Mental Capacity Bill: Report Stage

Speech delivered on Tue 14th Dec 2004

Mr. Paul Burstow (Sutton and Cheam): I rise to speak primarily in support of my amendment No. 46, but also in support of the amendments and new clauses proposed by the hon. Member for Knowsley, North and Sefton, East (Mr. Howarth). I shall also speak to support the proposals tabled by the right hon. Member for Chingford and Woodford Green (Mr. Duncan Smith) that I have also signed.

I want to make it clear from the outset that I do not believe that the Bill gives the green light to euthanasia. That is not just my view, but that of the Catholic Bishops' Conference, which said in its briefing to the Bill on Second Reading:

"We had argued that the inclusion of a clause such as Clause 58 was the minimum required to provide the necessary assurance that nothing in the Bill permits euthanasia. With such a clause now in the Mental Capacity Bill, together with other important changes made to meet our concerns, we do not believe that the Bill can be described correctly as a Bill introducing a permission for euthanasia".

That is an important and clear statement. Some of the press comments on the Bill seem light years away from the measured tone of the Catholic bishops. Some of the reporting over the last few days has been ill informed, misleading and, in going out of its way to frighten people, arguably mischievous. That is a real cause of concern.

The Bill is about giving people who lack capacity greater control over their day-to-day lives.

Mr. McNamara rose—

Mr. Burstow: If the hon. Gentleman has a question about the Catholic bishops, I am more than happy to take his intervention now.

Mr. McNamara: I am most grateful. The hon. Gentleman has cited what the Catholic bishops said. However, they also said that although clause 58 of the Bill could not be correctly described as introducing a permission for euthanasia, which would have meant opposition for that reason, it none the less still had two serious and remediable weaknesses. They said that, unless the weaknesses were addressed, the Bill could still unintentionally become a vehicle for euthanasia by omission or withdrawal of medical treatment.

Mr. Burstow: The hon. Gentleman is right. That is why, in Committee, I tabled an amendment that was not dissimilar to the new clauses before the House today. It posed the question of the central purpose behind the action. Is it to hasten a person's death or is it to palliate and provide care, comfort and support? That is central to today's debate and I am clear in my personal view that the new clauses provide the additional reassurance that both the Church of England and the Catholic Bishops' Conference are seeking from the House today. That is why I started my remarks by observing that they have been assured on certain points, but the hon. Gentleman is quite right to draw attention to the fact that some further matters remain before the House today.

As I was saying, the Bill is about giving people who lack capacity more control over the way they live their day-to-day lives. Understandably, our debate is focusing on end-of-life decision-making, but the bulk of the Bill is about the millions of people in this country who lack capacity to take decisions and it provides a proper framework in which they can take more decisions and exert more control over their own lives. It is about decisions as simple as what people eat, what they wear, when they go out and when they go to bed; everyday decisions that we in the House and many of our fellow citizens take for granted.

The central purpose of the Bill is to maximise the opportunities for people to take such decisions for themselves. It enshrines in law a new starting point—a presumption of capacity—and only when it is proven that capacity is lacking can someone else start to take proxy decisions. Those outside the House who want to portray the Bill as somehow having an evil intention are doing a disservice to millions of our fellow citizens who will benefit from it. That, as well as the concerns of the Catholic bishops and others, needs to be put on the record.

That does not mean that certain issues do not remain to be debated at this stage of the Bill or that the new clauses and amendments in the group would not help to further strengthen the safeguards. Indeed, the Bill will be strengthened considerably if they are passed today. I do not mean to imply that no further safeguards are needed in respect of such matters as advance decision-making. I believe that, as a general rule, they should be put in writing, but that is sadly not the case in the Bill as it stands at the moment.

I want to make it clear that Liberal Democrat Members have a free vote on new clauses 1, 2 and 4 and on amendments Nos. 1 and 2. I will personally support new clauses 1 and 2 and will deal in moment with my reasons for doing so. The hon. Member for Knowsley, North and Sefton, East is right that people on all sides of the debate are trying to strike a balance and to find a way through and make it absolutely clear that the Bill is not about euthanasia. The best way of striking that balance is by testing opinion through free votes in the House. I regret the unwillingness in certain quarters to allow free votes on this matter. It reflects a weakness in the argument, but I appreciate that it is not the hon. Gentleman's fault.

I want to speak to amendment No. 46. I believe that people have the right to expect that they will be cared for to the highest standards. The purpose of my amendment is to introduce an equal consideration clause into the statement of principles in the Bill. Such a clause would ensure that a person who lacks capacity is treated no less favourably than a person—any other person—who either lacks capacity or has capacity in similar circumstances. The purpose is to make clear that proxy decision-makers must banish their personal prejudices and attitudes when they come to act on behalf of a person who lacks capacity.

