[Relevant documents: The Report of the Joint Committee on the Draft Mental Incapacity Bill, Session 2002–03, HL Paper 189-I and HC 1083-I; the Government's reply thereto, Cm 6121; and the Fifteenth Report of the Joint Committee on Human Rights, Session 2002–03, HL Paper 149 and HC 1005.]
Order for Second Reading read.
I beg to move, That the Bill be now read a Second time.
I am delighted to be able to introduce this important and long-awaited Bill. Voluntary organisations, individuals and their families, and many Members on both sides of the House, have campaigned for the Bill for many years—since 1989. The Bill will empower, protect and support people who lack mental capacity. We can and should no longer dismiss people by simply labelling them incapable. Professionals, families and friends who care for people who lack mental capacity need to understand more fully and more clearly their legal rights and responsibilities.
The Bill will affect everyone in this country. Nearly 750,000 people have dementia. At some point, 1 per cent. of the population will suffer from schizophrenia and 5 per cent. from depression or serious bipolar disease. More than 5 million people in England and Wales are carers for people who lack mental capacity. All those people, and many others, may need decisions to be made on their behalf, or need to make decisions on behalf of someone else.
The Bill's journey began many years ago. In 1989, the Law Commission said that specific legislation was needed, pointing out that case law was unsystematic and full of gaps and that it often did not reflect changes in attitudes. The Bill has benefited from input from numerous people and organisations with experience, expertise and commitment. They include Age Concern, the Alzheimer's Society, Mind and the other organisations that make up the Making Decisions Alliance. I thank them for all their support and advice.
Many hon. Members know that a draft Bill was scrutinised last autumn by a Joint Committee of both Houses. I thank all members of that Committee for their commitment and dedication. We accepted the vast majority of the Committee's recommendations. The Bill is much improved as a result of that scrutiny: in particular, we renamed it the Mental Capacity Bill to emphasise its focus on enablement; we included a set of key principles up front to frame the Bill; and we reworked the clauses on acts in connection with care and treatment to make their purpose clear.
I thank my hon. Friend for giving way so early in his speech. The Joint Committee, of which I was a member, received many representations from people who regarded the draft Bill as introducing euthanasia by stealth—by the back door. We demanded assurances that that was not the case. I am sure that he will refer to the matter later, but will he take this early opportunity to reinforce that message, which some people still do not accept?
I am grateful to my hon. Friend for all the work she has done to bring the Bill to fruition. I know that in some of our communities there has been a debate with some groups that cast the Bill in that light, but we state categorically in the Bill, at clause 58, that it is not about euthanasia. Euthanasia remains a criminal offence in this country and the Bill does not change that fundamental arrangement. I am grateful to the Joint Committee for its work in stating that the draft Bill was not about euthanasia. I am also grateful for the work that we have been able to do on that important issue with the Catholic Church in particular, and for the Church's indication that the measure is not about euthanasia.
The Bill is about life and about people who suffer extremely debilitating diseases, such as schizophrenia and depression. Later in my speech, I shall discuss advance decisions, which are the matter that has attracted most attention. However, because the Bill is about the whole life of an individual, it will take me some time to reach that subject.
Will the Minister clarify his comments that the Bill is not about euthanasia? Does he accept that there is a difference between the act by omission and the act by commission, and that in the drafting of the Bill the Government have dealt with the act by commission? Carefully left open are the issues surrounding the Bland judgment, particularly as that refers to the act by omission.
I have said that the Bill does not change current common law. It makes it clear that any decision must be made in the best interests of the person who lacks capacity. We shall come on to discuss the advance decision, in particular.
Will the Minister be very specific? What concerns those of us who fear euthanasia by omission is the definition of treatment, not only in the Bill but in its associated code of practice, and particularly in the definition of futile treatment. Will the hon. Gentleman categorically assure the House, with no ifs and buts, that treatment does not include, under the Bill, the provision of assisted food and fluid?
I have said that the Bill does not change the current arrangement. Artificial hydration, with which I think the right hon. Lady is concerned, relates definitely to particular cases, some of which find themselves before our courts. The Bill does not alter that situation. Extremely difficult determinations have to be made involving hydration and nastro-gastric tubes and the balance between personal autonomy and dignity as well as sanctity of life. The right hon. Lady is right to pick up a difficult issue. As I have said, the Bill does not change the current law, the position on euthanasia or the difficult determinations that are made in the court of protection.
Many of us are concerned about how the Bill does or does not take forward the issue of euthanasia. Will my hon. Friend give the House an undertaking that if any of those people who do not, perhaps, have the capacities that most of us normally have are to have any of their rights infringed, they will have someone who acts as a champion for them and they will be able to go to an outside tribunal before any detrimental decision is made in "their interests"?
We have ensured that an independent consultee will assist with decisions involving health and welfare, put the best interests of the person who lacks capacity at the centre of decision making and established a new court of protection. Given all the safeguards that we have put into the Bill, which no doubt we shall scrutinise in detail, we have been able to proceed without setting up a separate tribunal system. I shall now make some progress.
I have said that we renamed the Bill the Mental Capacity Bill to emphasise its focus on enablement. We included a set of key principles to frame the Bill. We reworked the clauses surrounding acts in connection with care and treatment, to make their purpose clear. We made it clear that the court would set clear limits on the authority of deputies. We followed the recommendation to bring into statute legislation on advance decisions to refuse treatment, with clearer and tighter safeguards. We included provisions on research as it suggested, again with strict safeguards. The Joint Committee agreed that concerns linking the Bill with euthanasia appear to be misplaced, but it thought that it would be helpful to include additional reassurances in the legislation, and we have done so.
I now want to say why the Bill is so important. First, it is about the rights of the individual person. It starts by saying that individuals should be assumed to be capable of making decisions, and helped to make them. If they cannot make them, the Bill says that each decision or act under the Bill must be based on the "best interests" of the individual. Secondly, the law is unclear, and the Joint Committee agreed that we needed to clarify the law as it affects day-to-day life. Thirdly, the Bill makes it clear that relatives and carers should be consulted when other people do things without consent to someone who lacks capacity. Hon. Members will know from their own constituents that this does not always happen. People come to us and say that something has happened, and that the person concerned did not have consent. We have tightened up those provisions. Fourthly, the Bill clarifies what can be done, and who can do it, when someone lacks mental capacity, and emphasises that they must act in that person's best interests.
I am grateful to the Minister for giving way. I am also grateful for clause 58, and for the assurance that he has given to the House that this is not an attempt to introduce euthanasia by the back door. However, many Christian groups, including those in my constituency, are still very worried about this issue. Would it not be possible for the Minister to build in those assurances on the grounds of omission and treatment, as well as on the grounds set out specifically in clause 58? He would find an awful lot of good will around the House if he did so.
We have worked very closely with all the Christian communities, particularly the Catholic Church, and many of the provisions in the Bill, including clause 58 and parts of clause 25, are a direct result of recommendations made by the Catholic Church. Also, central to the issue of omission is the best interest principle. The principles underlying the Bill are up front in clause 1, which says that people who lack capacity can come in and out of capacity. We have sought to put safeguards in place in that regard. These are difficult decisions, however. Doctors, carers, parents and loved ones make difficult decisions every day of the week, up and down the country. The Bill puts a framework around that process.
Will the Minister set out for the House the standards by which the best interests of the patient are to be determined? It is certainly not clear from the Bill.
I am surprised that the hon. Gentleman says that. If he looks at clause 4, he will see that all circumstances are relevant. This is the first time that we have laid that out in statute. He will see the assumptions that should be made about someone who has or has not lacked capacity. He will also see that, for the first time, we are saying that loved ones should be consulted, and that a person's values, beliefs and concerns should be taken into account. It does not get much clearer than that. We have attempted, in the Bill, to ensure that the person who lacks capacity is central to the discussions about their best interests, and that those who know that person can make recommendations on their behalf. The best interest principle involves an objective assessment, however, that will be made primarily by a doctor.
I want to make some progress.
The Bill is about empowering and protecting people who lack mental capacity. That is its starting point. People have told us that they feel as though they have been "written off" as unable to do anything for themselves. That is why the principle of an assumption of mental capacity is set out in the very first clause of the Bill. The Bill also says that mental capacity must be considered in relation to the decision that needs to be taken at the time. People may be perfectly able to take decisions about some parts of their lives, such as what to wear, while needing a parent, a carer or the medics to come alongside them to help with other, more complex decisions, such as how to manage their investments.
The Bill also says that such people should not be treated as unable to make a decision merely because they make an unwise decision. We have all done things that our family or friends think are unwise. In a sense, the intention is to give people with impaired mental capacity the chance to express their individuality, as everyone else does.
The Bill also protects and supports people who lack mental capacity. Sadly, as we know, there are occasions when people without mental capacity are abused by those whom they trust. Cases such as Longcare have increased our awareness of the risks of abuse. Accordingly, we have introduced in the Bill a new criminal offence of ill treatment or neglect, with a maximum sentence of five years. We cannot tolerate abuse of vulnerable people.
I am grateful for the Minister's careful explanation of the Bill. Can he explain the circumstances under which that new offence might kick in, which would not be covered, for example, by the existing law of negligence?
One of the questions that people have asked is: to whom do they go when they are worried about what is happening with a particular person who lacks capacity? We have been keen to ensure that in implementing what I hope will become the Mental Capacity Act, the Public Guardianship Office, social services, carers and parents are clear about the safeguards, the increased criminal offence and the increase from two years to five years. We must ensure that they understand to whom they can report people about whom they have fears, particularly in relation to abuse. The hon. Gentleman will also understand that the independent consultee may play an important role, particularly because people who are not befriended have no one to act on their behalf. If necessary, they can report things about which they are concerned.
I welcome the Bill, which has potential to give people who have great difficulty in making and communicating decisions, such as those with autism, much more control over their lives. My hon. Friend will be aware, however, that there is some disappointment in relation to the lack of an independent advocacy service, particularly for those with the most severe disability. Will he keep an open mind and look again at that aspect? As I said, he will be aware of such concern.
I am grateful to my hon. Friend for her point and for all that she does to campaign in this area. The independent consultee proposal is new, it is supported by money, and we have indicated in the draft code that we are keen to look at ways of extending and framing it. At the same time, she will know that we must strike a balance between existing advocacy services, which independent organisations and charities run in all communities, and parents and carers. Two weeks ago in Brighton, I met some of those who provide that role, and those who lack capacity are keen for them to do so. They ensure that the most vulnerable are provided for, which is why we have introduced the independent consultee. I understand my hon. Friend's concerns and the reasons why people are keen to ensure that vulnerable individuals, with various disabilities, have someone to act on their behalf.
I have said that we are consulting. The hon. Gentleman will have seen the draft code on the framing of the independent consultees. It is not helpful to devise a system that requires statutory advocacy services in cases where, first, we know that the services are independent, secondly, it is right that local social services and primary care trusts make the determinations and, thirdly, people have parents, siblings and carers who already provide such services. However, we shall hold that debate in Committee.
The package has two elements. If a person has no relatives or friends to consult about serious medical treatment decisions or long-term changes of residence, an independent consultee will help to ensure that the decision is genuinely in the person's best interests, and especially that the person's views and wishes are fully considered.
We acknowledge that there may be other circumstances in which it would be helpful to have extra safeguards. We have therefore included a regulation-making power to extend the independent consultee provisions and we hope to consult about and discuss that more fully in the coming weeks.
I want to explain how the Bill sets out what people in a caring role can and cannot do when the person for whom they care lacks the capacity to consent. The principle of best interests is critical to that and I have already had much to say about it. When someone cannot make a decision, the best interests principle requires that any act done or decision made under the Bill must be in that person's best interests. That principle must be at the heart of all decision making. That means not only what the person would have wanted but an objective test, considering all relevant factors. Clause 4 sets out some of them in detail.
Apart from the concerns that my hon. Friends have articulated about euthanasia, I have a specific anxiety that is based on experience in my constituency, which has five large old mental hospitals. They have been run down in the past few years. There have been tensions between the residents' families, who want their relatives to move to a village environment, and the care agencies, which want to push the residents out into much smaller community homes. The families feel that that is the wrong decision for their relatives. Will the Minister reassure me that the provisions that define best interests give a fair balance between the families' views and those of the agencies? My experience shows that the agencies often have the upper hand.
I am grateful for that question and I can give the hon. Gentleman the assurance that he seeks. For the first time, we are providing in statute for a duty to consult, and saying that beliefs and values are relevant to the determination. We are also making it clear that the best interests test is objective. I believe that the hon. Gentleman's constituents will be in a much stronger position once the Bill is enacted than they might have been without it.
Clause 4 sets out some of the relevant factors, including: considering whether the person is likely to regain mental capacity; permitting and encouraging the person to participate; considering the person's wishes, feelings, beliefs and values; and taking account of the views of others who know the person well. Indeed, the last factor reflects the hon. Gentleman's example.
The checklist is not exhaustive but designed to make it clear that decision makers should take everything that is relevant into account. In that way, the person who lacks mental capacity stays at the centre of all decision making. The list also gives people a clear basis for discussion if there is any doubt or dispute.
The Minister knows that the scrutiny Committee recommended that the Bill should pass the Bournewood test. He referred to the people who know the person best. Let us consider the paid carers in the Bournewood case. As the Minister knows, the European Court found in favour of Mr. L last week. In that case, the paid carers knew the person best, but I do not believe that they would be at the top of the list of consultees under the Bill. In the light of last week's judgment, does the measure pass the Bournewood test, or will the Minister amend it?
I am grateful to the hon. Lady, who brings much expertise to these matters. She served on the Joint Committee and has continued to press the Government and others about these important issues. The Bournewood decision is less than a week old. Clearly, it is important. We are considering it and what amendments we may or may not have to make in that regard, but she will know that it pertains to circumstances five or six years ago. It is important that we look at it in the context of matters as they are today. However, I accept her point. We are looking at the matter very carefully.
I apologise for the many interventions, but the Minister will understand that this is a highly charged and emotional issue. The point that my hon. Friend Mrs. Browning made is important. He talks about consultations and taking other views into account, but is not the nub of the matter that the person who is responsible is the person who is placed with the power of attorney? That person will decide what happens. Under the Bill, that could be an appointed deputy, who may have no personal understanding of the individual concerned and thus may not necessarily take advice from others whom they should consult. Is not that the reality? The issue of euthanasia by omission lies at the heart of the Bill. While that provision is there, the attorney, all powerful, makes the final decision. That punches a hole in the Minister's argument.
The right hon. Gentleman has some experience of these matters. He has a hospice in his constituency that many of us in north-east London have campaigned for. No doubt he has received representations in this regard. He will know that the attorney is most often the wife or partner of the person who may have dementia. They will have taken on that role and been with that person for many years. It is important not to conflate the lasting power of attorney under the Bill with the role of a deputy where someone has no one. The court brings in the deputy. Under the Bill, that will be done in the least restrictive manner. It is a de minimis power, subject to court scrutiny, and it can be revoked if there is a challenge or problem. It is important to that bear that in mind.
Clause 5, entitled "Acts in connection with care and treatment", is an important clarification of the law surrounding what someone can do to or for a person lacking mental capacity who is unable to give consent. The current law is based on the poorly understood and obscure "doctrine of necessity". Hon. Members will know of constituents who are worried and uncertain about what they are allowed to do, because they do not understand the law. For example, a nurse may want to restrain someone who is having an epileptic fit. Someone caring for an elderly patient at home may need to help them to use the toilet. Someone whose daughter suffers from bipolar disease may want to go to her house to cook for her and to help her to eat because she is in too much distress.
It is not right that people in such situations should have to rely on what seems to them to be an outdated and obscure legal concept. Clause 5 explains what they can do. It provides that one is protected from liability when the person cannot consent, provided that one takes reasonable steps to establish whether that person lacks mental capacity in relation to the matter in question, that one reasonably believes that the person lacks capacity in relation to the matter, and that what one does is in the person's best interests.
The Bill will introduce a new specialist court. The new court of protection will have the statutory power to make declarations about a person's capacity in relation to a particular matter or matters, and whether any act in relation to that person is lawful.
There are strict criteria and codes concerning medical research, which I hope to discuss. I would not want the hon. Gentleman to conflate that issue with that of acts in connection with care, which is dealt with separately in the Bill.
Supported by a public guardian, the new court of protection will be an important new specialist resource and final arbiter. For instance, it will be able to act in cases where urgent medical treatment is needed, and in serious cases involving ethical dilemmas in untested areas.
It is also important that I talk about how the Bill gives people the opportunity to plan ahead if they wish. Although we do not like to think about it, any one of us could lose our mental capacity through illness or accident; indeed, much recent case law has arisen because of car accidents and other such incidents on the road. Members will already know that they can plan ahead for financial matters by making an enduring power of attorney. We think it right that people should be able to do this, but I do realise that for many years, Members have raised concerns about the potential for financial abuse under the old EPA system. We have addressed these concerns by strengthening the safeguards. Lasting powers of attorney must now be registered before use, so that a person's claim and entitlement to hold an LPA can be checked on a register. Others must be notified when someone applies for an LPA, and given the chance to object. If concerns are raised about a person's use of an LPA, the public guardian can investigate the matter and, if necessary, the powers can be amended or revoked.
I am grateful to the hon. Gentleman for giving way and I have been attending closely to his argument. It struck me that his reply to my hon. Friend Mr. Brady on the issue of whether research could be conducted on a person without that person's consent was, to put it mildly, studiously opaque. Given that it appears from Lord Filkin's reply in a letter to my hon. Friend that there are circumstances in which such research can be carried out when the individual affected lacks capacity to consent or otherwise, will the Minister confirm that no such research can be carried out if the person now lacking capacity to consent previously expressed opposition to the idea, or can he not assure us even on that front?
Of course, if the person concerned made an advance request, we would rightly look to consider that. The hon. Gentleman will know that ethics committees make such determinations every day of the week—I shall deal with research in due course—and that they are central to that discussion. So in that regard, this is nothing new.
Surely the problem with the issue of medical research is that the Bill as drafted allows such research to take place on a patient who does not have mental capacity, even though its being carried out might be of absolutely no benefit to them personally. That raises serious ethical issues that we will have to consider carefully in Committee; otherwise, I fear that the House will go in a very wrong direction.
First, I should point out that this is something that the Joint Committee wanted. The hon. Gentleman is right in part, but the provision is for the benefit of the patient and of those with a similar condition. However, we will have that discussion in due course.
We know that many people would like to have the LPA option for health and welfare decisions, and for the first time the Bill provides such a choice. If they wish, people will be able to appoint a relative or friend whom they trust to take decisions on health and welfare, should they lose mental capacity. No one will be forced to make an LPA—it will be a matter of personal choice—but for some, knowing that someone close to them will be acting for them will be a great comfort.
It is important to stress that attorneys will not be able to act simply in the way that they think the person concerned might have wanted. They, like everyone else, must act in the objective best interests of the person. If they fail to do so, they will be liable for a breach of their duty of care.
May I take the Minister back to his answer to my hon. Friend Mr. Bercow, to make sure that I have understood what is being proposed? The Minister said that, if someone made an advance decision that they did not want to be a subject of research, it would be something that he would "look to consider" in reaching a decision. At the same time, the Bill says, as I understand it, that if someone made an advance decision that they did not wish to be resuscitated, a doctor would have to follow that decision on pain of criminal prosecution. Is that not correct? Is there not an imbalance there?
Someone can make an advance decision concerning research. However, I am coming on to the point that, while it must be right for people to be able to take a decision now about what should happen, what we are doing for the first time is strengthening the powers and laying out the context in which such advance decisions can be made. That has to be a good thing, but let me explain in more detail what that means.
People who have mental capacity have the right to say that they do not want a specific treatment. Some people may choose to plan for a time when they might lose that mental capacity by setting out such refusals in advance. I know that there has been much discussion about that issue, but let me be clear that, under the common law, any one of us could take an advance decision to refuse treatment now. All of us can do that and we believe that it is right to establish a framework and to set out the criteria for people who want to take such a decision.
That is also important because doctors and others who have to deal with such patients must be clear about their status and the safeguards that apply. Medical professionals—nurses and doctors—need to be confident that an advance decision genuinely represents the person's fixed decision. That is an important factor and we have set that out at the heart of the Bill in clause 25. We have made the criteria surrounding advance decisions tighter. Under the Bill, it is tougher for a doctor to argue in law that an advance refusal of treatment is valid and that treatment should therefore be withheld than it is for him to defend a decision to go ahead and treat. If in doubt, there is a clear presumption in favour of the preservation of life. That is the strong implication of clause 26. A suicide note saying "I want to die" would not be a valid advance decision because someone suffering from suicidal despair or depression would not have the required mental capacity.
The Minister is coming on to a key issue on which he may be able to provide further reassurance to the House. It is certainly my understanding from reading the Bill—I would be grateful if the Minister would confirm it—that any expression of an earlier wish when a person has capacity that is either tantamount to a request to commit suicide or falls into the grey area where the person is asking to be assisted into death when that course is unnecessary and contrary to common sense would not be made legitimate by the Bill.
That is absolutely 100 per cent. correct because the person, obviously in distress, would not have capacity. Any doctor or medical professional treating that person would not accept the suicide note or similar expression of the patient's will. The person's wishes would not be deemed valid or applicable in that context.
The Law Society was keen that the Mental Health Bill and the Mental Capacity Bill should, because of the close connections between them, proceed in parallel. Will the Minister make it clear that, although there is a gap between the two Bills, the Mental Health Bill is now before the House in draft form?
Many people, as my hon. Friend will know, have campaigned for this Bill for many years. It deals with a broad group of people—not only those who lack capacity, but their carers and others. The Mental Health Bill will deal with much more specific circumstances to do with mental health. For that reason, it is important for this Bill to make progress and for the Mental Health Bill to receive the required scrutiny. We must ensure that we achieve good legislation in that area as well.
Right hon. and hon. Members will be aware that fears about euthanasia have been raised in relation to this clause and this Bill, but they have nothing to do with euthanasia. The Joint Committee was clear that such fears were misplaced. The Bill in fact clarifies the law, and strengthens the safeguards, but in response to people's concerns we have amended the original Bill to remove all doubt. In particular, we have added clause 58 to say, in so many words, that
"nothing in this Act is to be taken to affect the law relating to murder or manslaughter or . . . assisting suicide".
The Minister mentioned clarification. As I understand it, he has told the House that a patient with mental capacity would be able to refuse to have research carried out on them, but that it is not possible for that person to refuse it for any future point at which they might lose mental capacity. That is what the Minister appeared to tell the House.
I dealt with that point. I made it clear that a person can make an advance decision not to participate in research. That is clear from the Bill and I thought that I had made it clear. Perhaps the hon. Gentleman did not hear me. I hope that these changes will finally lay to rest the fears about euthanasia.
When my hon. Friend the Minister addressed the concerns of Opposition Members, I understood him to say that if a person has an advance directive to the effect that they refuse to become the subject of research should they lose capacity, or that they did not want treatment or to be resuscitated, those directives would be treated in exactly the same way when it came to a decision being made.
I am grateful to my hon. Friend. That is why I laid out the terms under which the advance decision would be considered. It would have to be valid and applicable. There is also a presumption that the doctor has to be satisfied, as stated in clause 26.
The last issue that I wish to discuss is involvement in research. The Joint Committee explicitly recommended that we cover research in the Bill, otherwise people without mental capacity would be denied its benefits and the legal criteria for research would remain unclear. I assure the House that the Bill's provisions are designed to ensure that research does not leave people who lack mental capacity open to exploitation or abuse.
We therefore propose that research should be allowed subject to strict controls. Any research must have the potential to benefit the person without mental capacity, without imposing a disproportionate burden, or must be intended to provide knowledge of the causes of a condition or of the treatment and care of people affected by the same or a similar condition, but with negligible risk or intrusion. In either case, the researcher must consult someone who cares for the participant about his participation in the project.
I am grateful to the Minister for giving way. Let me take him back through that decision. Let us assume that the individual who is incapacitated has no family and has an appointed deputy as their attorney. If that appointed deputy did not express the opinion that such research should not take place, the decision would be left to those who wanted to undertake the research. That is the change in the Bill, because the research would not necessarily have to be to the benefit of the individual concerned. Surely that is the critical issue.
In those circumstances, I doubt that the research ethics committee would let the process take place. I also doubt whether the deputy would not have made a contribution in that regard. Ultimately, what is important is that we have the criteria and that the process is not intrusive. It must be neither intrusive nor overly burdensome and it must go to the research ethics committee, within the existing framework, for final determination. There cannot be more guarantees than that.
That sounds like non-therapeutic intervention and it does not square with another part of the Bill that seems to say specifically that if, for example, there is a road accident or something happens where blood is spilt, and where there is currently no provision for the medical professions to take a blood sample from a person without capacity, it would be illegal to do so under the Bill, whereas the Minister has just said that there are circumstances in terms of research where it would be legal. Could he clarify that specific point relating to non-therapeutic intervention?
I confirm what the hon. Gentleman says; it would be wrong to deny it, but many groups, especially people with learning disabilities, campaigned to have such legislation drafted, specifically because they said they wanted to be involved in benefiting medical advance as regards their illness. Without that provision, we could not make those advances. It was a difficult balance. It is right to include the provision, but we must also have the right safeguards to ensure that the process is not intrusive or burdensome and that people are consulted, or if they cannot be consulted, that there is someone who can be. That will obviously involve the research ethics committee, and the court of protection might also have a view if there was a particular dispute or problem.
I am very grateful to the Minister; he has taken a large number of interventions.
Is it not the case, and one of the nub issues with which the House may have to grapple, that the philosophical principle underlying the way in which the Government have framed the research clause introduces the clear possibility—to be sanctioned by the House—that, in the public interest, research could be carried out on a person who does not have capacity to consent, but that there would be safeguards to ensure that it is not overly intrusive? That, as the Minister may agree, is a very difficult ethical issue and there is no point in trying to duck it. The House will have to grapple with that issue as the Bill goes through.
I am grateful to the hon. Gentleman for the way in which he puts the argument. I am not trying to duck the issue. I said that we had included safeguards and that is the difference. I acknowledged the comments made by Mr. Key about non-therapeutic care, but it is important to emphasise the point made to the Joint Committee: people, especially those with learning disabilities, said that they wanted to be part of the process. Indeed, in a sense, it is appropriate that we are having this discussion on the day of Christopher Reeve's death. He was a huge campaigner on such issues. People like him say that they want to be involved in research governing their condition and in improving life for others.
