Taken before the Joint Committee on the Draft Mental Incapacity Bill
on Tuesday 16 September 2003
Mr Paul Burstow Barker, B
Pearson of Rannoch, L
Memorandum submitted by the Making Decisions Alliance
Examination of Witnesses
Witnesses: MR CLIVE EVERS, Alzheimer's Society, MR SIMON FOSTER, Mind, MR ROGER GOSS, Patient Concern, DR ANDREW McCULLOCH, Mental Health Foundation, MS PAULINE THOMPSON, Age Concern, and MS KATHRYN WILLMINGTON, Help the Aged, Making Decisions Alliance, examined.
Q92 Chairman: Thank you all for your written evidence, which was very helpful, and for taking time to attend. The session is open to the public and it may be recorded for broadcasting. There is a verbatim transcript of the evidence which will be published with the Committee's report and you will be asked to check the text for accuracy, although the unedited text is put on the parliamentary website. If there is a division, I will have to adjourn the Committee for about 10 or 12 minutes. I think there should be a note of the interests of the members which are relevant to this inquiry. Representatives of the departmental and Bill team are present as observers. We are not required to report on the White Paper on mental incapacity; we are asked to report on the draft Bill and that is why the questions have been structured around the structure of the Bill. Perhaps you would like to introduce yourselves and if you wish to make a short, opening statement you are free to do so.
Dr McCulloch: I am Andrew McCulloch. I am the chief executive of the Mental Health Foundation which is a charity working with people of all ages with mental health problems and also people with learning disabilities. I would like to say how important this Bill and this issue is for the service users, carers and donors to our organisation. We are aware of various issues coming up, including people who are not being cared for properly, whose wishes are not taken into account in terms of their practical, daily living and we are also aware of instances where people are subject to abuse or have had their assets taken away from them by others. It is a very important issue.
Ms Thompson: I am Pauline Thompson. I am a policy officer at Age Concern with specific reference to community care finance. My interest here is about the financial issue and how we can use this Bill to learn from what has happened and move on from UPAs where, when they work well, they work tremendously well but, when they go wrong, they go very wrong; and how to have the right checks and balances and how people who have lost capacity can get redress if anything does go wrong.
Mr Goss: My Lords, ladies and gentlemen, good afternoon. I never thought I would get the chance to say that. I am Roger Goss, co-director of Patient Concern. We are about gently nudging clinical culture away from its traditional mode of "we inform; you consent" towards a more patient friendly "we advise; you decide", in the case of those people who want to exercise that judgment. I have been involved with the subject of advance statements and directives for about ten years. I made an oral presentation to the then LCD Minister in response to the Who Decides? Law Commission report. As son of a Mance, I am very conscious of how sensitive the issue of refusal of treatment is. I would only comment that the only difference between groups opposed to this legislation and ourselves is that those groups feel they have a duty to enforce their convictions on everyone; whereas we believe everyone should have a chance to make their own decisions. If it would be of any value to you at some stage, Patient Concern specifically would like to suggest a couple of amendments that we think would improve the Bill.
Ms Willmington: I am here representing Help the Aged as a policy officer. We estimate that at least one million older people are directly affected by issues of incapacity and you can easily double that when you take into account carers and other professionals. We strongly support the implementation of this Bill with certain additional amendments, as suggested.
Mr Foster: My name is Simon Foster. I am principal solicitor at Mind, a mental health charity, so I have particular interest in the legal implications. The particular focus that we have is around people with fluctuating capacity where there are enormous issues raised for people who have capacity. If they lose it, they regain it again and the question is how to balance their own right to autonomy, to make their own decisions against the need for protection, where required.
Mr Evers: Clive Evers, director of information and education at the Alzheimer's Society, which is a leading UK care and research charity for all forms of dementia. We are a membership organisation with some 25,000 members who have written to us over the last ten years about many issues around capacity. It is important to note that there are some 700,000 people with dementia in the UK. Most of them are elderly but 18,500 are below the age of 65. People with dementia are living longer. People are living for up to 20 years. Carers continue to be the front line for looking after people with dementia and this Bill is very important because it will provide justification for the decisions that they have to take on a daily basis, but also important protection for people with dementia as well.
Q93 Chairman: I think you have seen the questions. If there are any questions that we do not reach or if there are any suggestions you wish to make to us in writing after the session, you are of course free to do so. Under the heading "Best Interest", does the proposed check list on best interest strike a balance between supporting the autonomy of the person with incapacity and providing them with protection and is the suggestion from the MDA that the "best interest" should be replaced with "best personal interest"? Is that just a question of semantics or is there something much more important beyond that?
Ms Willmington: One of our concerns about best interest is the issue that the person reasonably believes they lack capacity. Anybody can act in somebody's best interest if they really believe that person lacks capacity. We are concerned that this tips the balance in the wrong way. We feel it gives a presumption of incapacity and that goes contrary to the stated aims and principles of the Bill which have a presumption of capacity. It gives people the opportunity to say, "We presume that person ...", so I think we feel we would like to see that either removed from the Bill or amended to have sufficient safeguards. We felt that there should be included a reasonable expectation about a decision over whether the person is going to recover and be included in the check list of best interest. That is part of the decision in terms of safeguarding best interest. Our main concern about best interest is the conflict. You can get a medical best interest; you can get a financial best interest or a welfare best interest. This is why we specifically put in the point about having the best personal interest as some way of trying to resolve that debate and steer people when they are trying to resolve those conflicts about what is somebody's best interest, to be able to say it is what is best for that particular person, whether their financial, medical or welfare best interest.
