinicians can be sure that an advance decision is valid only if it is properly recorded and if it is situation-specific, if it has been witnessed that it is voluntary and if it is reviewed often, particularly as the situation changes. I should hope that the Bill's ultimate provisions will make advance decisions more situation-specific. Such decisions must be renegotiated if possible. Although the expression of a wish in advance is helpful, it would be a nightmare to make a non-specific advance statement in any way legally binding unless it is very specific.

Advance decisions, as I say, must also establish equipoise for the person who wants to know that all options in care will be considered and if possible tried, just as someone may want to state that he does not want something to be done and that he will want to allow natural death to occur if that is the way in which his disease process is taking him. Rather than checklists, it might be helpful to create a care plan for negotiating an advance decision so that there is a procedure of negotiation and conversation between the person with the medical knowledge and the person to whom such knowledge should apply. I have concerns about allowing the lawyers to become over-involved in the drawing up of such statements and plans.

It is certainly true and right that no one can be treated against his will. We must be quite sure that things are not done to patients that are quite clearly against their will. In the process, however, they should have all the supportive care and everything should be done to maintain their comfort. If we do not treat someone, it does not mean that we will walk away and abandon them. They may not want an operation or a gastrostomy, but we still must care for them.

I recall a woman who had motor neurone disease. She had great difficulty in communicating, but she was very clear that although she did not want a gastrostomy, she did want a cup of tea. So I made her a cup of tea. Much to the astonishment of the rest of the staff, she did not choke on it. She carried on with sips of tea—that was her fluid—but she did not want a gastrostomy. We have to be very specific with patients.

I turn briefly to Clause 58. I believe it is not strong enough to ensure that a legal loophole does not exist. I hope that the Government will bring forward an amendment to the principles on the face of the Bill so that nothing involving a motive to kill shall be lawful. That is something we need to address.

The excellent and moving maiden speech of the noble Baroness, Lady Chapman, expressed the concerns so well. This Bill is not intended to be, and must not be, about euthanasia. The lasting power of attorney can trump an advance decision but I hope that this will be used only for life-conserving management. Those given financial or welfare powers must be subject to scrutiny. I hope the Minister can assure us that no one will be able to hide behind a duty of confidentiality and mask ill-informed or mischievous decisions.

I have some questions about advocates. How will they be trained? How will they be recruited? How will they work if there is no communication, or communication is very difficult? What if there is conflict within the clinical team and there is disagreement? I was fortunate enough to be able to take the early draft form of the code of practice on my summer holidays as my holiday reading. I am most grateful to the Government for having afforded me that privilege. I believe that it will have to be a living document and will have to be revisited as technology advances to allow us to adapt it.

The Government are to be commended for having had the courage to include research on the face of the Bill. Compatibility with the Human Tissue Act is absolutely crucial so that consent is enjoined to use tissue and data held even if a person then withdraws from providing ongoing samples. If consent is given, it must be able to extend beyond the time that a person retains capacity. In genetics research it can be very important to get a blood sample. While no direct benefit to the person occurs, there is philanthropy and that is of benefit. I do not believe we have any evidence that those who lack capacity are any less philanthropic towards the rest of the population than those who have capacity and who willingly donate samples for the benefit of others. However, it may be important to hold someone while a blood sample is taken so that it is done quickly and efficiently. I have a small concern with the Bill's wording in that regard and I may table a probing amendment to that effect.

However, as regards research, it is not possible to predict whether or not a procedure will be beneficial to an individual. If a person is already ill, possibly precariously ill, the concept of additional risk needs to be considered when you are weighing up a research proposal. When we discuss best interests it will be helpful to have the checklist to ensure that the stages of thinking have been gone through—that the processes are there but also to record conclusions clearly so that they can be audited and challenged.

There is more work to be done but overall the Bill is to be welcomed. It must leave here with a clear message that the default position is the duty of care towards conserving life in the best form possible for that individual patient and yet to allow natural death. It will then improve care and decisions as everyone must be assumed to have capacity and everything must be done to communicate and to enhance whatever capacity a person has.

Photo of Lord Turnberg Lord Turnberg Labour

My Lords, we have had so many important and impressive speeches today that I doubt whether I can enlarge upon them or, indeed, even attempt to improve on them. Therefore, perhaps noble Lords will be relieved to hear that I do not intend to focus on the issue of advance directives, even though I think the Government have gone to great pains to try to get the matter right. They have gone a long way to introducing safeguards in a way which I believe is likely to be acceptable at the end of the day.

I shall, of course, consider very carefully the impressive words of my noble friend Lord Brennan, even though it is conceivable that he may have extrapolated a little from what the Bill suggests. I wish to make a few comments on Clauses 30 to 33, which deal with research in regard to patients lacking capacity. Here I declare an interest as scientific adviser to the Association of Medical Research Charities and as a recently retired vice-president of the Academy of Medical Sciences.

The Bill sets out the conditions under which research may be undertaken. These are by and large clear and welcome and offer considerable safeguards to patients. For example, research can be undertaken only with a research ethics committee approval. It can be done only if it is relevant to those specific patients who lack capacity and to their particular diseases, and where it cannot be done on other people who are able to give consent. If patients have even limited capacity to consent, that consent should always be sought. That is good.

