Taken before the Joint Committee on the Draft Mental Incapacity Bill
on Wednesday 17 September 2003
Carter, L, in the Chair
Barker, B Mr John Bercow
Memorandum submitted by the Making Decisions Alliance
Examination of Witnesses
Witnesses: MR STEVE BROACH, National Autistic Society, MS CAROLINE CLIPSON, SCOPE, MR RICHARD KRAMER, Turning Point, MS HAZEL MORGAN, Foundation for People with Learning Disabilities, and MS SUSANNAH SEYMAN, Down's Syndrome Association, Making Decisions Alliance, examined.
Q151 Chairman: Can I start by saying good afternoon, thanking you for the written evidence and taking time to attend. We are required to report on the draft Bill, we are not preparing a White Paper on mental incapacity, therefore, all the questions you have seen are structured around the structure of the Bill and that is our task, to report on the draft Bill. Perhaps you could all introduce yourselves.
Mr Broach: Thank you very much and particularly for this second day of evidence of the Making Decisions Alliance before the Committee. Our colleagues yesterday did not take the opportunity to introduce the Alliance. There are 27 organisations representing millions of people with impaired capacity and those who care for them. I am Steve Broach, I am co-Chair of the Alliance and here also to represent the National Autistic Society. The only point I would like to make regarding autism is that it is a spectrum disorder and that for the vast majority of people with the autistic spectrum, hundreds of thousands of adults in England and Wales, their capacity is not going to be easily ascertained. It is not black and white that they are able to make decisions or unable, so our key concern is that an accurate and informed assessment has to take place before the powers in this Bill apply to those adults and also that they have the opportunity to challenge both assessments and decisions that are made about them.
Mr Kramer: I am Richard Kramer and I am head of policy at Turning Point. The opening comment I would like to make is really to talk a little about the history of learning disability because in the past it was assumed that people were not competent to make any decisions of any sort, so decisions were often made by staff in service settings without any attempt to distinguish between decisions that they could make and those that they could not or could make with support and the emphasis unfortunately was on group rather than supporting individual decision-making. Sometimes the intentions were benevolently misguided and sometimes it amounted to exploitation or inappropriate treatment and more routinely people who did not need hospital treatment spent a lifetime in hospital for the convenience of people, and our society is benevolent and that is why this Bill is so important because we feel that the absence of legal procedures in decision-making actually discriminates against people who cannot make decisions and the need to see this legislation in the broad light of disability discrimination legislation.
Ms Clipson: My name is Caroline Clipson and I am from the disability charity SCOPE, which has a focus on people with cerebral palsy. Cerebral palsy is a condition which can affect people in very many different ways, but my particular interest and involvement in terms of the Making Decisions Alliance has been to look at those people who, with different conditions, have their communication impaired in different ways and so that is perhaps what my particular interest has been in, and some of the issues I will be talking about relate to that issue.
Ms Seyman: I am Susannah Seyman from the Down's Syndrome Association and the DSA has campaigned for many years about the inequalities in healthcare for people with Down's Syndrome and this Bill is of particular interest to us to protect people who suffer from bad decisions which have been made.
Ms Morgan: I am Hazel Morgan, head of the Foundation for People with Learning Disabilities which is part of the Mental Health Foundation. The Foundation for People with Learning Disabilities uses its research projects to promote the rights of people with learning disabilities and their families. One area of our work recently has been around choice for people with severe and profound learning disabilities which is obviously very important in the context of this Bill. To my work I bring the experience of having been a family carer and the mother of a son with severe learning disabilities and during his lifetime I became aware of the issues around decision-making, the issues for him and the issues for family carers, particularly in the final year of his life when he had many healthcare issues as a young adult.
Q152 Chairman: Thank you. In situations where "there is a risk that the individual's own best interests would not in fact be the paramount consideration", do you believe that referring to "best personal interests" will significantly impact on decisions taken on behalf of individuals with incapacity? Does the proposed "best interests" checklist strike a balance between supporting the autonomy of the person with incapacity and providing them with protection?
Mr Kramer: I think the starting point is that there is concern over the term "best interests" largely because it is an outdated term. It is used principally in courts of law now to determine the right of medical practitioners to make decisions about medical treatment, so the term is outdated and it does not reflect the wide decision-making powers that will be in the Mental Incapacity Bill. The second point is the point that has been raised by the Law Society, which we support, which is the terminology "best interests" and the concern that it may allow people to impose their views on what is in someone's best interests or what they would choose for themselves. We think that because of that and because it may be difficult to change a person's interpretation of "best interests", a new term, such as "best personal interests" is needed. I think the most important point is the starting point for the legislation. The starting point is really to maximise people's own decision-making ability and supporting that and that should be the guiding principle in the Bill. The fact that it seems that "best interests" is the guiding principle has given some misunderstanding that the Bill may restrict or impose a view over somebody's ability to make decisions, so, as a starting point, the guiding principle should be the right to make decisions rather than making an alternative frame for those who cannot make decisions.
Mr Broach: The conversation yesterday and indeed with the Scottish witnesses focused very much on "best interests" and the difference between that and "benefit". I think it is very important also to look at the early reports in the draft Bill, clause 2, and the safeguards it puts in around assessment in terms of how people should or should not fall under the powers of this Bill. Two very important ones are 2(2), that, "A person is not to be treated as unable to make a decision merely because he makes an unwise decision". That is a very important safeguard relating to Richard's point around assumptions about people with learning disabilities, and that is why it is not even in the Scottish Act. Also in 2(3), that all practicable steps have to be taken to help the person make a decision before they are described as unable to do so, again that is absolutely important, although it needs to be defined as to what practicable steps would be considered in those circumstances, so just a broad outline of the principal section of best interests and also the second clause in the Bill about the ability to make decisions.
Q153 Chairman: Would you be concerned if, under 2(2), a person clearly made a very, very unwise decision regarding their accommodation, their welfare or their finance or whatever? Even though it was a seriously unwise decision, you would stand by the right of that person who had made that decision?
Mr Broach: Yes, we would and the test of capacity that is set out in 2(1), that simply the person can understand the decision and also can understand the foreseeable consequences of it, if a person is fully aware of the consequences and still chooses to make that decision, that is their legal right.
Q154 Chairman: I suppose you would argue that they would be on the same footing as somebody with capacity who equally made unwise decisions?
Mr Broach: Precisely, that is right.
Q155 Baroness McIntosh of Hudnall: I just wanted to pick up on the issue you have already raised about Scotland and the terminology in the Scottish Bill. We asked your colleagues, as you have already noted, but it does seem to me that this "best interests" terminology is, as I described it yesterday, volatile and it does seem to me to be volatile, that it can have the potential to be used and abused. I am interested to know that given that you clearly accept that, you still feel that it is preferable to the kind of terminology that is in the Scottish Bill which describes quite clearly the necessity that there should be a benefit to the person on whose behalf decisions are taken. This is in the situation where decisions do have to be taken on somebody's behalf where it is clear that they do lack capacity.
Mr Broach: As an initial answer to that, our thinking around this Bill was framed by the Bill that was put in front of us, so we have tried not to amend the language that is used here and that is why "best personal interests" was one of our preferred options. In terms of whether "benefit" is actually preferable to "best interests", I think the point to make is that both are subjective and a benefit to an individual is also not an objective criterion. It also means that it is impossible for someone to take a decision that is not transparently of benefit to that individual because even if the decision may be in the person's wishes and feelings as the decision they wanted to take, you would not be able to take it unless it was to their benefit, so I think that both terms are problematic.