Q94 Chairman: The intention is to treat each person as an individual so you would always be thinking about a best personal interest. Is it not just semantics?
Ms Willmington: It is about particular decisions where a doctor, for example, says, "I think I know what this person's best interest is." Somebody else says, "I think I know what this person's best interest is." It is about trying to make sure that the focus is shifted away from other people's interpretation of best interest towards their interpretation of what they perceive of that person. It is important that that word be included because of that.
Mr Evers: For example, the importance of personal best interest would be in relation to somebody with Alzeheimer's disease in a hospital setting or care home setting, where they may well be prescribed neuroleptics to control their behaviour. That may be in the best interests of other residents in that hospital or care home setting, but it is certainly not necessarily in the best interests of the patient.
Q95 Lord Rix: Does the draft Bill provide sufficient protection for the best interests of people with impaired decision making, people for instance with a learning disability, who then become more incapacitated by mental illness, dementia, age? Is there sufficient flexibility for changing capacity in the Bill at the moment?
Mr Foster: That is a very good question and quite difficult to answer until it is put into practice. Like any check list of best interests, the question is of trying to anticipate, trying to build in all the different factors, starting from the point of view of supporting the individual to make those decisions that that person can make, which must be the presumption. Where somebody has impaired decision making, they are not incapable of making any decisions. They are capable of making some and it is a question of trying to help and encourage people to make the decisions they can and then only looking at substitute decision making for those areas where the person is not capable. I would add the word "necessary" on the decision making where a decision has to be made, at clause 4, paragraph one. The Alliance is very keen on the whole on the idea of the general authority but subject to proper safeguards and checks, in order to enable that flexibility, where somebody's capacity fluctuates, where somebody is impaired in the first place and becomes additionally impaired as time goes on, who will have good days and bad days.
Q96 Mr Burstow: Can you give any examples from other pieces of law or judgments by the court where best personal interest has been defined? What would be the additional test that would enable you to distinguish it from best interest? In relation to the oral evidence we had last week, I was not here but I have read some of the unamended transcript. There was a question there about the Scottish experience of having a list of principles at the beginning of the legislation. I wondered why that was not something which you had looked at and, if you have looked at it, why you think that best interest is more preferable than best personal interest.
Mr Evers: We have looked at the Scottish legislation quite carefully. Much of it we support. In particular, we draw attention to the least restrictive option. That is something that could easily be added, so we are aware of that.
Ms Willmington: We still prefer the concept of best interest or best personal interest than what exists.
Q97 Baroness Fookes: Could I query this illustration you gave that maybe the best interests could be served in the home where the person might make a nuisance of themselves rather than the person themselves? I would have thought the Bill made it abundantly clear that the decision must be made in the person's best interest. How possibly can you substitute the home for that? It seems to me it is already absolutely clear.
Mr Foster: I used to be a child care lawyer and the wording of the Children Act is rather different language. It talks about the welfare of the child being the paramount consideration. Once you start talking about best interest, it is very tempting to say it is obviously in the best interest of that person that there is harmony in the home, that the neighbours are happy etc. It is very easy to lose the focus on the individual who is being safeguarded, rather than the smooth running of the home, which of course is beneficial to the interests of the person as well. Trying to get that balance and trying to put the focus very firmly on the individual and how that then squares with the other residents etc. is the point the Alliance is trying to bring out.
Baroness Fookes: I am not convinced.
Q98 Baroness McIntosh of Hudnall: I wanted to go back to the relationship to the Scottish legislation because it feels to me as though best interest is a volatile concept and we keep coming back to this issue. The Scottish legislation provides that there has to be a demonstrable benefit to the individual flowing from any decision that is taken on his or her behalf. You presumably considered that as an alternative. Can you tell us why you continue to believe that best interest, albeit amended, is the right language, as opposed to any other?
Ms Willmington: It is the devil and the deep blue sea. I am not sure we felt that there was one magic solution. We felt this was possibly the best. We were happy that this did reflect the ideas and underlying principles. I know there is concern about how paternalistic it sounds and that is one of the reasons why we felt we should add the best personal interest as a way of trying to counter that.
Q99 Chairman: Which of the organisations works on a UK basis as opposed to only in England? Are any of your organisations experiencing the Scottish Act?
Dr McCulloch: We do work on a UK basis. I have not had many reports yet of people experiencing the Scottish Act. Its coverage is not going very far in terms of depth and therefore one would not necessarily expect that at this stage. The proposal that we have here would be more all embracing in terms of day to day practice.
Chairman: As we go through the questions, if there is anything which occurs to you where the experience in Scotland would be helpful, perhaps you could tell us.
Q100 Baroness Barker: Could I probe a little more your exception to the phrase "reasonable belief"? I agree that it is a phrase which can be interpreted in two ways. One is an excuse but one is a requirement to demonstrate the basis upon which somebody believes something to be in somebody's best interest. Why do you take a negative view of that phrase?