Of course, research involving patients lacking capacity will always be necessary and important if we are to make advances in treating them. How else could we decide how to manage patients brought into hospital unconscious after a head injury or a stroke? Without research we would not know whether giving steroids to prevent brain swelling or administering anti-clotting drugs after cerebral thrombosis was helpful. Yet that research must be done at a time when patients are incapable of giving consent.

The same type of reasoning lies behind the need to undertake research on better treatments and better care for mentally ill patients. I believe that the safeguards set out are very helpful and should reassure most people that unnecessary or inappropriate research against the patient's best interests will be prohibited. However, there are one or two areas that I hope my noble friend the Minister will be able to clarify. First, when a legally competent person gives consent to research, does that consent survive if and when the patient becomes incapacitated? Such may be the case, for example, in a patient with manic depressive psychosis who may suffer wild fluctuations in capacity. It is suggested in Clause 2(1) that capacity is judged "at the material time". That phrase needs clarification in the light of these considerations.

Secondly, an issue arises concerning the nature of research which, because it is research and its results cannot therefore be predicted—if we knew before we started that treatment A was better than treatment B, it would be unethical to undertake the research—it follows that the research will not necessarily help a particular patient. Its main purpose is to try to improve treatment for future patients even though we know that in general those who participate in research and in clinical trials, whatever their outcome, do better on average than patients who do not. However, a problem with this may arise in relation to Clause 30(1) which suggests that research is "unlawful unless" it benefits the participants. That could allow an interpretation that Clauses 30 to 33, which set out more fully what is intended, are additional rather than enabling provisions. That is not what I imagine is the intention of the Bill. That wording should be looked at again.

A very welcome amendment was made on Report in the other place to Clause 31(2), which allows research to be undertaken into conditions which cause or contribute to impairment or disturbance of the functioning of the mind or the brain. It was a very helpful amendment and will allow certain types of intensive care research, for example, research into treatment of cardiac arrest, where patients are unconscious. However, there are circumstances where the condition for which research is necessary is a condition which is only associated with the mental impairment and is not causing or contributing to it; for example, impairment of immunity in patients who are lacking in capacity. A minor change to the wording here might be helpful. Of course, any change will always have to be subject to the safeguards in Clause 31(3) which only allows research on these patients which could not be carried out on patients who are able to give consent; that is, it has to be relevant only to the patients lacking capacity.

This Bill is a good one and has my support. However, I hope it may be possible for my noble friend at least to offer some comfort on the points that I have raised.

Photo of Lord Goodhart Lord Goodhart Shadow Minister, Law Officers (Constitutional Affairs)

My Lords, I am delighted to be following the noble Lord, Lord Turnberg, in this debate. Three weeks ago I collapsed in the Library corridor, and when I came to I found myself being attended by him. It is only in your Lordships' House when you pass out where you are likely to come to and find yourself being attended by a former president of the Royal College of Physicians.

This Bill is sponsored by the Department for Constitutional Affairs. In spite of that, I find myself the only lawyer speaking in this debate, apart from the noble and learned Lord the Lord Chancellor and the noble Lord, Lord Brennan. As a lawyer, I start with the legal issues. I greatly welcome what might be called the main lawyers' provisions of the Bill. I welcome the introduction of lasting powers of attorney, which make a number of important improvements to the system under the enduring powers of attorney, in particular the extension of powers of attorney to decisions on matters of welfare. I agree with some of the speakers today that further improvements are possible.

Secondly, I welcome the reconstruction of the Court of Protection as a proper court of record with wider powers, easier access and higher standing than the existing court. Thirdly, I welcome the creation of the office of public guardian, and finally I welcome the implementation of the Hague Convention on the International Protection of Adults in Schedule 3.

I have a few technical points on those issues that have not been raised by others. I mention just two of them today, which are technical but not unimportant. First, Clause 44 deals with nominations of the judges of the Court of Protection. Those are to be made by the Lord Chancellor, which is inconsistent with the system that will take effect if the Constitutional Reform Bill is enacted. Judges of the court of protection will already hold judicial office, so it is a matter of judicial deployment rather than the making of new appointments. Under the Constitutional Reform Bill in the concordat, it should be a matter for the Lord Chief Justice rather than the Lord Chancellor or the Judicial Appointments Commission.

I realise that the Bill cannot be drafted on the basis that the Constitutional Reform Bill is already law. However, can the Minister give an assurance that Clause 44 will be modified to bring it into line with the Constitutional Reform Bill when enacted? How will that modification be achieved?

Secondly, Clause 49 provides for the Lord Chancellor to make Court of Protection procedural rules. The general practice nowadays is for rules of court to be made by a procedure committee. For example, the Courts Act 2003 created a new criminal prosecution rules committee and a new family procedural rules committee to add to the long- standing civil procedure rules committee. The Bill should provide for a Court of Protection procedural rules committee. I wonder why that was not done.

Speakers have mentioned two points of particular significance. The first involves problems resulting from the Bournewood gap, which need to be dealt with urgently, particularly in the light of the recent decision of the European Court of Human Rights, which was mentioned by the noble Baroness, Lady McIntosh, and a number of other speakers. Will the Government undertake to deal with this, either by amending this Bill or by suitable provisions in the forthcoming Mental Health Bill? It seems to me that if the amendments are not included in one or other of those Bills, there may be a long gap before another legislative opportunity arises.