The research provisions, like the rest of the Bill, aim to help us learn from the experiences of people who lack mental capacity, so that we can better empower, protect and support them. This is a Bill with potential to benefit all of us, whether as people planning for our future, caring for someone else, or acting in a professional capacity. It is an ethical, empowering Bill, which deserves the full support of the House. I ask that it be read a Second time.
I am grateful to the Minister for his attempts over an extended period to explain the legislation. If he came to the House with the assumption that he would have an easy ride, he will now have been disabused of it. Legislation should be our core business in the House—a somewhat old-fashioned view, but one that I strongly hold—and every so often an issue arises, such as this Bill, that is relatively uncontroversial in party political terms but significantly or massively controversial in its implications, and which greatly and genuinely exercises a number of interest groups. It is perhaps unsurprising and even fitting that that should be so when the Bill deals with the loss of the essential capacity of human beings to act as autonomous moral agents—souls, if the Minister prefers, and I think that he and I would both be happy with that phraseology. Indeed, in certain cases the Bill can at least affect materially their life and well-being. Equally, the Bill deals with the necessity for another person to stand in and act for the person when that capacity is lost. There are moral challenges and hazards in that role, too.
I should like to emphasise at the outset the scale of the problem. The minimalist definition of capacity by function involves determining whether it is possible for the person in question to take a decision for himself, even if other actions are not open to him, rather than sweeping them all up and saying, "He can't manage, you know." Even on that reductionist view of capacity, there will be between 1 million and 2 million people in this country at any time to whom the Bill may apply directly. The number of decisions involving their daily care—let alone, of course, the material decisions that exercise so many people—is almost infinite. The growth in the number of the extremely elderly—those over 85—is likely over time to increase the figures, particularly in connection with dementia, while at the beginning of life the improved survival chances for babies lead, sadly, to a steady though not dramatic expansion in the number of people with learning difficulties, and in turn, those people are living to adulthood and maturity. Of course, I welcome those opportunities; they are a challenge, not a threat.
The House would do well to recognise the complexities of the situation, including, as well as the two life conditions that I have already mentioned—learning disability and dementia—permanent or temporary mental incapacity following trauma or as a result of long-lasting or intermittent mental illness. Of course, the emphasis of the functional definition adopted in the Bill is that capacity may be retained for some everyday matters, while it may not run to major decisions, for example, on the disposal of assets, or an individual's future residence or care conditions. Many of the conditions that I have described can co-exist. It is possible simultaneously to have learning disabilities and mental illness—although, of course, they should not be confused in any way—so an even larger number of people, other than the person involved, are swept into the issue as carers or health or social care professionals, as well as those required to administer a person's affairs in the business sense.
Perhaps I can give the Government a pointer by saying that, on reflection, I have decided that it is probably better to have—for example, in the provisions for lasting power of attorney—the opportunity to consider holistically the financial affairs of the person, together with their care, because it may be necessary for court decisions to be split, or even for those functions to be split among the individuals who are appointed for that purpose, either by the person before they lose capacity or by the court. We should at least consider that as a whole, rather than separately.
In view of the complexity of the situation that I have described, it is hardly surprising that the process that has culminated in this Second Reading began some 15 years ago—even the Minister will recall that there was a Conservative Government at that time—with the referral of the issue to the Law Commission in 1989 by the then Lord Chancellor, Lord Mackay of Clashfern. After six years, the Law Commission reported back, the Government consulted and published a White Paper, and then a subsequent White Paper, and there was a draft Bill, which was much assisted and expertly commented on by a Joint Committee. That led to many valuable amendments, including a name change—names matter, and to refer to capacity rather than incapacity, emphasising the positive, is a good signal. It also led to an up-front statement of principles—we may tinker with them in Committee, but at least they are along the right lines—and to clause 58, a declaratory clause, about which we have already heard a great deal, in relation to murder, manslaughter, euthanasia and assisted suicide.
My hon. Friend will be aware that some of us, while accepting that there are many good things in the Bill and good principles behind it, are genuinely worried that, despite all the assurances that have been given, it could be a significant step on the road to legalising euthanasia, which would be wholly unacceptable to the House. I had hoped to be reassured by the Minister, but candidly, I was not. While he is on clause 58, will my hon. Friend refer in particular to the issue of the classification of food and fluids as medical treatment that could be withdrawn, because that goes to the heart of the worries that many of us have?
I shall certainly deal with that matter in a very few moments, as it is of great concern to many people, not only on our Benches but throughout the House.
My party will be on a free vote tonight, which I feel is entirely appropriate for an issue of conscience that affects so many people who have written to us or expressed their views in other ways. My personal sympathies are to a great extent with the Minister. He has experienced that before on previous legislation, and may not welcome it. My sympathies are towards getting on with legislation. As my hon. Friend just said, there are many good things in the Bill, and I am well aware that it is supported by the Making Decisions Alliance, which runs to almost 40 charities expert in the field that have to wrestle day to day with the practical problems. Like the Minister, I have no difficulty with the alliance, and indeed I appeared on one of its platforms at my own party conference, but I do not feel that the concerns that have been expressed to us—not exclusively about euthanasia—can be brushed aside, because they will require really adequate and searching explanations from Ministers, which, with respect, I do not believe we have had today.
We are unlikely to achieve that aim in a Committee stage programmed to finish before the end of this month, but I am given to understand, in the rather numinous way in which such matters emerge, that there may be the possibility of some modification of that programme. I say to the Minister, in all good conscience, that it will be much easier if we feel that we have had a good chance to go through all this. In that, I speak not only as a Front-Bench spokesman but on behalf of my Back-Bench colleagues and others throughout the House.
These things cannot be brushed under the carpet. We have had 15 years to get this right, and I think that the Minister will have understood from our proceedings so far today that many people here, without a party political handle on it, do not feel that we have yet done so. If we can have at least 15 sittings—I pick the number only by analogy with the number of years—to have a good go at this and get it right, we may all feel far more satisfied about it.
We will be looking for not only words, but visible action, to beef up the safeguards that are built into the Bill. From my lay perspective, I shall table many amendments to probe the issues, and I have no doubt that other amendments will emerge shortly, as they should. Ministers have a duty to the House to tackle such issues in good faith—they have sometimes not done so, but we should not go into that because our discussion is not partisan—and until they are shown to be able to do that, I can best describe my attitude as one of constructive scepticism. I hope that the word "scepticism" will resonate in one or two places.
In a sense, there is a fall-back position of using an objective test of best interest if a matter reaches litigation, but many people may filter it through their actions before that stage is reached, which is among the genuine concerns that must be explored.
My hon. Friend will recall that when I asked the Minister about that principle, he said that the standards would be such that all sorts of people—relatives and the rest—would be consulted about such things as their values. Does my hon. Friend agree that that, by any standard, is a subjective test of what is best for the patient, rather than an objective one?
It is right that if one person consults someone else, two views will be expressed, and the inference is that one view may prevail. The worries that are being expressed address the fact that that view might be more detached from the reality of the person's interests. Such matters could ultimately be brokered through the court of protection, which will try to take an objective view, but the difficulty for the House is that that process must first be reached. Lives could be lost in extreme circumstances and interests could be prejudiced while the matter is resolved.
Given that the best interest of an incapacitated person is the overarching principle of the Bill, and that those who determine the best interests of such people merely have to take into consideration those people's wishes, beliefs and values, surely the Bill is inconsistent with the best interests of incapacitated people. Should not the previously expressed views of incapacitated people be paramount in decisions taken in their best interests?
I understand what my hon. Friend is driving at. We would all want that to happen whenever possible, although there might be extreme cases in which it could not. Perhaps I can resile from that point and tell the Minister that he will have to explain carefully in Committee how people's previously expressed views, which may or may not be consistent with their actual best interests at the time, will be handled.
It is important that I make it clear that my personal position remains one of constructive scepticism. I shall listen to the debate and the further exchanges that take place and I may well withhold my support from the Government tonight pending assurances being given in Committee. [Hon. Members: "Hear, hear."] I did not say that to get a cheer, but because we are considering serious issues. We must construct the right framework so that the Minister can do the right thing, if I may put it helpfully.
The Minister will hardly be surprised if I say that hon. Members on both sides of the House are exercised about right-to-life issues relating to euthanasia and research.
Given the right hon. Gentleman's shared interest with me in disability issues, I shall give way.
Until the hon. Gentleman made his last point, I thought that he was making an especially measured speech, but if he is to probe in the way in which he rightly said that he would, if he is to ask questions in the way in which he is entitled, and if he is to put forward the views of his constituents, as one would expect, how can he do so if the Bill is denied its Second Reading?
I do not believe that one should overplay one's hand, but with respect I have a feeling—I may be entirely wrong—that if I were not to join the right hon. Gentleman in the Lobby tonight in support of the Bill, it might well receive a Second Reading anyway. If it does not, we will be sending a powerful message to the Government to think again, which might be beneficial in itself. A carry-over motion is already on the Order Paper. We need to sit down together, in a common endeavour—in an effort to be more consensual, I agree with him on that—to get it right.
I share the Minister's view that the Bill does not permit euthanasia. If it did, I would oppose it, as would the Conservative party and, I am sure, the overwhelming majority of individual Conservatives. The Conservative party opposes euthanasia and so, incidentally—at least according to the view of Lord Goff in relation to the Bland case—does the common law. It is not on the map and it should not be on the map.
My hon. Friend mentions the Conservative party and speaks from the Front Bench. He also said that he does not think that there is euthanasia by omission. I have been in the House slightly longer than he has—although I have not served with such distinction, I hasten to add—and in all those years, both in government and in opposition, the Conservative party has had a policy that is opposed to euthanasia by commission or omission. That is also the view of the current leader of our party, who supported my private Member's Bill. There seems to be some confusion.
I think that there is no confusion. The Conservative party is not in favour of euthanasia. As far as I know, no other responsible party in this place is in favour of euthanasia. The issue is, inevitably, the definition of the particular acts and the nature of the circumstances that precede them. The Joint Committee clearly supports the Minister's view, and that is a cogent consideration. As a result of its specific request, we have a declaratory clause—clause 58—which is important.
However, I can hardly fail to be aware of the strength of deep and sincere feeling on the issue. My hon. Friend Mr. Green identified that when he expressed his concerns about the Bland judgment in respect of artificial nutrition and hydration, which are intrusive procedures and treatments. There must be a debate in Committee on whether that is the right state of the law, but it is undoubtedly the current state of the law, and I am not disposed to follow others in changing it.
Other issues raise legitimate concerns about the interaction with decisions made in advance—the so-called living wills—and the ability of a medical practitioner, acting independently, to take life and death decisions without reference to the court or members of the person's family. Those issues must be aired and must not be brushed aside by Ministers.
Is my hon. Friend aware that at a meeting in the House of Lords on
It is difficult for any third party to order a doctor to take a particular course of action. My interpretation does not precisely coincide with my hon. Friend's, but there is a serious issue, which needs to be got right.
Frankly, I am more intensely in sympathy with the shorthand of the pro-life representations about the clause introduced to deal with research. It is one thing for a person with capacity to agree to be a guinea pig—to submit themselves to research—or even by advance decision taken with capacity to indicate one's readiness to be so, either after mental capacity is lost or after death by organ donation, but once capacity is lost and it falls to another person to decide, the principle of best interest cuts in and supervenes. I am worried that, however convenient it may be in relation to CJD, for example, or other terminal illnesses, to offer up a person without capacity for research, it cannot, as parts of clause 31 imply, be allowable to override the principle of best interest of the person involved and no one else.
If I may say so, that is precisely the point that concerns us.
I wonder whether the hon. Lady will forgive me and allow me to make a little progress. I am conscious of the time, and many Members want to speak.
In considering the Bill as a whole, I want to enter an important caveat for those seeking to oppose it root and branch. Some people have written to us in those terms and expressed themselves strongly, partly on euthanasia and also on the issue of representation. The Bill codifies practice that has arisen out of common law. I am genuinely grateful for the fact that, to complement my interests in this area, I shall have the assistance of the shadow Attorney-General, my hon. Friend Member for Beaconsfield (Mr. Grieve), in considering the Bill. It is from common law that we have the definition of best interest and also the occasionally contrary acceptance of advance decisions as overriding best interest.
It is also arguable—indeed, it is incontestably true—that things do go wrong under the present common law regime. To take a simple case, I think of the number of fraudulent cases of use or abuse of enduring powers of attorney, which is striking and alarming. It would be a brave Minister who argued that even when the law is codified, as the Bill provides, and with the best safeguards Parliament can find, nothing would ever go wrong again. Indeed, there is a genuine risk—we must watch this—that in seeking ever to tie things down more tightly for all the right motives, we might create instead of the flexibility characterised under common law a culture in which every move is litigated on, where it is impossible for anyone to do anything without going to the court of protection. That would be unhelpful for all concerned, both in human terms and in terms of the resources involved.
At this point I should expose more clearly what I feel is the inherent and unspoken tension in the Bill. There are, on the one hand, the interests of the person without capacity, and on the other, the interests of those looking after him or her. Before that is misconstrued, I say immediately that the whole House will want to recognise and celebrate the contribution of some 7 million carers towards those and similar problems. I mention in the same breath the work of doctors, nurses, social workers and other professionals who shoulder the burden of decision making in such cases. For the first time—this is one of the Bill's strengths—the Bill provides a comprehensive hierarchy and framework for their participation. There are real benefits in the clarification of that, such as for parents of an adult son with a learning disability who may for the first time have a formal locus in decisions taken about his care.
It is absolutely no disrespect to the Making Decisions Alliance, the Royal College of Psychiatrists and many others who have played such a part in bringing the Bill to its current state of readiness to recognise that their interests may not be identical to those of the person lacking capacity. Even if those bodies are acting by their own best lights, as I hope they are, their interests are still different. Indeed, they may conflict with one another—for example, when family members genuinely, and not necessarily for malicious or personal reasons, disagree about the regime or type of care, let alone about the disposition of family property. There may be differences between families and professionals, who have resources and budgets to consider. There may also be differences between professionals themselves. There is a systemic problem in that Ministers have confused the second opinion given by a professional about somebody with, for example, a psychiatric complaint with the work of an independent consultee, who may be a layperson, whose job is to represent that person's interests and who is not approaching the situation as a professional or someone with any axe to grind.
The Minister—understandably, given the pressure that he was under—was somewhat sketchy about the machinery in the Bill for resolving such issues. That machinery, most notably the relationship between the Official Solicitor, representing individuals, the public guardian and the court of protection, will require careful scrutiny. It is also clear that many interested parties are concerned about the rudimentary state of provision for truly independent advice given by someone with no axe to grind in the interests of the person without capacity. The issue of who will stand up and act only for the person in question, without any interest of their own, reads across into many of the most difficult issues in the Bill; for example, the concerns about euthanasia and research and those about the Bournewood gap.
The Bill does not take over those conflicts, but it needs to provide for them to be recognised and reasonably resolved. Above all, as I think the Minister will agree, those conflicts have ultimately to be resolved in the interests of the person without capacity. We do not see this as a Bill to whitewash the actions of carers or to protect them from the attention of the law, and I do not wish to caricature it as such. Most carers will not need that protection because they are acting in good faith and in the best interests of the person involved. We have to remember, however, that when push comes to shove it is the individual who is at the centre.
Although the Bill has already been 15 years in gestation, it is essential that it is scrutinised in detail and, put simply, got as right as human wisdom can make it in an imperfect and challenging world. That world is changing, too, so we have to achieve the right mix of safeguard and flexibility. If Ministers are disposed, and I think that this Minister will be, to approach this task in the right spirit, and not to cut corners or to rush, the scepticism that I have expressed today, which has been well represented and, indeed, enhanced by my colleagues, may in due course be converted into support. However, this is a case in which support is not something that Ministers can claim; it is something that they have to earn.
I close on a more personal note. The House would do well to remember that even though these are issues of law and we need to get them right—that is what Committee stage is for—there are real people out there, and even if they now lack mental capacity in the strict sense, they may not lack feelings and they are entitled to our respect. It is for everyone, their granny, their partner or their child. We should recognise too that for all our own confidence and self-assurance now, we may well go down the same road ourselves in the future.
In considering the Bill, with all the concerns that have been expressed, we should as a House collectively resolve to follow the good principles established in clause 1 and to add to them our deepest respect for those who may now lack capacity but were once autonomous human beings as we are, and with whom we, as individual moral agents, share the mystery of a common humanity. We owe them no less than that.
I declare an interest in that I am a lay member of the General Medical Council, the regulatory body that polices doctors within the UK, advises them on how they should conduct their work, and gives advice on the education and training of doctors.
I support the Bill's aims of empowering adults with impaired mental capacity to make as many of their own decisions as possible and, where that is not possible, of ensuring that there are safeguards in place to protect adults when decisions are made on their behalf. The Bill is designed to cover all areas of decision making. Many organisations have waited a long time for it, and I am pleased that it is as comprehensive as it can be at this stage of the process.
In health-care terms, the Bill sets out how treatment decisions should be approached and, if necessary, taken on behalf of those who lack the capacity to take the decision themselves. Some people believe—wrongly, in my view—that the Bill is about euthanasia. A constituent, Mr. Michael Hill, has lobbied me on numerous occasions about the subject, but I do not accept his argument that the Bill introduces euthanasia and that I should vote against it. I shall be in the Lobby with the Government later this evening.
The Making Decisions Alliance, which comprises more than 30 charities that work daily with people with differing levels of incapacity, also disagrees with the view that the Bill is about euthanasia.
The right hon. Gentleman is correct, but it is worth noting for the record that the I Decide coalition, another group representing disabled people, is opposed to the Bill.
I do not doubt that many people oppose the Bill for various reasons. I intend to quote what some groups have told Members of Parliament. I hope that, if the hon. Gentleman wishes to put another case, he will have time to do so.
The Making Decisions Alliance wrote to MPs stating that it does not believe that euthanasia is
"either the intention or a consequence of the proposed legislation. The Government has made clear that euthanasia and physician assisted suicide are both illegal in the UK and will remain so."
I am satisfied with that. The alliance continues:
"This was confirmed by the Joint Parliamentary Committee which examined the Bill".
No doubt, hon. Members on both sides of the House who were members of that Committee will speak in the debate. I wish that I had been able to hear their speeches before making my own, although it is nice to get a speech out of the way early. The alliance says that that view was also
"confirmed . . . by Lord Filkin, the Minister responsible for the Bill. The Government has also introduced a clause in the Bill that states 'nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of section 2 of the Suicide Act 1961 (which prohibits assisting suicide).'"
May I put to the right hon. Gentleman a very simple case? If food is refused to a person, that person starves; if fluid is refused, that person dies of thirst; but if treatment is refused, that person may or may not die. If the Bill permits under the term "treatment" the withdrawal of food and fluid, death will result. That is why some of us claim that a consequence of the Bill, intended or not, is the introduction of euthanasia.
"In some rare cancers, nutrition and hydration speed up the patient's metabolism, hastening death and increasing suffering. It is best that clinicians make the decision in those cases, not us sitting here"—[Hansard, Westminster Hall, 22 May 2002; Vol. 386, c. 81WH.]
in Parliament. I still believe that firmly. It is important to talk to clinicians who work in this area. There are occasions when doing what has been suggested is not in the patient's interest and there are other occasions when it is very much in the patient's interest. It is not a decision that I should take, and I do not think that Parliament can do so. We should recognise that.
Does my right hon. Friend agree with the Joint Committee's report, which differentiated carefully and explicitly between food and drink as part of basic care, to which every patient has an entitlement when in hospital? Artificial nutrition and hydration, through case law, has been determined as being treatment. We must be extremely careful not to confuse the two.
My hon. Friend is right. I read the Joint Committee's report quite a few months ago. The distinction must be made. Perhaps the Chamber is not the best place in which to draw the distinction.
As I have said, I am a member of the General Medical Council. It welcomes the Bill. It believes that it can enhance the right of patients who lack the capacity to decide issues for themselves. It believes also that it will clarify the role and responsibility of doctors and others who care for those people. Of course, the council recognises that this is a complex and sensitive area that overlaps with other legislation and common law. Further issues are being raised by the judgment concerning the GMC's guidance called "Withholding and Withdrawing Life-Prolonging Treatments: Good Practice in Decision-Making" as a result of the case that was brought against it by the state on the application of Oliver Leslie Burke versus the GMC. I shall speak about that judicial review and the potential implications that it may have for this legislation.
We should examine how the Bill will interface with other pieces of legislation. The GMC has some questions, as will hon. Members, about some of the issues that will arise. There is a need to clarify the protection for patients who lack capacity and are compliant with the treatment that is offered. The draft Mental Health Bill provides for formal reviews and inspection of services that are provided without consent. There is no parallel in the Bill that is before us. There is a concern that patients who are treated under the Bill will have fewer safeguards and protections. We must ensure that proper mechanisms are in place for taking and reviewing decisions and auditing services, which have been highlighted in the ruling of the European Court of Human Rights involving the patient detained by the Bournemouth community and mental health NHS trust. I know that the Minister said in an intervention that that took place last week. I have not seen a report of the full judgment but that is an issue that will have to be addressed by the Government while the Bill is considered in Committee.
There needs to be clearer provision for people aged 16 and under 18 years of age. Those in that group will have rights under the Bill, which I hope will be enacted, and under the Children Act 1989. There needs to be greater clarity when it comes to which legislative framework will take precedence in a certain range of circumstances. Clarity is also needed in relation to some powers and rights—for example, the power to appoint a person with lasting power of attorney, or to make an advance decision statement, being accorded only to people aged 18. There are issues involving interaction with other legislation and they will have to be clarified.
I move on to the impact of the judicial review in terms of the legislation that was brought forward in 2000, or the potential impact of the judicial review on the GMC guidance, to which I have referred. The GMC has welcomed much of Justice Munby's judgment, but has decided to appeal as it is concerned that certain key issues remain unclear. It has a duty to provide doctors with clear guidance to assist them in their decision making, but with the outcome of the judicial review uncertain, it is particularly difficult to judge the effect of the case on the Bill. However, the following matters raised in the judgment are also covered in the Bill. The first is the issue of best interest, which has been raised on numerous occasions, and the second is that of intolerability.
Mr. Justice Munby states that intolerability should be the touchstone for best interests, in deciding whether to provide an incapacitated patient with life-prolonging treatment. One of the principles on which the Bill is based is that decisions should be taken in the best interests of the incapacitated person, as set out in clause 1(5):
"An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests."
The Bill also defines the issue that is to be considered and the people who must be consulted in determining what would be in that person's best interests. These are set out in clause 4(5) and—importantly, in the context of medical decisions—they include:
"the person's past and present wishes and feelings, the beliefs and values that would be likely to influence his decision if he had capacity, and the other factors that he would be likely to consider if he were able to do so."
These provisions do not include the test of whether an option would be intolerable. I assume that the Bill would need to be amended to accommodate a test of intolerability as a measure of best interest in the context of life-prolonging treatment. This issue is quite fresh; the judicial review was granted only a few months ago, and it will now be appealed in the courts. This will have an impact on the interpretation of best interests in this particular case.
Will the right hon. Gentleman explain his understanding of what the Minister said earlier in relation to decisions expressed by an individual lacking capacity before the event? In response to an intervention about suicidal intent, I think that the Minister said that it was inconceivable that an intent expressed earlier would be binding on a clinician in such circumstances. Is it the right hon. Gentleman's understanding that the Bill proposes that, in every case following a suicide attempt, any earlier decision that purported to refuse treatment would automatically be invalid as a result of that suicide attempt?
The hon. Gentleman asks me a specific question, and the simple answer is that I do not know. Perhaps the Minister will be able to clarify the matter, or perhaps the Standing Committee might be a better place in which to explore it. I am more concerned about the guidelines for clinicians operating out in the field. As I understand it, the situation that the hon. Gentleman has described would be a matter for them.
I should like to clarify this point for my right hon. Friend. The advance decision in such a case would have to be specific and clear to make it valid and applicable. The effect of clause 26 would be that the doctor concerned would have to be satisfied in that regard, and this highly subjective test would mean that there would be a presumption of the preservation of life. On that basis, a suicide note could simply not be valid or applicable.
We seem to be having this debate by proxy, but as we are into it, perhaps I can use the right hon. Gentleman's time. Other issues are not answered in the Bill. In particular, the doctor concerned will have to make such a decision in a very compressed time scale. If there is a doubt, do we honestly think that the doctor will have time to consider the document, to consider the person who has power of attorney, and to have discussions and consultations? Of course he will not. He will be worried about acting and getting it wrong: about what will happen if he resuscitates and is promptly proceeded against in a court of law. Some serious issues are not answered at all in the Bill.
It may be that the progress of the Bill will decide that. The right hon. Gentleman should know better than most in the Chamber that we are here to pass laws, and that the laws we pass are not always accepted out there. Any legislation that we pass will be tested at some stage, and in such areas, it is more likely to be tested than not. Most people would accept that. When we consider the amount of time spent on examining such areas, and on bringing forward the General Medical Council's guidance in 2002, it was inevitable that it would be challenged. It has been challenged, and it is now up for appeal. The General Medical Council is appealing against the Munby judgment, including the view that best interests should be determined on wider grounds than intolerability. It believes that that is quite narrow. I have not consulted the Oxford dictionary for its definition of intolerability, to see how wide it goes, but the GMC believes that it is narrow. Wider issues will come into play.
The judicial review judgment indicates that, within certain constraints, patients have a right to require treatment to be provided for them, either at the time that the treatment is needed or wanted, or in an advance directive. Clearly, that will have a wide impact on the provision of care, including for patients whose capacity fluctuates or who need help to make decisions. Its chief impact on the Bill relates to the use of advance statements. The Bill envisages only circumstances in which a person may make advance refusals of treatment, although a statement of their preferences would be used in determining their best interests. The right to require treatment goes further than that, and the result has been challenged in appeal. The GMC's view is that a judgment as to what medical treatments are appropriate to offer is for a doctor to make. That must take into account not only what the doctor considers clinically to be in the best interests of the patient, which will of course involve taking into account the patient's concerns, values and preferences, but, inter alia, the over-arching duty of care to offer only treatments which are Bolam-compliant, and most importantly, the patient's assessment of his or her own best interests.