Ms Willmington: Because of the first interpretation and the concern that it would be used and we are concerned that people would interpret it in a way in which they could justify actions. It gives them more ability to flexibly interpret it. The problem is that capacity is only ever a question of judgment and we were concerned that because it is such a difficult thing to measure it is always a question of subjective judgment and we were concerned that, by leaving it open that way, it gave people the opportunity to interpret it very flexibly.
The Committee suspended from 4.00pm to 4.10pm for a division in the House
Q101 Baroness Fookes: You advise that the phrase that a person reasonably believes that a person lacks capacity should be removed from the Bill. What protection would there then be for somebody acting in the best interest, say, in an accident and emergency department or some other immediate emergency?
Ms Willmington: We thought about that issue and our feeling is that whoever was acting in that situation, if they were challenged, we would want them to be able to show what steps they took to ascertain the person's capacity, opinions, views, best personal interest etc., given the bounds of what would be reasonable to expect in that situation and also the necessity and emergency of that situation so there would be protection for that person in that situation. We would not be entirely opposed to the idea of it being amended. We are looking with the eyes of the general public as to how they would interpret that phrase, rather than it being in a person's own judgment, if they have evidence of an objective judgment, for example. I think we are completely aware that in situations of emergency and necessity people are going to have to be able to act. There will always be that justification and reason because people have to act sometimes very quickly.
Q102 Baroness Fookes: You will surely need in that case to present us with some form of wording because I cannot quite see what would replace this, bearing in mind that I think "reasonably" does offer protection and indeed a restriction.
Mr Foster: The difficulty that we have had with the phrase "reasonable belief" which is something that lawyers are used to is that that phrase is not necessarily so readily available to people who are not used to deciphering the language. It is very tempting to say, "I believe that I am a reasonable person and therefore it is a reasonable thing to do." It may be a semantic point but we are thinking, in terms of a form of words, about a belief based upon objective evidence or something along those lines. It is tempting to say this could be put into a code of practice. I think we are all agreed that a code will be terribly important for the nuts and bolts. I believe that we are saying this needs to be much clearer on the face of the Bill, to bring out the fact that it is not simply the subjective view of the individual; it is based upon something objective.
Q103 Baroness Fookes: It will be others, will it not, who will judge whether the individual was acting reasonably?
Ms Willmington: We are concerned that people do not use it to justify actions. We are trying to make sure that people interpret this Bill correctly and they do not use it to justify doing things that they should not.
Q104 Mr Burstow: I would like to move to clause 6, the general authority, and the issues that arise out of that. We have had in submissions reference to concerns by self-advocacy groups who are worried that it is going to be difficult for people to complain if they disagree with the choice that has been made on their behalf under the general authority. We were wondering if you could say a little more about what mechanisms could be included on the face of the Bill that would enable people to challenge decisions that have been made under the general authority.
Dr McCulloch: We welcome the principle of the general authority but at the moment, as it is couched in the Bill, it is something of a carte blanche to people, particularly in situations where they are exercising it on a continuing basis, rather than the emergency situation we have just been discussing. We would suggest that there are a number of measures that could be taken to ensure that the individuals' wishes are given more weight, so that the individual has more opportunity to challenge that authority if they feel they need to. One of them would be to have some sort of competent authority to which a person could go, or to which a concerned person could go to trigger an assessment. It might be appropriate for that authority to be a social services authority, but that is a matter for discussion. It is also important that the mechanisms set within this Bill are embedded within the real care processes that exist out there at the moment, processes like the care programme approach, the care planning, multidisciplinary team meetings and the like. Patient records, whether they are written or electronic, should be used to enable these processes to be kept track of. There are a couple of other mechanisms which would be extremely useful. One is that we are advocating the use of advance statements and that would enable someone to give a clearer, positive expression of a particular wish that could be taken account of. We are also particularly keen on the development of advocacy services. They would be very relevant in this particular situation, where someone feels that perhaps the general authority has not been exercised properly. They may not even have the words to express that in a bureaucratic or legalistic way. If they have an understanding lay advocate that they can turn to, that person can help them to access either the statutory mechanisms or the mechanisms within the NHS or local authorities to raise that issue and ask for an assessment or trigger some sort of complaints mechanism. It is about thinking through what sort of processes are needed to support the individual in the real world. I do not think we can have a general assessment of absolutely everybody by a local authority. The numbers are just too big. We have to think through what a realistic mechanism might be.
Ms Willmington: Our vision would be one in which the general authority was placed within the existing mechanisms described so it would be discussed and reviewed regularly. The important thing about that is it is not left to the closed relationship between the carer and the individual; it is discussed as part of a multidisciplinary team meeting. People discuss their feelings about whether it is appropriate and whether they think it is being used appropriately. Obviously it is not going to be relevant for everybody because not every single person who has capacity problems is part of the single assessment process. Unfortunately, we do not have the answer to that but we feel it is one way of trying to embed it in the existing mechanisms.
Q105 Mr Burstow: Picking up on the point about this being a question of real processes in the real world, one aspect of that might be the current no secrets guidance from the Department of Health. Would you be recommending that that would need to be redrafted and, as it stands, in terms of its implementation, does it provide an adequate framework in which the real world processes can be relied upon to pick up this sort of abuse?
