Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witnesses (Questions 220-239)



  Q220  Mr Bercow: It would not be a scandal if there were!

  Mr Kramer: If there is absolutely no prospect of recovery, where the functional aspect of the brain is not working, where there is a part in the brain that is pumping your heart and keeping you alive but there is no awareness of your outside experiences and where there is no prospect of recovery and there is an inability to interact with others and have a physical or emotional experience, then it would be right to make a decision in terms of withdrawing artificial nutrition and hydration, subject to all the safeguards in terms of how decisions are made and second opinions. Hazel's point is that decisions on treatment should be based on the gravity of the illness and not the degree of the disability and I think that is a very important issue in terms of quality of life decisions and ensuring that different standards or different assumptions are made and ensuring that different standards of assumptions are made because of someone's disability. I think that is a very important point that I share with Hazel.

  Q221  Jim Dowd: We are in danger of confusing a number of different elements here. The case of advance refusals will really only apply to people who have had capacity at some stage.

  Ms Morgan: Absolutely.

  Q222  Jim Dowd: Most of the people you represent today will never have been in that position, so cannot be regarded in the same way. To pick up my Lord Chairman's point on what is the difference between artificial or non, is it not the existence of a degree of choice? If people can take food and nutrition by traditional means, they equally have the choice to refuse it.

  Mr Kramer: That is right, yes.

  Q223  Jim Dowd: It is when that choice disappears that it becomes artificial.

  Mr Broach: And again the point was made yesterday that basic care includes the ability, if you can, to take food and water/hydration by natural means. So, we are following the existing guidelines that the British Medical Association have published.

  Q224  Lord Pearson of Rannoch: I have been put a problem by a legal friend whose reading of the Bill is that lasting attorneys and deputies will have no clinical duty of care under the Bill so long as they act within their given powers, so they cannot be sued even if their decision could be clinically negligent if made by a doctor. I do not know if you would agree with that but, if so, does that put a patient who suffered damages in those circumstances in a position where he would have no legal remedy and no compensation in the courts? Is that your understanding of the Bill?

  Mr Broach: I think I may have to say that we are not competent to answer that question. It would be a very interesting question that perhaps the Law Society might like to consider.

  Ms Morgan: I could not answer, but we are saying that these kind of decisions should be outside the remit of deputies.

  Q225  Baroness Fookes: If it is decided by those who have authority to act on behalf of the incapacitated person that artificial nutrition and so forth should be withdrawn, is that not a decision that ought to be taken finally by a court and only by a court?

  Mr Broach: Not if the person in question has granted the power to make that decision to another person while they have capacity.

  Q226  Baroness McIntosh of Hudnall: I am very sorry but I am getting extremely confused here because my understanding is that you are representing as part of the Making Decisions Alliance people who are born with some lack of capacity.

  Mr Broach: Yes.

  Q227  Baroness McIntosh of Hudnall: And indeed many people who were born with no capacity to make decisions. Am I right?

  Mr Broach: We are here representing organisations who represent people who are born with a condition that may impair their capacity and, to go back to a comment made by Jim Dowd, many of the clients we work with will have capacity to make decisions. So, it is those who are born with conditions that may affect their ability to make decisions, which is why we are still able to and have a duty to comment on issues such as lasting powers of attorney and advance directives.

  Baroness McIntosh of Hudnall: In which case, I will withdraw at this point and come back to it.

  Q228  Lord Rix: Can I come back to what Hazel Morgan had to say about the word "recovery". What is meant by recovery is open to debate. Would you like to see a different phrase used rather than the word "recovery", if a phrase can be found?

  Ms Morgan: I am thinking hard about this one. I am not going to answer your question directly, but I think that if someone has the capacity to enjoy their life, that should be respected. That is the right to life and I am again expressing a personal view. I think that recovery is incredibly difficult to define.