The right hon. Gentleman said that a doctor would be required to consider what was in the patient's best clinical interests. My understanding of one of the objections to the Bill is that it is not narrowly defined in relation to what is in the patient's clinical best interests, and that it asks doctors to make a much wider judgment about what is in the patient's general best interests.
The hon. Gentleman has latched on to two words from a sentence. Given that we have no time constraints this afternoon, let me repeat what I said: the judgment must take into account not only what the doctor considers clinically to be in the best interests of the patient, but the patient's concerns, values and preferences. That is a lot wider than clinical interests. Perhaps he should listen a little.
Another part of the appeal will be the issue of seeking decisions from the courts. The implications of Mr. Justice Munby's judgment are not wholly clear. It is probable that, as the judgment stands, all decisions to withdraw life-prolonging treatment would be referred to court, unless the decision was taken in accordance with a patient's valid advance directive about the circumstances in which they would refuse treatment. That would be the case at least until the uncertainties about court referral were clarified in the case law. That matter is also included in the GMC's grounds of appeal. It is relevant to the Bill and the code of practice, which suggest that the Court of Protection would provide
"a judicial forum of last resort to deal with particularly complex decisions or difficult disputes which cannot be resolved in any other way."
Decisions to withdraw treatment are always of the utmost gravity but not always complex or difficult.
I hope that the Bill will be passed, and stress that nobody can legislate to cover every eventuality in the circumstances that we are considering and in future months and years. People who need the Bill, and to have their capacity judged as best as it can be in all circumstances, whose voices have not been heard not only for decades but for centuries, who were once locked away and felt that they had little or nothing to give society, need as much support as the House can give them today.
We should support the measure, with all the question marks. I do not believe that it represents euthanasia by stealth. The organisations in the Making Decisions Alliance would not support such a Bill for one minute. Given that we have waited 15 years and that the Joint Committee has scrutinised the measure, it is time to get on with giving it a Second Reading, considering it further in Committee, sending it out there and leaving it to others. I have no doubt that lawyers will queue up to examine it in future, but we have travelled a long road to get such a measure, which empowers people who have little or no power in our society. Although we may not believe that it is perfect in every way, we have a duty to pass the Bill.
I speak in favour of Second Reading and I want to give some of the reasons for that. Although there are undoubtedly legitimate and honourable concerns, which have been expressed in interventions, many should properly be explored and tackled in Standing Committee and later on Report.
If I were to base my contribution on my mailbag or my e-mails in the past month, my speech would be about euthanasia and the right to life. I do not take those issues lightly; they are crucial moral questions, which undoubtedly and rightly stir strong emotions and feelings in the House and among our constituents. However, like Mr. Boswell, I do not believe that the Bill promotes euthanasia. I would not support it if it did. I also agree with him that it is legitimate and right for this place to debate the common law position that was reached in respect of the Bland judgment. We should explore it, its meaning and whether it is the right position for the law to reach. However, I do not believe that that is a ground for rejecting the Bill out of hand today.
It would be a grave mistake to view the Bill as being about only end-of-life decisions. It is about much more: the quality of a person's whole life. Medical advances may add years to life but only when we put the individual's needs and wishes at the heart of decision making can we be sure that we add life to those extra years.
To view the Bill as dealing with only the end of life would also do a grave disservice to the millions of people in this country who, from birth, after an accident or through an illness, find their capacity to make or communicate decisions impaired, fluctuating or lost.
It would be a grave injustice to those people if the Bill were lost and the inadequate status quo retained. Why do I say that? Earlier, the Minister paraphrased the 1995 Law Commission report, which concluded:
"The law as it now stands is unsystematic and full of glaring gaps. It does not rest on clear or modern foundations of principle. It has failed to keep up with social and demographic changes. It has also failed to keep up with developments in our understanding of rights and needs of those with mental disability."
As matters stand, the people whom we are considering do not count even as second-class citizens. People who lack capacity are deemed by others to have no legal rights. They become non-people. That leaves the most vulnerable, often elderly people, open to abuse.
The need for reform of the system of proxy decision making for people who lack capacity has been well argued and, as we have heard, explored in detail over the past 15 years. It is one of the most sensitive and contentious areas of social policy, involving fundamental personal rights, issues of personal welfare and life or death decisions. It concerns what many regard as the first duty of any Government—to protect and to enshrine in law the rights of the most vulnerable in our society.
At present, the law is clear about the rights and protections afforded to a person who has the capacity to make decisions for themselves. However, the law is far less clear about the status and rights of people who lack capacity to make decisions for themselves. The Bill would give all those who lack capacity new rights to maximise their preferences on how to lead their day-to-day lives. It has the potential to redefine radically the way in which incapacity is treated in law and in wider society. When the Bill goes into Committee, and I hope that it does, I hope that we will explore how it may be further improved to reinforce the paramount importance of placing the individual at the heart of decision making.
Until now, there has been no legal framework for the type of sensitive advocacy necessary to ensure the delicate balance between individual autonomy and protecting vulnerable adults. While the Bill represents a significant improvement on the present position, it still falls well short when it comes to rights of advocacy support. Instead, it offers a new role—the independent consultee—which at best is a halfway measure. It is not adequate and we could not support it as it stands. I hope that the Minister's willingness to continue consulting and listening will produce changes to the Bill that will extend a right of advocacy to those who are protected by the Bill.
Because of the scope for misunderstanding within this area of public policy and the opportunities that can therefore arise to misrepresent the purpose behind such legislation, the Government were right to publish a draft Bill, which was scrutinised by a Committee of peers and MPs last year. I had the privilege of serving on that Joint Committee with a number of hon. Members who are in the Chamber for the debate and I look forward to serving on the Standing Committee that will examine the Bill.
The Joint Committee expressed strong support for the legislation in its report that was published last November but it made a number of important recommendations to strengthen the safeguards in the Bill. Some of those recommendations have been accepted and I hope that, as the Bill progresses through the House, yet more of the Committee's ideas and recommendations will be accepted.
Some have written to me to urge that I vote against the Bill on the ground that it promotes euthanasia. That is a travesty of the truth. The Bill is not without its flaws but it can and should be improved, not rejected out of hand. I do not believe that organisations such as Age Concern, the Alzheimer's Society, the Down's Syndrome Association, Headway, Help the Aged, Mencap, Mind, the National Autistic Society, Rethink and the many others that support the Making Decisions Alliance would support the Bill unless they saw it as a means of extending the rights and protections of vulnerable people.
There are legitimate concerns—we have heard them already—about the precise effect of the clauses on the powers of deputies and appointees and on advance decisions to refuse treatment. The courts have already recognised a person's right to specify in advance both what treatments they would want and those that they would not want. As we have heard, the recent decision by Mr. Justice Munby in the case of Mr. Oliver Burke has emphasised the importance of doctors following the individual's known wishes. Paragraph 77 of the explanatory notes to the Bill states:
"Many general forms of advance statement or 'living will' will be important and relevant as 'past wishes' of the person for the purposes of the best interests checklist in clause 4."
Given that the explanatory notes say that such general, non-binding statements should be taken into account, why is it not possible for the Government to accept amendments to the Bill that would give express recognition of such statements? They would be an important further safeguard and reinforce the well established legal right of the individual to give and to withhold their consent to treatment.
Does the hon. Gentleman accept that one of the problems that people have with the Bill is the interplay between an individual and someone who has power of attorney on their behalf and who interprets what are considered to be a person's wishes prior to their present condition? That exposes a problem at the heart of the Bill. Legally it is possible that someone may say that they wish not to have treatment, but it has never been possible legally for them to prescribe treatment for themselves. That is the issue. It is the withdrawal of treatment, as decided by the attorney, that causes the problem.
That is undoubtedly an issue that we need to give careful attention to, and to explore in some detail in Committee. Indeed, I was very struck by an earlier intervention by the right hon. Gentleman concerning the courts' role in appointing someone to act in that regard. We must consider carefully whether courts should be able to nominate someone to make such decisions away from the courts. So he has made some important points that need to be considered in Committee, and which should lead to further amendments to the Bill.
On advance refusals and advance directions concerning the form of treatment that a person would like to receive, the Disability Rights Commission points out in its briefing to Members that there is a challenge in providing individuals with impartial advice when making decisions about conditions of which they have no experience when they choose to refuse treatment, or, indeed, when they decide what sort of treatment they might want. Advocacy to explain the reality of living with impairments and health conditions, and of life opportunities, is essential. There is substantial evidence showing that medical professionals are not best placed to provide this advice, due to biased assumptions and discriminatory attitudes towards disabled people and their quality of life, expectancies and chances. I share the DRC's concern, and it is important that we ensure that the Bill addresses the question of sensitive advocacy, independent of those who are closely involved in the decision-making process, not least the commission.
It is said by some who have contacted me that the Bill fails to provide an adequate definition of "best interest" and that it is too vague, particularly in respect of end-of-life decisions. There is of course the perfectly honourable view that there are no circumstances in which death can be in a person's best interest; however, translating that view into practical legislation is another matter. For example, how would such a view affect the delivery of palliative care? When is the line crossed between relieving pain and shortening a person's life? I do not believe it possible or desirable to set such matters out in statute—to second-guess every possible scenario that should be considered when determining what is in a person's best interest. Ultimately, that is a role for the courts in looking at the individual's circumstances at the time and their wishes, feelings and preferences.
The Bill does offer the courts and others important signposts in the statement of principles in clause 1, and in the checklist in clause 4. It is simply not true to say that it does not advance and clarify the nature of best interest; in fact, it provides a framework that hitherto existed only in piecemeal common law. The principles promote a real shift in the attitude toward empowering vulnerable people to make as many of their own decisions as possible. They make explicit the legal presumption of capacity and the need to take all practical steps to support a person in making a decision. They also make it explicit that the decisions taken must be the least restrictive of basic rights and freedoms.
However, there is one further principle that would guard against others making assumptions about the quality of life of a person who lacks capacity. As drafted, the Bill does not address the way in which decisions on behalf of, or actions for, a person who lacks capacity can be affected by the proxy decision maker's biased assumptions about, and discriminatory attitudes towards, disabled and older people. For example, research has pointed to ageist assumptions in the care and treatment of older people, and to the reliance on chronological age as a proxy for a person's recuperative capacity. We should also note the poor practice that has been allowed to develop in respect of "do not resuscitate" orders, which are being used without prior consultation, for example. There is a need for age discrimination legislation that goes beyond dealing simply with employment issues, and which deals with goods and services, not least in respect of health and social care.
I am following the hon. Gentleman's argument with interest and a good deal of sympathy. There is a clear corpus of legislation against discrimination on the ground of disability. In the hon. Gentleman's view, would someone making decisions with an inbuilt bias—conscious or unconscious—on behalf of a person without capacity already be at risk under the Disability Discrimination Act 1995? Is it necessary to legislate further on this matter?
That, in a way, will be the purpose of the amendments: to get Ministers to clarify whether the law currently provides such protection for people with disabilities. If it does not, I propose an amendment that would ensure that people are not treated less favourably as a result of such discriminatory attitudes and beliefs.
Throughout the scrutiny of the draft Bill it was put to the Joint Committee that a "general authority to act", as it was called in that draft legislation, should be separated from the more formal arrangements needed for authorising major decision making about a person's health, welfare or financial affairs. The Committee recommended
"a redrafting of the clauses concerning the general authority in order to clarify that its use is intended to be limited to day-to-day decision-making and emergency situations".
The Government have redrafted the provisions and renamed the clause, but considerable concern remains that its terms are still unclear and too widely drawn. For example, would a paid or family carer be taking an action under section 5—if the Bill becomes an Act—when a person without capacity is being moved from a family home to a residential care home? The Joint Committee recommended that there was a need for a sustained and comprehensive training programme for professionals and a public information campaign for informal carers to be implemented in order to provide the relevant groups with an accurate understanding of what the general authority was all about.
I believe that such a programme of publicity will be essential if the rights enshrined in the Bill are to be realised in practice, but such a programme is not of itself sufficient. There is also a need for independent advocacy and if there are concerns that a person may not have capacity in relation to a particular decision taken at a particular time, the presumption of capacity must mean an assessment of mental capacity. Let me provide an example of what I mean.
A whole host of assessments are made under statutory provision—for example, community care legislation, delayed discharge legislation and mental health legislation—that should be prefaced by an assessment of a person's capacity. We should not treat people who lack capacity as passive recipients of care. It is essential that the Bill plays a part in ensuring that they are not treated in that way in future. I hope that the Standing Committee will have the opportunity to examine how the Bill fits in with existing and future mental health statutes and case law.
Reference has already been made to last week's judgment in the European Court of Human Rights and the Under-Secretary's response was a matter of some concern to me. He suggested that the Department was in a process of consideration, but he did not convey any sense that that consideration would be speedy. It would be useful if, when she replies to the debate, the Health Minister, Ms Winterton, could tell us whether it is the Government's intention to report back to the Standing Committee on the Government's intentions in respect of the Bournewood judgment.
I agree with the hon. Gentleman. The Scrutiny Committee made it clear in its report that the Bill should meet the Bournewood gap. Having heard the European Court's judgment in the last week, it is now incumbent on the Government to table amendments to deal with that before the Standing Committee sits.
I could not agree more with the hon. Lady. It is essential that such amendments be tabled. My understanding, on the basis of what others have said, is that the judgment has further widened the gap, not narrowed it. The challenge that the Government face is now even greater and I hope that the Minister will give us some comfort on that matter when she winds up the debate.
The aim of the Bill is clear in seeking to maximise a person's opportunity to make their own decisions. That should also apply to the whole system of lasting powers of attorney, which I want to touch on briefly. The Bill states in clause 4 that donees are required to sign only that they understand the duty imposed on them to act in a person's best interest, but the Bill does not extend the duty to include the principles that are set out in clause 1. Surely it should be an overriding duty to help the person to make their own decisions if they can. The LPAs should apply only when the person cannot make their own decisions. I hope that the Government will entertain amendments in that respect.
The principles should apply not only to LPAs but to enduring powers of attorney—the EPAs that currently operate. There are up to 80,000 of them in place at the moment and many more are drafted and waiting to be registered at some later date. Managing the transition from the EPA to the LPA system will take time, but it must be right for vulnerable people to enjoy the increased protection that the Bill will afford them at the earliest possible moment. That is why it is hard to understand why the Government intend to exclude the workings of EPAs from clause 1 and schedule 4 provisions. Surely, the new higher standards set in the Bill should apply. Particularly where an EPA has not yet been registered, there should be scope for upgrading it quickly to the status of an LPA. The new system must, and does, have more safeguards than the old one. In the evidence given to the Joint Committee, we were told that 20 per cent. of financial transactions under the present system of enduring powers of attorney reveal some abuse. We need a robust and publicised system for monitoring and spot-checking both EPAs and LPAs. Many people would find it hard to understand why the Bill would not allow an individual who is bankrupt to be appointed as a financial attorney but would not provide for a check on whether he or she is on the protection of vulnerable adults list. People on the POVA list have abused, neglected or otherwise harmed vulnerable adults or put them at risk of harm. It must make sense that before signing off an LPA the donor has the right to check the POVA list. Furthermore, it should be a requirement that the Public Guardianship Office check the POVA list. In all cases where the donee is on the POVA list that should alert the office to place the LPA in a high-risk category for monitoring purposes.
I hope that the Minister will be able to respond to my final concern when she winds up. Why is it that the system of appointeeship for looking after benefits will remain outside the principles, protections and safeguards of the Bill? Is that the product of silo thinking, with the Department for Work and Pensions unwilling to engage with this person-centred law reform? It must make sense to have one set of rules and safeguards. How can it be right that benefit appointees will have more powers than court-appointed deputies and attorneys, without any of the safeguards? As well as not having to adhere to the general principles, appointees are not monitored and an appointeeship is revoked only if and when concerns are raised by third parties. If there is no budging the DWP, the lack of clarity about how the two systems will work alongside each other should at least be sorted out. I hope that that can be done.
The Bill has been 15 years in the making. Legislation is needed now to clarify who can and cannot make decisions regarding the personal welfare, health and financial interests of someone who lacks capacity, and to enable people to plan ahead in such situations. The Bill is not perfect, but it provides long-overdue legal rights and protections for some of the most vulnerable people in our society. The Bill has the potential to strengthen the decision-making rights of disabled people. To realise that potential, the Bill should receive a Second Reading so that it can be subject to detailed debate and amendment in Committee. The Bill is about real people, their right to life and their right to a good quality of life. I hope that the House will support it so that we can make it an even better Bill.
I am chairman of the all-party pro-life group, so I speak personally and in that capacity. It is evident from the interventions that we have heard so far in the debate that interest in the Bill is high and that people are taking it extremely seriously. Some of the points that I intend to make mirror some of the interventions and may be the basis of some of the amendments to be tabled in Committee.
I agree with my right hon. Friend Mr. Barron that we need legislation to protect people who lack capacity, but any such legislation needs to be safely and tightly drafted to ensure that they are properly protected. I support the principle of creating a statutory framework to protect those individuals who lack mental capacity. However, I am strongly opposed to those clauses in the Bill that could—I use that word advisedly—introduce euthanasia by omission, and I listened very carefully to my hon. Friend the Minister on that issue when it was raised in interventions. There are many individuals and organisations with legitimate concerns about that issue. When my hon. Friend the Minister responds, I hope that she will clarify the situation as regards the case of Bland. I would like it put on record whether the Bill will enshrine the decision in Bland in legislation.
During the past 12 months, I have met Ministers on several occasions to try to set out my serious concerns and those of others about the Bill. I am grateful to the Government for their willingness to engage with concerned parliamentarians and especially grateful to Lord Filkin and my hon. Friend the Minister. We welcome the important changes that the Government have made to the Bill, especially clauses 58 and 26(2) on advance decisions. Those are not cosmetic changes, as has been suggested in some quarters.
I am disappointed, however, that the Government have so far failed to amend the Bill to meet our concerns about the suffering that will be caused to many incapacitated adults if certain provisions are enacted. I was particularly struck by the powerful representations that I received from organisations representing disabled people. I am not convinced that we are listening to their concerns about the way that the Bill would create an imbalance in legal power between the appointed decision maker and the person deemed to be without capacity.
I accept the tremendous job done by carers. I have two grandsons who have a physical disability so I am well aware of the contributions made by carers, but who are we trying to protect in the Bill—carers or mentally incapacitated adults? Surely, it must be the latter, and I fear that organisations promoting the Bill, in particular the Making Decisions Alliance, may be paying too much attention to the needs of carers and too little to the needs of those who lack capacity.
Last week, I was struck by the fact that Mencap—a key member of the Making Decisions Alliance—criticised the High Court judgment in the case of baby Charlotte on the ground that doctors should not make assumptions about the quality of life of disabled children. The long-term ramifications of that case pale into insignificance beside those of the Bill, and I am surprised that Mencap has not been more critical of the provisions that would allow attorneys and medical professionals to make quality of life judgments about mentally incapacitated adults.
It would be disastrous if the Bill, which has the laudable aim of transforming the lives of mentally incapacitated individuals and their carers, were to become a vehicle for the introduction of euthanasia and assisted suicide. Vulnerable adults who are supposed to be protected by the Bill would be placed at grave risk.
There are three main ways in which the Bill could weaken our legal prohibitions against euthanasia and assisted suicide. First, the Bill introduces legally binding advance decisions to refuse treatment, or living wills, as they are more commonly known. In principle, I accept that an individual can give an advance refusal to treatment and I have no objection to medical professionals upholding a refusal that is recent, well informed and not motivated towards suicide. However, medical professionals should not be legally obliged to respect a refusal that is made on the basis of inadequate information and/or has the aim of ending life.
Legally binding advance refusals of treatment will make it difficult for practitioners faced with the need to make rapid decisions in acute medical emergencies to decide when an advance directive is valid and applicable. Fear of litigation may result in medical professionals withholding appropriate care, with resultant harm to the patient—a comment made in an intervention earlier. That is not about looking after the interests of medical professionals; if doctors and nurses are legally obliged to respect ill-advised, vague but apparently binding advance refusals, it is the incapacitated patient who will suffer.
I ask the House to consider the following scenario. A suicidal patient may prepare an advance directive that clearly specifies that they have taken a particular drug and that they refuse to have their stomach washed out or to receive an antidote. The circumstances and the refusal of life-sustaining treatment have been specifically addressed so the advance directive would appear to be legally binding. Medical professionals would be legally barred from attempting to resuscitate that patient and if the overdose was not fatal the patient could be left with significant permanent and disabling organ damage. It is because of such scenarios that I oppose making advance decisions legally binding.
May I take the hon. Gentleman back to the point that he was making about suicide? I agree very much with what he says, but is he not making the point that the Government have not faced up to the problem that in the case of a suicide those decisions are taken very, very speedily? They talk about provision to challenge the view of the patient who is incapacitated, but that challenge must be a legal one, so it cannot happen at the time. A doctor's judgment to make such a challenge, which turns out to be wrong, may end up with the doctor suffering. That key point is nowhere addressed in the Bill.
I have just been making that point in my contribution, so I agree with the right hon. Gentleman.
When giving evidence to the Joint Committee, Baroness Finlay of Llandaff—an expert in palliative medicine—said:
"Advance refusals are very helpful for communicating with patients. It is terribly helpful as an idea of what patients want. My concern is that they are legally binding and then you have to sit back and watch something happen that you just feel terribly uncomfortable with."
I agree with that.
According to an independent survey of doctors conducted by Opinion Research Business for Right to Life in May last year, 76 per cent. of doctors indicated that they shared the concern of the House of Lords Select Committee on Medical Ethics that patients could deprive themselves of medical treatment developed after they had signed their directives. Almost half the doctors polled—49 per cent.—would seek advice from a colleague if they had an advance directive saying "no tube feeding" and were unable to confirm the directive at the time of treatment. Most doctors—71 per cent.—claimed that they would disregard an advance directive in circumstances where they felt it would cause harm to the patient or did not seem to apply.
The hon. Gentleman is making a very important point. He may agree that, in Committee, we need to look carefully at the definition of advance directives and what they can allow. It is one thing to have an advance directive that indicates a person's preference in the period leading up to death; it is quite another thing for someone to express a preference that will result in death when it would not otherwise happen.
Yes, that is why I hope that all these issues will be clarified in Committee.
The Bill's proposals on advance decisions could force medical professionals to remove life-sustaining nursing care, including food and fluids, and medical treatment from mentally incapacitated individuals, thereby causing death. That can hardly be said to enhance the interests of those who lack capacity.
The second way in which the Bill could weaken our legal prohibition on euthanasia and assisted suicide is through its provisions on lasting powers of attorney. Those provisions will cover health care as well as financial matters and allow third-party or proxy decision makers to direct medical professionals not to treat a patient. Those proxy decision makers will also be able to direct medical professionals not to provide life-sustaining treatment when they have been granted such authority by the patient when competent. Under clause 6(5), medical professionals may be acting unlawfully if they do anything that conflicts with what the attorney has decided.
There will certainly be circumstances where the mentally incapacitated patient's family will benefit financially from his death. Under the Bill, the proxy decision maker will have the power to refuse treatment, so hastening that patient's death. That possible conflict of interest is not addressed in the Bill. The attorney's decision must be respected even though it is the patient, not the attorney, who stands to suffer from the decision. We are all well aware of the pressure under which doctors and nurses work in the NHS. I fear that, when they would like to challenge an attorney's decision, hospital staff will simply not have the time and resources to do so. I am afraid that the Government have yet to address the problems associated with lasting powers of attorney.
The third way in which the Bill could weaken our legal prohibition on euthanasia and assisted suicide is in its definition of best interests. It is argued that decisions made for, or on behalf of, those who lack capacity must be in their "best interests", thereby providing an important safeguard against abuse and the practice of euthanasia or assisted suicide. Best interests constitute the over-arching concept in the Bill. The Government regard the best-interests test as objective, but I disagree. At present, the Bill's definition of best interests is dangerously subjective, with too much emphasis on an incapacitated patient's wishes or what somebody else imagines will be his or her wishes.
Consider the following scenario: medical professionals wish to treat a patient who lacks mental capacity, but they come up against a relative or friend waving a piece of paper appointing him or her as attorney with authority to refuse medical treatment. The attorney instructs the medical team to stop treating the patient, telling the team that that is what the patient would have wanted; it is in his or her best interests. Unless the definition of best interests in clause 4 makes it clear that the consideration of best interests must take into account the person's life and health in so far as they could properly be the object of health care, I cannot understand how the medical team could overrule the attorney's instructions in my scenario. Decisions that are clearly contrary to the patient's medical or clinical best interests but reflect other people's wishes and feelings will be made. The Adults with Incapacity (Scotland) Act 2000 is much stronger on this point and refers to the patient's "benefit". I hope that we can take that on board in Committee.
If our aim is the protection of vulnerable adults who lack mental capacity, we are not going the right way about it in the Bill. Let me give another example. Clause 31(5) authorises non-therapeutic medical research on the mentally incapacitated. Allowing research to be conducted on mentally incapacitated individuals that does not actually benefit them does not fit well with the underlying principle in the Bill that acts done for or on behalf of a person who lacks capacity must be done in his or her best interests. Perhaps the Minister could elucidate that further.
If the Government want to strengthen protection for vulnerable adults and prove their frequently expressed opposition to euthanasia—I accept the sincerity of that—I urge them, as a minimum, to insert a clause making it clear that the Bill gives no statutory authority to any decision made with the purpose of causing the death of the person about whose personal welfare the decision is made. Such a clause would make it crystal clear that the Bill does not permit euthanasia and would build on the welcome declaratory provision in clause 58.
An amendment to clause 60 is needed to ensure that the definition of treatment excludes food and fluid, howsoever delivered, in order to prevent patients from being deliberately killed by dehydration and starvation. The recent High Court judgment in the Leslie Burke case declared that current General Medical Council guidance on the withdrawal or withholding of food and fluid delivered by artificial means is unlawful in some cases. As the Bill reflects that current GMC guidance, it must now be amended.
We must not forget that the pro-euthanasia lobby sees the withdrawal and withholding of treatment and care from non-dying incapacitated patients as the first step towards the legalisation of euthanasia. Helga Kuhse, past president of the World Federation of Right to Die Societies, and a leading contemporary ethicist, has said:
"If we can get people to accept the removal of all treatment and care—especially the removal of food and fluids—they will see what a painful way this is to die and then, in the patients best interests they will accept the lethal injection."