Mr Kramer: I think the Scottish legislation is good in that it has a statement of principle which defines the tone of the Act and ensures more consistent implementation and I think that is important. The Making Decisions Alliance have said that there need to be some principles that will set the tone of the Act and the main principle is the right to make decisions, the recognition of people's autonomy, to preserve autonomy and to protect those with impaired autonomy. The other principles could be around a non-discrimination quality, supporting in terms of information, so there are a number of principles which can govern the Bill. The Scottish have chosen "benefit" which is a sound principle. There are other principles and I think that autonomy and the right to support decision-making would be ones for us.
Q156 Baroness McIntosh of Hudnall: I find it quite hard to understand what the real value is that is added by "personal" in relation to best interests. It does not seem to me to clarify it very helpfully and I would be very interested to know why you want to amend it in that way.
Mr Kramer: Because I think it can affect the way decisions are made. If you are thinking of the best personal interests, it can mean starting from the individual, thinking how the individual can communicate, how we can break down facts to a decision, how we can ensure the right support, how we can ensure the environment is suitable to allow decisions to be made in the calm environment, so looking at the nature of the decision, the timing of the decision and the use of communication methods, the word "personal" would promote good practice in all of those areas.
Q157 Lord Rix: How would you protect the best interests of the person with a learning disability who already has perhaps limited powers of decision-making, but then those powers are gradually diminished through age or mental illness? How would you see that the Bill should be written, the face of the Bill, to protect such an occurrence?
Mr Kramer: I think the Bill does recognise that capacity can change, that people can develop incapacity with time and experience and, as you say, as people grow older they may develop dementia and lose capacity. I think that is recognised by the functional test and I think that is also recognised by the "best interests" test which allows people to participate in decision-making where they can do so, so someone who develops dementia may have a reduced capacity to make decisions, but they still may be able to participate in the decision-making process and should be encouraged to do so, so I do think the Bill is flexible enough and recognises that.
Q158 Lord Rix: Good.
Mr Broach: There is a second point there perhaps as well which was, as was mentioned by the witness from Enable, it should be possible for people with moderate learning disabilities to make powers of attorney and we must not forget that those powers could also apply to someone who has a disability and someone to represent him, but has capacity to endow that power to them, so in that situation of ageing and potentially coming on to dementia, they could make a power of attorney as any of us could.
Q159 Baroness Knight of Collingtree: Many years ago when I was a local councillor, I called on a lady whose condition worried me greatly. She was dirty, her house was filthy, her clothes had not been washed, I do not think she had had a bath in ages and, as far as I could see, she was not feeding herself properly. I finally, after a lot of effort, got her into a local hospital which she strongly objected to going to at all. I went to see her in it and there she was in a nice, clean bed, looking lovely and clean, but she died within a week. I have always been worried about what her best interests were in that case because I am horrified to say so, but I think her best interests were to be in her own filthy home and I still do not know, my Lord Chairman, whether I was right or wrong and I believe that I was wrong. What do you say?
Mr Broach: I think that is a very telling example, but I think there is a step before that perhaps which is that if this Bill becomes law, you would not have been able to take the lady into hospital unless you could demonstrate that she was not able to make that decision for herself. It is quite possible that although she was living in circumstances that were not ideal, she was able to choose to live in those circumstances and, therefore, she would not fall under an ability to make decisions as set out in clause 2.
Q160 Baroness Knight of Collingtree: So the Bill would have protected her?
Mr Broach: I think the Bill would have protected her right to make that decision for herself.
Q161 Stephen Hesford: I apologise for missing yesterday's session, so there is perhaps an absence of knowledge on my part, but I think I am picking up the drift. What I am worried about so far is that there seems to be an element of confusion in what is being said which I am not entirely happy is helpful to the Committee. You asked about the checklist, but I am not sure that has been addressed at all, the idea of whether the checklist is sufficient. The other is that there seems to be a confusion between assessing whether somebody has incapacity and then, if somebody has incapacity, what then you can do about it. The decision as to whether someone has incapacity or is incapacitated in some way to bring them within the Bill is a different stage from addressing best interests and so far it seems to be rolled up.
Mr Broach: Perhaps we should try to untangle it.
Q162 Stephen Hesford: Yes, for me at least.
Mr Kramer: I will deal with the first point because that is easy and it will give us time to think about the second. We do think that the best interests checklist is important. What is not clear in the Bill is the priority in terms of the checklist, what should be given priority in terms of that checklist, and the starting point is to support the person to make their decisions and make sure they have all the information to do so, so that is not in there. The other point that is not in there is the concern about supporting people who may have severe learning disabilities to make decisions who may be able to indicate their wishes through changes in behaviour and I think that is an important issue that is not included in the Bill, that someone may demonstrate pain and distress that they do not want to do something and that may be exhibited in changes in behaviour. If we are about supporting people with profound learning disabilities to make decisions, I think that is a very important factor that has to be taken into account. The third one is about the need to take into account issues around cultural values as well. If we are respecting people's diversity, then I think we also need to respect their whole makeup and their cultural factors which may influence their decision-making.
Q163 Stephen Hesford: I still think that that has the confusion of putting the two things together. Are you saying that clauses 1 and 2 should be amended in some way in seeking to address the issue of if somebody suffers from incapacity?
Mr Broach: No. Our argument is that, as with the Scottish Act, there are principles, but essentially clauses 2 and 4 together form the principles of this Bill, but actually for us clause 3, presumption against the lack of capacity, is the fundamental principle, so the way it works for us is that we presume that a person has capacity, we then assess that capacity and we allow them to make their own decisions and we ensure that they are supported to make decisions and if they still cannot make decisions, then the checklist in clause 4 would apply.
Mr Kramer: But the prominence given to best interests has led to confusion about whether it is going to restrict people's right to make decisions and that is why the presumption has to come first and move clause 3 to the start of the Bill.
Q164 Chairman: Is the problem that this Bill entirely has a functional approach, whereas the Scottish Bill starts off with the principles and then you build the functional approach on to that? Is that your concern?
Mr Kramer: Yes, if you were to ask us what is the overriding principle the equivalent to the benefit for the individual, we would say the right to make decisions that they are capable of making and to be supported in doing so and that is lost in the Bill because if you look at it, someone could go to clause 4 and ignore clauses 2 and 3.
Q165 Baroness McIntosh of Hudnall: Would that lead you to suggest that the title of the Bill is wrong?
Mr Broach: Yes.
Q166 Baroness McIntosh of Hudnall: And what would you suggest it should be?
Mr Broach: We have suggested that it is amended to "Mental Capacity".
The Committee suspended from 4.02pm to 4.10pm for a division in the House of Lords
Q167 Mr Burstow: It has partly been picked up already, this question of the insertion of the word "personal" to "best interests" as the test and I think partly Stephen's question helped to unpick this a bit, that by putting the presumption of capacity at the beginning of our thinking does help clarify it in that "best interests" does not apply if you have got capacity. What I am still not clear about is if the tests around capacity apply and a person is found to lack specific capacity to take a particular decision or general capacity and then "best interests" applies, how materially for someone looking at the legislation and looking at any codes that are produced as a result of it would act differently if the word "personal" was there? What would be the specific things that would lead them to act differently? Is there any previous legislation where this has been used and, as a consequence, has a different effect? It really would be very helpful if you could give us some sort of sense of how this is not just semantics and is actually substance.