Secondly, Mencap and other leading organisations supporting the Bill, and several other speakers, have recommended that the role of independent consultees should be extended to cover consultation on questions such as serious medical treatment or changes of accommodation not only where the patient is, as they describe it, "unbefriended" but where the patient is befriended, because even where the patient does have a member of the family who is authorised to take decisions, it may well be desirable that there should be an independent person involved in the taking of those decisions. I see the force of this argument, and I hope that the Government will consider amending the Bill to take it on board.

The question of withdrawal of treatment has been dominating the debate. I am in the course of making a living will. The issue of withdrawal of treatment has proved highly controversial, to the surprise of those of us who regard the Bill as no more than endorsing existing court rulings, particularly in the Bland case, and not as extending the law. Euthanasia is an extremely important issue on which there are deep differences of opinion. I agree that this Bill should not, and does not, legalise euthanasia. As the right reverend Prelate the Bishop of Worcester said, that is a completely different issue. Whether or not we support the Assisted Dying for the Terminally Ill Bill proposed by the noble Lord, Lord Joffe, is not relevant to this Bill.

Opposition to the Bill comes on this issue from two closely related but perhaps slightly separate groups. First, there are those who object unconditionally to the withholding of any form of life-extending treatment, and who regard it as a step towards euthanasia, or even a form of euthanasia. Secondly, there are those who are concerned with particular aspects of this problem, particularly the withholding of artificial nutrition and hydration. The views of the first group I respect but disagree with, despite the powerful maiden speech of the noble Baroness, Lady Chapman, supported by the noble Lord, Lord Clarke of Hampstead, the noble Baroness, Lady Masham, and the noble Lords, Lord Maginnis and Lord Alton. The noble Lord, Lord Brennan, supported this view to some extent, but in an interesting speech it seemed to me that he sought a degree of certainty in the Bill that is neither practicable nor desirable in a context where the cases are likely to vary so immensely.

It is well established that adults with a mental capacity to do so are entitled to take a decision to refuse treatment. Jehovah's Witnesses can refuse blood transfusions. Cancer sufferers who have not been helped by a course of chemotherapy can refuse to take a second course with the certainty of unpleasant side effects and a limited hope of success. But there are many cases where, by the time that the decision to accept or refuse treatment has to be taken, the patient no longer has the capacity to take it. Why should not someone therefore be able to take that decision in advance? Why should not someone else be able to take that decision if they reasonably believe that it is in the patient's best interest and what the patient would have wished? The SPUC described in its briefing the withholding of treatment as "euthanasia by omission". I reject that description. If the withholding of treatment of an incapacitated person is euthanasia, a patient with capacity who refuses life-prolonging treatment must logically be treated as committing suicide.

I recognise, of course, that an advance decision is a solemn matter and must be shown so far as possible to result from careful consideration and a settled mind. I accept that, if the decision is to withhold treatment, that decision must be contained in a signed and witnessed document and must be specific about the treatment to be withheld. Oral statements are not enough. It is difficult to tell how considered they are and how accurately they have been remembered by the hearers. But if there is a signed and witnessed document, why should it not take effect? It cannot be because there is any absolute priority to the maintaining of life. If such a priority existed, it would overrule the right of a patient with capacity to refuse treatment.

Questions about the withholding of nutrition and hydration are more difficult. I certainly understand and to some extent share the concerns about withdrawal, but I would not wish to reverse the decision in Bland authorising the withdrawal of artificial feeding and hydration from a patient in an irreversible coma. The withdrawal of nutrition and hydration by natural means is never permitted under the Bill; some of those who oppose the Bill have failed to appreciate that point. Withdrawal or refusal of artificial feeding or hydration should be possible in cases where continuance would be burdensome to the patient or the patient had specifically requested withdrawal of the treatment when competent. That is exactly the position of the Bill under Clause 25(5).

We have not yet seen the text of the amendments that will give effect to the undertaking given by the noble and learned Lord the Lord Chancellor to the Archbishop of Cardiff. However, it certainly seems likely from the terms of the correspondence that those amendments will be broadly welcomed and that we will be happy to endorse them.

This has been a much better debate than that in the House of Commons on 14 December. Unlike it, this debate has been rational, orderly and polite. I agree in particular with the contributions supportive of the Bill from the right reverend Prelates the Bishop of St Albans and the Bishop of Worcester, both of whom made moving and profound speeches, and the contributions of the noble Lords, Lord Carter, Lord Rix and Lord Adebowale, and of the noble Baronesses, Lady McIntosh, Lady Greengross, Lady Murphy, Lady Pitkeathley, Lady Royall and Lady Finlay.

This is a good Bill. It should not be derailed by objections based on philosophical views that are held passionately and honourably by some, but are not acceptable to most.

Photo of Baroness Hanham Baroness Hanham Shadow Minister, Local and Devolved Government Affairs, Deputy Chief Whip, Whips

My Lords, I am not sure whether it is necessary to do so, but I declare an interest as chairman of a National Health Service hospital; perhaps I ought to lay that on record to start with. Before going any further, I also want to congratulate the noble Baroness, Lady Chapman, on her very moving maiden speech. We are fortunate to have her contribution to the Bill during this process. She has made the most excellent start in what I think that she described as this lovely place, with which we would all agree.

