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Dr. Brian Iddon (Bolton, South-East) (Lab): Is the hon. Gentleman aware of research showing that when a person is appointed a proxy or attorneywhatever one calls itin many cases they do not always carry out the wishes of the person who gave them that power?
That is the sort of evidence that led me to draft my amendment before the House today. It is all
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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 treatmentphysical as well as in relation to their specific mental disabilitybecause 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 effectand "long-term" is defined as a period of at least 12 monthswill 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.
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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.
"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 said, they do not change the Bland judgment, but they do prevent that judgment from 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 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
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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.
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.
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.
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