The Government's assurances about the Bill's practical implications do not in my view go far enough. The risks of abuse are real. Unless and until I receive further assurances from them, I will be unable to support the Bill today. I intend to abstain and reserve my position until Third Reading, when I will be able to judge whether they have responded to my concerns in Committee or on Report. The legislation will need a fair period for debate, and I hope that they will allow it that.
It is a privilege to follow Jim Dobbin. I listened carefully to what he said and agreed with all of it, and in particular with his concluding comments. It was an excellent speech and I hope that he will seal it in an envelope and pass it down the Bench to the Minister for his immediate attention—I certainly would.
This time last week, I did not intend to speak in this debate. Like, I suspect, many right hon. and hon. Members, I had taken the Government's assurances at face value. I was busy drafting letters to constituents with bland assurances that the Bill did not in any way lead to an extension of euthanasia or any consideration of that for those who have to take the decisions. Only when I read my constituents' letters more carefully, before finalising my reply, did I decide to go back and have a long look at the Bill. I did that before, on Maastricht, and look where that got me. I promise my party that I will not make too much of a habit of this, or become more rebellious—well, we will see.
Having studied the Bill, I began to have serious concerns and doubts. I do not usually speak in such debates, so I come with a genuine concern about what I have read. Today, my concerns have grown rather than shrunk as a result of what I have heard both from the Minister and from others on both sides of the House. The key point is that the elephant in the room in this debate is the Bland followed by the Byrne judgment, which the Bill makes no attempt to deal with. I give the Government credit—as I know that the previous Conservative Government tried this and found it too complex—for trying to meet genuine concerns among people who care for those who are incapacitated either temporarily or, arguably, permanently. We need to establish how such people's rights are to be measured and dealt with, and I do not doubt for a moment the Government's good intent. I do not believe that they set out to make euthanasia more applicable or expand its remit, but that does not mean that it may not happen.
The problem is that the Government are creating legislation that will overlay a serious problem, in that the issue of euthanasia is already out of the bag. By omission, we already have the position whereby people can be denied food and liquids as part of their medical treatment, so defined. That issue underlies every single comment that I will make today and that Government Members with similar concerns have made.
The Government have set up a scheme under which a lasting attorney can be appointed to make medical and other wide decisions about the well-being of a patient when that patient becomes incapacitated, as defined in the Bill. I understand that the intention is to enhance the patient's autonomy, but the problem is that patients might have changed their minds, and in many aspects of the legislation it is impossible to take account of that. No matter what has been said, such attorneys have, legally, the power to make decisions on behalf of patients, and one such decision can be to withdraw treatment if they believe it to be the expressed and implicit wish of the patient before they became incapacitated, and that withdrawal of medical treatment can include the withdrawal of fluids and food. In essence, the attorney has the power to send the patient to his death. Nothing in the Bill prevents that.
It is not feasible to say that the doctor will be able to challenge that, because the doctor or other medical staff would have to make such a challenge legally, and in many cases time is of the essence. In an overstretched health service, with NHS staff busy with the next case even as they deal with the current one, no one will want to go down that road. Medical staff will not want to refuse to abide by such a decision, knowing that later they could be charged with assault simply because they applied treatment that the attorney had decided against.
Clause 26 specifically says that the doctor does not incur liability unless he is satisfied that the advance decision is valid and applicable. That is a very high standard in law and, indeed, means that there is a presumption in favour of life. I understand what the right hon. Gentleman said about the Bland decision, and that he would like it overturned, but I wanted to put that on the record, and the fact that the Bill does not alter the current common law position.
I understand what the Minister says but, with respect, the Bill also legislates powerfully for the attorney. It says categorically:
"A lasting power of attorney is a power of attorney under which the donor . . . confers on the donee . . . authority to make decisions about all or any of the following"— including their well-being in terms of their medical treatment. The Minister is saying—I suspect that he genuinely believes it—that there is the possibility that medical staff will be prepared to stand by their decisions and take the challenge to the necessary court. Even if that might happen in exceptional circumstances, I suspect that the reality is that it will not because the decision may be marginal, and given the Bland judgment the doctor will not deem it necessary to make that challenge and will not do so. The greatest injustice involving the power of attorney lies in those cases. Although I am not saying that the Minister does not believe his assurances, they do not stack up given the legalities in the Bill.
I am worried about where the measure will lead because examples from the other side of the Atlantic seem to show where we are positioning ourselves. There was a case involving Marjorie Nighbert of Florida, who had given power of attorney to her brother. She later had an accident and was taken to hospital. She was clearly incapacitated and thus unable to make decisions that could change any of her previous views. There was a debate on whether treatment should be withdrawn. The court decided that she was not capacitated although the nursing staff at the time believed that she had given sufficient indication that she wanted to receive fluids and food. Her brother, however, believed that treatment should be withheld because he thought that she would never recover. He said that he believed that because he recalled that while she was watching a programme on the specific issue, she said that if she were ever in such a condition, she would not want medical treatment to continue to be administered. The court upheld that on the basis that it completed the process in which she had been originally engaged and indicated her true intent. Fluids and food were thus withdrawn, and she has subsequently died of either starvation or dehydration, or perhaps a combination of both.
No doubt all hon. Members will say that such a situation could not happen here. However, the Bill opens the door to that process. I was struck by a comment made by Lord Filkin, I suspect in response to Lord Alton and the hon. Member for Heywood and Middleton in June. It was conceded that under the Bill, if a person, for example, told his flatmate that he would not want to be resuscitated, that could be considered to be an advance decision to refuse treatment. The Government accepted that such a decision did not have to be written, but could be oral, and that a previous written statement could be elaborated on by an oral opinion, despite the fact that the only person who knew that might be the flatmate or the attorney at the time. There would be no way of checking whether the statement was true.
I was pleased that my right hon. Friend brought the case of Marjorie Nighbert to the House's attention. I understood that she was restrained in her bed to prevent her from raiding other patients' food trays. Unless the Bill makes it absolutely impossible that such a situation could happen in this country, we must vote against it.
My hon. Friend makes his point powerfully. I did not want to take the case any further because I only wanted to illustrate the problem that such protections are not in the Bill. Although we say that such a situation could not happen here, the Bill does not make that clear, so the problem is that we may well find ourselves in that position.
There are also cases in which there are question marks over the motivation of those with power of attorney. The Bill does not deal with the possibility of people obtaining general benefit from an individual's demise after the withdrawal of fluid or foods due to their decision to withdraw medical treatment.
The right hon. Gentleman will be aware that the Joint Committee examined advance directives in great detail and considered how they could be up to date and well informed, rather than being statements made years previously, perhaps before new medical advances were made. He says that he is dissatisfied with the detail in the Bill, but I am not sure whether he has had the opportunity to examine the draft code of practice, which addresses many such issues. I am sure that it would reassure him.
I have looked at the code of practice. I want to return to the question of these wills—as it were—in a moment because the situation has not been sufficiently dealt with or tightened up in the Bill. The code of practice is all very well and good, but I am considering the power that a doctor will have to challenge such decisions given the circumstances in which they operate at the time.
I agree with my right hon. Friend—I always make a point of doing so. That is the reality of the situation.
I return to the original point that I made: the elephant in the room is the position on the withdrawal of fluid and foods. Much of the Bill ignores that single fact, and until it is dealt with in the Bill, as it should be, many of its measures will be dangerous rather than helpful. I simply refer Mrs. Humble to my earlier comments.
Let me take the question of attorneys slightly further and consider deputies. I am worried about the appointment of deputies who might have no specific knowledge or understanding of the circumstances of the individuals whom they are appointed to oversee if those people have no family or have not appointed attorneys at the time—I think that Mr. Burstow raised this point. It is likely that a deputy will be a social worker of a district. That person is not likely to be medically qualified, but will have the power to make decisions as an attorney, as it clearly says in the Bill.
It is worth referring to clause 4 because we must consider whether someone who does not know a patient's background will be able to reach decisions serving his or her best interests. I remind the Minister that clause 4 lists elements that such a person would need to know. How would a deputy be able to
"consider, so far as is reasonable ascertainable . . . the person's past and present wishes and feelings"?
The present wishes and feelings would not be known because the individual would be incapacitated, and if deputies did not know the individual in the past, they could not take a view on past wishes. However, deputies will nonetheless retain the power to do that. That situation illustrates an additional problem with the Bill—and once again the question of whether food and fluids represent medical treatment is key. The fact that a person who does not know an individual may interpret his or her wishes in the way in which the Bill anticipates is a strange concept.
I hesitate to interrupt the right hon. Gentleman, but he is confusing the roles of attorneys and deputies. It is important to emphasise that an attorney will be appointed by a person who has capacity yet worries about lacking it in the future. It will most often be the case that the attorney will have been married for many years to the person who comes to lack capacity. A deputy is a person appointed, and consistently scrutinised, by the court who will be given more restricted powers under the Bill to ensure that several of the problems that the right hon. Gentleman envisages will not arise. An attorney must be given powers by a person when he or she has capacity if decisions such as those that the right hon. Gentleman raises are to be made. It is important that we have clarity on these points.
There is no question of clarity about what the attorney will do, but I simply say to the Minister that that does not change anything. The individual will make legally binding decisions, which is the problem that lies at the heart of the Bill. It would not be a difficulty if we did not face the problem of omission, as the Minister knows, and until that is dealt with straight up in the Bill, he will face the challenge time and time again. All hon. Members will be worried and anxious until the issue is dealt with.
I told the hon. Member for Blackpool, North and Fleetwood that I would address advance directives. I have my reservations about such documents. We said that they should be up to date and deal with the concerns of those who worry about being incapacitated, but they are also incredibly inflexible. Many people worry about being a burden. They may have watched a television programme or heard a radio programme on the subject or know something about someone who has become a burden. They often think of medical treatment in terms of unnecessary intervention, such as resuscitation, which they rightly do not want to happen to them.
Where does it say in the documents that the individual concerned has a positive wish to die by starvation or dehydration? I doubt that that will ever be written into such a document, yet it will be subject to interpretation. Until it is clarified that that option is not available, the individuals concerned will have no understanding that the decision not to have what they consider to be intrusive medical treatment, such as being resuscitated unnecessarily many times or being subject to an intervention that they do not want because it would lead to them being a burden, will cause their demise—their death—as a result of withdrawing the very essentials of life. No one will write that in. Again, if the Government want to deal with that, they should ensure that their view is clear to all concerned.
I am grateful to the hon. Member for Heywood and Middleton for mentioning suicide. It is a huge grey area. The Minister said that it would be clear because doctors would not necessarily accept the decision made in the case of a suicide even if a living will had been made prior to the suicide attempt. I am in no way as confident. It is a matter of dispute whether a doctor in that pressured moment will make the sort of decision that may lead to them facing a court for whatever reason, perhaps because they have carried out medical treatment that the person later says was intrusive and wrong and that they had specifically said should not happen.
The second consideration is what happens in the case of an individual who knows of the living will, who is present at the time of the suicide and who does not call the ambulance because it is their understanding that that is the wish of the person committing suicide. We know from doctors that the vast majority of suicide cases are not about wanting to die, but are cries for help. Most want to live. That is the reality. Very few head off in a suicide attempt deliberately to die. They do it because they need help. If they made a living will earlier and someone interprets it incorrectly, does that not give that person a reason not to follow through because they think that that is the expressed belief? There are concerns about advance directions—the living wills—that may lead to the wrong decision being made in a number of cases.
The Government have also not dealt with the problem of research. The Bill changes accepted practice. In almost every case, intrusive research takes place if it is of benefit to the patient. We are going to allow an individual who is not able to express his views or opinions, and who is subject to other people's views and opinions, to have research carried out on him—albeit reasonable and likely to be negligible and not unduly invasive or restrictive—that is not necessarily undertaken as a benefit to that patient.
My right hon. Friend raises a difficult issue. I hope that he will forgive me, but I do not entirely agree with him. The question of whether research should be carried out has been resolved between the doctors and the relatives, and research has taken place in circumstances in which it was of no direct benefit to the patient. The Government are trying to codify that while providing safeguards. In the process, they have highlighted the stark reality that we have tolerated an ethical system that may be highly questionable.
I accept my hon. Friend's view, but the Bill codifies something that is fundamentally wrong. Such action could have been challenged previously, but it will be impossible to do that in future. Whether the Government set out with good intent is not the issue. The problem is that they are locking into legislation bad practice that is not in the best interests of an individual who is incapacitated and unable to make the decision. Whether we are dealing with the withdrawal of fluids and food or research on an individual, the simple test is whether we, as people who are conscious and able to make such decisions, would allow those procedures to be carried out on us. I guess that the answer to that would be no in most cases. Why should it be any more the case that the wish of an incapacitated individual should be overridden in such a way? That is where the Bill falls down.
There is another point to consider, which the Government may not have picked up. It is clear that there is a contradiction between road traffic legislation and the Bill. There may be problems with where the truth lies. Listening to my hon. Friend Mr. Key and other hon. Friends, it appears that there are serious contradictions, which I hope the Government pick up before the Bill makes it to law, if it ever does.
As I said, I did not come to the Bill with existing deep or profound views. I simply read it and discussed it with others over the past four or five days. I reason that there are so many fundamental flaws at its heart that we cannot allow it to go through as it stands. To do so would make the problems that we face worse, not better. I understand that the Government are trying to sort out the problems and that for 15 years, as others have said, we have needed to find a way to protect those who are incapacitated across a range of issues and problems, but until we deal with the single fact that euthanasia is not just by commission, but is also by omission—until the Government wrestle with that problem and put it down once and for all—we will have a deeply flawed Bill that could lead to serious hurt to those who need our help and not our condemnation.
I declare a number of interests. I am a member of the all-party pro-life group. I served as a Samaritan for 18 years. I have also for five years been the carer of somebody who is severely disabled.
I support legislation that will safeguard the interests of adults who lack mental capacity. Those organisations that have been campaigning for the Bill are rightly concerned with the deficiencies in the law that have left people open to abuse and exploitation. I hope that the Bill eventually remedies those deficiencies.
As for the day-to-day care of those who lack mental capacity, the Bill seeks to provide legal safeguards that they do not currently enjoy. Tightening up the oversight of financial affairs of those lacking mental capacity is long overdue. Giving carers greater confidence in their legal standing when looking after those who lack capacity—perhaps by dressing them, washing them and providing medication—is also welcome.
There are positive elements in the Bill. However, I shall not focus on those. Instead, I want to consider how it deals with end-of-life decision making. That is incredibly fraught and complex. If vulnerable adults are not to be placed at risk, it is imperative that we get the parts of the Bill that deal with end-of-life care right. We have some way to go. Like many colleagues on both sides of the House, I fear that unless the Bill is amended, it will leave the door open to the legalisation of euthanasia and assisted suicide. That would be disastrous.
Like many colleagues in the House, I wish that I could talk in the abstract about measures in the Bill. I wish that I could make a speech like that of Mr. Duncan Smith, which was quite eloquent and adequately described everything that I wanted to say. But I cannot. I want to talk about the experiences of my mother, who lived for five years in total paralysis.
In 1990, my mother had a massive bipolar stroke. For those who do not know what that means, she was completely paralysed from the roots of her hair down to her very toes. She could not drink; she could not speak; she could not eat; she was doubly incontinent. It sounds pretty horrific, and it is. It is horrific for the individual who is in that condition and it is awful for the carers and people in the family who have to look on. Who would want to see their relative in such an appalling state? It is frightful. All one wishes is that the doctor's hypothesis is correct and that the person quickly succumbs to some bronchial condition. People in such a condition lose the facility to swallow and so fluid eventually enters their lungs and they drown in it. As a relative of someone in that condition, one hopes that that will happen sooner or later.
My mother is an incredibly obstinate woman, and despite all medical pronouncements she survived that appalling stroke and gradually recovered her capabilities and capacity. Once she was better, she came to me and said, "I never, ever want to be put in that position again. If that happens to me again, I want you to do everything you can to make sure that I leave this world as quickly as possible." She produced a legally binding advance directive, with which I was very happy and I signed up to it.
We lived with my mother in a marvellous condition for five years until she succumbed to another massive stroke. It was exactly the same as the first one, only there has been no recovery from it. She was admitted to hospital in a state of semi-coma and I went to see her. Like the previous time, she had lost all capacity to speak, and she was put on a drip. I am an engineer, not a medical person, and I am just a daughter. I thought that the drip was some magic fluid that delivered everything. If one speaks to normal people, one finds that they are not sure about it. I thought that the drip delivered everything including food—a little like an aqueous Complan, as it were. I was told that it was keeping my mother hydrated and comfortable.
I went to the doctor and said, "My mother doesn't want to be kept comfortable, actually. She has a legally binding advance directive and her wishes are that she be taken off the drip." This man—God bless him—said, "No, we won't be doing that for some days. We expect your mother to succumb very quickly and we want to make sure she is comfortable until she does so"—recognising that hydrating a body is absolutely essential to keeping somebody comfortable. I cannot and never will sanction or support any measure that results in the dehydration of an individual. It is absolutely inhumane to allow somebody to die of thirst. We collect money to stop that happening in Africa, yet we sit here about to agree that it is perfectly acceptable for people of diminished responsibility. That is unacceptable to me.
Although my mother was in a semi-coma, I felt sure when I was able to look at her as the days passed that, just as before, she was fully conscious and fully aware of what was going on. It was immensely difficult to convince any of the medical staff that, although my mother was totally paralysed, I felt that in her heart of hearts she was still with us. I described her condition as "just like us, only she can't eat, she's totally paralysed and she can't talk." We should look not at the body but at what lies beyond it.
I spent weeks going backwards and forwards trying to get the doctors to agree with the legally binding directive and to get people to see that my mother was not in a permanently vegetative state. I had been told that it was impossible for her to be in any other state given her condition. As the weeks went by, my mother survived, despite all the protestations, and she was moved. I became convinced that she was fully aware of what was going on, but because she could not speak it was very difficult for me to secure concrete proof of that. Total paralysis means that one cannot even move an eyebrow or blink when one wants to. As the weeks went by, my mother remained on a hydration drip, and I slowly but surely became convinced that she could blink to order. As time passed, I realised that she was certainly doing so and was able to prove that, in fact, she was fine. Inside the body that had deserted her, she was fine.
As that was happening, doctors came to me once again and told me that I needed to think about food for my mother. I said, "What do you mean food? She has that hydration drip." They said that she had not had any food for the previous 15 weeks. My mother had been very overweight and had lost a lot of weight, but I thought that that was because of her condition. I did not think that she was being starved to death.
Doctors asked me to think very seriously about the matter, because they thought that if they gave her food she might survive for quite a long time, and that not doing so might hasten her death. I went to my mother that evening to talk to her about whether she wanted to live. I sat down next to her bed and said, "We have choices to make, Mum. Tomorrow, they want to operate on you, insert a peg and you'll receive food. If you say yes to that, there is a likelihood that you will live for quite some time. If you say no, you will die of starvation. You'll be quite comfortable, though, because I'll make sure that you're hydrated and you won't have this terrible thirst." People who cannot drink have unimaginably dry mouths. It is horrific. Hydration is desperately needed. I used to swab my mother's mouth with damp cotton just to keep her comfortable.
I made sure that my mother understood what I was saying. I had a nurse with me—a lovely woman who sat next to me and who was present for the conversation. In the morning, I went back to my mother and she blinked out, "I want to live." I had to go to the doctor and say, "My mother has now given permission; get on with the operation, please." There was a legally binding directive, which was made following the most appalling stroke, and five years later an individual who had been struck down with the exact same condition was saying, "I have changed my mind."
If my mother had not had me, all I believe would have happened is that she would have starved to death. I do not think that anybody would have taken the time or known her well enough to realise that she was actually present and capable of making decisions. We make so many judgments on behalf of people who are incapable of making them themselves. That is disastrous. It would have been disastrous in the case of my mother; she would have died. She did not want to die; she wanted to live. She exercised the choice of changing her mind. It is almost impossible for us to know what we would be like under any given circumstance until that circumstance has arisen. It is absolutely wrong of us—the able-bodied and the able-minded—to take that right away from an individual.
My mother was put on an automatic feed. The Bill describes that as medical treatment. My mother did not need any medical treatment to stay alive—she needed water and food. Her body did not need anything else. She lived for five years in that condition. She was a grandmother for five years; she was my mother for five years. I would argue that in many ways they were the best five years of her life.
I fear the effect of some of the omissions from the Bill. I fear what they mean for people like my mother—wrecks of bodies, voiceless bodies. I do not want us to do anything that takes those rights away—nothing. I could not possibly agree to that. Nobody sitting in this Chamber today could agree to it if they had been with me on this journey. It is right that we have discussions and pass Bills to enhance the rights of people such as my mother and the thousands of people in this country who find themselves in a similar position, but we have to be very careful when we do that. We must not take liberties. We must not take decisions away from people who cannot speak and presume that, because they cannot speak, we know better. We do not know better.
I will not support the Bill today; I will abstain. I want to see whether some of the amendments that the pro-life group are eager to promote will be accepted. If they are, and if I can read them knowing that people like my mother are protected and have the quality of life that they have a right to, I will be able to support the Bill on Third Reading. If not, I do not intend to let down my mother or the thousands of people in this country who are in the position that she was.
It is a great privilege to follow Mrs. Curtis-Thomas. The House listened in absolute silence to what she had to say. It was very personal, very emotional and true.
I have always considered the Bill to be a mixed bag. It is like the curate's egg—good in parts. However, in listening to the debate, especially the Minister's contribution, I have come to the conclusion that it is far more dangerous than I first thought. I am grateful for the fact that the hon. Member for Crosby spoke before me because I was privileged to have her support when I introduced my private Member's Bill, the Medical Treatment (Prevention of Euthanasia) Bill, in 2000. These issues were fully debated at the time, and the hon. Lady played a major part in debates both in the Chamber and in Committee.
At the time, I was accused of scaremongering because I referred to the suffering caused to patients by the withdrawal of food and fluids, however delivered. I was also ridiculed when I said that I was of the opinion that the withdrawal of assisted food and fluid, thus ending the life of a patient, is in breach of article 2 of the European convention on human rights. I am therefore deliberately beginning my speech by quoting the case of Mr. Leslie Burke. I know that he has been mentioned before. Mr. Burke challenged the legality of the General Medical Council guidelines that permit doctors to withdraw treatment, including assisted food and fluid, from mentally incapacitated patients. The guidelines are reflected in the Mental Capacity Bill, and I draw the attention of the House to the fact that the Disability Rights Commission supported Mr. Burke in his legal challenge.
When Mr. Justice Munby of the High Court family division ruled in favour of Mr. Burke, he stated that the guidelines are in breach of articles 2, 3 and 8 of the European convention on human rights. The all- party parliamentary pro-life group has consistently maintained that the GMC guidelines are in breach of article 2, which states:
"No one shall be deprived of his life intentionally".
That was one of the main points that we made in our submission to the GMC when it was receiving evidence on the issue. Moreover, among the points raised by Mr. Justice Munby was the fact that the withdrawal of assisted food and fluid from patients can cause pain, discomfort and extreme distress that results from malnutrition and dehydration. That is another crucial point that I and others have made persistently over the years.
There is no purpose in pretending that the withdrawal from a non-dying patient of assisted food and fluid, which is defined as treatment in clause 60, is not euthanasia. Professor Sheila McLean, a leading euthanasia lawyer, has made it clear that it is. In her paper published in the Voluntary Euthanasia Society of Scotland newspaper in April 1996 she described the Bland judgment that allowed the withdrawal of treatment, including food and fluid, to end the lives of those in a persistent vegetative state, as a form of involuntary euthanasia. Perhaps not so curiously, Professor McLean was a member of the drafting committee of the British Medical Association guidelines on withholding and withdrawing life-prolonging medical treatment that advocated the withdrawal of treatment along the lines adopted in the Bill.
Let us be clear about this: in justifying such treatment we have seen any number of words and phrases being given new meanings. One, which has already been mentioned, is the term "futile treatment". I would not want to see any patient, and certainly no patient that I loved, having futile treatment inflicted on them. To me, that means giving people treatment that can no longer help them, such as pumping a patient full of antibiotics when they are drawing close to death or operating on a cancer patient when there is no hope of curing or relieving the disease, but food and fluid, however delivered, have never been thought of as a treatment to cure a stroke, Alzheimer's disease, Hodgkin's disease or anything else. Such an idea is patent utter nonsense.
Food and fluid are, as the hon. Lady said, basic care that relieves hunger and thirst. What she did not say is that they prevent a patient from dying from starvation and dehydration. However, in some cases, such as advanced cases of Alzheimer's disease, assisted food and fluid are being described as futile treatment which can be withdrawn, when in fact what is meant is that the patients are considered to be futile—in other words, people who are not worth feeding. If Members of the House checked with the Disability Rights Commission they would find that an increasing number of disabled people are becoming more and more frightened of being admitted to hospital. With the growing ethos that some patients are not worth treating—that they are futile—that is hardly surprising, and it should be brought to a halt by ensuring that the definition of treatment in the Bill excludes food and fluid, however delivered.
Another aspect of the Bill that I find frightening is that relating to the definition of "best interests". According to the Bill, this refers to the patient's wishes or, even worse, what somebody else considers would be the patient's wishes. Nowhere does the Bill refer to health or life, and it would allow decisions to be made that are clearly contrary to the patient's medical or clinical best interests. It is interesting that Scotland's Act, which is not without flaws, is a vast improvement on the Bill before us. The Adults with Incapacity (Scotland) Act 2000 refers to the patient's benefit. Why, I ask the Minister, can we not have the same simple and straightforward definition in the Bill?
The Scottish Act also differs greatly from the Bill in the matter of legally binding advance directives. The Act makes no reference whatever to such directives. As far as Scotland is concerned, they simply do not exist—yet for some unknown reason they are to be foisted on the English and Welsh public. That is even more surprising in view of the fact that in 1994 the House of Lords Select Committee on Medical Ethics, which considered euthanasia, also examined in depth the whole issue of advance directives—or living wills, as they are popularly called. The Committee took into account not only the right of patients to indicate what they would like to happen in given circumstances, but the very real dangers of making living wills legally binding in statute law. In its report, it welcomed the concept of advance directives, but advised against their being made legally binding in statute law.