Mr Kramer: I will try to give an example to answer the first point. If somebody with a learning disability needs medical treatment and he lacks capacity to consent to that treatment, a decision on the medical treatment would be taken on the best interests. Although that person may not be able to understand the nature of the operation or the consequences, you may be able to bring best interest factors that may bear on the medical treatment decision, for example, an individual who has a profound distrust and fear of needles and that fear and distrust of needles could be reflected in the medical decision-making process so that an alternative way of carrying out the treatment could be found. Actually the best interests about encouraging people to participate and taking account of past and present wishes could have a direct bearing on that particular medical treatment that is being proposed. Does that help at all?
Q168 Mr Burstow: No, it makes me more puzzled because in none of that did you use the word "personal" and, therefore, I want to ascertain how applying the word "personal" it would be different because the clause, clause 4, does, in (2)(c)(i), specifically talk about what you have just said, wishes and feelings, so that is there in the context of best interests, so can you help me one step further to understand how adding the word "personal" will make that list of things be read differently?
Mr Kramer: Because I think it would change the approach and the attitude to best interests because people would think in terms of the decision relevant to that individual, "What do we have to think about?" rather than thinking what is in the interests. If that person needs treatment, someone could say, "Well, that person lacks the capacity, so it is in their best interests to have treatment", and yet if someone who is involved with that person lacks the capacity to consent, how can we take account of past and present wishes. Actually if the terminology is changed and it says "best personal interests", it may think about the nature of the operation, thinking about the individual and having a much more person-centred approach to the treatment.
Q169 Mr Burstow: But is this not so much a question of the wording on the face of the Bill, but actually the codes of practice and the training that underpins it?
Mr Broach: Yes, it is, and that is absolutely crucial. However, we would like to see, as the Alliance, that it refers as many times as possible that it is about the person that is in the centre of the decision, so in that sense alone we think it is significant. It is also incidentally a recommendation made by the Law Society in terms of the technical question around other legislation which may include "best personal interests" which may be addressed to them. In terms of the checklist itself, there are, I think, some possible amendments and improvements that could be made. In 4(2)(b) the best interests test includes "the need to permit and encourage him to participate, or to improve his ability to participate", and that could be defined and unpicked further, I think. One of the things we would add in there is the court's advocacy which I am sure we will talk about in more detail later on. We would argue from the very beginning there that improving a person's ability to participate in decisions may well involve an advocate actually working with them to support their communication.
Mr Kramer: Just in terms of personal interests, if it said "personal interests", people would be more minded to think about whether that person has enough information to make a decision and whether people have the time and support to make a decision. Can we not move away from this feeling that someone cannot make a decision because they have not been able to do that in the past? It would mean less focus on whether a decision is reasonable in the interests of somebody else, so I think it is not just a question of terminology, but I think it can make a big difference in terms of how the Bill is applied.
Q170 Mr Burstow: The answers you have given seem to mix tests of capacity with tests of best interest and we need to make sure in the evidence that we are getting and the answers we are getting that we are picking those two apart so that we take the sequence in which they are being dealt with. It seems that you are conflating the two. Does that make sense? That is what it seems to me at the moment.
Mr Broach: That is a fair criticism and I think the fundamental point around "personal best interests" is that best interests could be looked at in a number of different ways and we want them to be looked at in the interests of the person in question and that is the reason we have made that recommendation.
Q171 Mr Bercow: I must say, I do not actually think we are greatly advanced or having much joy listening to the evidence you have given, but Paul Burstow beat me to it and posed the question which was very much in my mind. Presumably your problem with the concept is clear enough and, therefore, you want to make it in practice specific rather than unspecific, personal rather than amorphous, yet for all that, if you will forgive me saying so and this is intended to be constructive, it seems to me that the information does more to obscure than it does to clarify. In fact if we were to be persuaded that "personal" was not just a sort of emotional cushion, but something rather specific and practical, I think we would need more and better examples than what seem to me is the rather vague notion you have just advanced. I am sorry if I am being incredibly unfair or if colleagues think I am being very obtuse, but for me as a lay person it does not really advance matters at all. It is an additional word, but not an additional reason.
Mr Broach: There is an example, another one which may help. People with autism, many of them experience sensory oversensitivity. They are very, very sensitive to touch and may feel things far more sensitively than others do and, therefore, their treatment should take into account that sensory sensitivity. It is a similar example, I suppose, to Richard's around the fear of needles, but perhaps a more general one for my client group. Therefore, in a general best interests sense it may be appropriate to treat them in a certain way, but you would want to take account of their personal best interests and look at their personal circumstances which included this sensory oversensitivity and, therefore, a certain other type of treatment may need to be found.
Q172 Lord Pearson of Rannoch: I wonder if I could take you back to that category of people Mr Kramer referred to earlier with severe learning disabilities or mental health and, therefore, intellectual disability or impairment or handicap, whatever you want to call it. I think you indicated that changes in behaviour might indicate what people want. Of course that may be or may not be and it would depend on the individual, I suppose, but if we take clause 4(2)(d)(ii), it says, "In deciding for the purposes of this Act what is in a person's best interests, regard must be had to (d) if it is practicable and appropriate to consult them, the views of (ii) any person engaged in caring for him or interested in his welfare". In those circumstances, where do you put the family in the pecking order, as it were, if there were to be a disagreement between family members who cared for him and thought they knew him best and the professionals? Do you have a view on, all things being equal, whether the family's views should come first or the professionals'?
Ms Morgan: Clearly if someone has profound learning disabilities, the family are usually their strongest advocate and the people who have their interests at heart, usually, and, therefore, they need to have a strong say. Also in our work we have looked at the needs of people with profound learning disabilities and their wishes can be also ascertained alongside people who know them well and also by finding ways of communicating through objects of reference, using a coat to say, "We're going out", that sort of thing, and using pictures, sometimes using sign language depending on the people themselves. What I think would be also important and I feel we will be talking again about later is that sometimes there is also a need for advocacy to balance out the interests of the person and the family if there is disagreement and that is very, very often the family where someone has a profound learning disability who would be likely to be their focus.
Mr Broach: In terms of how the Bill would work in a situation where carers and professionals were in dispute, all of the organisations in the Making Decisions Alliance or the vast majority of these represent both carers and people with impaired capacity and one of our fundamental principles was that carers should have the right to be consulted in the decisions taken on behalf of the person they cared for.
Q173 Lord Pearson of Rannoch: That is family carers?
Mr Broach: That is right. If there was to be a dispute, then this Bill provides mechanisms, such as the court of protection, to resolve those disputes and it would be impossible to say that professionals or family carers should take the lead unless one of them has formal powers set out in the Bill such as the powers of a deputy or an attorney.
