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Baroness Pitkeathley: 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
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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
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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
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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.
Lord Adebowale: 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
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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
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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.
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