Dr. Brian Iddon (Bolton, South-East) (Lab): Is the hon. Gentleman aware of research showing that when a person is appointed a proxy or attorney—whatever one calls it—in many cases they do not always carry out the wishes of the person who gave them that power?

Mr. Burstow: That is the sort of evidence that led me to draft my amendment before the House today. It is all about ensuring that a person who lacks capacity is treated no less favourably than a person who has capacity.

Mr. Tim Boswell (Daventry) (Con): I have considerable sympathy with the hon. Gentleman's amendment. In cases of persons with learning disabilities, does he agree that there is a sad history of second-rate medical treatment—physical as well as in relation to their specific mental disability—because some members of the medical profession still somehow feel that they are less important priorities for treatment?

Mr. Burstow: I am coming on to an example that addresses precisely that point. Sadly, that is what anecdotal and some research evidence suggests, so if we are putting in place statutory safeguards and arrangements for proxy decision-making, we must try to ensure that we avoid those pitfalls in future. That is what my amendment is designed to do. We should never make the assumption that life has less value for people who have difficulty in making decisions or need support to do so or who may not be able to make them at all. The adoption of the new principle would further increase confidence in the operation of the Bill.

The amendment stems from evidence that has already been referred to and from anecdotal and other evidence that prejudices and attitudes about the quality of life of people with serious learning disabilities, serious mental health problems, head injuries or other conditions that affect capacity can get in the way of supporting those people as they are in respect of what they want and need. For example, decisions about treatment for elderly people or those with severe learning disabilities who lack capacity can sometimes be made by professionals on the basis that their lives are of less value than that of a much younger person.

In other words, the date of a person's birth can determine access to treatment in a most unsatisfactory and inappropriate way. Such decisions can also be taken in a perfunctory way when it comes to consultation with families. There have been examples of families coming to visit an elderly relative in hospital to find a "do not resuscitate" notice hanging on the end of the person's bed without any proper dialogue with relatives or the individual in the bed about whether that was wanted. Amendment No. 46, therefore, will also complement families' new legal right to be consulted about the care and treatment provided to a relative who lacks capacity.

In Committee, I raised a similar problem with the Minister, who argued that the Disability Discrimination Act 1995 and the Disability Discrimination Bill currently going through the House would provide protection for decisions and actions taken under this Bill. That may be so in many situations, but there are concerns that the Disability Discrimination Bill excludes a significant number of people who lack capacity. In particular, the requirement that a disability must have a long-term effect—and "long-term" is defined as a period of at least 12 months—will mean the people who lack capacity because of an illness or injury for less than 12 months will not be covered by the discrimination legislation currently going through the House.

The Minister may say that such matters should be dealt with in the discrimination legislation, but I want to give the House an example. An older person who has an accident and loses capacity temporarily, but who is likely to recover, will still need professionals to make decisions on his or her behalf. Without the new clause as amended, there would be no protection for that person against prejudicial decisions based on age alone, especially if the person involved had no relatives to make representations. If the Bill makes no reference to discrimination legislation, it will create a lack of clarity for medical professionals and others about whether they are behaving in a lawful way.

In the end, the courts will have to make decisions about the interface between this Bill and the Disability Discrimination Act 1995. Amendment No. 46 would close that gap and ensure that people are treated with equal consideration, regardless of capacity.

I turn now to new clauses 1 and 2. The latest briefing from the Catholic bishops conference makes some important points. It states:

"It is both moral and legal to withhold treatment when it is judged that the treatment, even if necessary to sustain a patient's life, is not in the patient's best interests because, given the patient's condition, the burdens it imposes are excessive compared with the benefits it offers . . . It is not true that life must be sustained at all costs . . . One can legitimately choose to forgo or withhold treatment because its burdensomeness is disproportionate to any likely benefit from it. One can do so even though one is sure that without it death will come soon, or come sooner."

The new clauses recognise that reality. They accept that the courts still have jurisdiction in terms of making decisions. As the right hon. Member for Chingford and Woodford Green (Mr. Duncan Smith) said, they do not change the Bland judgment, but they do prevent that judgment being extended by means of a statutory provision. The focus should be on whether the treatment is beneficial or burdensome, and the aim is not to keep a person alive at all costs. Hon. Members noted earlier that we should not strive officiously to keep people alive and, ultimately, such matters must be settled in the courts.

Dr. John Pugh (Southport) (LD): Does my hon. Friend agree that one virtue of new clauses 1 and 2 is that they are highly specific? I have some sympathy for amendment No. 2, tabled by the hon. Member for Knowsley, North and Sefton, East (Mr. Howarth). Some people have criticised it and said that it may have the effect of reversing the Bland judgment. Will my hon. Friend comment on that?