The noble Earl, Lord Howe, made it clear at the beginning that we by and large welcome the Bill, although we have some constructive reservations, as do many people in the Chamber today. Any thoughts that the Bill might be non-controversial—if indeed anyone ever thought that it would be—will now have been dispelled, not only by our debate, but by the degree of scrutiny that it received in the other place, or at least parts of it. As many people said, the Bill touches on very sensitive and ethical issues, not all of which are capable of a resolution which will be acceptable to everyone. Some, such as the bringing into statutory force of advance directions or—the term in common currency—living wills raise considerable concerns. At present, living wills are a common law matter, whereby those who wish can give their instructions to a third party, but once enshrined in statute the onus of responsibility would be increased for all those involved.

While the Government have made it plain that they have no intention to open the door to euthanasia through the Bill—and I apologise for referring to this matter again, but it has been raised—by their inclusion of the declaratory provision in Clause 58, there will remain a fear that such a provision would carry with it, by both definition and practice, a risk of a doctor unwittingly being caught up in a patient's own intention to die, given certain medical circumstances. Many speeches this afternoon have returned to this vexed issue and it is one which we will be considering in more depth in Committee.

The interpretation of an advance decision will be left ultimately to the doctor, in consultation with the family, and to the donor of lasting power of attorney or the court officer appointed under the new Court of Protection. The circumstances still need to be settled regarding when the "attorney"—the person in whom the person making the direction had confidence and trust at one stage of their lives—is not around—perhaps abroad or, even possibly, having died—to interpret the intention of the direction or to contribute to the decision as to what that person may or may not have wished, under circumstances given at a different stage.

I appreciate that there is some mention of that in the Bill, but we may still need some further clarification as to who, under such circumstances, will have the role of taking part in the final decisions when the trusted advocate is no longer there. Indeed, we may be left with an adjudicator who does not know the patient particularly well. This matter may require some further examination. Perhaps the Minister could clarify who would be appointed under such circumstances.

The noble Baroness, Lady Barker, drew attention to the need for training. What mentoring, training or support will be available to those being asked to act as advocates or court deputies for advance decisions before they agree to undertake the role? It is one thing to take on a power of attorney to deal with finances and possessions, but it is another to be asked to make, or contribute to, decisions regarding the withholding or withdrawing of treatment, which almost certainly results in death.

There have been discussions about the Bland case and the question of doctors being permitted to withdraw both hydration and nutrition to a patient under certain conditions. The Minister has said that he will introduce amendments to clarify that situation and I believe and hope that they will be helpful. There has been no subject that has generated more letters, e-mails and telephone calls than this one. This afternoon I have received a long message—I am sure that I am not alone in receiving it—on behalf of the Muslims in this country, drawing attention to their belief that only God may give and take away life. That would, of course, be the position of many other believers too, and it is, therefore, imperative that amendments make it plain that, in what are likely to be the most exceptional circumstances—the withdrawal of nutrition and hydration—the taking of life is not the aim and the relief of suffering is.

However, some people will question whether the stress, even to an apparently insentiate patient, of the withdrawal of hydration will make matters better, and will not result in the situation being much worse for the patient. That matter was graphically described to me by the father of a person in such a position of being left without hydration.

We all know that individual cases make bad law. But the Bill, which is heralded as being of great benefit—I readily accept that it will be—requires the answer to many such questions, or, at least, for them to be dealt with as directly as we can. At the end of the day, it is a voluntary decision to make an advance direction, but if it is to be enshrined in law, the details and the processes need to be as clear and comprehensible as possible.

It would be helpful if we could identify who it is anticipated will become deputies of the Court of Protection and, as the noble Baroness, Lady Masham, asked, independent consultees in respect of those who are in the care of the NHS or the local authority. The noble Lord, Lord Rix, drew attention to that point as well.

Of course, advocates and mediators are already appointed in a number of situations. But in this instance it would be helpful to know where it is intended that such people will be drawn from, who they will be, where they will be trained and whether they will be informed in the work that they will have to do for the purposes of the Bill. If they are truly to interpret the wishes and views of patients who find it difficult or impossible to express their ideas, they will need to be specially trained. The noble Baroness, Lady McIntosh, also referred to this issue. Will that training be provided and who will pay for it?

As a former Mental Health Act commissioner, I am aware of the pitfalls associated with the treatment and care of patients who fall outside the statutory consent procedures contained in the 1983 Act. As many noble Lords have said, it is essential that the Bournewood gap is cleared up as soon as possible. The noble Lord, Lord Carter, raised that point and it was also mentioned by other noble Lords. I am sorry to see that she is not in her place at the moment but probably no one in this House is more experienced on these matters than the noble Baroness, Lady Murphy. I hope very much that we shall be able to take advantage of her knowledge during the proceedings that follow.

My noble friend Lord Howe and others—particularly the noble Lord, Lord Turnberg—drew attention to concerns over the provisions for research. Indeed, I think we may ask: what research, and for whose benefit? Those aspects will need to be clarified during the following stages.

I am conscious that there is considerable support for the Bill. Indeed, I have absolutely no difficulty with many areas of it, and I have touched on a few of them. Many noble Lords with even more experience than me have also raised concerns. I hope that by the time the Bill leaves this House we will have been able to satisfy ourselves that as many of those concerns as possible have been addressed. I believe we all feel that there is a need for the Bill, but it must be accepted confidently by all those who are likely to benefit from it.