Q174 Baroness Fookes: I was unconvinced yesterday and I remain unconvinced today that the word "personal" adds anything whatsoever to the terms of the Bill, but I understand what lies behind it and your concern that the best interests should be secured, but it seems to me that your concern about the needles is fully dealt with under 4(1) and (2)(c), that past and present wishes and feelings and other factors which should be considered totally covers the question of how you dealt with a great fear of needles. Would you in fact be happier if there were a code of conduct or codes of practice attached to this which would perhaps expand on what we have under clause 4, the best interests, and, if so, would you be interested, willing or able to give some kind of outline, not right now, but have you given any thought to codes of conduct in any detail?
Mr Broach: Yes, we have. In terms of the detail of their contents, our focus has primarily been on the Bill to date and codes of conduct around best interests would be absolutely essential, and before that, as was set out in answer to Stephen Hesford's question, a code of conduct and assessment of how clause 2 would be put into practice would be very necessary. I think that certainly some of the subclauses around best interests do focus attention again on the individual. If I could just pick up that point about past and present wishes and feelings, we could go back again to the evidence given yesterday about the need for advance statements to have significant priority in the Bill because at the moment they are just grouped in amongst other potential expressions of wishes and feelings and actually if they were in there, then I think the focus on the person may be delivered through that route more effectively perhaps than just the addition of a word to the test.
Q175 Baroness Barker: I too for the last couple of days, because of this word "personal", have been confused, although I understand what you are trying to get at. However, I have a deep fear and I would like your reaction to it, which is whether it is conceivable that the inclusion of the word "personal" sets out on the face of the Bill an almost inevitable conflict between the individual and those around him. I listened very carefully to what Ms Morgan had to say, that people who live with people all the time who have limited capacity often are best placed to understand their function over a long period of time, but can you convince me that by trying to do well for these people, we are not setting up that conflict?
Mr Kramer: I do take your point that there is a difference of opinion in terms of the terminology and the impact it can make. I think just building on the previous question, what seems to be inseparable from the Bill is a change in attitude and approach which may need to accompany it. Yes, in terms of the term "best interests" it is in the Bill to take into account past and present wishes and other factors which would be relevant, but that is assuming that the Bill would be applied in practice and that will demand a change in terms of culture and attitudes. I think that is why my last attempt to make the case for "personal" is that it will exercise the minds of people and help create an atmosphere to change the culture. We have agreed, I think, that we need to rethink it because we accept the points which have been raised by the Committee today.
Ms Morgan: If I can just add one more thing about "personal", the White Paper Valuing People of 2001, a core part of it is personal-centred planning, so for people with learning disabilities a personal-centred approach is really there in the culture and being developed in the culture and for that reason I think it is consistent. I know it is not legislation, but it is a policy paper and for this particular group I think it is consistent with what is said in that White Paper.
Q176 Baroness Barker: I would like to know, in your opinion, if the word "personal" did not appear whether the whole best interests approach should be abandoned in favour of the principle approach which was taken in Scotland? That is a big question, I know.
Mr Broach: It is, but could I just attempt to answer your last question one more time. Conflict is the point, conflict between interests, and how that fits in with best interests. That is precisely why we think that the word "personal" needs to be added because if there is a conflict, and in reality there are conflicts between informed people, the professionals and the person themselves, then it is the person's best interests which should be at heart, so that is our final plea perhaps for the word "personal" to be included.
Q177 Chairman: Are you saying that if in fact the principles in the Bill and the codes of practice were extremely well drafted, that would meet your concerns?
Mr Broach: It is possible. We would want to think about whether essentially we prefer the Scottish approach or the English approach, bearing in mind this discussion. We will write to you on that.
Q178 Mr Burstow: Moving on to clause 6 of the Bill and the general authority, we took some evidence from the Alliance yesterday on this, but it would be useful perhaps just to build on that and seek some further clarification. We have had representations from some self-advocacy groups like People First and they have told us that they see the Bill as meaning that people with disabilities would be bossed about and controlled about even more than they are already and they go on to express concern about the fact that there appear to be no mechanisms for complaining about or challenging decisions which have been made on their behalf. In evidence we had last week from the Scottish Law Society, we were told that this would be used retrospectively as a justification for what has occurred. What do you think could be done to meet those concerns from People First and the concerns from the Scottish Law Society about the introduction of this wholly new idea of a general authority?
Mr Kramer: The starting point in terms of People First's concerns is that I think there was some concern that the accessible version of the Bill in fact did not explain the term "general authority" which was an issue which has led to a lot of concern amongst self-advocacy groups, and they feel very suspicious about why an accessible version of the term "general authority" was not referred to, so that is one concern. The other concern is about being clear what the general authority is for and the parameters for that and I know that the people from the Scottish Law Society were concerned about the general authority per se and I think it would be useful to explore the case for the general authority and then perhaps to look at the safeguards which may be needed. Their concerns about people not having to justify actions at the time a decision is made, but only when it is challenged, we do share those concerns and that is why we think there need to be additional safeguards. Would it be helpful if I take you through the argument about why the general authority?
Q179 Mr Burstow: It perhaps would be helpful if you could say something about what the safeguards should be to allay that concern.
Mr Kramer: In terms of the need for a general authority to act, I think many organisations representing carers have been concerned that they are unsure about how to make decisions which represent the views of people who lack capacity and they want clarity about what day-to-day decisions they can make without going to the courts for formal authorisation, so the general authority is positive in the sense that it will dispel the doubts and confusion from carers about what they can do. What it does not do is really set out what the limits are to the general authority at all and that, I think, is the major concern that ties in with People First and the Scottish Law Society. I think the point is that when the idea for the general authority was set out in the Law Commission Report Who Decides, it was felt that it would actually give recognition to day-to-day decisions and that they would be distinguished from more formal arrangements for authorising decision-making and that some decisions which would be reserved to the courts and others taken out of the court system altogether and that this Bill does not really clearly set out the limits of a decision that can be taken under the general authority. Therefore, in terms of the safeguards, I am slightly reluctant to talk about terminology because of personal interests, but I think it should say the "general authority to act reasonably" is the starting point because that in itself sets out the safeguard of the basis on which decisions should be taken, which is reasonably. Yes, it does say that in the rest of the clauses of the Bill, but I think it is very important that it says that in the terms of describing the general authority and how it would work. Then I think the scope of the general authority needs to be more clearly defined in the Bill. Now, part of that can be dealt with in terms of codes of practice and that might be very helpful in terms of changing practice in terms of carers and involving people in decision-making. Some other aspects are in terms of recording the general authority and recording decisions so that a person who is making a decision is able to justify the decision. That is particularly pertinent for care staff where there are already mechanisms whereby people can record decisions that they have made and, therefore, justify their decision. Another way of doing it is thinking about how can this Bill minimise opportunities for conflict and how can it maximise opportunities to reach agreement, and the problem is that the only way to challenge that general authority is to go to the court of protection, so other safeguards, such as recording decisions, looking at mediation and alternative dispute resolution, they are factors that provide extra safeguards. I do not know, Stephen, if you would like to add the specific restrictions that you want to see.