Apart from the fact that old and mentally incapacitated people could well be manipulated into signing a document, because no one wants to be a burden, there is the real danger, no matter how carefully the law is framed, of people not really having a clear understanding of what they are declaring. For example, most people imagine that patients who have suffered severe strokes will simply die if not treated, but that is not so. Some years ago, Professor Peter Millard, then professor of geriatrics at St. George's hospital in London and president of the British Geriatrics Society, explained to a meeting of MPs and peers that a high proportion of people survive; those affected, if they are not given vigorous treatment after the stroke through which they often regain the capacity to move and walk, simply become very crippled and will, in all probability, lead extremely painful and limited lives, which could be avoided through early treatment following the stroke. That type of problem is recognised by many doctors. In the biggest and most recent survey of doctors on the issue of euthanasia, more than 71 per cent. said that there were circumstances in which they would refuse to follow an advance directive. Their concerns mirror those of MPs who oppose some aspects of the Bill.
In the Scottish legislation, all reference to legally binding advance directives has been omitted. Whatever reason is given for that, I can tell the House that the Scottish National party has an official policy of opposing the concept of legally binding advance directives because of the dangers, and it was pretty obvious that the party was prepared to do battle if such a clause were included in the Scottish Bill. I return to the thorny questions of why in Scotland is the definition of "best interests" so much stronger, and why we are being saddled with legally binding advance directives, which for so long have been an objective of the euthanasia lobby in this country.
Does my hon. Friend not think that the problem is that the Government are refusing to face the implications of the Bland judgment and of what is now happening in hospitals up and down the country? The difference between "benefit" and "best interests" is dramatic: use of "best interests" leaves the provision wide open to be defined by those who have power, rather than actually in the best interests of the patient in question.
My right hon. Friend made a strong speech earlier and he makes a pertinent point now. I am sure that those who read the debate in Hansard will agree with that point, as do I.
With hon. Members on both sides of the House I have been involved in the pro-life fight in Parliament for many years. One of the most common tactics that we have encountered has been the fight to make changes to the law because of complaints about differences between England and Scotland. For example, in 1991 the BMA claimed that in Scotland it was able to apply to the procurator fiscal to obtain permission to withdraw treatment from patients in a persistent vegetative state, and that it was ridiculous to have such a difference in law between the two countries. However, when inquiries were made with the Lord Advocate's Department in Scotland, we learned that no such process existed and that, in any case, the procurator fiscal would not be allowed to make such a decision. The story does not end there. Shortly after the Bland judgment was given, a campaign began in Scotland claiming that in England applications could be made to the court to have treatment, including food and fluid, withdrawn from PVS patients—and, yes, it was ridiculous to have one law for England and Wales and another for Scotland. Not long after, the Law hospital case in Scotland resulted in a verdict similar to the one in the Bland case. I can envisage precisely the same scenario being played out around the definition of "best interests", with the Scots being told that patients' wishes are being denied and that they are being denied an opportunity to choose because advance directives are not to be made legally binding.
I warn the House that we are dealing with an ultra-cynical lobby, which will not stop with the Mental Capacity Bill. It will see the Bill as an opening of the door to legalised euthanasia by commission. If we are to retain the smallest vestige of respect for human life, we must not allow the Bill to pass without radical amendments to prevent the introduction through the back door of euthanasia by omission. Let me make it clear that I support certain sections of the Bill. Throughout, the all-party pro-life group has supported the principle of creating a statutory framework to protect those who lack mental capacity. Earlier, I had thought to abstain in any vote this evening, but having heard some of the speeches, I have concluded that parts of the Bill are inherently wicked and I have no path to take other than that of opposing it. I trust that in Committee, those radical amendments to which I referred are made. If they are, no one will be more pleased than I will.
I am concerned. I am following four measured contributions from hon. Members on both sides of the House, all of whom spoke coherently and cogently, whose interpretations of the Bill are not the same as mine. My hon. Friend Mrs. Curtis-Thomas recounted her heart-rending personal story—heart-rending, but in many ways uplifting, when she spoke of the positive impact of her mother's illness. I am deeply concerned that the legislation can be interpreted in such different ways, and I say to my hon. Friend the Minister that he must examine that problem.
I asked the Minister at the start of his speech to confirm that the Bill will not introduce euthanasia. I accept what he said, as do the Front-Bench spokesmen for the main Opposition parties, but, like many hon. Members, I have been receiving correspondence from constituents who do not accept that, and this evening I have listened to speeches from MPs who do not accept it.The Bill has been amended. Clause 58 has been inserted to make it clear that the Bill will not introduce euthanasia—and it does make it clear to me, yet still we have heard about individuals who do not accept that. The message for the Government has to be that the issue must be taken away and examined. All legislation must be clear in its purpose and intent, but this Bill more than any other has to be very clear indeed.
Having had the privilege of serving on the Joint Committee that scrutinised the draft Bill, I fully support the aims of the legislation. I see it as helping the 2 million people about whom the Making Decisions Alliance talks. There are many people who have been campaigning for many years to get legislation in the form of the Bill on the statute book. We should use our best endeavours to protect those people who lack capacity to make decisions. We also need to give reassurances to those who have genuine concerns.
I am grateful to my hon. Friend for the clarity with which she sets out the position. Does she agree with me that all doctors take the Hippocratic oath, which is an important oath, and all doctors have a duty of care? Any doctor seeking to end life would be in breach of that duty of care and would have carefully to consider the risk of charges of manslaughter and gross negligence. My hon. Friend will have heard hon. Members who take a strong position on the Bland decision. She will have heard me saying that the Bill does not seek to alter common law. In the Bland case—I was involved in many cases following Bland in my early legal career—and in others, extremely difficult decisions are made around personal autonomy, quality of life and dignity of life in the end stages. Hon. Members will have strong opinions on that. That, however, is the issue that remains between us.
I thank the Minister for his intervention. I agree with his statements about the role of the doctor. Members of the Joint Committee have received assurances that we are not changing the law. Common law has already been set in respect of advance statements and so-called living wills with regard to treatment through artificial nutrition and hydration.
I still receive letters on these matters. I am speaking against euthanasia. I would not vote for a Bill that brought in euthanasia. Yet my constituents are still writing to me and they become increasingly angry when I say that the Bill is not about euthanasia. They say to me, "Yes, it is." The Minister has a difficult job to do.
Has not the hon. Lady touched on the entire problem? Given that there is such widely differing interpretation of the Bill, to which she has quite rightly referred, surely we need to ensure that the Bill is so clear that there cannot be differing interpretations. That is clearly not where we are at at present.
I shall make some suggestions later. During the passage of the Bill, the Government will have to consider some amendments, especially in the light of the more recent court cases. When the Joint Committee was sitting a year ago the situation was different, and hon. Members have referred to the Burke case. We have also had the case of the little baby. Although the Bill does not affect children there is the interface with the Children Act 1989. Hon. Members have talked about 16 and 17-year-olds, but we know that a piece of legislation that deals with people who lack capacity may also have an impact on other pieces of legislation. That being so, it is important that the Bill is clarified during its passage through the House.
The Bill refers to the individual being protected by the letter P. P does not stand for patient; it stands for person. The Bill is about real people living real lives in the community, few of whom will be patients in hospital. I remember that in the course of our deliberations as members of the Joint Committee, we took oral evidence from Catholic bishops and Catholic doctors. A lawyer represented Catholic doctors. In his evidence he was constantly referring to patients, and I interrupted him. I asked whether he would recognise that this draft legislation, as it was then, was about people, most of whom are living their lives in the community in their own homes, care homes or nursing homes, but not in hospital. He said that I had identified a lacuna in existing legislation. That is why we are talking about these matters. That gap in legislation to protect vulnerable people in the community has been there for many years. That is why so many representatives of the disability groups want us to consider the Bill, protect people who lack capacity and consider the best interests of those who have varying capacity.
Hon. Members have talked about the proposed legislation opening the way to many judicial challenges. I see the Bill as opening the way for a change of attitude towards people who lack capacity, so that instead of assuming that somebody, because of their illness, mental state or disability, cannot make decisions, we will assume that they can. It will have to be proved that they lack capacity before someone else can make a decision on their behalf. That will be a major job for government. The Bill is about changing attitudes as much as about changing the law.
In a previous incarnation, prior to 1997, I chaired Lancashire's social services committee, and I met many people with a range of disabilities. The one thing that they said to me was, "Listen to us. Listen to our voice." Interestingly, they would sometimes say, "Don't listen to our parents or to our professional carers, listen to us." That will be a key to the proposed legislation.
Does my hon. Friend agree that fundamental to the whole process is the need to ensure that where people have capacity, although they may lack capacity for certain decisions, they are empowered to make decisions and to have that capacity recognised?
I agree entirely. My hon. Friend's question brings me on to an issue that I want to explore in a little more detail, and that is advocacy services. I am the president of Blackpool Advocacy. When I was a Lancashire county councillor and chaired the social services committee, I set up the Lancashire advocacy development service. I believe passionately that individuals, who for whatever reason cannot express themselves, need to be heard. When the Joint Committee sat, we explored in great detail the issue of advocacy.
Advocacy can help at so many different levels, and not just when there is a serious dispute. If advocacy is introduced in a preventive way at the beginning, it can sort out many problems. When we were debating independent advocacy as members of the Joint Committee it was clear that people had different ideas about what advocacy meant. Some members had a legal interpretation of it. Others saw existing advocacy services as being there only to represent the interests of the local social services department, and queried their independence.
As someone who has been deeply involved with Blackpool advocacy services, I recognise their independence and professionalism and see how they have given a voice to so many people who cannot speak for themselves. They have encouraged those people to speak for themselves. They have engaged with professionals who have cared for individuals and have ensured that the right decision is made on their behalf.
There will be an annual general meeting in a couple of weeks' time, and I have been swotting up on the work that has been done during the past year. Those involved have even facilitated the marriage of two couples who have learning disability. Their parents did not want them to get married, their carers did not want them to get married and social services did not want them to get married. The advocacy service came in and listened to these people. It was convinced that marriage was what they wanted. They needed a package of support to help them to do that. Advocacy services can be vital.
I am concerned about the appointment of independent consultees, which is set out in clause 34. I am not convinced that the independent consultees, as outlined in the Bill, will fulfil the role that independent advocacy services provide. I am not sure whether the Bill should specify in such detail the times at which the independent consultees should intervene. I know from personal experience that there needs to be flexibility in the system.
Will the Minister look again at the role of the independent consultees? Will they be rivals to the existing advocacy services? Who will fund them? Who will train them? Where will they be recruited from? Why are they to be consultees and not advocates? I hope that the Minister will forgive me for pointing out that he said that an independent consultee would be brought in if the person without capacity did not have family or friends to represent them. Advocacy services get involved even when people do have family and friends, because the family and friends do not always agree with the person being represented. I must make it clear that I am not undermining the huge role that informal carers play in our society. They take on enormous responsibilities, but sometimes what they want for their adult son or daughter is not what that adult son or daughter wants. A properly trained, independent advocate can be of enormous help in such circumstances. I therefore ask my hon. Friend to look again at the role of independent advocacy.
Is it not the case that an independent consultee would act in the person's best interests, whereas an advocate helps the person to express their own wishes and feelings, which might not be what some people would deem to be in their best interests? They therefore play a completely different role.
My hon. Friend makes a fascinating point, which takes us back to a point made by the Minister earlier. My hon. Friend and I could make an unwise decision, and people could say, "Why did they do that? I don't agree with them." We have to recognise that the individuals covered by the Bill will also sometimes make unwise decisions. The independent advocacy service might well simply say that, although it might seem unwise to everyone else in the room, Mr. X—or P, in the terminology of the Bill—actually wants to make that decision. We have to allow them to make unwise decisions.
My hon. Friend has highlighted the difference between advocates and independent consultees, whose role seems to be to say what is in the best interests of the individual. Such details should be explored at a later stage, but I worry that clause 34(6)(a) says that an independent consultee
"may interview in private the person in relation to whom he has been asked for advice".
I would definitely want them to interview the person in private. I remain convinced that independent advocacy services have a vital role to play, and I hope that the Minister will re-examine the Joint Committee's recommendation that provisions similar to those in section 2 of the Health and Social Care Act 2001 be considered for inclusion in the Bill.
Ninety per cent. of the Bill is excellent. It provides support and safeguards for vulnerable people in the community, but there are one or two areas that the Government need to look at. I have mentioned euthanasia, and we need to consider how the Burke ruling affects the legislation, and whether there are more ways in which the Government can tighten up the wording to ensure that there is no confusion as to their intentions.
I am pleased that the Government have tightened up the provisions on advance directives in the way that the Joint Committee suggested. I have corresponded with Lord Filkin on this matter, and I was reassured by his reply, which stated:
"The Code of Practice will recommend that advance decisions should be made in writing and witnessed by someone independent, discussed with the health care professional and regularly reviewed and updated."
When a person with a degenerating condition is first told of their illness, they could be so horrified by the prospect of approaching the end of their life that they might make an advance directive without properly thinking through the consequences. They need to seek professional advice on health care in such circumstances, and to review it from time to time. Amazing medical advances are being made, which individuals cannot anticipate, but which they might need to take into account.
Research has been mentioned in the debate, and it is an issue that the Joint Committee looked at very carefully. Mr. Boswell talked about individuals being offered up for research. That conjures up nightmarish images for me; I have to say that, when the Joint Committee was considering this matter, I was reminded of Frankenstein images. We received compelling evidence from a variety of people, however, and it was suggested that research into certain conditions can simply involve observing an individual. It does not have to involve anything invasive. We also received assurances about the role of the medical ethics committee. However, the Government will have to look very carefully at the implications of the clauses dealing with this issue.
I am grateful to the hon. Lady for giving way, not least because I fear that I did not pay her the same courtesy during my remarks. Will she accept from me, in good faith, that my concern here is about the principle of how these things are to be done and, above all, the basis on which it is to be determined whether they are in the best interests of the individual? The Minister might want to look carefully at the distinction between an activity that is broadly neutral in terms of a patient's welfare—as observation would be—and an invasive action, which would be quite unacceptable unless it could be linked to a specific benefit to the patient concerned.
The hon. Gentleman makes an interesting point, which will need to be explored in the context of remarks made by some of his colleagues about certain existing practices. We have been debating this issue as though it were in a vacuum, but it is not. Doctors are doing certain things now. The courts are making decisions on them now. It is about time that we, as legislators and parliamentarians, discussed the issue. All sorts of things are happening that many hon. Members are entirely unaware of.
I have already mentioned the interaction of the Bill with the provisions of the Children Act 1989, and we need to look at those issues. My final point concerns resources. The Bill will deal mainly with people in the community, and it will concern not only their informal carers but professional carers. There will therefore be resource implications for social services departments and for people in the independent sector who provide social care. An extensive range of training programmes will therefore need to be set up. A general awareness of the issues dealt with in the Bill will also need to be raised, and I hope that that will be one of the positive outcomes of the Bill.
This is an important piece of legislation, and we really must get it right. A lot of people will be affected by it, and we cannot afford to get it wrong. I look forward to having detailed debates on the issues in Committee, so that we can reassure the people who are worried about them, and say to those who have campaigned for the Bill for years that we are at last listening to them.
Order. The time available for this debate is not infinite, so perhaps hon. Members will have regard to the interests of their colleagues when making their contributions.
I was pleased to serve on the Scrutiny Committee for this Bill, the thrust of which I broadly support. I support particularly the principles outlined at the beginning of the Bill and the assumption of capacity. Like others, however, I have concerns about the Bill, to which I hope Ministers will listen, and I hope that they will be prepared to amend it in Committee.
The Committee recommended that the Government consider the implications of independent advocacy, which Mrs. Humble, a fellow Committee member, has just raised. I support her concerns because I do not share the Government's view that there is already adequate independent advocacy to meet the challenge of the Bill. If the Bill is to work, it must mean more opportunity for more people to access independent advocacy, which must be of the best quality, from people in sufficient numbers, to deal with casework in a timely fashion. All the logistical implications of the Bill, in terms of the demand for independent advocacy, can only be met if the Government clearly identify that more resources will be directed throughout the country to provide advocacy services for people who need them.
I declare an interest: the Making Decisions Alliance has been mentioned many times in this debate, and I am a vice-president of two charities that are part of the MDA—the Alzheimer's Society and the National Autistic Society. In the Scrutiny Committee, I was particularly concerned about autism—the House will be aware of my interest in that area—and the elderly, especially those who develop appalling degenerative conditions in old age.
Today's debate has highlighted legitimate concerns, especially in relation to euthanasia and so-called living wills. In the Scrutiny Committee, it was our understanding that the Government had made a commitment that this legislation in no way opened the gate to any practices that are not covered by existing UK law, which makes euthanasia and assisted dying illegal. For that reason, when the Government responded to the Committee's report, they added clause 58 to the Bill, which is different from the draft Bill, to make that crystal clear. Like the hon. Member for Blackpool, North and Fleetwood, however, I have concerns, because while there may be a moral dilemma in relation to the more high-profile cases that have gone to court—of people who have had severe accidents and been struck down in mid-life, but who have been kept alive in a so-called vegetative state—in some ways, identifying whether those might be outwith the Bill's scope is easier than identifying whether the many thousands of cases of people who simply reach the end of their natural life would be caught within its scope.
We heard of a moving case from Mrs. Curtis-Thomas, and although I shall not give a first-hand account, I had the experience, during the course of the Scrutiny Committee, of my mother dying over a period of four months in hospital. I was therefore dealing with a not dissimilar case. I am concerned about some of the conditions in our general hospitals in relation to the way in which the elderly are treated. I am not suggesting that they do not provide the treatment—if I may use that word—that is necessary; I am talking about general nursing care, which really comes into play when people end their natural lives.
Does my hon. Friend agree, for example, that there is real concern, and some evidence of significant problems, in relation to nutrition and feeding? I am not talking about feeding by artificial means, but about ensuring that the food made available is palatable to and consumed by elderly patients, and not merely taken away when they have not consumed it?
Yes. My precise concern is that this Bill does not lead to further such cases.
It is not always a question of the nursing staff. I have had experience of five elderly patients in the past 10 years who reached the end of their lives but spent considerable time in hospital before the end came. I will not regale the House with the individual cases, but they are a matter of concern. I remember visiting a 91-year-old aunt, who was a spinster so she had no children, and asking the nurse whether she had had anything to eat. The nurse said to me, "Oh, no, she's given up eating. She waved me away when I tried to feed her." I asked her what she was trying to feed her, and the food was obviously inappropriate. In the case of my mother, however, although I was critical of the way in which she was treated in the general hospital, she spent the last two months of her life in the Wokingham hospital—I name it because the nursing standards there were superb—where her food went from mashed, to pureed, to liquid.
I add as a caveat—the trouble with legislation is that it catches all—that when people reach the end of their lives, we must recognise that. I would not wish legislation to be changed in such a way that doctors suddenly felt that they had to intervene artificially, merely to preserve life that was clearly coming to a natural and, one would hope, peaceful end. People who die at home usually die without having taken either nutrition or fluids in the last 24 hours of their life, because the swallowing mechanism disappears. We need to make sure that whatever changes the Minister might make in Committee to deal with some real concerns, she does not go too far the other way so that people do not die peacefully and quietly at home.
I had an opportunity to spend a lot of time on the draft Bill in the Scrutiny Committee, and I have put in a bid to the whips to be amenable to me serving on the Standing Committee, as I want to pursue some of those matters in more detail. In the brief time allowed to me, however, I want to raise the question of the Bournewood judgment in the European Court of Human Rights on
To summarise, the case was of an adult man living with paid carers. He was taken to a psychiatric hospital, which he was not allowed to leave, and remained there for five months. He was autistic and deemed to be mentally incapable of consenting to treatment. The medical profession, in treating or dealing with him, did not regard the paid carers as necessarily the people who could be helpful in deciding how his case should proceed, when of course they were the very people who knew more about him than anyone else. They could have advised the doctors, and the doctors should have listened to them. That was not the case, however, and having exhausted the courts in this country, they eventually took the case to the European Court of Human Rights.
One of the difficulties with the Bournewood case is that it should not be possible for a hospital to detain somebody who is compliant but incapacitated, and then ignore and ostracise the people in that person's life who could have not only given advice to the professionals dealing with him, but been of support to the gentleman while he was in hospital. There were long delays before he was allowed access to them. When the Committee took evidence, the Minister of State, who is in her place, while talking about the safeguards of nominated persons, said that she expected that carers would be the nominated persons. The carers in this case immediately wrote to me and quoted what she had said during that evidence-taking session, saying that they were not so safeguarded.
There is, therefore, genuine concern—especially now that we have heard the Bournewood judgment from the European Court of Human Rights—that, as the Bill stands, the Bournewood gap would not be closed but would be wider than ever. It is one of the Committee's recommendations to the Government that they should ensure that the Bill closes the Bournewood gap.
I realise that we are considering someone who was admitted to a mental health hospital and that a Mental Health Bill exists as well as the measure that we are discussing. I am a member of the Scrutiny Committee for the Mental Health Bill, and there is a genuine read-across between the measures. Dr. Iddon mentioned the Law Society's suggestion that the two Bills should run in tandem. However, when we read the draft Mental Health Bill, the Institute of Psychiatry said that the Mental Capacity Bill should be on the statute book before we dealt with the Mental Health Bill.
I therefore hope that the Minister understands, especially in the context of the Bournewood judgment, that we have to get the matter right in the Mental Capacity Bill because there is another Bill that will increase the medical profession's powers to detain people for an unlimited period. Getting it right in the Bill that we are considering is important not only for the people that it will affect, but for getting the next measure right.
Does my hon. Friend agree that one of the concerns is that the Mental Capacity Bill will not have the same safeguards as those that normally exist in mental health legislation, and that people in the Bournewood situation might therefore be at a disadvantage compared with those who are compulsorily detained?
Yes, indeed. That is why we want to ensure that the Bill is right, and it is the reason for my asking the Under-Secretary of State for Constitutional Affairs whether he would examine the matter before the Bill reached Standing Committee, and whether the Committee would consider carefully the amendments that need to be made in the light of the Bournewood judgment. That is important to me. I would not dream of supporting a Bill that did not close the Bournewood gap because it would affect far too many people—not only those on the autistic spectrum, but others.
I want to make only one more point. I hope that I shall have more opportunity to contribute in Standing Committee if I am successful in getting on to it. I want to consider medical research. The Joint Committee's report to the Government supported, with some caveats, the opportunity for research to be conducted on people who lack capacity. As the Bill is currently worded, it would be for third parties to authorise such research. It was not the unanimous decision of the Committee; we were not all content with that. Many reservations were expressed, including by me. Lord Rix expressed reservations in another place. As hon. Members know, he wears his Mencap hat on such occasions. It is not for me to speak for him, but I would not like hon. Members to believe that every member of the Committee was content with the provision on medical research.
I am open to some persuasion about non-invasive measures. For example, if research is simply a matter of keeping a database of patient histories, I perceive some advantage in it. However, invasive research, including brain scans, perhaps goes too far. I should like the Minister to consider reverting to the subject in some detail in Committee. Despite what the Government have done in the Bill, provisions need to be tightened much more if they are not to give an open sesame to specific types of research.
People say that such research goes on all the time and that we do not know about it, but my goodness, let us consider what happens when we find out about it. One has only to remember the pathology cases that have been discovered in various hospitals in recent years, unbeknown to even the next of kin. Perhaps it is laudable for us to decide, while we have capacity, which we may lose later, that we are happy to be part of some form of experimentation, but that is as far as I would want to go without much tighter provision than that currently in the Bill.
I support the Bill's broad principles but, like other hon. Members, I believe that if we do not get some matters right, my view of it will be overturned. I want it to work and I am willing to work with the Government to make it work on those issues about which I am genuinely concerned. I shall abstain tonight on Second Reading. I hope that once the Bill has been through its other stages, I shall feel comfortable about supporting it on Third Reading.
As always, I was impressed by Mrs. Browning, but I was a little surprised by her final sentence. Given the questions that she raised in the light of her experience and commitment, which is beyond question, I was surprised that she feels that the House should not give the Bill a Second Reading thus allowing us to move on to deal with the issues that she and other hon. Members raised. For example, Mr. Duncan Smith asked several pertinent questions—there is no reason why they should not be asked. However, given that we have waited 15 years to deal with such issues, is not now the time to tackle them?
Today's debate has impressed me on the whole, but I am disappointed that we have not focused all that much on disability, which this important measure addresses. I declare an interest. With Lord Rix, I am the joint chair of the all-party group on learning disability. I acknowledge that Mr. Boswell mentioned learning disabilities, and that Mr. Burstow spoke about them especially effectively. His speech focused on learning disabilities, carers and issues that are profoundly relevant. Indeed, they are the very issues that led me to develop an interest in the Bill.
I hope that the hon. Member for Sutton and Cheam will forgive me for repeating his point, but he was right when he said that, were the Bill about assisted suicide and were some of the claims about its main intentions true, he could not support it. That is my view. I do not believe that the Under-Secretary of State for Constitutional Affairs, who made an eloquent and well-informed opening speech, is so Machiavellian as to think, "I shall introduce a measure called the Mental Capacity or Incapacity Bill to con people into supporting euthanasia." It is right to make that point at an early stage in my comments.
I support much of what the right hon. Gentleman says, which ties in with the comments of Mrs. Humble. However, because the Bill contains much that is good and that many hon. Members of all parties support, it is that much more important for the Under-Secretary to approach the Committee with an open mind, thus reassuring those who are deeply worried about several aspects of the Bill, especially definition, that have not been resolved, so that, on Third Reading, the House is united around an excellent measure.
I agree with the hon. Gentleman and I hope that he realises, as I develop my points, that I support the main thrust of his remarks.
It would be a tragedy if a good Bill, which I believe the measure to be, based on 15 years of discussion and the appointment of a scrutiny Committee of all parties and both Houses, were simply to be dismissed because of fears which, I am convinced, are unfounded. That does not mean that the fears have not been expressed; I will come to that in a moment. What we are dealing with, and what I hope to promote, is a Bill that has important principles and that is long overdue. The Minister—I am sure that colleagues on the Front Bench are listening—knows that, if the Bill is given a Second Reading, that represents a very early stage in the parliamentary process. I believe—I do not think that I need to plead for this response—that, in Committee, the points that have been made tonight, as well as other points that will be made in due course by hon. Members, the various voluntary organisations, carers, advocates and others, will be taken on board.