  Mr Kramer: Can I try and answer and I may regret trying to make a stab at it as I have a few times today. I think your particular issue is about aspects of quality of life and perceptions of health professionals about someone's medical state and, if you are going to apply quality of life criteria, they really should be applied to a person with a known disability in the same way as a person without a known disability. People value and enjoy their lives in different ways and they may enjoy lives in ways which we would not choose for ourselves, but a consideration of quality of life is only relevant in terms of thinking of the gravity of the illness and not concerned with the nature and degree of disability. So, a decision to withhold treatment on that ground would be a clinical decision on the grounds that treatment would lead to pain and suffering which is disproportionate to any benefit. On that basis, the test should be whether the physical survival of the person is in their best interests and whether somebody could make something of their life in the context of their life within their existence defined by their disability. So, doctors should compare the condition of the individual before treatment with the expected condition after treatment and they should be considered relative to each other, rather than comparing the state of a non-disabled person to a disabled person. What I am trying to say is that, in terms of medical decision making, the nature of the disability or the degree of disability is not a factor, it is the context of the gravity of the illness. I do not know if that is answering your question.

  Q229  Lord Rix: It is.

  Mr Kramer: I am trying to expand perceptions in terms of quality of life which Hazel was talking about earlier.

  Lord Rix: I hope that has given all of us food for thought.

  Q230  Baroness Barker: I have found this extremely helpful because this is a subject on which there is a great deal of emotion which I find quite distressing. It has been enormously helpful to me to realise that the focus is on the decision at the point at which it is made and that all subsequent decisions which are decisions about treatment of any sort have nothing to do with a person's capacity at all. The question I want to ask you is, if you look at Clause 23 of the Bill, do you agree that there should be a presumption that a person has capacity to make an advance decision and that, once that person has made an advance decision, that should be treated with the same regard as anybody else who has made an advance decision?

  Mr Broach: We would have to agree that because otherwise it would undermine the presumption of capacity.

  Mr Kramer: Your point that these issues are not to do with capacity is central and extremely important.

  Baroness Barker: That is correct and I found it very helpful when your colleagues yesterday talked about advance statements to have treatment as well as the withdrawal of treatment. I think those have thrown a great deal of light on the issue we are talking about.

  Q231  Baroness McIntosh of Hudnall: Allowing for the fact that I have been struggling a little with this and I am a little confused, the questions that I wanted to ask you are about the issue of human nature which hangs rather uncomfortably around these questions of advance directive and withdrawing of treatment. Do you have a view about the concerns which have been voiced extensively to us by a number of groups that the provisions in the Bill for lasting powers of attorney and for an advance directive to refuse treatment do amount or could amount to the permitting of euthanasia by neglect?

  Mr Broach: Yes, we do have a view which is again the same as the view expressed yesterday, which is in summary that what the Bill seeks to do is give the same rights to people who can plan for their incapacity once they are incapable that they enjoy now. So, euthanasia is something that only those who have the capacity can do, and what we are talking about here are people who lack the capacity to make the decisions for themselves. Really, what it boils down to is that the argument around euthanasia I feel personally is a bit of a red herring because really what the argument is about is whether people should be able to opt out of treatment including withdrawal of food and hydration and that applies whether you have capacity or you do not have capacity and that is the argument we were making yesterday.

  Q232  Baroness McIntosh of Hudnall: I am not sure that I entirely understand that because, in order to opt out of the treatment, you have to have had the capacity to understand that that is what you are doing.

  Mr Broach: Yes and that is what you are doing by making either a lasting power of attorney and including those powers or by making an advance refusal.

  Q233  Baroness McIntosh of Hudnall: That is correct. It is my understanding that the issue that is being put to us is that by allowing people at the point at which they had capacity the right to make an advance directive of that kind—and this would be particularly true with the vulnerable group of people where perhaps there might be a greater need to establish capacity or incapacity—that then subsequently for that advance directive to be implemented in relation to such a person could be construed as a form of euthanasia by neglect. I do not advance this as my view but I simply say that it is—

  Mr Broach: Our view is very different in that what we are asking for is a right for people to plan for their future incapacity and that, if an advance directive is not appropriate, then it will not be implemented if it is not valid or applicable. There are various safeguards in the Bill around advance directives, so they do not have absolute status. For instance, if a new treatment comes along that was not available when the person made the advance directive, it would no longer apply and the MDA supported those safeguards.

  Q234  Baroness McIntosh of Hudnall: That leads me to my second question which directly relates to that point, which is that medical advances are happening all the time. It might be thought that it was not wise to enshrine anything of this kind in legislation when the likelihood of an advance or indeed simply change, whether one construes this as advance or not, is very high and it should be left to the courts. Do you have a view about that?

  Mr Broach: We do not as an Alliance have a view on that but my personal perspective on that issue is that the legislation does provide a degree of flexibility as I have just outlined and that actually this issue is of such magnitude that it would be better dealt with in the statute and I do not think anyone here will disagree with me. I think these are issues on which we need to go back with colleagues and perhaps we could write to you.