Mr Broach: Again I need to set this out in context. The general authority in this Bill attempts to do two things. It attempts to provide the framework for the day-to-day decisions that Richard has outlined. It also attempts to give an emergency authority and many of the questions yesterday focused on what would happen if the emergency authority was not possible. I think it is very important that those two aspects are dealt with separately because it may be impossible to do both in the context of the general authority. In terms of day-to-day decisions we want the focus to go very much back on to the sorts of actions and decisions that are set out in the explanatory notes, things like cooking someone breakfast, taking someone out for the day, those sorts of general everyday decisions, and we thought about it in terms of the significance of the decision and also the length of time that you have to make it, so if the decision is not that significant, it is reasonable to take it under the general authority regardless of time. However, if you have a really significant decision such as where someone lives, how they are going to spend their days and indeed medical treatment, it is not reasonable, in our view, for those decisions to be taken under the general authority unless there is a pressing need for it to be done so and that need is in the person's best interests, and in those cases if a decision is taken under the general authority, then the need to log them and record them so that the decision can be challenged afterwards becomes even more paramount, so there is a second set of circumstances which you may want to question me about.
Q180 Baroness Fookes: I have considerable sympathy with your view that the general authority is really much too general, but in addition to day-to-day decisions and emergency decisions, there is that range of major decisions which may not be emergency, but nevertheless have to be made, like a change of housing.
Mr Broach: That is exactly right.
Q181 Baroness Fookes: This is, I think, what you are saying. How do you think it would be possible to frame the Bill to reflect this?
Mr Broach: Well, we have thought long and hard about this and what we have started off by trying to do was to create categories of decisions that should be excluded from the remit of the general authority. The problem with that of course is where do you draw the line and for some people decisions like that are much more significant than others. By actually setting out, for instance, where someone lives as a decision, it may be appropriate in certain circumstances, say, if a person has always lived with their family and their family moves house, you are changing the setting, but you are not changing the place that they live in terms of being in their family home, so it becomes very difficult to frame it in legislation and that is why we thought about significance and time as the two key factors which determine whether a decision under the general authority is reasonable or not. The other set of decisions we do want excluded are medical consent. We do not think that carers should be able to give decisions that amount to consent to medical treatment under the general authority and instead those decisions should be reserved to the medical practitioners, but the carers should be absolutely consulted by the medical practitioners which is the duty under the best interests.
Q182 Baroness Fookes: All medical decisions because it might be something very minor or it might be something exceedingly major and there is a great difference?
Mr Broach: That is right. It is consent that we have focused in on, so anything where the patient is required to give consent. It is also very important to remember that the general authority should not, must not and cannot apply to anyone who is not incapable, exactly as we were talking about in that best interests do not apply to anyone who is not incapable. Another restriction should be an absolute duty to look at whether the person has capacity and at the moment it specifically suggests that the general authority is subject to section 4, best interests, and we think that it should be subject absolutely to section 3, the presumption of capacity, and section 2, how capacity is assessed.
Q183 Baroness Fookes: If, for example, somebody had a verruca on their foot, it is not the same as having a heart by-pass, is it?
Mr Broach: No, absolutely. The other thing there is that the medical professionals in both of those situations would be able to take the decision because they have a duty of care and they would have a duty to consult the family that were involved if the person cannot and of course the person themselves even if they can or cannot give a decision. Our second argument is that those decisions taken under the general authority, because they have to be taken quickly, should still be lodged with the court of protection so that they are officially recorded and can be challenged at a later date.
Q184 Mr Burstow: In the explanatory notes which you referred to just now, it gives some examples around "personal" where it might involve touching, not invasive medical intervention, but touching where consent cannot be given because the person lacks capacity. Are you saying that those are things which should not be subject to general authority, but in fact should be subject to some other process outlined elsewhere in the Bill?
Mr Broach: We made the distinction between routine medical treatment and consent for a specific treatment which is new to that patient, so if a routine medical treatment is to be administered, then that is appropriate to be given under the general authority.
Mr Kramer: That is making a distinction between the day-to-day care of somebody which would come under the general authority which you I think you were referring to and that would be the day-to-day work of support staff, the professional, in terms of looking after somebody who may lack capacity which would come under the general authority.
Q185 Mr Burstow: Therefore, from the evidence that your colleagues gave yesterday, the trigger for all of this would be a care conference?
Mr Broach: Absolutely.
Q186 Mr Burstow: I think the concern I still have, and I have not really heard you offer any reason why I should not continue to hold this concern, is that it is the informal arrangements, the arrangements which happen now and will continue to happen probably in ignorance of the law where no such process has been gone through at all. What do you think your proposals of having a trigger mechanism will do for those people? Are you effectively, by proposing a trigger, criminalising those people who will be taking those decisions?
Mr Broach: What we are trying to do is to expand on what "reasonable" means in the context of the general authority, so if a person was in a care home, it would be reasonable for a care conference to take place. If a person is cared for at home by their family and is not in contact with services, and this is very important for my client group because many people with autism are not in contact with any services at all, then it is reasonable for the carer to assess the person's capacity to the best of their ability, support them to make decisions, and to record that they are operating under the general authority so that if they are challenged, they can explain why they have made those decisions and in that context that would be reasonable.
Mr Kramer: Subject to that, informal carers are making decisions every day and they are complex and multiple about washing, feeding, dressing, what to do during the day, so we are not saying that each and every decision has to be recorded and each and every decision has to be separately justified with a separate assessment of capacity for each decision, particularly where those day-to-day decisions are very extensive, but what we are saying is that we hope that what the general authority will actually do is encourage the carer to think, "Well, how can I involve the person in the decision? How can I maximise the right of the person to make the decision that they are capable of?" So, if the general authority had the proper safeguards, it actually could enhance people's rights and not take them away from them.
Q187 Lord Rix: Did you consult with self-advocacy groups during your deliberations? They came along to your meetings.
Mr Kramer: Some self-advocacy groups such as People First decided that they did not want to be part of the Major Decision Alliance largely because the Major Decision Alliance campaigns for legislation and supports in principle billing legislation and People First do not, but we have had meetings with self-advocacy groups and, only last week, the Department of Health organised a meeting which brought together a wide range of people, professionals of different organisations and self advocates to discuss the Bill. I do think it is important that the views of self advocates and carers are engaged as part of the Committee's inquiries. I think it is important to hear the views of self advocates who are supportive of legislation and those who have concerns but, in terms of our work, we have tried to involve them.
Q188 Lord Rix: So, you think it would be advisable if we could possibly hear those witnesses?
Mr Kramer: Yes, absolutely.
Chairman: We are having People First, Changing Perspective and some other people as well.
Q189 Baroness Fookes: I am not quite clear as to when you are recommending that there should be a recording of the application of general authority and when not. You have mentioned that all the multifarious small day-to-day procedure need not be the subject of formal record, so where do you draw the line?
Mr Broach: What I think we need to come back is that anyone using the powers in this Bill should be able to justify them. So, if you are claiming protection of the general authority, you would need to be able to justify its use. That does not mean, as Richard has said already, that you have to justify that you used it on Thursday to take someone for a walk, but you would have to be able to explain why the person in your care is not able to make a decision for themselves, and then you have to be able to justify that your decisions are reasonable. So, it is about recording, to the extent that you feel necessary, information that will allow you to make that justification.
Q190 Baroness Fookes: Normally, recording means something written.
Mr Broach: Yes, but we are not necessarily making that argument. We are saying that the person making the decisions has a responsibility to justify that what they have done is reasonable.