I will continue to argue for things that the House should recognise. I hope that the ministerial team responsible for the Bill will accept that, because of the perception of some members of the public, which has been clearly articulated by hon. Members, we may need to look at some aspects of the drafting of the Bill, not to alter the main thrust, but, for example, to clarify the point that the right hon. Member for Chingford and Woodford Green made about deputies and power of attorney. However, vital though the issue of euthanasia is, we should still deal with other crucial issues in the Bill. Later, I hope to turn to many of the equally genuine concerns in that respect. For example, I welcome what has been said about advocacy, not least by my hon. Friend Mrs. Humble.
If we are going to focus almost exclusively on euthanasia, and my views on that are clear—I could not ever possibly support such a measure and I do not believe that the House would—we are entitled to recall the strong views of the disability organisations and of the churches. I do not believe that Archbishop Peter Smith, for example, would have said that, in his view, euthanasia is not embraced in the Bill—I am not quoting him precisely but that was certainly his view—if he did not feel, as I do, that society has a responsibility, in order to avoid people being tempted with euthanasia or self-assisted suicide, to ensure that the quality of life of our most vulnerable people, especially those who need mental health services and who have learning disabilities, is improved. Otherwise, the temptation for euthanasia and the rest may become all the greater.
Reference has been made to the Scottish Act. I repeat the point that I made earlier. I take the view that, thus far, that Act is perhaps better than the Bill but it developed by way of evolution, the kind of evolution that the House has already committed itself to undertaking. It improved as it went on. The Scottish Executive and the Scottish Parliament listened to people and an important consensus emerged, the like of which I hope will be possible with this Bill.
I have listened to the debate carefully and, like other right hon. and hon. Members, I have listened to my constituents. It is widely known that in my constituency a large number of people are Catholics. Of those who have written to me, and I will not claim that it is a large number, most are Catholics or people from Christian traditions who have strong views on these matters. They know that I respect those views.
One constituent sent me two letters. She happens to be a carer and is held in enormous esteem by my constituents. I refer to her as an indication of how opinions are changing not only outside the House but I hope, in due course, when we have that vital continual scrutiny, here.
My constituent is a young woman whose mother experiences Alzheimer's. In the first letter, she said:
"I have supported" the pro-life
"campaign, not because I am a Catholic but because of my own worm's eye view of what is going on in health care. I have now heard four separate accounts of people being left to die from friends of mine; they include a nurse, a social worker and a volunteer in a nursing home. Three of them were by removing food and water in hospital. None of them were authorised by relatives or the patient."
We discussed that issue at length. I do not think that I was alone in assuring her that, far from the Bill ignoring those vital points, it takes them on board. It encourages people to spot abuses and to remove them, particularly in cases such as those to which she referred. We had a long discussion on Saturday—incidentally, it was not a one-way discussion; her views and criticisms of care in the community and how the health service is administered were clearly expressed and I would do an injustice to her if I did not make that plain—but on Saturday evening she put the second letter through my letter box. I remind the House what I said about public opinion and where I hope we are going in this matter. In it, she said:
"I think I should come clean and tell you that I was the initiator of the postcard campaign that you were on the receiving end of at this time last year. I'm sorry for any hassle it caused you; this I pursued on the advice" that a pro-life organisation
"put on its website . . . I feel doubly awful about it because you have been so willing to listen to my views on this and other matters. It won't happen again."
There was no need whatever for her to apologise. As I have said, her views have been reflected in the debate, but what is clear is that I do not expect criticism from that constituent and many others when I explain that I voted for Second Reading, as I intend to do for the reasons that I have given: further scrutiny, a commitment to the rights of people with disabilities, especially learning disabilities, and an improvement in their standard of living. That means that I, too, in common with my hon. Friend the Member for Blackpool, North and Fleetwood, will want to say something about advocacy.
The issue of independent advocacy is one on which I hope the Government are still very much in listening mode. As the Minister will know, the draft Bill was not popular with many people with a learning disability. Some learning disability groups said that it was so bad that it should be scrapped completely. Other groups said that there was still an opportunity to revise and to improve it. All learning disability groups agreed that the final Bill had to put much greater emphasis on independent advocacy.
Although I warmly welcome the inroads that the Government have made on that issue in terms of independent consultees, there is still concern among learning disability groups and others that the provisions on independent consultees have been brought forward principally to plug the Bournewood gap as cheaply as possible, rather than being a genuine attempt to provide an independent advocate for as many vulnerable people as possible who want one. I hope, and I have every reason to feel, that there will be a response and that Ministers will feel that the Bill is an opportunity to move advocacy forward. Some say, as the right hon. Member for Chingford and Woodford Green seemed to do, that such decisions ought not to be left to one person. That is probably right, but it is in the nature of things that a large number of people—medical professionals, advocates, families and carers—are very much involved in trying to reach the right decision for those with mental incapacity and, above all, in trying to respect their rights as the people and individuals whom they of course continue to be.
We were asked to be brief, Mr. Deputy Speaker, so I shall conclude on this point. As the Bill makes its way through this House and, hopefully, through another place, it is important that we listen not just to Members of both Houses, but to the individuals outside them. I end by referring not to the important organisations that support the Bill, and which are not persuaded by the argument that it represents euthanasia, but by mentioning those who regard it as real progress for people who have suffered far too much for far too long. One man with experience of schizophrenia, and who was in the early stages of dementia, was reported to me as saying that this is a Bill of rights for him and for people like him. He feels that he will be at the heart of every decision made, and that the Bill is an indication of the care and treatment that society seeks to provide. If we end up with an Act that reflects the aspirations of that man and of the hundreds of thousands more like him, we will indeed have achieved a great deal, and the effort made in this House and in the other place will have been worth it.
As these debates go into their fourth or fifth hour, one sometimes wonders whether there is anything new worth saying and whether such discussion is achieving anything. However, the defining moment of this debate was when Mrs. Curtis-Thomas spoke. Hers was an emotional speech, but it was powerful precisely because it was delivered from the heart and dealt with her personal experience. It made the fundamental point that needs to be made in this debate.
Mr. Clarke is right to say that the Minister is acting entirely in good faith, and of course I believe that he is. He doubtless does not want to introduce a Bill that countenances euthanasia, but one only had to listen to the hon. Member for Crosby to realise that if this were a genuine free vote and if every Member of Parliament had been present while she was speaking, the Bill would have died at that very moment, and no amount of artificial respiration could have brought it back to life. She made a very simple point. She talked about her mother, who had suffered a massive stroke and did not want to go through that agony again. She made an advance directive, but when the point came, she blinked the message that she wanted to live. That is what concerns us, and it is why so many of us are determined that there should be a substantial debate on this Bill, so that we can deal with the issues.
What matters is not what is in the mind of the Minister, or the fact that this issue has been debated for 15 years; what matters is that the Bill does not spell out what is in the best interests of the patient. It states that its purpose is indeed to serve the patient's "best interests", but the definition given is woefully deficient. It does not include the relief of pain and, most importantly in terms of practical consequences, it fails to define, or to require, the provision of basic care. As my right hon. Friend Mr. Duncan Smith said, the elephant in this debate is the Bland judgment. We cannot ignore it—it is there. If the Bill is to become a worthwhile Act and to carry out the stated will of Parliament, which is that we are opposed to euthanasia, it has to address the fundamental point of the Bland case. Following that case, basic care—the feeding and watering of a patient, albeit by tube—was redefined as medical treatment, thereby enabling the said medical treatment to be withheld or withdrawn, quite legally, without consulting the patient.
In fact, the Bill goes much further than the Bland judgment. Such a definition can now be achieved for any treatment without a court order, but according to a decision laid down in the past, in a document known as a living will, although I would call it a "dying" will. There is no point in denying that if the Bill is passed in its current form, it will be perfectly legal—as the hon. Member for Crosby pointed out in simple and powerful terms—for someone to instruct a doctor to starve or to dehydrate their semi-conscious mother to death, provided that she has previously given written consent to the withdrawal or withholding of medical treatment, or provided that she has appointed them as her attorney. That is undeniable. If that person assaults her, they will be arrested. If they get her doctor to pull out her feeding tubes, that will be lawful, if they have this new lasting power of attorney.
Nobody knows what was going on in the mind of Dr. Shipman. Everybody assumes that he was evil, but perhaps he felt that he was assisting elderly people out of their misery. We do not know. But the point remains that it will be legal to do such things.
We are told that the Bill is about enhancing patient autonomy. Really? Can we be sure of that? The underlying principle is the assumption made so often in the modern world: that the hastening of death is almost always in the best interests of a patient, once their quality of life has deteriorated to a certain level. My basic premise is that I do not accept that. Even the Bill's supporters must accept that the contention that we as a society have a right to take such decisions about a human being is debatable. We have to address that issue.
Mention has been made of the Burke judgment and I need not repeat the arguments, but that judgment is there. The High Court judge, Mr. Justice Munby, challenged the guidance of the General Medical Council, which appeared to permit doctors to withdraw treatment—including food and fluid—from mentally incapacitated patients, regardless of their consent. He reminded us that the withdrawal of food and fluid from patients causes
"pain, discomfort and extreme distress".
We know from the personal experiences related to us today that that is entirely true. He also said that the guidance is unlawful under the European convention on human rights. I do not believe that the Minister has told us the whole story. Civil servants and others who assisted him in the Bill's drafting are seriously concerned about that judgment. Indeed, I am told that they are furiously working on a re-hash of the Bill as we speak. Yet we are told that proceedings in Committee must finish by the end of this month. We have to address these arguments.
Revealingly, for supporters of the Bill such as the Voluntary Euthanasia Society, which claims to have a neutral and impartial view and wishes only to give the "choice" of death or life to certain patients, the Bill in its current form does not appear to recognise the validity of "positive" advance directives, as I would want to do. Such directives require the giving of food and fluid with medical assistance. In the words of Shakespeare's "Measure For Measure", this, then, is "absolute for death". I believe sincerely that this Bill is part of a culture of death, and that we are on a slippery slope. People are prepared to play God because they believe that it is no longer in the best interests of a particular patient to survive. I passionately believe that that is a hugely dangerous contention. Once we start down that route, where will it stop?
I shall now say something that will be considered very controversial, and people will doubtless disagree with me. There may well have been people working in Germany before the second world war who believed that there were certain mental patients whose quality of life had deteriorated to such an extent that it was humane to put them out of their misery. Everyone in Europe now utterly deplores that programme. In fact, the German people brought that particular programme—though not, unfortunately, others—to a close. Some people sincerely believed that they were entitled to make such moral judgments, but I believe that once we go down the route of creating people—whether we call them attorneys or deputies, which are legal names, meaning nothing to the general public—who are able to make such judgments, we are creating a class of citizen with the power of life and death over us. That is not a path down which we should tread.
I am about to finish.
It is right to say that a fundamental duty should be placed on doctors. There may come a point where it is right and proper not to go piling on more and more medical treatment, but that should never extend to withholding the basic right to life, which is food and fluid. If we pass the Bill in its present form, I believe—despite the assurances of the Minister—that that will become increasingly common. I sincerely hope that we will vote on the Bill and I will personally vote against it.
In following Mr. Leigh, I want to say that the Bill is enormously important because it seeks to address the issue of capacity. It deals with how we should deal as a society with circumstances where people lack capacity and it is designed to do so better than we have so far.
I welcome the change in name from the Mental Incapacity to the Mental Capacity Bill, which stresses the positive side. The Bill must ensure that where people have capacity, they can make certain decisions, even though they lack the capacity to make other decisions. It is right to address concerns about issues of capacity. Anyone who has ever worked with or looked after people for whom capacity is a concern—either as a permanent feature of the person's abilities in life or where the person's faculties are deteriorating—knows that current legislation is complex and that there are considerable legal uncertainties. It is difficult to ensure that people are acting in the best interests of a person or indeed in a way that conforms to the person's view of how decisions should be made.
The Bill sets out some very important principles that recognise the need to support people who have difficulties relating to their capacity in order to make their own decisions whenever they can. One principle is that there must be an assumption of capacity. So often where we have worked with elderly people and those with learning or speech and communication difficulties, the assumption seems to be that they do not have capacity. We see that in our dealing with children and with adults—and we must stop making such assumptions. The Bill begins to pave the way for what my hon. Friend Mrs. Humble described as a change in attitude and a change in the way we work.
I agree with what my hon. Friend has said so far—that the Bill makes some important advances in the area of mental capacity—but does she agree that more work needs to be done to define exactly what "the best interests" are? Should there not be greater focus on the physical well-being of the patient defined in clinical terms rather than too much reliance on the wishes and beliefs of third parties who cannot possibly understand what physical well-being might be?
My hon. Friend invites me to discuss the issue that has predominated in the debate, but I do not really want to do so. I want to talk more specifically about people with learning disabilities who face ongoing issues about capacity in their day-to-day lives. I am not talking specifically about patients in hospital or circumstances where someone faces a life or death decision, because I believe that the Bill goes wider than that and poses important issues for us all to address.
I chair the all-party group "Voice", which works closely with the all-party group on learning disabilities. It looks particularly into how people with learning disabilities can have a voice and be protected from abuse or other negative aspects in their lives. It seeks to help them to exercise decision-making powers wherever possible. Issues of capacity may well be lifelong issues. It is good to see that the Bill focuses on support and how to empower people to make decisions.
However, in common with other hon. Members, I want to express my concern that the Bill makes no provision for advocacy. Without advocacy, people with learning disabilities are likely to have their feelings and views ignored by those who take decisions about their lives. The Bill rightly accepts that people may have some capacity to make some decisions, but not others. It also rightly acknowledges that some people may be able to indicate a preference, even if they cannot make a decision. Without an advocate, though, there are no safeguards in circumstances where there is a difference of opinion between the person who is said to lack capacity and the decision maker.
I am concerned that the Government are in danger of creating confusion by using the term "independent consultee". The Bill says that the function of the independent consultee is to give advice to the body making the decision about the person's best interests. Their view could well be different from that of the person concerned. Advocacy means something different: it means putting forward the person's views and wishes, whatever they are. The person who is advocate stands aside from their own view and their own expression of what they deem to be someone's best interests. That is not their role. They help the person to express their views and wishes and, crucially, they are there to ensure that those views and wishes are heard.
That view may be "unwise": it may not be what a group of other individuals—whether they be professionals, family members or other supporters—might collectively sit around and agree to be in the best interests of the person. Nevertheless, it is that person's view. An adult is surely entitled to their view, whether or not they have or lack capacity. At the very least, that view should be heard.
Clause 4 sets out the criteria for determining what is in someone's best interests, which includes permitting and encouraging
"the person to participate . . . as fully as possible".
Without advocacy, however, a person may be wrongly assessed as not being capable of making a decision or communicating in the decision-making process. Moving straight to consultation without advocacy is, in my view, missing out something enormously important.
Finally, I want to raise issues about the concept of reasonableness in clause 5 because that notion also creates problems. As long as someone reasonably believes that a person lacks capacity and as long as they reasonably believe their decision is in the best interests of the person, they can make whatever decision they like. If a person is said not to have capacity, how can the decision be challenged? Who will challenge the decision on the person's behalf? We are not talking only about major issues—the specific treatment and life or death issues that we have debated in detail today—but about day-to-day happenings that determine lifestyle. For example, medication or other treatment may need to be ongoing for the person to live a full life.
For too long in our society, adults with learning difficulties have been judged by what they cannot do rather than what they can do. Empowering them to do more is important. In my view, advocates are essential to ensure that those people's voices are heard and properly considered along with the voices of others such as professionals and carers. I therefore ask the Government to give more serious consideration to the issue of independent consultees and independent advocates. Without advocacy, the voices of people with learning difficulties will not be properly heard.
The Bill has three inextricably linked qualities: it is important and wanted, it is conceptually complex and it is capable of misrepresentation and possible misuse. In consequence, it is a Bill on which we must have a degree of surety. The mind of Parliament needs to be clear, or as clear as it can be in print. That may not, at the end of the day, be clear enough. I shall argue that we are not there yet. Critics of the Bill clearly still abound, despite much pre-legislative scrutiny. Supporters of the Bill have reservations about issues such as advocacy and the living will, and what actually goes into testaments that people make in advance. It is has also been mentioned that there are legislative opportunists who would subvert some of the purposes of the Bill.
Mature criticism of the Bill must begin with an understanding of the task that the Government have set about. To be fair, it is a monumental and enormously difficult task. We can appreciate that intellectually and see how fraught any attempt would be to wrap the law around the myriad complex and highly emotional situations that involve the issue of mental capacity.
I speak with some limited experience. Many decades ago, I worked in an old-fashioned mental hospital. I must surely be the only parliamentarian to have guided—I use the word advisedly—somebody into a padded cell; to have seen a straitjacket being used; and to have helped to administer electroconvulsive therapy. I can therefore say that I have some feeling for the issues.
No one disagrees with the Government about the need for statute law on the issue of mental capacity. No one is happy with the common law as it stands and, worse still, no one is happy with the common practice. People are also unhappy to leave the issue to the vagaries of judges.
The mentally incapacitated are, according to the Government, those of impaired mind. They form a spectrum from the comatose to the uncomprehending. Puzzlingly, according to the Bill, they also appear to include those incapable of communicating a decision. Such cases can theoretically fall outside both categories and I am not sure why they are mentioned specifically. However, assuming—it is a big assumption—that we can fairly and uncontentiously define what mental capacity amounts to, the big question is how we must then treat the mentally incapacitated.
There are two decent-looking ethical answers to that question. Both are given in the Bill and, indeed, by most benevolent and reflective people. One answer is that we should consult people's best interests and the other is that we should do as they would wish. Unhappily, they are not the same. Our view of a person's best interests can conflict with our view of their personal wishes. That is not true only for people with mental incapacity: it is true for all of us at all times. What is certainly and absolutely true is that if we have no knowledge of someone's wishes, we should act in their best interests. However, the Bill appears to say that expressed wishes can trump views about best interests, in the interests of personal autonomy, provided that those wishes are well grounded and well established and require nothing that an unimpaired individual could not fairly expect.
My problem is that although it is a moral truism to say that we must act in somebody's best interests, it is not intuitively obvious that we must always act on past wishes, especially if they conflict with views of current best interests. In fact, the legislation itself allows living wills and advance testaments to be overridden in certain circumstances, such as when a person's best interests are established to be otherwise. I suggest that a remedy to that would be to make advance directives and living wills of persuasive force rather than authoritative force. In that way, they could include richer content and positive instructions about care, treatment and feeding.
The crux of the matter is that the best interests of the mentally incapacitated—be they the dying or the mentally impaired—is not universally a matter of common agreement. I have yet to be satisfied that there is an objective test. By that, I mean a test that if applied by every judge and every authority would produce the same conclusions. We do not have such a test. We have some rules that might help everyone arrive at the same conclusions, but we have no guarantee that they would do so. That is why the legislation includes a device known as a lasting power of attorney. Uncertainty that people might not judge one's best interests right leads to a desire to express a preference for someone who is most likely to safeguard one's interests. However, that provokes the further objection that the situation could change and the position of the person with an LPA could be subject to challenge.
The Bill's solution to those nightmare conundrums is to allow all major decisions to be subject to review and challenge or to be hedged around with guidance and guarded by various kinds of regulation. It is felt that the courts will therefore be able to arrive effortlessly at a truly objective decision. However, I do not know how a court can come to a clear, uncontentious decision in case after case without clear uncontentious principles to follow.
Does the hon. Gentleman agree that an important subsidiary motive in the Bill is to protect the position of carers, family members or professionals who are doing their best in difficult circumstances? They should not be dragged up before the beak on charges of assault, battery or other intrusion into the interests of the person if they have taken reasonable steps. That objective is a fair one, although it may conflict with some of the other priorities.
That is a fair point. It is not easy for anybody to make a decision when someone is near death and the doctors say that some intervention—even the provision of food—is not helpful. I do not know how such a decision can be made simply and effortlessly. I do not know how if an LPA is challenged because it is felt that the attorney has lost the plot. That cannot always be easily decided.
I accept the Minister's point, but the decisions by the court of protection may depend on the judge and his or her values. In some cases, the evidence will be overwhelming and the judgment simple and straightforward. In other cases, much may depend on the individual values of judges. It is not the Bill's interests to allow much of the latter.
Like other hon. Members, I was greatly moved and—as someone else said—uplifted by the speech of my hon. Friend Mrs. Curtis-Thomas. It reminded us that we are talking not only about the law, but about deep, agonising moral dilemmas. It reminded me that I have been asked in the past to take a decision about the resuscitation of my father. On another occasion, I was asked whether I wanted one of my children to be taken off a life-support system. All of us, in different ways, have had to take dreadful decisions in circumstances for which we had had no preparation. We sought to work through them as best we could with the people who brought something to bear to that situation. We have to be humble in the way in which we talk about such things and take some care in doing so.
It is often said that the House of Commons legislates too hastily and repents at leisure. Whatever is said about this measure it cannot be said that Parliament has moved too hastily. I shall not run through the whole chronology, but we have had everything, starting in 1989 with an inquiry by the Law Commission. We have had seemingly endless consultation documents, Green Papers, White Papers, consultative forums and draft Bills—the whole bag of tricks. It is probably true to say that never in the history of this House has any measure been so exhaustively scrutinised before being finally dealt with.
On the whole, that is a good thing because the measure is important. Certainly, we could compare it with the Human Tissue Bill, which is a cognate matter, where the fact that it was not properly consulted on and did not have a draft Bill stage caused all kinds of problems, so that it had to go into cold storage for months and the Government had to rewrite parts of it. Whatever else the passage of this Bill does, it will vindicate a process of deliberative decision making that builds in consultation throughout.
I can see why both this Government and the previous Government were nervous about the issue. That is why the process has taken so long. The previous Government, having dipped their toe in the water, quickly took it out again. It took only a typically well-informed, balanced and temperate campaign by the Daily Mail, with cries of euthanasia, to lead the Government into thinking that it was not a good idea to proceed with their measure. It is to the credit of this Government that they have persevered, against all that. The cries are going up again, but the Government are persevering because they think the measure is worth delivering.
I was disappointed that Mr. Boswell, speaking for the Opposition, had a slight loss of nerve at the end of his speech when he told us what he intended to do about the Bill. However, I quite understand that the issues are complex and that there are people sitting behind him who cause him some difficulty.
After a process of so much time and intensity, one would have thought that the Bill would be universally welcomed. As we have heard today, the welcome has been almost but not entirely universal. Some people will not accept the inclusion of clauses relating to advance decisions on treatment. We are all receiving letters about that and they have been referred to frequently. I received a fairly representative one this morning. It states:
"As a practising Catholic and Christian citizen of this country I am greatly troubled by the prospect of the implications of this Bill. I would like to request that you consider these implications seriously and vote against the introduction of a law which would legalise the painful death of innocent people and also make it a legal requirement for doctors and nurses to comply with it . . . Millions of innocent babies have been slaughtered by abortion since the introduction of the Abortion Bill in 1967. That was a backward step for our country and for civilisation. Please don't let this further degeneration, of legally killing people at the other end of life, take hold."
That is one of the more temperate letters that I have received about the issue and it is from a good person. Indeed, all my constituents are good persons; they differ only in the degree of their goodness, but someone—some organisation—has told my constituent that that is what the Bill will do.
As gently as I can, I want to ask such organisations to think of their responsibility when telling elderly, vulnerable and infirm people, "This is what the state is going to do to you. This is what doctors and nurses are going to do to you." However much we may disagree about parts of the Bill, all of us have a huge responsibility to have the argument. On the whole, the House has done that today and it reflects the complexity and difficulty of taking any decisions on these matters.
Is it not possible that the cessation of nutrition and hydration could cause the pain, distress and extreme discomfort that my hon. Friend's constituent fears?
I am not suggesting for a second that the issues are not deeply important and complex. I have listened to all the exchanges today; they have been important. I simply object to an approach to such questions that produces the consequences to which I referred. That is not helpful to the argument and it is massively unhelpful to the people who are likely to be affected by some of our decisions.
If I can put the point in a rather indelicate way: God save us from the fundamentalists and the absolutists. They are the people whom we do not require in the argument, because they can help us least. People who think these matters are simple and that they can merely read the answers from a rulebook will not help us to get through a minefield of deeply complex issues. If anything comes out of our proceedings today, I hope that it will be in our understanding that these are complicated balancing judgments and that we do not need declamatory moral polemics.
I am sorry that Ann Winterton is not in the Chamber. She talked about people who disagreed with her as cynical and wicked. In her absence, I have to say to her that that is precisely the language we do not need to use about a measure such as the Bill. Such language is massively unhelpful and deeply damaging.
In some ways, the Bill is a rather modest proposal. Its ambition in the aspect that is causing the most difficulty is to codify existing case law provisions. That is what it does. Many Opposition Members who have taken exception to certain provisions are taking exception not to the codification so much as to the case law. They do not like the current position and the fact that we are codifying that position makes it worse for them. Their argument is with what we are doing already—in particular, in trying to extend rights to people with capacity with regard to the care and treatment that they will be entitled to ask for and to expect in conditions of incapacity. Indeed, I would ask that not only for them but also for myself. It is a balancing act. It is always a balancing act.
The hon. Gentleman is making a powerful contribution, all the more so because we have not had a huge opportunity to hear from Members who broadly support the Bill. Apart from the hon. Gentleman and one or two of his colleagues, they have not been present. Does he agree that criticising the current state of the law and the consequences of the Bland judgment is a perfectly legitimate standpoint for individuals to take? There are consequences of the Bland judgment that give people considerable concern, including the way in which it may have affected the care in hospital of the very elderly and terminally ill.
I am grateful to the hon. Gentleman for that intervention. I hope that I have not suggested for a second that such matters are not of concern. Indeed, part of my argument is that because they are of such concern, and such difficult concern, we must handle them appropriately. I am suggesting that certain ways of handling them are not appropriate. Happily, we have not seen a great deal of evidence of that today, but we have seen it in the way that people approach us.