  Q235  Chairman: Are your views affected at all by the evidence we have had which is strongly felt by people who have a deep moral and religious belief that even if in fact somebody wants to have advance refusal of treatment, they should not be allowed to do so because it is morally wrong?

  Mr Broach: I would argue that. As an Alliance, we support the right of people to plan for their incapacity and to make those decisions. I would also like to point out that over 7,800 postcards were sent to the Lord Chancellor by supporters of the Making Decisions Alliance in favour of our position on mental incapacity legislation. So, there is a substantial body of support for our line on this Bill as well as a body of support against.

  Chairman: Do not suggest that they send a thousand to us!

  Q236  Jim Dowd: Probably as contentious as withdrawal of treatment in past directives, would you give your view on the Bill's status vis-a"-vis the Human Rights Act and Article 2 of Schedule 1.

  Mr Broach: As again stated yesterday, we see Article 2 as a right to life and we acknowledge the duty that public authorities have to preserve that right and protect that right, but we feel we should be able to choose not to take up that right and therefore, in that context, we feel that advance refusals are not contradictory to the Human Rights Act.

  Ms Morgan: I would like to be very sure that the right to life of people who lack capacity is not threatened, undermined and damaged by this Bill.

  Q237  Jim Dowd: Do you think it will be?

  Ms Morgan: I think, for example, if deputies can make a decision regarding withdrawal of treatment, the decisions need to go to court and be very, very seriously considered. I think the withdrawal of nutrition and hydration is a very painful experience and that, if people choose to in their advance directive, that is one thing, but to assume that for someone who does not have the capacity undermines their right to life.

  Mr Broach: That is right and, in our written evidence, we have said that deputies should not be able to make that decision. There is another point in the Human Rights Act which we would like to make note of in relation to a different article: Article 8 and the right to respect for a private life. I think this goes back to the very first point I made at the beginning of this submission that our concern is that powers in the Bill may become applicable to people whose capacity has not been actively assessed. An assessment is not defined in the Bill; it is not in the list of definitions. Obviously, how someone is incapable of making decisions is set out as a test, but there is no mechanism in the Bill for that test to be actually applied. There is provision for a code of practice on assessment which is one step forward, but there is a real concern that if powers in the Bill did apply to people with the ability to make their own decisions or to make some decisions but not others, then that could well, in our view, contravene the spirit if not the letter of Article 8.

  Q238  Jim Dowd: But that would be entirely subjective and would depend on the circumstances of the case.

  Mr Broach: It would indeed.

  Q239  Jim Dowd: It would not be an integral part of the Bill.

  Mr Broach: That is correct, but to not at least define assessment within the Bill and give some indication of how the test of capacity should be applied we think is a mistake and omission, and in fact I think Hazel did come up with some words that might serve as a definition of assessment in the context of the Bill.

  Ms Morgan: Yes. Assessment is clearly in the Bill and yet it is not defined very closely and I suggest that maybe this could be a possible definition, "A process whereby an individual's ability to make a decision in a specific area at a material time is determined and recorded by appropriate people/professionals who know the person, professionals from a range of background, so that the medical and social models are acknowledged, depending on the area of decision making, with the person who is judged to lack capacity also involved along with their supporters or advocates."

  Ms Clipson: If we could make the point about advocacy now, we think it is very important and I think we have raised in our submission the issue about how advocacy in many of these things we have discussed today could be very useful in preserving the rights of people in this position and helping with the empowering and presumption of capacity issue by clarifying whether people have capacity. So, for example, in the assessment process, having access to an advocate would be very helpful because most of the people I talked about at the beginning who might have problems with communication and making it clear that they have such capacity and in fact, in some of the issues we talked about in terms of major life-changing decisions, we recommended that there should be an access to advocacy in those instances because they are such an important part of people's lives.

  Baroness Knight of Collingtree: Do you recognise that one of the grave concerns about this matter springs from the fact that, within living memory, other governments in other countries have decided that mentally handicapped people ought not really to be here at all and that something must be done about that? Do you recognise the danger that there is so frequently, particularly in the elderly who can easily be made to think that they themselves are a burden to their relatives and ought to asked quietly to be got rid of? Do you recognise that that is a very real worry which undermines many of the letters that we are receiving?

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