Q191 Baroness McIntosh of Hudnall: Can I just ask you whether this would be a reasonable reclassification of what you said. Given that day-to-day decision making is not practicably subject to being written down, what you would presumably be concerned about is that, in the event of a challenge, anybody who has taken a decision on behalf of somebody who lacks capacity or is alleged to lack capacity can give an account of that decision.
Mr Broach: Absolutely.
Q192 Baroness McIntosh of Hudnall: Therefore, the responsibility on the carer is not so much to record their decision as to be aware of what decision they are taking.
Mr Broach: Precisely.
Q193 Baroness McIntosh of Hudnall: And to have a reflective ability to recall it later. Is that right?
Mr Broach: Yes and to be able to demonstrate an understanding of the principles that allow them to claim the protection of the general authority.
Q194 Baroness Fookes: In your written evidence, you suggest that the phrase "... or person reasonably believed that he lacks ..." should be omitted. Could you justify that to us.
Mr Kramer: I think there was concern over the word "believed" because it suggests a lower threshold to reasonable grounds or reasonable judgment. So, there is a concern that the term "belief" by applying a lower threshold may mean that the need to assess capacity and support people to make decisions could be circumvented in some way. I think the term "belief" is the concern. It does not suggest an element of objectivity that is needed. One approach would be to omit the term at all and the other approach would be to bring a sense of objectivity by having reasonable grounds or reasonable judgment. We do think that "belief" has a different meaning in law.
Q195 Baroness Fookes: If it were to be omitted, would this not leave some carers in a very precarious position legally, particularly if they took some sort of emergency action or even, as was suggested yesterday, an accident and emergency department visit?
Mr Kramer: In terms of emergency actions by health professionals, I do not think it will affect that because a decision in an emergency would be made under a duty of care and it would be limited to interventions that will either prevent a deterioration or improve someone's health. So, I do not think that the term "reasonable belief" itself will have an impact on, say, a health professional's duty. I do not think it is the trigger point. I think a health professional will make an assessment and will make that act in their best interests. So, I do not think that the term "reasonable belief" in its omission or inclusion will actually affect that relationship.
Q196 Baroness Fookes: No, but it could certainly affect other carers in different situations, could it not?
Mr Broach: Our arguments on that would be that an assessment of capacity is no more than a judgment in any case and that we should be able to justify how we reach that judgment but, by including reasonable belief, it implies that in some way something else is absolute and we would take great issue with that.
Q197 Baroness Fookes: Would you be happier if it stayed in in what I might call a "beefed-up" form?
Mr Broach: How would it stay in in a beefed-up form?
Q198 Baroness Fookes: As you were the one suggesting that it should be omitted, I leave you to suggest how it might remain.
Mr Kramer: We suggest a beefed-up approach would be reasonable grounds/reasonable judgment because that is a much more objective approach than a subjective belief, so that would be an improvement in direct answer to your question.
Q199 Baroness Fookes: Obviously I would not hold you to it right now because I am asking you to do it off the top of your heads, but something of that sort would remove both your anxieties?
Mr Broach: It would send a clearer signal but it was not possible to use a general authority as a carte blanche which was what it was described as.
Chairman: You can always write to us afterwards if you have any ideas.
Q200 Stephen Hesford: May I just continue on that. Could you foresee a circumstance where a person had a reasonable belief that something should be done that they did not objectively believe or hold the view that they reasonably believed? What are the circumstances in which they would not themselves objectively hold that view?
Mr Broach: We are dealing with a client group who are born with conditions that will impair capacity in adult life, and carers of people who are born with a low disability or with autism will have been with that person all the way through their childhood and into their adulthood and I think that many of those carers will not consider the possibility where, at 18, suddenly that person will be able to make decisions for themselves and therefore they believe it is completely reasonable to say, "I have cared for this person throughout their life and therefore I will continue to do so and I will continue to make decisions on their behalf." We would challenge that. We would not accept that.
Q201 Stephen Hesford: If that were taken to its logical conclusion, that would not necessarily be a reasonable belief.
Mr Broach: Yes, indeed, the reasonableness of it would certainly be challenged, but we are asking for that problem to be omitted from the Bill.
Q202 Stephen Hesford: In law, the phrase "reasonable belief", which is used a lot, is in fact an objective test.
Mr Broach: And, as was described by our colleagues yesterday, our concern is how the Bill will be used in practice in that carers may see themselves as being people such as, "I am a reasonable person and I believe that what I am doing is perfectly acceptable."
Q203 Stephen Hesford: This is actually quite a tough test for a carer to undertake.
Mr Broach: Our position is that we would prefer a slightly tougher one.
Chairman: We will now move on to court of protection.
Q204 Lord Pearson of Rannoch: Do you feel that there are sufficient checks and balances on the face of the Bill in relation to the powers of court-appointed deputies?
Mr Broach: Yes.
Q205 Lord Pearson of Rannoch: Will the court of protection be sufficiently accessible to those with mental incapacity?
Mr Broach: I will take the deputies question first, if I may. Our colleagues yesterday outlined that the Bill was in accordance with the court of protection's duty to investigate conflicts of interest when deputies are appointed. For example, if a care home manager was already the deputy for five of his residents and a sixth application was made, we would want the court of protection to investigate whether that was appropriate. We also want to see a clear link to the protection of vulnerable adults registers being established and Criminal Records Bureau checks. We have said very clearly in our written evidence that we do not think that deputies should be able to give authorisation for the withdrawal of artificial food and hydration, unlike our position on lasting powers of attorney because there the attorney is at least given that authority by the person when they have capacity. Those are the points that were made yesterday, but I would like to make some additional points. Firstly, our experiences we have seen so far in Scotland suggested that families are being encouraged perhaps to apply for wider powers than they need because it is seen to be more convenient for deputies to be appointed across a very wide set of grounds. The Bill itself precludes that at 16(4) but we want to make sure it is very clear in guidance that the deputies should only be appointed with the narrowest possible remit and indeed for the shortest possible time, if that is appropriate for the person. An area that was not touched on yesterday at all was appointeeship and, with the Bill creating deputies to deal with a person's finances, we then have potentially the double situation where appointees exist governed by a completely separate set of regulations to those who are managing a person's affairs as a deputy. So, we think that appointees should be brought in to the scope of this Bill. Our final concern around deputies is that the borderline between the general authority and the occasion when you would apply to become a deputy is very unclear at the moment because, with the general authority being so broad, we do not really see many situations where a family or carer would feel the need to apply to become a deputy. That is a problem which is again a reason why the general authority needs to be more circumscribed.
Chairman: We will now move to withdrawal of treatment. I am sure you will not be surprised to learn that we have received an enormous amount of evidence and submissions and letters on the whole subject of withdrawal of treatment, past directives and past orders etc.
Q206 Baroness Knight of Collingtree: Up until now, we have been dealing with people in whom you are interested when they are well and in normal life environment. Can we move on to the question of when they are ill. As my Lord Chairman says, we have had an enormous number, almost an unprecedented number in my experience, of letters expressing concern on this matter. Do you agree that the definition of "medical treatment" should include the provision of artificial nutrition and hydration? The nutrition and hydration is not the artificial part, it is conveying the nutrition and hydration. Do you see that that should be medical treatment or not?