Photo of Baroness Ashton of Upholland Baroness Ashton of Upholland Parliamentary Under-Secretary, Department for Constitutional Affairs, Parliamentary Under-Secretary (Department for Constitutional Affairs)

My Lords, it is a pleasure to follow the noble Baroness, Lady Hanham. Confidence in the Bill is a critical part of what the Government will seek to achieve as we take the legislation through your Lordships' House.

I begin, as always, by saying that I shall try to respond to many of the questions and issues raised. I shall undoubtedly fail to address them all and shall therefore write to all noble Lords who participated in the debate. However, as noble Lords have already indicated, many of the points will be dealt with as we take the Bill through its stages in your Lordships' House.

I am extremely proud to be winding up this debate on behalf of the Government and to be responsible for taking the Bill through its stages. It is a Bill for which I can take absolutely no credit. As noble Lords have indicated, that credit belongs to the organisations and campaigners who, for 15 years, have worked to bring the Bill to this point. I say to the Making Decisions Alliance and to the noble Lord, Lord Adebowale, on behalf of that alliance in his role as chairman of Turning Point, how grateful I am for the incredible work carried out by all the organisations. I am also grateful for the work that the noble and learned Lord, Lord Mackay, did in 1989 and to the Law Commission, which spent five years bringing forward a well considered and well thought-out report, enabling us to bring our deliberations to this point.

I agree with the noble Lord, Lord Alton, that the role played by my noble friend Lord Filkin has been exemplary. He was recently honoured by the Alzheimer's Disease Society—rightly so—for the incredible contribution that he has made. I was delighted that many noble Lords paid tribute to him and to the Bill team—unusually at the beginning of a Bill's passage through your Lordships' House as opposed to the end. I know that the team has been well regarded by many noble Lords, and I agree with everything that has been said. In my experience, the team has worked incredibly hard in a caring and thoughtful way to bring us to this point.

The chairmanship of my noble friend Lord Carter has been brilliant. I understand that 1,200 submissions were made to the committee and that 61 witnesses came forward, and its work enabled the Bill to be improved. I think that, in all, 99 recommendations were put forward. The vast majority were accepted and, indeed, they continue to be accepted as we speak, which is very important.

The noble Baroness, Lady Barker, described it as a framework Bill. I agree with that and for once we can support a framework Bill. For all the reasons given by the noble Baroness, that is right.

The speech of the noble Earl, Lord Howe, was superb. His description of the essential approach of humanity is something of which we can all be rightly proud, as I am on behalf of all those who have brought forward the Bill. We have had the benefit of a number of important personal speeches and professional speeches. Exemplary ones were those of the noble Baronesses, Lady Finlay and Lady Murphy, but many other noble Lords, such as my noble friend Lord Turnberg have great experience in this area.

The noble Baroness, Lady Chapman, made a very powerful and personal speech—a critical approach to the Bill. We shall debate all the issues fully, but I say to the noble Baroness that it is nice to hear another northern voice in your Lordships' House, albeit from the other side of the Pennines from me. I look forward to dealing with the issues raised by the noble Baroness.

I welcome the support given to the principles behind the Bill: the principle that one is assumed to have capacity and that we start from the principle that one has capacity for each decision and then work through, rather than saying there is a moment when someone loses capacity completely. I thought my noble friend Lord Brennan's second example about someone who was perceived not to have capacity and then was found to be able to communicate was particularly poignant. That is a very good example of why we want to start from that principle.

The noble Baroness, Lady Greengross, was right to say that it is not easy therefore to look at definitions, but I believe that it is right that we start from here. Again, we shall discuss all these issues.

My noble friend Lord Christopher was concerned about Clause 1(4) and about unwise decisions. That is an important issue that I am sure we shall debate at length. I know that some of the professionals to whom I have spoken, the experts in medical provision, are worried about frontal lobe injuries and the potential for what one might classify as serial unwise decisions. I believe that we have catered for that in the Bill, but it is important that we enable people to make decisions that we consider to be unwise.

I gather that your Lordships have debated smoking. I missed the debate. I think it is unwise when a noble Lord walks out of your Lordships' Chamber and lights up a cigarette or drinks too much or spends a month's salary on a leather jacket that he wears only twice or three times—not that I did any of those things, I hasten to add. There are good examples of people doing things that we may consider unwise, but they have the right to do them. It is critical that we do not lose sight of that in the Bill.

My noble and learned friend the Lord Chancellor explained the issues concerning best interest. Our determination is to ensure that the best interest clause in the Bill is truly objective and that the decision makers' personal desire plays no part in that. We have made it clear that a person's interest in continuing life cannot be ignored. I say to my noble friend Lord Clarke of Hampstead and to the noble Lord, Lord Alton, that we want to put beyond doubt the fear that someone could use the clause to justify decisions or acts motivated by the desire to bring about a person's death, regardless of what would be in his or her best interests.

Accordingly, we shall introduce an amendment to the Bill to meet those concerns, and we shall share those amendments early so that noble Lords will have the opportunity to consider them. That point was raised by the noble Earl, Lord Howe. It is important that we do that. I am grateful for the welcome given to the Government's work on this. We shall ensure that we have those conversations and debates before Committee.

That is the key principle of the Bill. Any act done or decision made on behalf of a person lacking capacity must be made in the best interests of the person concerned. The right reverend Prelate the Bishop of St Albans asked whether the Bill could introduce euthanasia by commission or omission. My belief is that it could not.