Ms Willmington: There needs to be linkage specifically with the no secrets. One of the things we suggested was a duty upon local authorities to monitor general authorities. That would be a very easy way of linking the two things.
Ms Thompson: It is a financial point but it is an important point that we have a large number of people in care homes who, because of an accident of having more than £19,500, they might lack mental capacity. On the whole, the local authority is very loath to make the arrangements for them. Therefore they do not come under care management and the Bill might help to strengthen this, if one did have that sort of linkage. There should be a duty on local authorities to keep a weather eye on some of these people who are in care homes. I understand through the National Care Standards Commission that there is an issue here. We have a large number of people who might lack mental capacity but, because the receiver has made the care arrangements with the home, they are no longer under local authority care management because they just happen to have more than 19,500.
Q106 Baroness Fookes: I am still worried about those who are not living in care homes or any sort of residential institution. What about the person in a private home whose only contact perhaps is with a carer with the general authority with whom they disagree or want to make a complaint about? How on earth do they get to any outside body, including an advocate?
Ms Willmington: That is when it comes down to public education. I think it is important that those mechanisms exist. I am a very strong advocate for advocacy, particularly for that scenario. In a perfect world we would be able to reach every single person, but we are living in the real world and all we can say is that it is important to have as many mechanisms as possible to try and catch as many people as possible.
Q107 Baroness Fookes: Supposing you had a concerned neighbour who was not a carer but who was worried about what was going on next door. How would he or she tap into the system?
Mr Evers: There are systems at the moment to do that through the no secrets guidance. Social services have a clear responsibility for the protection of individuals at home, particularly elderly people. Through that mechanism an alert could be made through social services and the system would pick up through the case review that we have already discussed.
Mr Foster: My sympathy is with you in the way you phrase the question. I can only speak from my perspective but we are terribly concerned about those people who have lost capacity and have regained it. We are outraged at what has been done supposedly on their behalf. I do not wish to speak for the Alliance but Mind would be very please to see ultimately some sort of resource to a court, where appropriate. How that would work in such a way that would balance the legal flexibility and freedom of the carers to make proper decisions while not exceeding their brief is an enormously difficult matter and one that we would be happy to give a view on at some later stage, if appropriate.
Q108 Mrs Humble: Returning to your comment about any system being placed in the real world, one reality now is that many especially older people, people with disabilities, have direct payments and employ their own carers directly. People with their own resources have been able to do that for many years. Given that the relationship of the carer to the individual being cared for is one of employer and employee, how do you see that fitting into these proposals? Do you have any comments on that situation?
Ms Willmington: One of my understandings is that somebody who at the moment experiences direct payments has to have full capacity. What could happen is that a carer or somebody else in the family could go through the direct payments process on their behalf. My sense is that that probably would not be a direct problem in terms of the Bill. If somebody who lacked capacity did have direct payments, there would probably be at least one other significant person who would, I imagine, have one of the mechanisms within this Bill that they would be acting under.
Q109 Mrs Humble: That would also cover somebody who might have capacity when they started in the system but who may lose capacity later and they could then enter into arrangements that are elsewhere in this Bill?
Ms Willmington: The reality with direct payments is that although social services are not directly providing the service, they still have a duty to review. At some point they would be looking at the mechanisms within the Bill.
Ms Thompson: You have to have the capacity to manage direct payments yourself or with help. Social services are still responsible for the care that that person gets and because they are making payments for that person they have to make sure they are being spent giving them the care they need.
Q110 Baroness Knight of Collingtree: Ms Willmington said something a short while ago which I thought displayed a very touching faith in the ability of local authorities. She said that local authorities could be made to oversee the decisions, as it were. I do not know whether I am getting cynical but in my experience in recent years it has been increasingly difficult for the local authorities to deal competently with all the care problems they have with children and certainly with elderly people in their areas. I cannot quite see how it is going to be feasible to put another load on them and how would you think they would be able to cope if they had one?
Ms Willmington: They will probably give evidence on their own behalf. My belief is that they are dealing with the problems that the lack of this Bill causes. From their point of view, they would probably be very relieved that for the first time there are mechanisms they can use to help them do their jobs professionally. I would hope that they would positively welcome this as a way to help them ease their workload in a very positive way.
Ms Thompson: Local authorities already have the lead on the no secrets, so they should have the mechanisms set up. We would like to see more clearly how they are working.
Q111 Baroness Knight of Collingtree: There is nothing else you would feel that they would have to have at their fingertips in order for them to take on these extra duties?
Mr Evers: They would certainly need to have a clear understanding of the mechanism of this Bill. There is a significant public and professional education job to do on how this will work and we may come to that later on, but that is crucial.
Q112 Lord Rix: This question really should be addressed to the witnesses tomorrow but people with learning disability and self-advocate groups are very suspicious of the professionals representing them, the parents representing them, the carers representing them and this Bill in particular. Does the same apply to self-advocates with mental illness, say?