As always on such occasions, our old friend the slippery slope has been cited. We are told that if we take one inch in a certain direction—even if it is the inch that codifies the existing position—dangerous doors will open on an abyss. Indeed, we have just heard from Mr. Leigh that the abyss—the slippery slope—is Nazi Germany. That is not a helpful way to approach a matter that requires complex balancing judgments.
In conclusion, the measure is a codifying one. It provides a framework for decision making on those matters. No doubt, there are issues that the Committee will have to explore further in detail but, as I think my hon. Friend Mrs. Humble pointed out, we should not assume that such decisions are not being taken already. Of course, they are. Doctors and judges are already taking them. What Parliament has to do after 15 years is to get in on the act. What Parliament has to do now is to set the framework, growing from the case law and consolidating the case law, because that is what Parliament is expected to do. Indeed, that is Parliament's role.
Does the hon. Gentleman accept that it is not necessarily Parliament's role to enshrine the existing case law if it believes that to be fundamentally wrong? It is our right to challenge that. It is good of him to mention the slippery slope. Let us forget the slippery slope for a second and stand where we are. Does he believe that it is right that the people whom he talks about are making decisions to withdraw fluid and food from someone? Is that a right decision to take? Does he think that Parliament should enshrine that or deal with it and end it?
As I have said, I believe that Parliament now rightly wants to consolidate a position that has developed through some desperately difficult case law. The time has come for Parliament to bring that together and to provide a secure framework. Not to do that would, frankly, be an abdication on the part of Parliament. So the idea that there is a default option—a do-nothing option—is a "Parliament leave the picture" option.
I will not give way again because I want to end.
Instead of slippery slopes, I would offer the alternative of gradual gradients. Gradual gradients say that we have to try carefully, intelligently and constructively to put a framework around some extremely complex decision-making issues. That is what Parliament has to do. As Dr. Pugh said, in a sense, it will always be a kind of muddle through a minefield, but at least we ought to muddle through as intelligently, rationally and sensitively as we possibly can, and I believe that that is what the Bill tries to do.
This has been a wonderful and remarkable debate. That is certainly not how I would describe every debate that I have listened to in the House. What a shame that many of those hon. Members who will come in at 10 o'clock tonight to vote Aye in the Division did not have the privilege of listening to the speech by Mrs. Curtis-Thomas. As my hon. Friend Mr. Leigh said, she articulated from her personal experience why many of us are deeply troubled by the Bill and unable to support it.
The Minister who opened the debate, is a splendid person. I had intended to abstain, but I am afraid that, having listened to his arguments, I have become increasingly worried and I shall now vote against the Bill because I am deeply troubled by it. He mentioned that the Department has been working very closely with the Catholic Church on the issue. Those involved might have thought that they had been working closely with the Catholic Church, but they have not produced the sort of Bill that the Catholics bishops would have wanted.
In the view of the Health Committee, mental health is the Cinderella service in the country. None of us knows when we will be struck down with a mental health problem, and none of us knows when one of our loved ones might be struck down with such a problem. When that happens and we become interested and we cry out for help, the help, sadly, simply is not there. It certainly is not there for many of our young people who, for various reasons, are disturbed and need help. We have poor services in the United Kingdom, and we have inadequate services in Southend. We are short of psychiatrists, and we are desperately short of consultant psychiatrists. For that reason, I had the privilege to chair a conference called "On the Edge", and we have set up a voluntary organisation, Trustlinks, which has produced a mental health directory. A number of hon. Members on both sides of the House touched on advocacy, and it is such a shame and a missed opportunity that the Bill does not address that point.
The Bill will totally destroy protection for mentally incapacitated people by enabling euthanasia by omission through the backdoor, with the withdrawal of food and fluid from non-dying patients. It certainly does not take an Einstein to recognise that, if people do not eat and take no fluid, they die, but all of a sudden, that totally necessary activity is described as a treatment. So those hon. Members who have raised their concern about that issue are entirely right.
I believe that we, as a legislature, have a responsibility to protect the most vulnerable members of our society, whether they are permanently or temporarily incapable of making decisions for themselves. We have a duty to protect those individuals' rights. The Bill, however, will not protect their rights. Indeed, it will take away some of their rights.
Following the publication of the draft Mental Incapacity Bill, I had hoped that, given the time spent on it, the final Bill would fully protect the welfare and interests of the most vulnerable people in our society. That is not the case. I admit that there are some improvements, but they certainly do not go far enough. In fact, some of the so-called improvements are misleading.
We have already heard about the case of Tony Bland—a victim of the Hillsborough disaster—in which doctors were allowed to withdraw treatment, including assistance with food and fluid, which he was given through a tube. What is enshrined in the Bill is the principle underlying the Bland judgment. The judgment allowed Tony Bland to be left to die from dehydration and starvation, which is hardly the impression given by the euthanasia lobby's claims about the case. It changed the definition of treatment; until then, providing food and fluid was defined as basic care—which is, of course, what it is.
The situation was so controversial that the Law Lords decided in their final judgment that those involved with any further persistent vegetative state cases would have to apply to the High Court before treatment could be withdrawn, so bringing about death. Since that time in 1992, there have, in fact, been very few cases—I am advised that there have been about 25 in total—and that indicates the feelings of most families in such situations, given that there are about 1,500 such cases in the country at any one time.
Shortly after the Bland case, Lady Thatcher set up the House of Lords Select Committee on Medical Ethics to consider the whole matter of euthanasia. In its report, it not only came down against euthanasia by commission but opposed the Bland judgment being enshrined in statute law. Like most of us, it saw that that could lead to wide-scale euthanasia by omission.
Both Conservative and Labour parties stated repeatedly that they fully supported the recommendations of the Lords Select Committee and would not support the Bland judgment being enshrined in statute law. Since the Bill was published this summer, the Department for Constitutional Affairs has made a great fanfare of assuring us that the Government have honoured their pledge—the Bill does not enshrine the Bland judgment.
Certainly, in any case in which the family or doctors consider it better to withdraw treatment from a post-vegetative-state patient, an application must be made to the High Court. I agree that that is the case, but that does not apply in cases of Alzheimer's, strokes or many other conditions in which patients become mentally incapacitated, for there are two somewhat tricky clauses that together mean that a doctor may withdraw assisted food and fluid from a non-dying patient, and there is only one end for any of us who are deprived of food and fluid, and that is death.
Clause 60 defines treatment as
"a diagnostic or other procedure" and follows the Bland judgment by including assisted food and fluid, so they are considered to be treatment rather than basic care, to which we are all entitled, and could be withdrawn from non-dying patients. The Bland judgment is not enshrined in the Bill, but the whole principle underlying that judgment is absolutely basic to those clauses relating to health care.
Here we come to the next loophole, which is that all decisions must be made, as many hon. Members have said, in a patient's "best interests"—but what are those best interests? The Bill gives us yet another catch-all, saying that "best interests" refers to a patient's wishes or, even more dangerously, to what someone else considers those wishes might be. It completely omits any reference to health or life, and neither does it contain any defence to allow for those cases where the person declaring that pulling the plug would be in the patient's best interests might be a beneficiary or have some other self-interest.
The equivalent provision in Scotland is far more sensible in a number of ways, one of which is the definition of a patient's best interests. The Adults with Incapacity (Scotland) Act 2000 is simple and straightforward, defining best interests as the patient's benefit. It is vital that the clause including assisted food and fluid as treatment be amended so that nutrition and hydration continue to be regarded as basic care. I also want a clearer definition of best interests, as in Scotland. That is the only way of safeguarding the interests of patients.
I am seriously disturbed about the dangers of making advance directives legally binding, as they can be ambiguous, quite apart from the danger of the elderly and incapacitated being manipulated into signing away their life. I question the motivation of those so determined on this course, especially as the euthanasia lobby has always regarded such legislation as the first step to gaining euthanasia by commission.
I would like to be able to tell the House that I will support the Bill, but I cannot. Unamended, it would simply be another piece of anti-life legislation and another step down the treacherous path of cheapening life. All of us came into politics because we believe that life is everything. I hope that, although hon. Members voting at 10 o'clock may not have heard the speech of the hon. Member for Crosby, there will be enough colleagues to tell them what she said and try to persuade them not to enter the Aye Lobby.
It would be hard to find anybody who would deny the basic premise underpinning the Bill—that all people have the right to make decisions for themselves, and that if they find that difficult they should be supported in the process. The Bill affects up to 2 million people, and 70 per cent. of them are being cared for at home. I had better make my position clear, as others have today. I am not a member of any pro-life group and I do not come from any religious grouping, but the subject has interested me for a long time—certainly since I came to Parliament in 1997—and I agree that the legal eagles and the medical specialists have been leading the debate in this area. I agree with the statement made by my hon. Friend Tony Wright that it is about time that Parliament debated this important issue and came to conclusions.
I have several concerns about the Bill. My hon. Friend Mrs. Curtis-Thomas made it clear how difficult it can be to communicate with some people—in her case, her mother. I am somewhat worried that busy medical staff and social workers—and, indeed, busy relatives and friends—will find it extremely difficult to spend the amount of time with patients that she obviously spent with her mother to try to get a decision out of her. Communication techniques are available, but some require specialist machinery and instruments. They are not available in all hospitals and certainly would not be readily available to the 70 per cent. of people without capacity who are cared for at home. If the Bill is enacted, I hope that we will recognise that fact and encourage people who are involved in health care and welfare to make more equipment available for communication with those with whom communication is most difficult.
I want to mention the very elderly in that respect. Such people are not always found in hospitals because many are cared for in residential and nursing homes. Many are unnecessarily heavily sedated—I stress the word "unnecessarily". It is impossible for an elderly and heavily sedated patient to make a sensible decision, so I want assurances that the Government will ensure that such people are safely and painlessly brought out of heavy sedation so that they can take the decisions that the Bill encourages them to make.
I am also worried about people who have capacity one minute yet lack it the next—of course I refer to the mentally ill. That is why I asked the Minister earlier why the draft Mental Health Bill and the Mental Capacity Bill are not going forward in parallel, despite the fact that there is clearly an important relationship between the two. It is important for us to consider that group of people because unfortunately it is not a small one.
I come now to the two dominant subjects of the debate: living wills and independent advocacy. I have been passionately against enshrining living wills in statute law for a long time—certainly since I was elected to Parliament—and have campaigned against them over the years inside and outside Parliament. Why do the Government want to enshrine living wills or advance directives in statute law for the first time, especially given that they took the opposite point of view only a few months ago? They appear to have done a U-turn, so I wonder why they have changed their opinion on living wills.
The problem with living wills or advance directives is that whether we like it or not, they are closely associated with the Voluntary Euthanasia Society, which has frightened people for a long time about terminal conditions—at one time it was cancer, but now it is motor neurone disease. Although the Government say that they are against involuntary and voluntary euthanasia, and of course assisted suicide, the inclusion of clauses on advance directives or living wills in the Bill sends a strong signal to people who are campaigning to make voluntary euthanasia and assisted suicide legal in this country, as has happened in the Netherlands and Belgium, both of which are close to us. That is a reason why, despite the fact that the Bill has many good aspects, people are nervous about it. If the Government had stuck to their guns and stood by their statement of a few months ago that they would not enshrine living wills in statute law, the Bill would have been much better. I do not want the Bill to become the Trojan horse by which assisted suicide and voluntary euthanasia are legalised in this country. Mark my words: once it is on the statute book, there will be calls to amend it from people like the noble Lord Joffe in the other place.
Following the Bland case, which has been adequately covered, the British Medical Association and then, of course, the General Medical Council unfortunately defined artificial feeding and hydration as medical treatment. That was the single factor that set me on fire when considering the whole remit of people without capacity and in the debate on euthanasia. I thought that it was a grossly wrong decision. I still think that, and so do many other hon. Members who have spoken. I plead with the Government to reconsider that. It is not the medical professionals who should be defining terms of life and death, but this place and the other place—the two Houses of Parliament. I agree with those hon. Members who find it difficult to accept that withdrawing treatment such as artificial feeding and hydration, thereby starving and dehydrating someone to death, is not euthanasia. I know that the Government do not like to accept this, but starving and dehydrating a person to death by preventing them from having access to food and hydration is euthanasia by omission. I think that a court of law would agree.
I do not know whether any hon. Member saw The Observer on
I agree that that is a concern. The hon. Gentleman may also share the concern, as suggested in my mailbag, that people complain about the quality of care accorded to the elderly terminally ill in hospital, although that is difficult to ascertain. Those complaints arise with great frequency and are increasing with the attitude that hastening the departure of those people is acceptable.
I accept that.
In the Bland case, Lord Justice Mustill noted:
"It is a striking fact that in 20 of the 39 American States which have legislated in favour of 'Living Wills', the legislation specifically excludes termination of life by the" wilful
"withdrawal of nourishment or hydration."
That is a pretty significant statement. He went on to declare the practices of euthanasia by commission or omission as indistinguishable, something that the Government are unable to accept, at least at the moment. I hope that they will change their mind.
Another problem with advance directives is that people change their opinions as they age and as their circumstances change. They should be time-limited so that they cannot get out of date. The VES supports that, which is one thing in its favour. It is perhaps worrying that advance directives do not have to be in writing. They can be made orally by, for example, a patient who is being wheeled into the operating theatre. As long as the patient's wishes are recorded in the notes, the doctors will listen to an oral advance directive. So advance directives can be made either in writing or orally at almost the last minute. They reflect the wishes of the patient.
Does my hon. Friend agree that the notion of permitting people to die a horrible death by starvation and dehydration is difficult to accept, as is the concept of the legalisation of living wills? Does he agree that although there is some good in the Bill, it is difficult to see how it can be amended piecemeal without root and branch changes?
I believe that the Bill can emerge at the end of the legislative process in a much better state than it is now and that that point can be covered. I do not want to go back 15 years. We must go forward with the Bill and make it work.
Let me say something about independent advocacy. I have been meeting representatives of I Decide, the alliance that represents seriously disabled people. It has some serious difficulties with the Bill. One of the things that it has asked me to flag up is independent advocacy. I will be arguing to the end of the legislative process that seriously disabled people must have the right to an independent advocate. Their parents, social workers or those in residential homes who may be caring for them may give them advice that they are not prepared to accept, and they have the right to be heard by an independent advocate who would push the case for them.
I will not vote against this Bill. I will vote for its Second Reading because I am extremely pleased that we are having this debate and I want to continue it in Committee. I have heard that the Government are to extend the time for consideration in Committee. I hope that they will repeat that in the winding-up speech, because we must have adequate time to debate all the difficult decisions. During my discussions with my noble Friend Lord Filkin, the Under-Secretary of State for Constitutional Affairs, my hon. Friend Mr. Lammy and the Minister of State, Department of Health, my hon. Friend Ms Winterton, I believe that they have listened. I am convinced that they are operating from the best of intentions, but I hope that they take on board the criticisms that Members have made today as constructive, and that they are prepared to amend the Bill to make it acceptable to the vast majority in this country.
I end with a quotation from Jacqueline Laing, who is a solicitor, a barrister and senior lecturer in law at London Metropolitan university. She said:
"By allowing a new category of agent power to withhold and withdraw treatment—which includes nutrition and hydration after the controversial decision in Airedale NHS trust v Bland (1993)—as well as power to authorise both non-therapeutic research on the mentally incapacitated and controversial procedures like non-voluntary sterilisation and abortion—now permitted by the Courts—the Bill endangers rather than empowers. Its overall aims are accordingly irreconcilable with the intrinsic dignity of every patient, however disabled or impaired."
The question is whether she is right. I hope that we can debate such concepts in Committee.
I am very pleased to be able to speak on this important Bill. I take note of your suggestion, Mr. Deputy Speaker, and I shall be brief.
I welcome the general presumption in the Bill, as everyone has. Changing "incapacity" to "capacity" was significant. I have a particular concern about communication issues that I do not think has been aired during the debate. I address these comments to the House, but particularly to the Minister as I will not be applying to serve in Committee. These are particular issues that the Committee might want to consider.
I welcome parts of the Bill, especially the commitment to take every measure necessary to meet communication requirements. I am glad that the Government were able to publish the draft code of practice at a very early stage; I congratulate them on that. I have been able to look at it closely. I am glad that it is very much a draft. Looking at it from a Welsh point of view—this Bill applies both to England and to Wales—there are glaring omissions in respect of a country that is officially and practically bilingual.
Hon. Members have referred to personal experiences, and I will refer briefly to the experience of my brother, who had a serious road traffic accident in 1972 and was in hospital for three years. Eventually he made a partial recovery, and he has subsequently had a very full life. The recovery of language after a head injury is a subtle and mysterious business. When my brother, who is trilingual, first recovered he spoke French, which was something of a problem in the emergency department of the Caernarfon and Anglesey hospital, as hon. Members can imagine. He moved on to speak English, which was no problem, and then Welsh, and essentially only Welsh, which was again something of a problem. My brother was communicating in the way that suited him, and it took a great deal of effort on the part of our parents, the five of his brothers and sisters and our cousins to talk to him continually, even when he was unconscious, to try to prompt him to start speaking. Initially, our communication with him was very slight, and as I said, it was in French.
Because of that experience, and having looked at the code of practice, I want to draw the Government's attention to some of its deficiencies and ask them to think again about the situation in Wales, at least, and possibly England, too, bearing in mind the ethnic minority population in both countries, many of whom are either bilingual or monoglot speakers of languages other than English. The situation in Wales is quite clear. There are 600,000 people who speak Welsh, and most of them also speak English. The Government's own figures show that there are 12,000 people who have learning difficulties. As 25 per cent. of the population speak Welsh, that means that there are 3,000 people with learning difficulties who speak Welsh, and because of their learning difficulties they are most likely to be monoglot Welsh speakers. Particular attention needs to be paid to their communication needs if they are to be able to express their wishes.
The Minister said that 7 per cent. of the population will at some point suffer manic depression, schizophrenia or severe clinical depression. If one applies that figure to the number of Welsh speakers, one finds that there are another 50,000 people who speak Welsh and, in most cases, English, who might need attention to be paid to their communication needs under the provisions of the Bill.
The hon. Gentleman may know that I have an interest in that I am married to a Welsh lady, although she is not Welsh speaking. Does he agree that it is important that consideration is given to the particular needs of those in black and ethnic minority communities along exactly the lines that he is developing in relation to Welsh speakers?
There is certainly a congruence of requirements, and I thank the hon. Gentleman for his intervention. The only difference is that we have the Welsh Language Act 1993, which makes Welsh an official language, placing requirements on health and social services bodies when they are considering the provision of services in Wales.
To be fair, clause 3 notes that it must be ascertained whether the person understands the information relevant to the decision. There are points about communicating decisions, and clause 4(4) refers to encouraging the person to participate in any act or decision as fully as possible. All those points are well made and well taken, but what worries me is the presumption in the Bill that this is essentially an English speaking world with exceptions of people who cannot speak English, rather than the actual situation, which in Wales is that as well as people who cannot speak English, there are people who can speak English but would choose to speak Welsh.
I am worried that the model of language in the Bill is essentially a deficit model: it assumes an ability in English and then looks at special cases. That is why there is a reference to sign language and to the use of specialised skills in verbal and non-verbal communication. I do not think that Welsh speakers need specialised skills in verbal and non-verbal communication; what they need is practitioners who speak Welsh. The legislation must regard that as the norm; it must not make exceptions of people who have such communication needs. The deficit model is not what we need.
Language is referred to at various points in the Bill, but I want the Government to make more explicit references to Wales and the Welsh legislative context. We have the Welsh Language Act, which speaks of using Welsh and English on the basis of equality. Even the previous Welsh Language Act, the 1967 Act, spoke of anything done in Welsh being of the "like effect" as if it had been done in English. That is the normal situation that confronts my constituents. It is also the normal situation that confronts stroke patients and people who have temporary or permanent difficulty communicating. For example, stroke patients can recover language, and some people who were bilingual and perfectly capable of expressing their wishes in both Welsh and English suddenly find that they can communicate only in Welsh. A professional body of physiotherapists recently conducted a survey of people with restricted capacity: when the people were assessed in English, many were found to be incapable of expressing their wishes, but when they were assessed in Welsh, many of those were found to be perfectly capable of doing so, but only through the medium of the Welsh language.
I want assurances from the Government, either when the Minister winds up the debate or in writing, that the issues that I have raised will be examined in detail. Under clause 41(1), the Lord Chancellor is required to consult the National Assembly for Wales in respect of the code of practice. I ask that he be required also to consult the Welsh Language Board in respect not only of the code of practice, but of the entire Bill. Thus far, unfortunately, there has not been sufficient consultation of that sort. I hope that the Government will assure me that it will take place in future.
It is a huge privilege to take part in this debate, which I think has shown the House in the best light. It has been a most sincere debate, with no hint of division along party lines, and we have heard heartfelt speeches, including from the hon. Members for Crosby (Mrs. Curtis-Thomas) and for Cannock Chase (Tony Wright).
Like all other hon. Members, I have received a few letters of support for the Bill and many letters expressing concern about issues including euthanasia, the validity of living wills, the definition of mental capacity, and the risks of conflict of interest. I promise not to go on too long, but I intend to discuss each of those issues.
The subject of euthanasia has been aired frequently. Most doctors vehemently oppose euthanasia, but they must continue to have protection in respect of giving pain relief to a terminally ill patient when such pain relief will almost inevitably shorten the patient's life and accelerate its ending. If that is not allowed, patient suffering will increase, even though the situation will become less common as the availability of specialist palliative care consultants and specialists in pain relief increases.
Turning to withdrawal of food and drink, 10 to 15 years ago that was a real problem, because it was incredibly difficult to keep people alive using intravenous and nasogastric drips. Now, with the ready availability of percutaneous intra-gastric feeding, which is so easy for the patient and can support life so easily, the major problem of providing food and drink has gone.
So we have to consider now just the underlying diagnosis of the patient. I am not altogether convinced by the many who have spoken so vehemently against the withdrawal of food and fluid that they are considering even any occasions when that is probably justified. Of course it is not justified in the case of someone who has a stroke, from which we have seen the most miraculous recoveries. It is not justified also in recovery from severe head injury. Again, we have all seen the most tremendous and dramatic recoveries from head injury.
I always think back to a patient who was riddled with cancer, bone secondaries, broken bones and pain. In those days it was impossible to control the pain without hefty doses of opiates, so that the patient was not really conscious of what was going on. In those circumstances it would not have been right to prolong life by keeping food and drink going. There are some rare circumstances when that is not justified.
I do not think that the Bill can provide guidance and legislation in all cases. Mr. Barron said that there had to be a certain amount of freedom for making individual decisions.
As for the validity of living wills, Jim Dobbin said that there would be no objection if such wills were made recently, were relevant to the current circumstances and there was no doubt about the person's mental capacity at the time. Dr. Iddon suggested that such advance directives should be time-limited. That is an extremely sensible suggestion.
There is a strong argument that living wills should be advisory rather than mandatory. There are so many circumstances where things could have changed. Hon. Members have referred to the emergency situation when it will be incredibly difficult for doctors to ascertain whether there has been an advance directive. Perhaps when the electronic patient record comes in, things will be easier. For the moment, the process will be difficult and time-consuming.
It is usually obvious when someone is incapable of making decisions. I always remember having to speak to a court about a solicitor when the court was trying to imply that when he had driven all the way down the M1 in his Jaguar with no tyres and had all his breakfast down the front of his jacket he was capable of acting as a solicitor. The situation is usually obvious but it can be incredibly difficult.
In the journal of the Royal Society of Medicine, just this month, there is a comparison of assessment of mental capacity by medical teams and psychiatric teams. It is only a small comparison, but given 23 patients where there had been full assessments by both teams, in 19 they agreed, but in four they disagreed. That involved physicians and psychiatrists. As I have said, the assessment of mental capacity can be incredibly difficult.
Lastly, there are risks of conflicts of interest. The lasting power of attorney, as I think that it is written at the moment, appears at least to give rise to a potential conflict of interest from relatives. Research, too, provides the potential for a conflict of interest. The Royal College of Physicians' briefing paper states:
"A significant omission in the Bill, however, is a statement that the interests of the patient always prevail over those of science and society, such as can be found in the European Clinical Trials Directive or the World Medical Association Declaration of Helsinki."
I agree with the many people who have written to me and the many hon. Members on both sides of the House who have said that the Bill must make it clearer that it is not in any circumstances about euthanasia. Several hon. Members have implied that today's debate has made them change their mind. That is exactly what a debate should be about, yet it is incredibly rare for hon. Members to admit that that has happened. I have changed my mind. I was going to vote in favour of the Bill, because the idea behind it is absolutely right; it is the detail that is not. However, I am going to abstain because I regret to say that I was not convinced by the Minister's earlier comments that he was really going to take the concerns of hon. Members on board. I fear, having sat on a few Standing Committees, that changes made in Committee are usually very small and are usually dictated by the Government. I therefore appeal to the Minister to let the Standing Committee really debate the issues on non-party lines as the House has done this afternoon, so that we end up with a Bill that will tackle this extremely difficult issue without alienating a large proportion of the population.
Dr. Taylor has been extremely sensitive to the mood of the debate, and to the atmosphere of gathering concern that some of us feel. I am going to be brief, as I want to allow my hon. Friend Andrew Selous time to speak, but I begin by saying that much of the discussion that we have had has rightly focused on the concept of autonomy, and on the apparent ideal of the autonomous individual controlling his or her own destiny in general, and his or her medical treatment in particular.
I want to stand back and to think about the concept of autonomy in the context of the Bill. In a perfect world, autonomy would be unimpaired. A man or woman would be in control of their autonomy, and would be able to anticipate every circumstance. Their mind would always be clear, and the information on which they acted would always be complete. They would therefore be able to anticipate the future. In that perfect world, the motives of third parties would also be benign. However, we do not live in that perfect world. Circumstances cannot always be anticipated, minds are not always clear, information is not always complete, the future cannot always be anticipated and, unfortunately, the motives of third parties are not invariably benign. This is a tribute to the complexity of human things.
All this is true of those of us who have capacity. My hon. Friend Mr. Boswell was quite right to stress that the Bill deals with real people in the real world, and that those of us who have capacity should bear it in mind that we know people who lack capacity, and that we ourselves will almost certainly be incapacitated one day. If all this is true of people with capacity and of those who are incapacitated, it must also be true when the autonomy of people who are to some degree incapacitated is transferred to an attorney or deputy in the way that the Bill sets out. It is to that aspect of the Bill that I want briefly to refer.