The noble Baroness, Lady Chapman, the noble Lords, Lord Maginnis and Lord Alton, and my noble friend Lord Brennan were worried about the effects. The noble Baroness, Lady Chapman, asked whether the Bill would keep people safe, which is a very good way of putting it. I think it does; it increases the protection for some of the most vulnerable people in our society. A best interests decision is not only a medical or a doctor's decision; it is an objective decision which requires consultation. In a sense, it stops a doctor taking a unilateral decision because a decision must be focused on the individual and on the best decision for him or her.

Noble Lords will recall that we accepted the amendment tabled by George Howarth MP in another place that one starts from the assumption that it is in the interests of the patient for life to continue. I think that that is very life affirming. The noble Lord, Lord Alton, felt that that was not right and I look forward to debating the matter with him when we meet next week. However, I think that the provision does what the noble Lord looks for. We shall consider and discuss it with him.

The noble Baroness, Lady Masham, quoted a nurse from Stoke Mandeville Hospital saying, "If it was me I wouldn't want to live". That is precisely what the Bill does not allow. Objective "best interests" means that she must decide what is best for that person, not "what I would want if I was that person". Under the Bill, the nurse would not be able to behave in that way and would have to ignore what she thought about the matter. We believe that we have made the situation safer for people who are vulnerable. We will discuss these issues at greater length in Committee and at other stages of the Bill.

The noble Baroness, Lady Barker, raised the Burke judgment. Some noble Lords mentioned that the Department of Health has applied to join the appeal against certain aspects of the Burke judgment given by Mr Justice Mumby. We agree that people should be able to request artificial nutrition and hydration. Indeed, that happens now—and rightly so. But the judgment could be read as giving patients the right to demand any life-prolonging treatment they wish, no matter how untested, inappropriate or—dare I say?—expensive and regardless of their doctor's views as to whether it might benefit them.

As a result, it is not clear to practitioners what the law is. It is crucial that they have clear principles to follow if people are going to be given the best healthcare. That is why we feel obliged to appeal the judgment in order to clarify the matter.

My noble friend Lord Carter raised the issue in terms of the committee. We think that keeping advance requests within wishes and feelings, subject to the "best interests" clause is clearer, safer and more flexible—a point put very well by the noble Baroness, Lady Greengross.

A number of noble Lords talked about the judgment in the case of Mr Tony Bland. "A humane decision" was how the noble Earl, Lord Howe, referred to it. Since that decision, 36 decisions have been made by the court as a consequence.

My noble friend Lord Brennan talked about Parliament deciding these issues. I would cross-refer him to the interpretation given by my noble friend Lord Carter of how the Bill does that when he talked about Parliament deciding that in the context of the judgment.

My noble friend Lord Brennan said that Clause 58 deals only with criminal law and acts by commission and not omission. That is not right. If you withhold treatment that would be in the patients' best interests and they die, you could be liable for gross negligence and/or manslaughter. That is why the doctors went to court in the case of Mr Tony Bland. They wanted to be sure that if they withdrew that treatment they would not be prosecuted for murder or manslaughter. Clause 58 confirms that.

A number of noble Lords talked about what is known as the "Bournewood Gap". I begin my remarks on this by addressing the point made by the noble Lord, Lord Adebowale, that as we already had a solution in the draft Mental Health Bill 2002, why therefore did we need to consult? The problem is that the Bournewood Gap is not clear, even after the Strasbourg judgment. We do know that the previous Part 5 of the Mental Health Bill 2002 will not work. It did not include procedures for admission to hospital and it was also limited to people treated in hospital for a mental disorder.

Noble Lords will know the background to the Bournewood case. A gentleman with autism and learning difficulties met the criteria for being detained but was admitted in an informal way. Eventually the case brought by his carers went to the European Court of Human Rights, which deemed that he was unlawfully deprived of his liberty under Article 5 of the European Convention on Human Rights. It is a complex judgment and its implications are very complex too. There is a big question on precisely who might be or is affected by it and under what circumstances. These are not immediately clear. We have said that we will bring forward proposals for new safeguards as soon as possible. We will begin consulting very soon. But we need to consider too the different ideas and proposals that have already come forward and we will invite views on what safeguards should be put into place.

The Department of Health has issued interim advice to local authorities and to NHS organisations, which is available. We have placed a copy in the Library of your Lordships' House. It is true to say that timing has not been kind to us. The European Court judgments have left significant questions to be answered. We want to deal with the matter as swiftly as possible, but we do not wish to rush into it in a way that would be inappropriate. I shall keep noble Lords fully abreast with how those issues develop and we will of course endeavour to find solutions as soon as possible.

Several noble Lords, especially my noble friend Lord Carter and the noble Lord, Lord Adebowale, talked about the interface between the draft Mental Health Bill and the Mental Capacity Bill. I shall not take up your Lordships' time on that, as a letter is winging its way to my noble friend Lord Carter and the noble Earl, Lord Howe, as I speak. I could read it in to the record, but I suspect that that would take up too much of your Lordships' time. If I may, I shall make it available to noble Lords—I am sure that my noble friend Lord Carter and the noble Earl, Lord Howe, have received it—to enable a fuller debate to take place on that.