Mr Kramer: We are going to repeat very much what was said yesterday in terms of, is artificial nutrition and hydration medical treatment or not? The view that was expressed yesterday and indeed we are giving today is that it is medical treatment and that you make a distinction between that and basic care. We also acknowledge that decisions on withdrawing artificial nutrition and hydration raise very difficult ethical personal issues and there are points of views and I know that the Committee have received huge representations. So, decisions on withdrawing artificial nutrition and hydration in cases where somebody lacks capacity are decisions that need to be taken very, very carefully and that, in circumstances where there is a complete inability for someone to have any physical or emotional experience at all in terms of their function of the brain where there is no activity in the cortex, so that their brain is not functioning in terms of understanding and interacting with their environment, and where there is no prospect of recovery at all, then the safeguard is needed in terms of withdrawing artificial nutrition and hydration. I think the point that has been made by the Scottish Law Society and by the MDA yesterday is the concern over this issue having undue prominence in the discussions on this Bill when this Bill is about principally supporting people to make decisions. In any event, I think it will strengthen the right of carers to be involved in medical decision making, strengthen the right of the individual to do so and make sure that health professionals are more accountable for the decisions which they are making, which I think is in the interests of all parties because health professionals not only expect their decisions to be reviewed but they also want to have greater certainty in terms of the decisions they do make.
Q207 Baroness Knight of Collingtree: That is very clear except for one point that you raised. I was a little surprised that you feel that the decision as to whether or not a person wished to live was a rather minor decision. I would have thought it was a major decision.
Mr Kramer: I do not think I have said that. I accept that these decisions are very, very serious. We are dealing with decisions on withdrawal of artificial nutrition and hydration. I think that they are very, very serious decisions and that they need very serious decision making, but they are seen by the MDA as a medical decision.
Q208 Baroness Knight of Collingtree: Yes and that was the question I asked you. Now I would like to ask whether you think that it should be classified as medical treatment when a patient is able to take food or water in a normal way. Should the ordinary business of eating be called medical treatment?
Mr Broach: I think we would refer you back to the answer that was given yesterday.
Q209 Baroness Knight of Collingtree: I am very interested in what was said yesterday but I am more interested at the moment in what you say.
Mr Broach: Our position is that basic care, which includes provision of food and fluids by normal means if you like, should not be covered by advance directives and by lasting powers of attorney - that was the position that was given yesterday - and that therefore that they do not constitute medical treatment.
Q210 Baroness Knight of Collingtree: Do you think that the provision of basic care such as foods and fluid be excluded from the scope of an advance refusal or from the powers of attorneys or deputies to refuse treatment?
Mr Broach: Yes.
Q211 Baroness Knight of Collingtree: Finally, I would like to ask you this and this is a very important question indeed. In what circumstance might you consider that starving a patient to death through the withdrawal of artificial nutrition and hydration would be in that patient's best interests?
Mr Kramer: I think I have set out the criteria in terms of when the decision of withdrawing artificial nutrition and hydration would be taken in the best interests where there is complete inability to have any physical emotional experience whether in the present time or in the future because there is no activity in the cerebral cortex and there is no prospect of recovery. Subject to that, the health professional will have to make that decision and seek second opinion for making the decision.
Q212 Baroness Knight of Collingtree: You will be aware that there are now in production by some groups cards like donor cards which state perfectly clearly that the patient, if unconscious, still wishes to be given facility to live insofar as he or she can. Would you allow credence to be accepted on a donor card like that?
Mr Broach: Yes and I think that is a very helpful point to make because we are answering today for people who were born with incapacity and who cannot plan for their future incapacity. If you have capacity and you wish to make a positive advance statement of that sort, much as you are able to make an advance refusal, then you should be able to do so and we think that the Bill should include advance statements such as request for treatment, which is the point that we were making earlier.
Q213 Baroness Knight of Collingtree: I can only say that I am grateful for that reply but the question of best interests is not quite the same as was covered in the first point. As regards the question of a person being starved to death or dying from lack of liquid, it is very difficult to imagine any circumstances when dying of thirst could be actually in the best interests of the patient concerned.
Mr Kramer: Inevitably on these issues because there are huge ethical, moral and personal interests, one's personal perspective does come into play and I think that is why people have different views. In terms of technological development, it is possible to prolong someone's life indefinitely through artificial nutrition and hydration, even where there is no prospect of recovery and even where there is no activity in the brain. That is why decisions on withdrawal of artificial nutrition and hydration are important and that is why there need to be important safeguards, but there is a concern about artificially prolonging someone's life, prolonging someone's life in an artificial way, and not allowing people to die naturally. That is my personal perspective. I know that Hazel will want to give another personal perspective, but I think it is important to listen to different views.
Ms Morgan: The issue of safeguards is of enormous importance. We are talking about people who are very, very vulnerable, incapacitated and possibly unable to make decisions. My perspective comes from a personal one because my son actually received nutrition and hydration through peg-feeding in the final months of his life, he having been born with learning disabilities and having had severe strokes. So, I am speaking personally here. It is of the utmost importance that people with learning disabilities and people who find themselves in this situation have sufficient safeguards in order that their lives are not put at risk, and I do have a very serious concern about this for obvious reasons. I also would like to make the point that there are quite a lot of people with severe and profound learning disabilities who live with peg-feeding and I think there is a danger that we are thinking about dying rather than about living and I do think that this is also an important issue. My son was able to live for another 11 months with this feeding, it was not withdrawn, and we enjoyed life together during those months. So, I think there are some enormously important issues and that safeguards have to be very, very, very, very tough.
Mr Broach: Just to bring us back to try and give the whole MDA perspective because obviously you heard the group yesterday and us today. The key answer to the question, "When would it be in the person's best interests to have the nutrition and hydration withdrawn?" is, "When they have expressly wished it to be so when they had capacity." So, that is an absolute position of making decisions of balance. In terms of our group, the issue is far more complicated because people are unlikely to be able to make those decisions for themselves. However, having said that, there will be many people within our groups who can express their wishes or feelings in advance statements and perhaps potentially even in advance directives and I think it is really important that we do not lose sight of the need for positive advance statements on medical but also on other issues because I think they are a very valuable way of recording a person's wishes and feelings.
Q214 Chairman: I am a little puzzled about the distinction that has been made between the artificial provision of nutrition and hydration and the natural provision. Is the answer in the answer which your colleague gave of activity in the brain? Clearly, if you are able to take food and to eat naturally, there will be activity in the brain presumably. Whereas, if you are being artificially fed ... What is the logic behind the distinction between the artificial provision and the natural provision?
Mr Kramer: As a non-doctor, I will try and answer that question. My understanding is - and, please, do correct me if I am wrong - that somebody can receive artificial nutrition and hydration for a short period of time. They may go into hospital for problems with their stomach and they need artificial nutrition and hydration for a short period of time and that may actually benefit the individual. Artificial nutrition and hydration is not just provided in those end-of-life situations where somebody cannot function in terms of their brain and there is no prospect of recovery. It can be used as an intervention at earlier stages.
Q215 Chairman: I have someone in my family with motor neurone disease who was fed and drank artificially for something like a year but his brain was still active.
Mr Kramer: My personal experience is of somebody who was receiving artificial nutrition and hydration but chose - he had the capacity to do so - not to do so. He could have gone home and he would not have died immediately but his health would have badly deteriorated. He took a decision - it was his decision - that he felt that his quality of life and his meaning in life would have
been better if he did not continue to receive that artificial nutrition and hydration. From my limited experience - and this is again from very much a personal perspective - it is not death that is a fear for people but the process of dying and the difficult experience through that.