Dr McCulloch: I think it does. I fear that that is partly due to the context of this Bill, coming as it does after the proposals on mental health which have been greeted with almost universal dismay by patients, users, professionals and voluntary organisations. That is rather an unfortunate context, where there has been an opportunity to debate it in detail and where service users who are working with the Mental Health Foundation, some of whom are particularly interested in the issue of advance statements, see this Bill as an opportunity to enhance their rights and enhance the ability for self-representation. Some mention of advocacy on the face of the Bill and a commitment of resources by government for advocacy would go a massive way to reassure service users that government is serious about enhancing people's rights, rather than taking rights away. I think the door is very much more open on the Incapacity Bill than it is on the Mental Health Bill. There is a need to put some clear blue water between what is happening here and a debate on mental health. Support for advocacy would be a very strong way to do that. I do not know if that makes any sense.
Q113 Lord Rix: Absolutely. What are the chances, do you think, of us increasing the availability of advocacy or self-advocacy?
Ms Willmington: It is something that I would like to see happen. Everybody is campaigning for it. I do not think there is a need for this to be separate from advocacy generally. Obviously people will need special training but there is not a need for a specialist advocacy service. If possible, we would like to see local authorities having a duty to provide an independent advocacy service as a right. Not all local authorities would have to start from scratch with that. Some of them would be able to use existing advocacy services. It is not as huge as some people perceive. You may think I am going back to semantics again but another thing is the very title of the Bill. We think people would feel much more positively about it if it was the Mental Capacity Bill, because that seems to reflect the principle of supporting decisions, rather than the Mental Incapacity Bill, which seems to be more about presuming incapacity.
Q114 Chairman: Should local authorities be provided with specific powers to investigate allegations of abuse and to provide protection for vulnerable people, which I believe was originally suggested in the Law Commission's report?
Mr Foster: Yes.
Q115 Mr Burstow: I wanted to pick up on the point about some of the ways in which the Bill talks about people who lack capacity and some of the assumptions. Could you develop a little the point made in the MDA submission about, rather than assuming that the general authority is triggered, that it is just there and available to be used, that instead it should be triggered in some way? Can you explain to us how you would envisage it being triggered and what the mechanism would be to enable that to happen? Are there any other restrictions that you feel should be placed on the general authority?
Ms Willmington: We feel the triggering should be part of a case conference or review discussion. Rather than one person making that decision, it is recorded in a multidisciplinary way and that gives the opportunity for people to challenge it and to be aware that it is happening. We feel quite strongly that certain decisions are not appropriate to be made under the general authority, really serious, life changing decisions. There are not sufficient safeguards within this. One decision can potentially change somebody's life. We felt decisions about where you live, about significant changes to your care, financial decisions of any magnitude should be excluded from the general authority. Carers and family friends should not be allowed to consent to medical treatment. Doctors should be able to do that but with additional safeguards. If they are consenting to medical treatment, it should be part of a clinical decision and they should have a duty to consult families and friends. If they cannot get consent doing that, they should have recourse to go for a second medical opinion and, if not, there should be a case for protection.
Q116 Mr Burstow: In the scenario you have just described, some might be concerned that one of the consequences is that in situations of urgency and emergency decisions do not get taken at the speed necessary to save life.
Ms Willmington: I am very pleased that you have brought up that point. I meant to add that we felt there would be a clause so that in emergencies people could act and they would not need to go through that process. Obviously there would have to be a balance between the emergency of the situation and whether that would be appropriate.
Mr Foster: What I am picking up is that the honourable members of the Committee are as concerned about the general authority as we are. On the one hand, we think it is a very valuable thing. Frankly, people have been making decisions on behalf of somebody without capacity without any legal framework or justification going back as far as whenever. At least it is regularised and people should know what the limits are. On the other hand, it is enormously difficult to regulate and preserve the flexibility that is necessary. I think the questions that have been raised are very serious and very important and valuable. As I think you were suggesting, an awful lot of people are incapacitated. A decision needs to be taken rather quickly: here is somebody who is not currently in contact with the authorities of whatever sort and it cannot reasonably be left. It is highly desirable that it should be triggered by a conference, wherever possible. Then it can be looked at in a regularised way, rather than letting somebody do their own thing.
Q117 Mr Burstow: With regard to workload and the capacity of the authorities to take this on, in terms of case conferences, you are presumably describing an additional task, because there will be many cases where decisions have to be made under the general authority that would not have ever come to a case conference under current arrangements. Do you really think there is the additional capacity? I know from my own constituency mail bag that case conferences get cancelled or never quite happen or not everyone is there, but the decision can take place through such a forum.
Ms Willmington: If this is one way of necessitating case conferences happening, it is another inadvertent benefit of the Bill. The alternative is that people just have these decisions made for them. They have no opportunity to challenge them or discuss them. It is very much in closed situations rather than in these multidisciplinary ways, where you get other people prepared to speak or challenge them. That is a very positive thing.
Q118 Lord Pearson of Rannoch: When you envisage these conferences with professionals and so on, they are speaking on behalf of the intellectually disabled and people with severe learning disabilities and not so much on behalf of the mental illness group or elderly people who become mentally incapacitated. Where do you see the wishes of the family in all this, particularly the family carers who may have been looking after some of these people for a very long time and who just may know them better than the whole case conference put together? Where do you see the influence?
Ms Willmington: It is central. That is one of our reasons for having a case conference, so that it can involve anybody who has something to contribute and so that decisions are made which do include those sorts of discussions.