My noble friends Lady McIntosh and Lady Royall and the noble Baroness, Lady Barker, raised issues of communication and training. We have set aside £12 million for training of health and social care professionals at present under the Bill. There are other issues concerning training, and I agree with what was said about the need to consider communication both in how we deal with communicating with those who lack capacity, which I think was the point made by my noble friend, and the broader point raised by several noble Lords about communicating the fact that the Bill exists and its positive implications.

Noble Lords also talked about the independent consultee. I am not surprised that we had an interesting and extended debate on that. We have focused the safeguard in the Bill on the most vulnerable—the undefended, as we have described them; people who have no family or friends; people who have no one to consult on their behalf. We believe that that is right, but I can tell the noble Baroness, Lady Barker, that we will consider making changes to the name and further clarification in Committee. In response to the noble Earl, Lord Howe, and the noble Lord, Lord Goodhart, we will also be looking to extend the provisions through the regulation-making power in the Bill.

We want to consult broadly on the extension of the groups to be covered. We will be consulting with the Making Decisions Alliance co-ordinators and others to consider whom we should most appropriately cover to ensure that those who are most vulnerable are covered as effectively as possible. I hope that, as we debate those issues, they will become clearer.

The noble Lord, Lord Pearson, raised the specific issue about families and information. I have checked, and, under the Data Protection Act, it is possible for a person to access information concerning a patient if it is in the patient's best interests for them to do so. I shall write further to the noble Lord about that, but that is clear: families can get the information in the circumstances that he described. However, if an issue was raised by the case of RESCARE, as it was formerly known, I am happy to take that up with the noble Lord separately.

The noble Baronesses, Lady Masham and Lady Hanham, asked how we recruit and pay for training, and so on, for the independent consultees. I shall not go in to too much detail at this stage, but I accept that those are important issues. We want to create a high quality service, and many of the people who would be involved in the independent consultee service will already be providing advocacy in some form or another. However, 200 organisations across England and 40 in Wales are providing advocacy for all different kinds of individuals and needs. Training and ensuring that we get the service properly set up are important. I shall be happy to give more information about that as I am able as the Bill progresses.

I turn to issues concerning tough calls about decisions to refuse treatment. My noble and learned friend began by describing the process through which the Government have been. I share the analysis of the noble Earl, Lord Howe. Some people will not be satisfied with what we have done, but I agree with much of what he said. As the right reverend Prelate the Bishop of Worcester put it eloquently, it is right for people to be able to refuse treatment.

However, we have made several changes to tighten protection surrounding such decisions. We changed the wording to be clear that, if there is any doubt at all, the doctor should continue to treat and, to deal with the point raised by my noble friend Lord Clarke of Hampstead, to ensure that litigation could not follow. That point was made in another place: doctors could be sued if they treated someone when relatives said that they should not. That will not be the case. Part of the purpose of the Bill is to protect people when they are giving treatment to those who lack capacity. I recognise the issue about putting into writing—we have said that we will do this—decisions about refusal of treatment and being able to change those verbally. That is absolutely right.

Clauses 24 to 26, in particular, consider the validity of the time lapse of circumstances: whether the person has done anything that might suggest that they have changed their mind; when that is reviewed; has any information come to light; has the treatment moved on; have the circumstances changed in any way? Those are critical safeguards that we are right to include.

I take the point made by the noble Lord, Lord Rix, about a pro forma; some organisations have been looking at the issue. The noble Baroness, Lady Hanham, talked about the relationship between the power of attorney and advance decisions. Clause 25(2)(b) makes it clear that a lasting power of attorney created after an advance decision trumps the advance decision. I hope that that clarifies the point.

My noble friend Lord Clarke of Hampstead talked about Hammersmith hospital and box ticking, an issue that that august organ the Daily Mail brought forward. The Daily Mail reported on a research project on patients' wishes, undertaken at Hammersmith hospital. No one could be forced to make an advance decision; in any event, any duress would create doubts about the person's capacity. The new requirement provides a safeguard. If doctors have any doubts whatever, they can safely treat the patient.

The noble Baroness, Lady Masham, talked about cases where someone says, "I do not wish my life to be sustained". That is not an advance decision within the meaning of the Bill; a person needs to refuse a specific treatment in specified circumstances for it to apply. As Clause 25(4)(c) says, when new treatments are developed after an advance decision was made, the advance decision falls because the circumstances have changed. We will go through those matters in great detail, but I believe that we have addressed, or can address, most, if not all, of the points raised.

My noble friend Lord Clarke of Hampstead quoted Mr Iddon MP as saying that advance decisions would become legally binding. There is no doubt that advance decisions are already legally binding in England and Wales. There have been no Scottish cases to test the law in Scotland; hence its legislation remains silent. An advance decision is not, as the noble Baroness, Lady Masham, said, about putting somebody down or starving someone. The issues of care raised by the noble Baroness, Lady Finlay, are critical when one reviews this debate, and it is necessary to understand that as well.

Since the 1994 Select Committee on euthanasia, we have had much more case law. It is now very clear that advance decisions are already legally binding; therefore, we believe that we have taken the right approach. On Clause 44 the noble Lord, Lord Goodhart, rightly said that we needed to catch up with the Constitutional Reform Bill—that was well spotted. We will look at the matter and the issue of rules and come back to the noble Lord.