Baroness Knight of Collingtree: Could I clear up one matter very quickly because it was brought up twice yesterday and has been brought up today. The House of Lords accepted last Friday in giving a third reading to a Bill that said any person who asked not to receive artificial nutrition and hydration should not have to do it. So, can we move that point out of any future discussion because that is agreed on every side.
Q216 Mr Bercow: I think I am clear about Mr Kramer's answer to Baroness Knight, but I would like to do more than think, I would like to be certain, so let us establish this for the avoidance of doubt. If someone gives advance notification that he or she definitely wishes to have his or her life prolonged by artificial hydration or if someone gives no indication either way, he or she, as far as you are concerned, should receive absolute protection. Certainly that would be my instinctive view, am I clear that that is yours?
Mr Kramer: That is a good question. If the advance directive is not clear and does not mention artificial nutrition and hydration, then the decision will be best interest and involvement of the individual or those close to him. The harder point to your question is this, if it is specifically mentioned in an advance directive and whether it has to be followed in all circumstances. I think - and this is my personal view - that it would be possible for a doctor to review that decision where the alternative is artificially prolonging one's life when there is no prospect of recovery in the terms I have suggested.
Q217 Mr Bercow: I must say that, having felt momentarily uplifted by your previous replies, I am really very anxious now. That is not your fault but it seems to me that we are in danger of moving away from the primacy of the ethical principle towards the triumph of administrative convenience and, dare I say it, even considerations of the money men at the Treasury. That is what worries me about this. What I am getting, Mr Kramer, is that, first of all, advance notification you fear ... Perhaps I should not use that evaluative term. Point one, advance notification you suggest will not be an absolute protection. Point two, since you referred to considerations of family members, can I put it to you that the person who is the most vulnerable of all is a person who might well have given advance notification but who has no close family relatives and whose earlier judgment is likely to play very much second fiddle to the current view of a particular doctor.
Mr Kramer: Yes. If it is in someone's advance directive, it will have to be taken into account. What I am saying is not that a doctor will see the decision to say, "I want artificial nutrition and hydration in any event" and the health professional says, "I am going to go back on that" because that cannot be done, but there needs to be a time of review of that decision and, if those safeguards are met where there is no prospect of recovery and there is no activity in the brain, then I think that, in those circumstances, it would be permissible to say that the right to artificial nutrition and hydration on an indefinite basis is not absolute.
Q218 Mr Bercow: You would be content with that?
Mr Kramer: This is again my personal view so, please, do correct me. I would not want you to think otherwise. The power at consideration is to give respect to that individual's views and, if that is reflected in advance, that should be reflected in practice. However, there has to be a decision in terms of what is in that best interests and whether it is in the best interests of a person to keep someone artificially alive in circumstances that I have suggested where there is no prospect of recovery etc. I think these things are very difficult and do need to be resolved in a proper way in terms of a second opinion and maybe a decision of the court of protection, but I would not be uncomfortable in saying that there should be a right to keep people alive indefinitely when there is no prospect of recovery and there is no activity in the brain.
Mr Broach: I think we need to clarify what the Bill says because the Bill at the moment only provides for advance refusal to the treatment which are absolute statements unless they are undermined -
Q219 Chairman: We are coming on to that.
Mr Broach: We would argue that there does need to be provision for positive advance statements on the face of the Bill, but the defence, while it should not be because it is medical care, is that you cannot select treatment, you can only consent to treatment that is offered to you. That is the argument that has been put to me as to why advance statements cannot have the same level of authority in the Bill as advance refusals have, and that is a legal point which I do not have the answer to but that is the argument that has been made.
Ms Morgan: The MDA has said it is generally applied. It is so difficult to get a common view because it is such an emotive and difficult issue. For people who are judged to lack capacity, there is a real, real danger here that decisions are going to be made and it comes back to the best interests point and to think very much of the best interests of that person/individual in that situation. Where there is no hope of recovery is a very broad phrase. There can be limited recovery and sometimes there can be recovery so that the artificial nutrition and hydration is not necessary. Sometimes, people with profound learning disabilities can live for years.
Mr Kramer: Yes, but we need to be very specific in terms of the safeguards. I take your point. You are not bound to detect a difference of opinion.
Ms Morgan: No, but I just wanted to clarify it.
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 has.
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 17,000 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-à-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 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?
Q240 Baroness Barker: Can I ask a question which follows directly from that and relates in fact to what you said. For some of us, the empowerment of individuals is an extremely important principle and one of the important principles of that is the principle that there should not be presumptions made against people in advance. My question to you is this: in putting forward proposals on assessment, which I would like you to come back to at a deferred stage, would you consider within that the issue of consent to assessment? I know that is not so pertinent to many of the people whom you are representing as it was to people yesterday, but there are key issues about people having capacity and moving to a state where they do not have capacity and that part of their transition is very important to them to maintain and to not have intrusions from the State because where I have profound disagreement is that it is always important that the individual is empowered above the State in these matters. So, could you take that and add that into the independence of advocacy services.
Mr Broach: Yes. We are dealing with the most vulnerable group of adults in our society and we are dealing with a history legacy of treatment for those adults which we have dealt with in the initial statement which does not meet with our expectations today and, yes, there will be the possibility of abuse in this legislation and that is why we think that the highest possible number of safeguards need to be placed on it. Then of course accusations are made about bureaucracy, but we think that the right to the person to make their own decisions and the person's interests should be paramount. So, absolutely we acknowledge the concerns that people will be pressurised or forced into doing something that is against their will within the context of this Bill. However, it provides for that and indeed there is a criminal offence that relates to it and there are provisions in the general authority particularly around the use of force that is completely unacceptable. In terms of the need for independent advocacy, that is again absolutely central to our concern. We are all here trying to balance the interests of carers and the people with disabilities or other conditions, and hopefully the majority of cases their interest will be in line but there are many instances where they are not in concord. It is not just the statement, you have to worry about family disputes and tensions and, in that context, independent advocacy is absolutely essential.
Q241 Baroness Barker: That is why the issue of consent to assessment, which nobody else has talked about, I think is very important and I would like you to think about that.
Mr Broach: It will be interesting for our group too because there will be people who are very vocal, very verbal and very articulate and able to say that they do not want their capacity to be questioned or challenged and, to an extent, that right should be respected.
Q242 Lord Rix: There was some wording in the Journal of the Royal Society of Medicine which was quite useful. Would it not be helpful if this decision to make living wills official, as it were, be in the guidance of the Bill with the appropriate wording which will be not capable of getting misconstrued?
Mr Broach: Absolutely. Guidance in this Bill will be absolutely essential and that will be one of the key aspects to it.
Chairman: I am afraid that we are now technically inquorate because we require a certain number of Members of both Houses to be present. I was about to suggest anyway, as we have been going now for two hours, that we finish there. You have mentioned advocacy and I think it would be extremely helpful to us if you could put something in writing about the importance of advocacy and how you see it working. As regards the questions, which you have seen but which we have not reached, could you reply to those in writing. May I conclude by thanking you very much indeed for a most helpful session.