I am not a medical expert, but I have listened to some very moving speeches today by hon. Members who know a great deal about medicine or who have seen their own relatives suffer. I have to refer in passing to what I think we would all agree was the speech of the debate, that of Mrs. Curtis-Thomas. It must be possible, as the hon. Lady said—and as Jim Dobbin reminded us in his speech—for an attorney or deputy with authority over life-sustaining treatment to be confronted by a medical dilemma that the patient had not anticipated or that he or she was uncertain how to deal with. In those circumstances, it is possible that the attorney or deputy may not understand what the patient wants or would want, for a hundred or a thousand different reasons. He may have misunderstood the wishes of the patient, and it is possible that he may have had some sort of disagreement with the patient since being given an advance directive or being given power of attorney. He may not know, as was illustrated by Mrs. Curtis-Thomas, that the patient or person does not want food or water withheld. If that person is not an attorney but a deputy appointed by the court who has no particular knowledge of the person in question, and who is sensitive to the demands and requirements of the state, and realises that state resources are limited, there are particular sensitivities and dangers for disabled people.
I speak with some wariness, wearing my hat for a minute as shadow Minister for Disabled People, as I know that, on issues affecting disability, there are nearly as many opinions about any one measure from disabled people as there are disabled people. A number of contributors to the debate, including my hon. Friend Mrs. Browning, reminded us that the treatment of disabled people in hospitals and other places is not always all that it might be. Dr. Iddon was right to remind us of the concerns of the I Decide coalition, particularly, as I understand it, with regard to the issue of authority being transferred to deputies. Those concerns are serious, because of the rather loose definition of best interests in the Bill, which my right hon. Friend Mr. Duncan Smith and my hon. Friend Mr. Leigh explored at length. It is clear that best interests will not be medical best interests, and that attorneys will have the statutory right to refuse treatment on behalf of patients.
The Government have a reasonable riposte: the Minister could point out that under the Bill, doctors can change the decision of an attorney or deputy if they feel that it is being taken for the wrong reasons. I share the concern of my right hon. Friend the Member for Chingford and Woodford Green that in practice that may not happen. It may not happen because doctors may not have the time or inclination, or because they may be wary of a long court battle.
Some of us therefore fear that we are standing on our old enemy: the slippery slope. In those circumstances, Ministers always like to assure us, using another cliché—now that I have used that of the slippery slope—that we are not crossing the rubicon. That phrase is often heard in such circumstances. The Minister made that point in a general way when introducing the Bill. That response does not quite convince me, however, that the Bill will not allow the practice of euthanasia by omission, which already takes place—many speakers have referred to the long-rolling effects of the Bland judgment—and that we would not be crossing a rubicon were we to vote for the Second Reading of the Bill. Some of us have been assured by Ministers previously in relation to abortion and genetic experimentation, for example, that we are not crossing a rubicon, only for us to be told later, often by the same Minister, that we have already silently crossed that rubicon, and it is now too late to do anything about it.
I am in a slight dilemma about what to do tonight, given that there is a clear danger of euthanasia by omission under the Bill. Part of me would like to send a strong signal to the Government that they ought to introduce amendments to deal with that point, and to deal with the concerns about advance directives. Those considerations should lead me to vote against the measure but I am mindful that there are good things in the Bill and I do not want to delay them. I shall therefore follow the lead of the hon. Member for Crosby and abstain. Unless the Government table amendments in Committee to deal with the serious concerns that have been outlined, I fear that I may have to vote against Third Reading.
It is not up to my right hon. Friend the Member for Chingford and Woodford Green, other hon. Members or me to prove that our fears are reasonable but up to the Government to prove to us that they will not be realised. They have much work to do on the Bill and I hope that it can be presented in a greatly improved form on Third Reading.
It is tremendously important for us to recognise the good motives and intentions of everyone who has spoken in the debate. Although I have serious reservations about the measure, I acknowledge the Government's good motives and intentions on such a contentious subject. As many hon. Members have said, we all salute the Government for trying to grapple with it so that statute law catches up with case law and practice.
I also agree that we should speak about the issue with humility and care, as Tony Wright said in his opening remarks. Although many of us approach the subject with great passion and strong feelings, we should remember the hon. Gentleman's words. Like many hon. Members who have spoken, I have some experience. Some 24 hours before my mother died, my sister and I had to make difficult decisions. They are never easy and any of us could face them. Care and humility are therefore important.
At the outset of my remarks, I want to say that there are circumstances in which we should not strive officiously to keep alive—I believe that that is the phrase—and artificially prolong life for a day or two, causing huge discomfort to someone who would die in a short space of time. The Bill should not be about that.
My fundamental problem with the measure is that there are too many unanswered questions. Sadly, a great lack of clarity remains. This afternoon's debate has shown that through the widely differing interpretations of the Bill's effects. That genuinely worries me. When I came to the House today, I believed that I would probably abstain, but my worries are so great—as a result of partly what I have heard and partly my experience as a veteran of one or two Standing Committees, when the Government did not listen to the arguments with as much good will as they might—that I shall vote against Second Reading. I want to send a slightly stronger warning shot than a mere abstention would convey.
I share the worry, which many people expressed, that case law as reflected in the Bland judgment will be partially enshrined or upheld in the Bill. The measure also appears to uphold in statute law the provisions of the General Medical Council to which Mr. Justice Munby objected in the Leslie Burke case.
Like all other hon. Members, I was moved by the speech of Mrs. Curtis-Thomas and I make no apology for referring to it again. It was incredibly powerful. It highlighted the great danger of legally binding advanced directives. We learned from her contribution that, in some cases, people will make a legally binding advanced directive when of sound mind, definitely believing that that is their settled will on their future treatment, but when they are in a hospital bed on a ward, they wish to choose a different course of action. We heard how the hon. Member for Crosby's mother was fortunately just able to communicate her will by blinking to say that she wanted to live, but we have to think of cases where people perhaps will not be able to communicate that.
That was the first thing I learned from the hon. Lady's contribution. The second was—she described it more clearly perhaps than others have in the debate— what a painful and distressing way to die the withholding of food and fluid is. We need to think hard about the dryness of the mouth, the desperate need for the mouth to be wet and not being able to remedy that situation.
I worry too about the time constraints that will be placed on the nurses, doctors, medical professionals and clinicians who will have to take these decisions. My right hon. Friend Mr. Duncan Smith spoke of the pressures that many of our health service professionals work under. I worry that, with the advance directives, the attorneys, the deputies, the concern about what the courts will say about what they do and do not do, the true patient benefit will not always come to the fore because of the time constraints. It is important that the withholding of food and fluid be excluded from "treatment" in the Bill.
I go back briefly to the case of the 83-year-old lady in Florida. It is a distressing incident but it is important to focus on it to ensure that such incidents could not happen here. She suffered a stroke and was left with a severe physical disability, which included difficulty in swallowing. A feeding tube was inserted so that she could receive nourishment. Some three years earlier, she gave her brother power of attorney in respect of her health. He directed that the feeding tube was to be removed and that is what happened. She became hungry and repeatedly asked those caring for her in the nursing home for food but the ethics committee of the hospital decided that the order was clear. As a result, to quote the Washington Post of
"Until her death more than 10 days later, Nighbert was restrained in her bed to prevent her from raiding other patients' food trays."
That is a deeply distressing case. During the debate, I have listened hard to try to find some guarantee that there will be absolutely no way that anything like that could happen in this country, should the Bill become law. I have not been reassured during the debate or by what the Minister said.
As many hon. Members have said, there is a worry that this is euthanasia by omission. I do not speak as a Catholic but it is worth noting that the Pope recently defined euthanasia as
"an action or omission which of itself and by intention causes death".
It is significant that the past president of the World Federation of Right to Die Societies, Dr. Helgha Kuhse, has said:
"If we can get people to accept the removal of all treatment and care—especially the 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."
That resonates with many points that have been made today.
On medical research, where such research is purely a question of assembling a database history or of observing the patient concerned, I see no legitimate objection, but if such research is invasive or in any way intrusive, it is a step too far. On behalf of the people whom we are discussing, we must look very warily indeed at granting this or any future Government such powers.
The Bill's use of the phrase "best interests" has been criticised frequently today. I would like it to be replaced by a reference to the "life" of the person concerned, along with a reference to their health and "clinical" best interests. I hope that we can do at least as well as the Scottish Bill; it uses the term "benefit", which is much more direct.
Does the hon. Gentleman agree that Lord Brandon's 1990 definition could be adopted or adapted? The Bill could state that an operation or other treatment is in the "best interests" of a patient only if it saves their life, ensures improvement, or prevents deterioration in their physical or mental health. Surely that would be a reasonable start. Could not such a definition be of use?
I certainly like the sound of that a lot more than the Bill's current definition, and it would make a welcome starting point. I hope that the Government Front Benchers have heard what the hon. Gentleman said, and that they will incorporate it into our deliberations in Committee. It is worrying that in certain circumstances, "best interests" could be deemed to be other than the currently expressed wishes of the patient or person concerned.
I want to finish by touching on the position of attorneys and deputies, to which reference has been made. Perhaps the Minister will comment in her reply on another case from the other side of the Atlantic—the worrying one of Mrs. Schiavo. Her attorney was her former husband, who seemed not to have her best interests at heart when she came to rely on his taking decisions on her behalf. Her case went to the Florida court, although I am not entirely clear as to what then happened. However, I would be very grateful if the Minister gave me some assurance concerning attorneys and deputies whose position appears to have been compromised.
This has indeed been a remarkable debate. Every contribution was measured and, in a sense, without side. In a way, Members were not arguing for or against the Bill; rather, they were simply saying what they felt was important in relation to it, and indicating at the end of their speeches their feelings about it. Indeed, there have been powerful speeches not only from many of my hon. Friends but from all parts of the House. I hope that I will be forgiven if, in the time available, I do not succeed in mentioning them all, but each one made a powerful contribution to the issues under consideration.
I should say to the Minister at the outset that I shall abstain when the time comes to vote at 10 o'clock. I shall do so not because I want to duck out, but because I have taken at face value the Minister's assurance that there will be ample opportunity in Committee—I hope and believe that I will be able to participate in those proceedings—to look in detail at the issues that we have touched on today, and hopefully to do so in a consensual environment, with a Minister and a Government who are willing genuinely to listen to the points being made, so that the Bill can be treated as non-party legislation. If the Minister will do that, I am sure that the Bill will go forward. I am quite convinced of the need for a Mental Capacity Bill and I am quite sure that there are matters in the Bill on which legislation is very badly needed.
My hon. Friend says that he hopes that the Government will take the Bill forward in a non-party-political way. Does he agree that one way to achieve that would be to withdraw any Government whipping in Committee?
That is a pertinent point to raise. I appreciate that the Government must have a view about the business that they wish to take through, but they might well wish to consider taking that course of action. I cannot believe that, if they did adopt that approach, the Bill would be damaged in any irreparable fashion during the course of its passage. The Minister might well want to discuss that issue; it is a matter of sufficient importance that we might try for once to make such an extraordinary exception.
I was explaining why I thought that the Bill was desirable. Although I am a barrister, I am not particularly familiar with the inner workings of the Court of Protection. It has long been a matter of common knowledge that the systems in place for the legal supervision of those without mental capacity are woefully inadequate, very costly and very slow. The Government's intentions to set up a new structure are therefore greatly to be commended. They are doing something that it has been necessary to grapple with for years and years.
I include in that the system of attorneys and deputies, without which the streamlining procedure, requiring constant referral back to court for quite mundane decisions, cannot be brought into being without the catastrophic consequences that I mentioned—in respect of time, lawyers' fees and costs to estates that are diminishing daily through administrative costs. Indeed, it has almost approached the point of scandal, as some Members will have been made aware by the correspondence that they receive from their constituents.
The Government are greatly to be commended, as I said, but the problem—we cannot get away from it—is that the Bill also seeks to engage with a series of definitions of areas of the utmost greyness, which pose huge issues of conscience, ethics and morality. It has been said that the Bill is not about euthanasia, but we have touched on it. The Minister is quite right that the Bill is about many more things than that, but we cannot get away from the fact that among the central issues in the legislation are the definition of the circumstances in which people should be allowed to die and in which we should take action to prolong life. It is inescapable that hon. Members should wish to pay great attention to those issues.
If I have one regret about the course of this evening's debate, it is that we did not hear enough from those who are broadly happy with the Bill as it stands. They will all turn up at 10 o'clock to support the Bill on Second Reading. That is their entitlement but, with the notable exceptions of the hon. Members for Sheffield, Heeley (Ms Munn) and for Cannock Chase (Tony Wright), we have not had from Back Benchers the sort of input that I would have liked to have had to provide some degree of reassurance about their views and why they believe that the Bill's present framework is satisfactory. We were rather left with those who have understandable objections, which, I have to say, I share in substantial measure.
These matters are not, of course, easy. The hon. Member for Cannock Chase made a particularly powerful speech. If I share nothing else with him—in fact, I probably share many things with him—it is that I had to take a decision about ending the life of a child, my child. That is very difficult, and I recall that I did not think at the time that I was practising euthanasia. However, I have to accept that, with the help of doctors, I was making a series of judgments that were not easy. In reality, these are daily decisions that have to be taken by many people. Sometimes they are very difficult; at other times they appear to be crystal clear. We must be very careful not to be too prescriptive.
What I found so interesting about Mr. Justice Mumby's decision in Burke was that for the first time it was acknowledged that the argument has gone only one way in the past few years. It has been about people describing the circumstances in which their lives might be terminated. But what about the people who say, quite aggressively, "I want my life to be prolonged, at all costs."? The judgment suggested that they had an equal right to say that and their wishes were determinative. Those are Mr. Justice Mumby's words. That is a challenge, because some people might argue that in some circumstances one could go over the top in attempts to prolong life. When General Franco died, there was a strange and macabre pantomime in which efforts were made to keep him alive over several days by bringing in various doctors, although it was clear that the end of his life had arrived. We must consider that such circumstances may arise.
What troubles me about the Bill is, first, that it seems to start with the supposition that the right to shorten one's life through directives and living wills is one that should be challenged only in certain discrete circumstances. Secondly, we cannot escape the problem with the judgment in Bland, which is that to many people it seems strange and offensive that food and drink should be reclassified as treatment so that depriving someone of them should be acceptable. It is all a matter of degree. If someone is likely to die within a few hours, it is pointless, intrusive and improper to take measures to prolong their life—many would think. However, as Mrs. Curtis-Thomas pointed out in a powerful speech, it is easy for us to make value judgments about the quality of life of others that can be unjustified or, at any rate, unjustifiable. I am not sure that the Bill as presently drafted succeeds adequately in reconciling those conflicts.
I am left with the impression that over the past few years we have seen a curious coarsening in attitudes to the value of human life within the caring environment. I think of my aunt dying in a leading London teaching hospital in the mid-1990s. I was shocked by the cavalier approach to the elderly dying of nursing staff. That seems to be reflected in many letters that I have had on the subject from constituents about standards of care of palliative medicine in hospital. It seems to range from the outstanding, often in hospices, to events the description of which make one queasy. That may be due to a mistaken interpretation of the judgment in Bland, which was made on discrete issues.
We would do well to bear in mind the consequences of our own actions. If we are to codify the law and not allow it to progress of its own accord, we should remember that it would then be much more difficult to change it. Admittedly, it is not easy to change a House of Lords judgment, but it can be done. I ask the Minister to bear that in mind, because we will have to consider the whole issue with enormous care. What are best interests and how should they be defined? Can the circumstances in which it is acceptable to withdraw care or food and drink be narrowed down more than they are at present in the Bill? Most people see a big distinction between the decisions that have to be taken in caring for the dying and a decision that gratuitously hastens death when there is otherwise a reasonable prospect of life continuing for some time.
Those are very difficult matters, but I was particularly impressed by the comments of Dr. Taylor in that regard. Nor should the Under-Secretary avoid the fact that a number of Members came into the Chamber unpersuaded, but by the end of the evening they were, on the whole, disturbed by what is proposed. The force of the arguments presented shows that he must bear that in mind.
My second point is about research, on which less has been said during the debate but about which I have even more concrete anxieties than about the other clauses. Earlier, in answer to my right hon. Friend Mr. Duncan Smith, I said that I had some sympathy with the Government because they wanted to codify practices that, I fear, have been going on for a long time. Historically, testing, experiments and research on those who did not have mental capacity frequently took place simply with doctors explaining to relatives what was involved, assuring them no great harm would come to the patient and carrying out the procedures.
The Government have taken the perfectly understandable view that such a practice is unacceptable and that we must have a codification procedure. However, the result is that, in the starkest and clearest way, the House will be asked to legislate that somebody who will not themselves receive any direct benefit from an experiment should nevertheless be made subject to it for the public good. I should dearly love to skate away from that proposition, but if I were confronted with it head-on I should have to tell the Minister that I found it unacceptable. It may benefit thousands of people; it may benefit the sum of human knowledge and potentially benefit others. However, unless there was a clear-cut indication of willingness by that person, before they lost their mental capacity, that they wanted that procedure to happen in those circumstances, my conscience would come up against the buffers and nothing would induce me to support such a proposal.
Does my hon. Friend agree that a simple test would be to ask everybody in the House whether they were prepared to have themselves experimented on, not for their own benefit but for the good of mankind? I suspect that the answer would be no.
That may be the case, although it is worth pointing out that the forms of experiment proposed are limited to those that are not supposed to interfere with our general well-being. None the less, I agree with my right hon. Friend; it is a startling proposition.
I want to give the Minister the opportunity to wind up properly so I shall bring my remarks to a close. Heaven knows that these matters are not easy. The Minister will have every support from the Opposition in trying to achieve a piece of legislation that stands the test of time and commands widespread respect, but the Government really must take on board the fact that such matters cannot be written on tablets of stone. They must listen and they must be willing, during the passage of the Bill, to allow it to evolve naturally on the back of the participation of all Members who want to take part.
The debate has been informed, interesting, passionate and, on occasion, very moving. Obviously, Members have strong views about the Bill and they have expressed them today. I apologise in advance as I know that I shall be unable to answer all the points that Members have raised, but I shall try to address some of the main issues.
As the Under-Secretary of State for Constitutional Affairs, my hon. Friend Mr. Lammy, set out so clearly in his opening speech, the Bill has the potential to improve the lives of millions of people. During the course of the debate, we have perhaps moved away from addressing some of its real benefits.
As Mr. Boswell said, at some point in our lives many of us are likely to be affected by mental incapacity, whether personally or because of caring responsibilities. Up to 2 million people currently lack capacity, including more than 700,000 who suffer from dementia in the United Kingdom and 145,000 adults in England who have severe and profound learning difficulties, but the current law that affects people who lack capacity has undoubtedly developed in a piecemeal way. Many people therefore find it confusing and unclear, as was so eloquently expressed by my hon. Friends the Members for Blackpool, North and Fleetwood (Mrs. Humble) and for Sheffield, Heeley (Ms Munn).
It can be difficult to make arrangements for the future, when a person might lose capacity, and the legal framework supporting carers in their decision making is also unclear. It is not always obvious who can do what. Some people think that they can do what they like because they have a family relationship. Others may feel that they are restricted by the law, so they will do too little. The Bill will change that; it will empower and protect not only vulnerable people, but those who have to make decisions on their behalf. That is where, in a sense, we could perhaps have concentrated a little more of the debate today.
I am glad that the hon. Members for Sutton and Cheam (Mr. Burstow) and for Daventry and my hon. Friend Tony Wright agree that the Bill will not permit euthanasia and that there was confirmation that the Bill will not change the current situation with regard to the Bland judgment—something forcefully endorsed by my right hon. Friend Mr. Clarke.
My hon. Friends the Members for Heywood and Middleton (Jim Dobbin), for Crosby (Mrs. Curtis-Thomas), who made a very moving speech, and for Bolton, South-East (Dr. Iddon), and Mr. Duncan Smith, and the hon. Members for Congleton (Ann Winterton), for Gainsborough (Mr. Leigh), for Southport (Dr. Pugh), for Southend, West (Mr. Amess), for Wyre Forest (Dr. Taylor), for Wycombe (Mr. Goodman) and for South-West Bedfordshire (Andrew Selous) all contributed to the debate and raised the issues of euthanasia, the Bland judgment, advance directives and best interests.
Many hon. Members suggested that perhaps the Bill in some way was the thin end of the wedge in respect of euthanasia. I can assure the House that that is not the case. The Bill will not allow anyone to ask someone to kill them; rather, everything in the Bill is about ensuring that vulnerable people are respected and valued. The Bill will strengthen the protection available to vulnerable people. It will establish in statute that the person's best interests should be at the centre of every decision, and that will work together with the doctor's existing duty to preserve the patient's health and life. Clause 58 makes it clear that nothing in the Bill will affect the law relating to murder, manslaughter or the operation of section 2 of the Suicide Act 1961.
Many hon. Members have touched on the Bland judgment today. Having heard the breadth of concern expressed in the House that the Bill's good intentions may be skewed, will my hon. Friend at least offer to go away and reflect on what more might be done to ensure that the Bill explicitly states that nothing in it will make the removal of intravenous food and fluids easier?
We could not get much clearer than what is stated in clause 58, and I will come to the Bland judgment in a minute.
The Bill will create a new court of protection as an arbiter when disputes cannot be resolved. The code of practice makes it clear that persistent vegetative state cases, like now, will still go to court. The Bill clarifies the current common law on when someone can refuse treatment in advance and provides for people to plan ahead to refuse specified treatments, but tough hurdles must be passed to ensure that the advance decision was made with capacity, and is still valid and applicable in the circumstances.
It is not convincing to argue that a statutory definition of basic care and treatment is necessary. I repeat that the Bill is silent on artificial nutrition and hydration, focusing on a person's best interests. Statutory definitions can be inflexible and certainly need to stand the test of time over many years. We all know that technology and practice in patient care develop quickly, as does our understanding of the difference between basic care and treatment. As the House of Lords made clear in the Bland judgment, ANH is provided as part of a package of medical care. As my right hon. Friend Mr. Barron said, the provision of ANH is not always beneficial, and certain conditions, including certain forms of cancer, can be made worse by it. Defining ANH as basic care could force doctors to provide it when it is not in the patient's best interests.
We must never lose sight of the fact that the Bill requires all those providing care for a patient to act in that patient's best interests, and if necessary that can be challenged in the courts. Non-provision of ANH, if providing it was in the patient's best interests, would be negligence.
The Minister makes an important point, but I find it a strange proposition that reclassifying artificial nutrition and hydration as basic care would make it impossible to withdraw it in the last hours of a patient's life. I would be grateful to hear much more detail on that in Committee, because surely the point being made by Dr. Taylor was that to withdraw it in such circumstances would in fact be perfectly all right.
As I said, the position in the Bill is exactly the same as the current position in common law. Judges, doctors and others make these difficult decisions all the time. We cannot necessarily define in statute all the issues that are being developed.
My right hon. Friend Mrs. Browning and others raised the Bournewood and Burke judgments. I assure the House that we are considering the implications and will make decisions as quickly as possible.
The hon. Members for Sutton and Cheam and for Caernarfon (Hywel Williams), my hon. Friends the Members for Blackpool, North and Fleetwood and for Sheffield, Heeley, and my right hon. Friend the Member for Coatbridge and Chryston all raised concerns about advocacy. We all agree that advocacy can provide helpful support for vulnerable people, but we believe that a statutory right of advocacy for all would be inappropriate. More than a million assessments are made every year, many of them for straightforward issues such as mobility and whether someone needs a new zimmer frame, and it seems disproportionate to introduce a statutory duty to bring in an advocate in such a case.
Advocacy goes far wider than mental incapacity, covering older people, children and those whose first language is not English. This Bill is not the vehicle for promoting advocacy for all. It has to focus on the most vulnerable people who lack capacity. However, we listened to the concerns of the Joint Committee and other stakeholders who said that we should offer support to those who are especially vulnerable, and that is why we have introduced the independent consultee, a form of advocate for the most vulnerable when there are especially serious decisions to be made. Of course, I assure hon. Members that we will continue to consult on developing the important new system, so I hope that that reassures them.
Several hon. Members, including Mr. Grieve, raised the question of research, and we included relevant provisions in the Bill in response to the Joint Committee. The Bill now says that research involving an incapacitated person may be carried out if it has the potential to benefit the person without disproportionate burden, or if it is intended to provide knowledge about the treatment, conditions or care of people with a similar condition. In such cases, there must be negligible risk to the incapacitated person and the research must not be unduly invasive.
A further safeguard in the Bill is that a researcher must find someone who is interested in the incapacitated person's welfare to consider his or her interests and advise whether the incapacitated person should participate while taking account of his or her wishes and feelings. The code of practice sets out how the independent person should operate. If that does not happen genuinely and if the research ethics committee is not satisfied on any of those points, it must not approve the research proposals. Clause 33 sets out additional safeguards that mean that research cannot take place if the incapacitated person objects or has indicated in advance that he or she does not wish to take part in such research.
Charities and many professional organisations have lobbied for the Bill for more than a decade, and it is the product of many years of consultation with a wide range of stakeholders, as my hon. Friend the Member for Cannock Chase pointed out. People with personal experience and professional expertise have worked with us to draw it up and we are deeply grateful to all who contributed. The Bill has been scrutinised by the Joint Committee of both Houses and improved immensely through its work. We have taken the vast majority of the Committee's recommendations on board and I reiterate the thanks expressed by the Under-Secretary of State for Constitutional Affairs to Committee members, many of whom have spoken today.
The Bill is empowering and ethical. It will empower people to make decisions whenever they can. It will clarify the position of those who care for people who lack capacity. It will empower them to act with the confidence that they are doing that within the law, provided that they do so in those people's best interests. It will also enable people to challenge decisions by using the best interests principle and checklist as a guide and a new and specialist court as an arbiter when necessary.
The Bill has a long history of consultation and open discussion, and it is long overdue. People who lack mental capacity have waited long enough for it. Of course it has engendered widespread discussion on difficult issues, as we have heard today. However, I hope that following today's debate and in Committee—I confirm that we will extend the time for that—we will be able to reassure hon. Members about the many issues that were raised today. It is for that reason that I commend the Bill to the House and urge hon. Members to give it their full support.