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Mr. Dominic Grieve (Beaconsfield) (Con): I appreciate that the new clause was presented to the right hon. Gentleman by medical bodies, and it is necessary for us to debate it, but have those bodies taken adequate legal advice? The test in the right hon. Gentleman's illustrationthe need to carry out a blood test so as to provide, for instance, the right conditions in which to nurse a patientwould always be in the patient's interests; indeed, such tests would be directly related to their care, because without them adequate nursing care could not be provided. The medical bodies may be worrying about nothing on that point.
Mr. Barron: I do not disagree. If someone is suffering from HIV, it is in their interests to know about it, but there may be circumstancesfor whatever reasonwhen permissions cannot be given by the individual, certainly if they lack capacity. Apart from that, the victim of a road accident, for example, would not have been able to give pre-permission and, due to the accident, would be unable to give any form of permission at the time.
The Bill has been drawn up to protect the interests of the patient and I completely agree that that should be so. However, we need to probeand the purpose of the new clause is to probe exactly what is likely to happen when such situations arise. We have just had a long debate about clinicians' decisions and there were questions about what would be within the law or what professional advisers or regulatory bodies would think. The new clause is useful because Ministers will be able to consider it and tell us what they feel about the situation. I support the clauses on research and do not want to amend them in any way. All research plans will be checked by independent experts through research ethics committees. That is important to ensure that research on people who lack capacity is safe, relates only to that person's condition and could not be carried out on a person who has capacity. That will apply in many cases, but I should like to know Ministers' thinking about the circumstances where it does not apply.
Sir John Butterfill (Bournemouth, West) (Con): I am very concerned about new clause 3, which seems to open very widely a range of procedures that may not be of the sort described by the right hon. Member for Rother Valley (Mr. Barron) in moving the motion. For example, I am not sure whether carrying out blood tests on patients incapable of giving consent could be in their interests, although it might be necessary to carry out a blood test in any event to discover what is wrong with someone and that probably would be justified. I am worried about the extremely wide scope of the new clause, the huge discretion that it gives to the Secretary of State and the lack of any independent adjudication on the appropriateness of such actions.
Sir John Butterfill: As a result of that operation, it was discovered that my mother had advanced cancer of the pancreas. When I spoke to the surgeon afterwards and asked, "Well, what's the prospect?" he said, "Well, she's absolutely riddled with it. All I've done is sew her up, and all we can do is make her comfortable for the few months that she has got left to live." I said, "Do we tell her?" and he said, "Well, if she asks directly, yes, but a lot of patients don't want to know, so unless she asks me or asks you, we probably won't tell her the situation."
My mother then came to live with my family in the final months of her condition because she needed fairly constant nursing, but it came to a stage where it was not possible for her to stay in the home and she went into the Royal Surrey county hospital, Guildford. We went to visit her one day and she said, "Oh, wonderful news: they're going to operate on me, and they think that they can possibly cure it; they think that they know what it might be." I said, "Oh, wonderful, mum. Yes, good; I'm jolly pleased." I then contacted the surgeon concerned and asked, "What's going on? You know perfectly well that she's in a terminal condition. We have been told already that she can't be cured. What are you doing this for?"
As it was a teaching hospital, I said, "Is this just to open up an old lady, so that students can see what a terminal pancreatic cancer condition looks like?" and the surgeon had to admit that it was. I asked, "Will it in any way benefit or advance the cause of medical science?" and the response was "Probably not." I said, "I shall report you to the GMC if you go ahead with this." The operation was not proceeded with and the staff said, "Well, how are we going to tell her?" I said, "Well, that's your problem. You've raised her expectations, and you'll have to deal with deflating them." I say that purely to illustrate the attitude of some members of the medical profession to the way that they interpret what they may or may not do.
What worries me about the new clause is not the sort of minor procedures that the right hon. Member for Rother Valley proposes, but the huge breadth of authorisations that may be included by the phrase
"any medical or surgical procedure in relation to any person without capacity to consent which, although not carried out for his benefit, will in the opinion of the Secretary of State not cause him significant harm and be of significant benefit to others."
That is extraordinarily broad. No checks and balances are built into the new clause, and it is not sustainable. That is where the Nazis were with Dr. Mengele. I am not suggesting that any of our Secretaries of State is ever likely to act in that way, but the new clause is far too broad, and it could not possibly be accepted without proper checks and balances being built into it.
When the Joint Committee considered this part of the Bill, I expressed quite a few reservations about the principle of carrying out research on people who lacked capacity. We have had a long debate this afternoon about advance decisions. Of course, if someone who has capacity, but knows that they have a condition which means that they will eventually lose it, gives their full consent while they are compos mentis to some research being carried out on them, that is a different matter. However, like my hon. Friend the Member for Bournemouth, West (Sir John Butterfill), I share concern about the scope of the new clause.
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Mr. Boswell: Does my hon. Friend believe that clause 1(5), let alone the new clause tabled by the right hon. Member for Rother Valley (Mr. Barron), represents an adequate exposition of the best interests principle?
Mrs. Browning: I have expressed my reservations about it. We were lobbied both in the Joint Committee and the Standing Committee by organisations, some of which I am personally associated with. I am sure that where there is a lack of research into certain medical conditions we all want to give as much opportunity as possible for research, but in the back of my mind I have a nagging problem about research being done on people who lack capacity, not for their own benefit but for the wider good of others, without their specific consent in an advance directive.
Mrs. Browning: Indeed. My hon. Friend has, as always, identified the nuances in the choice of language. What is significant harm and what are degrees of significant harm that would be acceptable for someone who lacks capacity? Would exactly the same things apply to someone who had capacity?
I have an interest in the matter in another context that is appropriate to the points made by the right hon. Member for Rother Valley (Mr. Barron). I worked with the Government a couple of years ago to persuade them to change a Home Office Bill in respect of the perpetrators of road traffic accidents who were suspected of drink-driving but who went into a casualty department unconsciouswithout capacity. The police had difficulty obtaining a blood sample from an unconscious perpetrator of an accident. It took three years, but we got there in the end and the legislation was amended. It was decided that a police surgeon, with the permission of the casualty admitting doctor, could take a sample under all the necessary constraints. When the person gained capacity, they had the right to say whether the blood sample could be used. The new clause would apply to many people who would never regain capacity and would not be able to exercise their right to make decisions.
The right hon. Member for Rother Valley gave the example of a patient with a disease or condition that might be of harm to others, including the medical practitioners looking after them. I am not convinced that procedures do not already exist to allow the medical profession to address specific concerns about spreading disease and contaminating others, including those working with patients.
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The Bill is an inappropriate vehicle for such requirements on research. New clause 3 would represent a movement away from the Bill's best principles, so I must tell the right hon. Member for Rother Valley that I cannot support it.
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