Mr. Burstow: One concern mentioned in the briefings is that focusing on quality of life, and on whether a person's life is worthwhile, causes us to miss the point. We should ask, "Is this treatment worthwhile?" That is why I shall not support the amendment tabled by the hon. Member for Knowsley, North and Sefton, East (Mr. Howarth), even though I know that it is well intentioned and attempts to bridge gaps.

Mr. George Howarth: I am greatly honoured to be patronised by the hon. Gentleman, and I am aware that there may be difficulties with the wording, along the lines described by the hon. Member for Southport (Dr. Pugh). I shall wait to hear what my hon. Friend the Minister has to say before I form my judgment.

Mr. Burstow: I am grateful for that intervention, and I am sorry for his misunderstanding of my comments on the amendment.

Dr. Pugh: My hon. Friend and I seem to be conducting a dialogue through the hon. Member for Knowsley, North and Sefton, East), but I wanted to point out that, if the hon. Gentleman's amendment were amended by the Minister in the way proposed, it would lose the support of one of those who supported it originally.

Mr. Burstow: I believe that that is so. I shall move on, as I do not want to patronise the hon. Member for Knowsley, North and Sefton, East any further.

Mrs. Browning: Will the hon. Gentleman give way?

Mr. Burstow: I want to make one more point—I hope in a non-patronising manner—and then I will give way.

Earlier, the Minister referred to certain forms of tumour that can grow larger as a result of continued hydration and nutrition. However, surely a court would decide that to withdraw treatment in those circumstances was to confer a benefit, as that would slow the progress of the condition and thus reduce the likelihood that the person involved would die sooner. That seems to be the debate that we are trying to have.

Mr. Lammy: How is the benefit conferred by the amendment? We have all been working to ensure that no one can cause death, but the amendment as drafted deals with what is burdensome, and with a situation in which a person is unconscious. The Government have spoken to the medical professionals about the circumstances of people with cancer, because we are in sympathy with the aims of the amendment. They have told us that ANH might hasten death, but that that is not covered by the amendment as drafted.

Mr. Burstow: The Government have considerable resources when it comes to drafting. The Catholic bishops have been very engaged with the Government, and very positive about their desire for dialogue. Today's debate is an opportunity to move that dialogue forward. If the Minister is able to reply to the debate by saying that he is seriously willing to enter into further dialogue with the aim of devising an amendment that would achieve a closing of the gap that has been described, that would be fine and wonderful.

Mr. Lammy: Conversations continue, and of course I will be saying that.

Mr. Burstow: I hope that the Minister will make it clear that the intention is to find a further amendment that will address this concern. I shall give way to the hon. Member for Tiverton and Honiton.

Mrs. Browning: I want to have a go at trying to persuade the hon. Gentleman to vote for amendment No. 2, which deals with the principle of the matter. The Bill talks about many ways in which life can end, and it is always difficult to address such matters adequately, but the principle behind amendment No. 2 is that it is in a person's best interest for life to continue. That may be for only a short while, or in circumstances in which invasive treatment cannot be considered, but surely the principle that life must continue must be placed on the face of the Bill. If not, the Bill will be specifically about ending life, and it should not be about that.

Mr. Burstow: No, it should not. I am still uneasy about the interaction between the drafting of amendment No. 2 and the new clause. The danger is that the Bill may be tilted towards asking whether a person's life has worth and so is worth saving. A better question is, "Is this treatment worthwhile and beneficial?" My amendment would try to change the presumption.

Mr. George Howarth: Will the hon. Gentleman give way?

Mr. Burstow: The hon. Gentleman said earlier that many hon. Members wish to speak, and I do want to make some progress, but I will let him intervene.

Mr. Howarth: I am grateful to the hon. Gentleman for giving way, but I think that he is misrepresenting amendment No. 2. The presumption in the amendment is not that it is the quality of a person's life that should be judged. It is simply that it is better for a life to continue than not to continue. Questions of quality have to do with what is appropriate in the period between a decision being made and the end of that person's life. As the hon. Member for Tiverton and Honiton (Mrs. Browning) said, that will vary in every case.

Mr. Burstow: My anxiety is made worse by the fact that an amendment proposed to amendment No. 2 would delete the word "best", and water down the original in other ways. I accept that that is not the hon. Gentleman's doing, but that is the proposition before us today, and it gives rise for further concern.

The amendments that I support are about clarity and reassurance. They are about ensuring that we are focused on treatment that is beneficial, not burdensome. We must make it clear that the courts still have jurisdiction in such decisions. Those amendments will be the subject of a free vote, but amendment No. 46 is about ensuring that regardless of whether someone retains capacity, he or she is treated in an equal fashion and is not the subject of prejudice, or bogus assumptions that lead to inappropriate treatment. That is the key to amendment No. 46 and I look forward to the Minister's response to it.