Mr Foster: This goes back to the earlier question about where is the focus and the best interest and indeed is it on the individual.
Q119 Lord Rix: Surely parents and carers normally are automatically included in all case conferences?
Ms Willmington: Clive is nodding his head here!
Mr Evers: Shaking it!
Q120 Lord Rix: Speaking personally, it certainly happens in my case, but it obviously does not happen in yours.
Ms Willmington: There should always be the opportunity for the individual concerned to state who they want, so obviously there may be times when they should not be and actually it is appropriate for them not to be involved. I think our concern, particularly with older people, is that reviews tend to be very much paper exercises that happen often in offices and do not really tend to consult people in a way that we would want. Now, somebody who has got full capacity and is articulate can challenge it, but somebody without capacity in that sort of situation does not have the recourse to challenge it.
Q121 Baroness Barker: Turning to lasting powers of attorney, in your submission the use of the word "parameters" rather suggests to me that you are not happy about the way in which this particular section has been drafted. I have noted in your submission that you have talked about issues such as checks and balances and tests of the immediate risk that we were talking about a moment ago. I suppose the issue that I want to focus on is the one that you have led us to which is really about the way in which lasting powers of attorney would be triggered, when and how. Clearly you do think that, as drafted, the lasting powers of attorney are too wide, so I suppose the logical question is how would you see them more closely defined?
Mr Evers: I am not sure if we necessarily think that the scope of the LPA, as drafted, is too wide. It is certainly appropriate in the sense that it covers a donor's personal welfare, property and specified matters. People will want to be able to choose the powers they require and this really also enables the donor to appoint more than one person to act for them both individually, jointly or jointly and severally, so I think that there are some controls in that sense. We would certainly like clarification on the parameters of LPAs and, for example, clarification in relation to clauses 16 and 17 in the Bill on personal welfare, property and affairs, so some further discussion and clarification in relation to that list would be helpful.
Q122 Baroness Barker: Bearing that in mind, do you think that the exclusions as to who could be appointed an attorney are sufficient or not?
Ms Willmington: We basically would like to see some additions to that. One is that we feel there should be a duty on the court of protection to investigate if there are any potential conflicts of interest. An example that springs into my head is an example of a care home owner who takes out LPAs on all of their residents. At some point there has got to be something that triggers some concern about that because of the concern about undue influence, so we think that the court of protection should have that duty. We would also like there to be some sort of duty about them determining the appropriateness of the person in terms of checking against criminal record checks and also about the local authority, in the process of establishing the covert protection for vulnerable adults list, listing people who would be inappropriate then to act as LPAs, so obviously we would like to see that included as well.
Q123 Baroness Barker: Moving on from that, do you think it is right for a non-medically qualified attorney to override a professional clinical judgment or would you think that such decisions being made would be within the confines of what you have described as a case conference?
Mr Goss: I could comment on that one, if I may. I think the main point to keep in mind is that clinical judgment has its limitations. It is only a judgment and may not even lead to the desired clinical outcome, so bearing in mind that clinicians are rarely in a position to know the values of priorities and life experience of a particular patient, we think that the lasting power of attorney, if given that authority, should be allowed to override clinical judgment.
Mr Foster: The issue is the difference that we would see between the LPA and the general authority. The LPA is the person who is specifically chosen, an individual to represent their views and their interests and, therefore, we would be in favour of that person being authorised to make the sort of judgments that the individual would themselves make if they had the capacity to do so in that situation. Whereas the doctor might say, "This treatment is plainly in your best interests", I, as an individual, can say, "Well, thanks, I hear that, but I don't want it", and we think that is a reasonable distinction to make for the attorney as well.
Q124 Baroness Barker: I suppose a concern I want to follow up is that given that an LPA would have both financial and welfare elements to it as opposed to the old restriction, that opens up the potential for different people, for example, your example of care home owners, to have an interest in this that they would not have done under the old system. I wonder whether based on the old system of enduring powers of attorney you think that there needs to be a higher level of qualification for those acting as attorneys or not.
Mr Evers: Possibly introducing a higher level of qualification would be helpful, but one of the other proposals in the Bill which would act as a check is the requirement to notify an additional third person beyond the donor and the donee, so that should provide some extra safeguards as well.
Mr Goss: I think this is a good point. We would be very inclined to advise donors that it would be essential to think very carefully if they want a lasting power of attorney to have both a financial and a welfare voice on their behalf or appointing two people for the separate roles. I think this is probably wise for many people and of course you can get the situation where there will be an overlap. For example, if it comes up that you have to sell your house to finance care home costs, then it would need to be a joint decision if you have appointed two LPAs.
Q125 Mr Burstow: I just wanted to pick up issues around conflicts of interest, particularly where there were both financial and welfare responsibilities being given, and I take the point which has just been made in response to the last question. The scenario I had in mind was one where the local authority is given either responsibilities as an appointed deputy or a hospital is the LPA. The local authority as a whole has a fiduciary duty to its local taxpayers to get the best for its revenues and it also has the legal right to have regard for its resources when it makes decisions about care services. How could a conflict arise between those duties and the duty that this Bill would confer upon a local authority if it took on a deputy or an LPA responsibility?