The noble Baronesses, Lady Barker and Lady Greengross, talked about financial abuse, which is of great concern to them. Like my noble friend Lord Christopher, they quoted Master Lush. I wish to make it clear that when Master Lush referred to abuse in 20 per cent of cases, he was talking about all EPAs, registered or unregistered. One of the critical safeguards in the Bill is that lasting powers of attorney must be registered. When they are registered, other people will be notified and can object. We are working with the financial institutions and the banks to check ways in which we can support them appropriately and to enable them to make the checks necessary to deal with financial abuse. We can talk further about the issue in Committee.

My noble friend Lord Christopher said that the court had a narrower power to reject a lasting power of attorney than it does with an enduring power of attorney. That is not true. Under Clause 22, the court can direct a lasting power of attorney not to be registered if the attorney has acted, or proposes to act, in a way that contravenes best interests. In response to another point raised by my noble friend, you can choose to be notified, but now with enduring powers of attorney you do not even need to register the document. I believe that the legislation provides additional safeguards, but we will look carefully at the matter.

On research, I was interested that the noble Baroness, Lady Barker, talked about the capacity to give, while the noble Baroness, Lady Finlay, talked about a philanthropic approach. It is important to remember that in the evidence to the committee—my noble friend Lord Carter will correct me if I am wrong—there was a feeling that people would want to participate in research and therefore that it should not be denied. I agree with the noble Baroness, Lady Masham, about the importance of research. We are trying to strike a balance between protecting potentially vulnerable individuals and providing a framework conducive to good research. As the noble Baroness, Lady Greengross, said, it is important to get that right.

I know that approval by an independent research ethics committee is of concern to the right reverend Prelate the Bishop of St Albans. My noble friend Lord Warner is looking at the whole issue of research ethics committees. I shall take to him the right reverend Prelate's suggestion about membership.

Of course, there will be consultation with family, friends and carers about the person's likely wishes and views to ensure that they are content for the research to proceed. We have made it very clear that if at any time the person does not wish to participate, the research should be withdrawn. There will be no right of appeal by the researchers to that. Again, we believe that we have got this right as regards enabling people to participate in research and in recognising the importance of research, but also understanding people's right not to participate.

As my noble friend Lady Royall said, there may not be direct benefit to the individual concerned. It might benefit him or her at a later stage or it might benefit other people. For example, it might change the care pathways that have been put forward. But I agree with the noble Earl, Lord Howe, that we must have strict safeguards, particularly for invasive treatment. We must get that right. We will look, of course, at the clarity within the code and the guidance offered.

My noble friend Lord Turnberg asked whether, if a mentally competent person gives consent to research, that endures once he or she has lost capacity. Currently, we are looking at that to see how we can best deal with that situation, particularly if someone agrees in advance to research. I shall come back to my noble friend on that. He also asked why Clause 31 provides that research is unlawful "unless". We will have to go back to parliamentary counsel on that because I am not entirely certain why. I hope that he has not spotted something that we should have spotted, but we will clarify that.

I agree with the noble Baroness, Lady Finlay, that there are very complicated and complex issues as regards research. The noble Lord, Lord Alton, referred to the ECHR. The Bill covers a wider set of research than that convention, which was specifically about research on a human being. For example, this Bill could look at research into medical records, stored tissue or social issues. Therefore, there is a different set of safeguards that, again, we believe we have got right, which are consistent with the widely accepted international standards on ethical research. These clauses are based on international declarations, such as the Declaration of Helsinki, the Council of Europe Convention on Human Rights and Biomedicine and the key principles set out clearly by the Joint Scrutiny Committee.

My noble friend Lady Pitkeathley was, I think, the only Member specifically to refer to the role of carers. I agree with ensuring that carers are well protected and with their critical importance, not least as regards the amount of money that it has been costed that they save the nation for the work that they do. I also agree that there is a lot to be done in public education. My noble friend asked about costs. I have a sheet indicating the costs and the money that has been allocated for this Bill which I will happily share with noble Lords.

My noble friend Lord Carter talked about the timetable for the Bill. Perhaps I may describe 2007 as the "end point". There is a lot to be done in the intervening time. I take my noble friend's point about the conceptual parts of the Bill, which we will look at very carefully. Some of those are still dependent on the functioning of the court, which, of course, is critical. But there is a huge cultural shift to be undertaken in that process as well. However, I would like this Bill to be in place while the noble Baroness, Lady Murphy, is still practising, to which she referred.

In conclusion, this has been an important debate. As the right reverend Prelate the Bishop of Worcester said, it is a Bill that could affect every one of us. It touches on every aspect of a person's life, including the kind of decisions that we all take for granted about how we spend our money, what we wear and what we do—very practical realities. As noble Lords know very well, it also touches on very difficult and ethical areas.

The Bill is complex and sensitive. I do not underestimate that for a second. In a sense, that is why it has taken 15 years for it to get where it is. We want to get the Bill right because of the millions of people who are relying on it. I am very grateful for the contributions made today and for the warmth with which noble Lords have received the Bill. We have had lots of different expertise and I have been struck by the commitment of your Lordships. However, I have to say that after more than five years in your Lordships' House, that was not unexpected. I very much look forward to taking this Bill through the Committee stage. As the noble Lord, Lord Rix, said, it is the business of government to do the right thing. The noble Lord is right, it is.

On Question, Bill read a second time, and committed to a Committee of the Whole House.