Ms Thompson: I suspect that a local authority would only take on a deputy role because currently local authorities do not become enduring powers of attorney. I think there is a real issue here and there always has been an issue in relation to local authorities acting as receiver when they are both the collector of finances as well as making sure that the person does have their money and this has been a longstanding problem. I think it is an issue that really does need to be looked at very carefully when we are dealing with both welfare and financial decisions when they do have such a vested interest in both and I think it is something that the Bill does need to address both in relation to local authorities and also in relation to those people who are perhaps going to be the attorney, have been chosen by the individual, but obviously are those people who are likely to benefit from the estate and there do need to be regular checks on how that is working and that is very much a court of protection/public guardian office role.
Ms Willmington: I think our position is that we want more emphasis on reviewing and checks and balances and safeguards rather than carte blanche excluding groups of people because I think what we do want is people to be able to choose who they want as their LPA. Obviously in some groups they will actually want someone who works in the local authority, so we did not want just to say that no, we do not want these people, but it is about making sure that if there are these people with interests, there are sufficient reviews and checks and balances and safeguards so that that would be monitored and hopefully protected from.
Mr Evers: We also understand that there are random checks on LPAs taking place in Scotland as the legislation has been introduced and that is something that could also be considered here.
Ms Thompson: And also the requirement on an LPA to keep financial records as well so that those are there so that if there was a random check, there would have to be records to show how the money had been spent. I think there is another issue in relation to LPAs that although currently the list for EPAs is a long, long list of people they would have to contact, we do have some concerns about the Bill as it is currently written and we feel that there should be one other party notified on application because it could be so easy for there to be undue influence on the person who might be having an eye to the finances and is wanting to take over as an attorney and if there is nobody else contacted, then that could all go through and I certainly think that the public guardianship office does need to look very closely at those where there is no other person named. It is a question of how one actually does that and whether you could actually get a situation where the donor does have someone that is checked without necessarily the donee knowing who that person is.
Q126 Laura Moffatt: I just want to press you a little bit more on the concept of splitting the responsibilities of welfare and financial matters. I want to ask you to expand a little more on what you were talking about, having a proper appeal against an LPA by somebody who may have a temporary lack of capacity and then returns to capacity. Do you see a scenario, if you had a divided responsibility, where someone who is the subject of an LPA would say, "I think you made the right financial decisions for me, but I think you made the wrong welfare decisions"? It seems to me that there could definitely be some difficulty there. Perhaps I could just ask you to expand a bit on how you believe an appeal would work in that situation.
Mr Evers: I think it is a very searching question and there is a lot more to be done on that. I do not think at the moment there are necessarily sufficient mechanisms in the Bill for relatives of somebody who subsequently becomes incapable to appeal. There are questions about whether they would have to go to court to revoke the LPA and, if so, what would the costs be of that. Again there are timing and support issues and I think that again is another argument for the need for advocacy support on it and issues like legal aid would also help. Arbitration is one possible solution to that, but I think there are a lot of questions which still need discussion around that.
Ms Thompson: Also the very fact that you have fees for registration is going to raise issues. The idea is that an LPA would be registered normally before the person lacks capacity, so there are two issues about that. First of all, with the fees as they currently are, people might not be too keen on registering something which they might never need to use because they might never lack capacity, and they think they will leave it and they can register it if ever they do need it, so you are back to the old EPA issue about who decides when you lose capacity enough to get it registered. The second point is another financial issue of if it is registered, the banks on the whole will not be seeing the individual, whether or not they are dealing with the finances of somebody who has just given express permission for somebody to go out and get £1,000 out of their bank account and is perfectly capable of doing that or somebody who lacks capacity completely, whereas at the moment with the way that EPAs work now, the bank is not there when they are needed when someone clearly lacks capacity to help process things, so I think there is a big issue around how the banks would deal with that.
Mr Foster: To come back to the question you were asking about, challenging one decision rather than another, it seems to me that there are three areas of challenge. One is to say, "I actually have capacity to make my own decisions", and that is, I think, ultimately a matter for the court and in fact clause 22 of the draft Bill does talk about powers of the court in relation to the lasting power. The second would be the fitness of the person if you thought the individual was making a succession of decisions that you thought would instantly disqualify them. That is a more difficult issue and it would be hard to challenge on one small point. It may be necessary to lump them together and say, "This makes the person palpably unfit". At the moment the Bill has no mechanism for dealing with that. The third would be that if there was a major decision to be made, and this is what we talked about earlier on, what are the boundaries, if you like, and what should be referred to the court for a decision, like major invasive surgery as an obvious example and selling a house would be another.
Q127 Lord Pearson of Rannoch: I wonder if you think there are sufficient checks and balances on the face of the Bill in relation to the powers of court-appointed deputies and, secondly, will the court of protection be sufficiently accessible to those with mental incapacity?
Ms Willmington: It is very similar to what we said about the LPAs, that there should be a duty on the deputies to investigate conflicts of interest. We feel that also that needs to include the CRB checks and protection for vulnerable adults list. We also were concerned about the need or we felt there was a need for an independent assessment of capacity and one of the things that we did feel that was different from the LPAs was that actually deputies should not be able to make advance statements about the withdrawal of medical treatment, decisions to withdraw or withhold medical treatment. Whereas we felt we were happy with LPAs because they were nominated persons, with the deputies, because they were appointed by the court, we felt it would not be appropriate for them to make that decision.
Ms Thompson: There is always a problem with the very word "court" in that people think courts are for particular issues, so the court of protection so far is not a court that is well known, so there are some real issues about making sure that people are aware that there is this court there, it is for them, it is accessible, and they are looking at it being locally accessible, and that should very much be made sure that people can actually access it and that again links back to the legal aid question because at the moment issues which go to the court of protection are not amenable to legal aid on the whole. So there is a real need for an advertising campaign about the court of protection and how it works and making it as user-friendly as possible and informal as possible as well because I think there are issues about people actually thinking that courts are frightening places. On how the court is monitored, I would certainly suggest that there should be something like a forum of people set up where the court does actually report on a regular basis as to how it is being used and report also to Parliament and that there is feedback from these organisations to make sure that there is proper use of the court and people are actually able to access it. That would be very much done using voluntary organisations as well keeping an eye on this.
Ms Willmington: One of our concerns is that some of our suggestions mean that we would expect the court of protection to be very responsive and the time involved is going to be crucial in terms of how effectively people are going to use it. For example, we are suggesting that certain decisions be removed from the general authority and that becomes a single order of the court. One thing that we did suggest was a possibility is that if those decisions are not contested, whether that could be done by correspondence rather than an actual court appearance, so I think we were saying that decisions about responsiveness and timeliness will be actually really crucial in how effective this is going to be.
Mr Foster: There is no doubt that the Bill itself is not simply the Alliance's response, but I think the Bill itself necessarily requires a much greater development of the work of the court of protection. Speaking personally, I would be very happy to see some sort of local devolved jurisdiction for lesser decisions, sort of arbitration-type decisions, rather than necessarily troubling the High Court. I want to add one thing which is about advocacy and again we are coming back to the same issue. I think it is terribly important, and I have no doubt that members of the Committee are aware of this, the advocate's role is to help and support and it is not to provide formal legal representation. We would be very, very concerned if when the Bill went forward all the emphasis was put upon supporting advocacy and not on providing some sort of public funding for legal representation because they are two very distinct roles.
Q128 Lord Pearson of Rannoch: Speaking again on behalf of the severely intellectually disabled, supposing that the court has appointed a deputy over a family member who has been looking after his relative for a long time, but he is getting rather old himself and beginning possibly to face the next world, should there be a mechanism in the Bill for making sure that that system, whatever the way of life of that intellectually disabled relative might be, continues after the deputy dies or would it all have to go back to one of your case conferences?
Ms Willmington: I am not sure we have actually discussed that scenario, to be perfectly honest.
Q129 Lord Pearson of Rannoch: Forgive me, but it is a scenario that is becoming very relevant because a lot of the bulge, parents, if you like, now are beginning to die off and this is a real problem we are going to be facing in quite large numbers in the next ten or 20 years.
Ms Willmington: I think it is one of those opportunities where we see the role for advance statements because that is one way of people recording their wishes for as long as they need.
Q130 Lord Pearson of Rannoch: This would be the deputy recording because the intellectually impaired person cannot.
Ms Willmington: That is the difficulty, that there are always going to be people that this would not be appropriate for, but we would hope that at least some method would be made and hopefully with the aid of communication there should be at least some reference to preferences. One thing that we are really keen to say is that if people are actually unable to make decisions, it does not mean that they do not have a view and it is a difference between the two. It is still really important to record that view even if they are not able to make their own decisions and that is one of the crucial roles we found with the statements, so that could be the case in that situation, that the person might not be able to make decisions, but they can record a view and that view could be recorded and used in the future for ever.
Mr Foster: As a mechanical footnote on that, there is provision already in the draft Bill, clause 19, for the court, when appointing one deputy, to provide for a substitute deputy as and when necessary which might be a helpful thing for people to use.
Q131 Jim Dowd: Mr Foster, can I just bring you back briefly to a point you made a few moments ago. You drew the distinction between advocacy and legal representation. There will be occasions, I am sure, when advocates could provide legal representation, but do you think, for the sake of uniformity, that the two roles should be separated in all circumstances?
Mr Foster: I have quite a strong view about this, advocacy in the mental health area, and in fact we have a database, coming back to Lord Rix's point, where we actually attract 460 separate mental health advocacy organisations, so there is quite a lot of work out there. I think this is the answer, but then I will be corrected if not, that we see the advocacy role as being one of essentially facilitating communication to assist the person to put forward their views or to establish what their views are and then relay them. In other words, it is largely a communication and assistance role. It is not a role to give advice or to take forward actions, if you like, on behalf of the person which the person has not themselves authorised or is not inherent in what the person has previously said. I can well imagine a situation, again speaking personally, where the advocate was sufficiently armed with information to be able to put forward what their client, if you like, would like to happen, but the client is not in a position to put that forward themselves, but I do think that is somewhat different from a lawyer arguing to a legal brief with a duty to the court in certain circumstances which might override the duties to the individual client. It is a slightly different role and I think the point I was making, and I think it is a very fair question, was that there may be a tendency for financial reasons to put the emphasis upon advocacy and downplay the necessity for publicly funded legal assistance and we think this would be a very sad thing and contrary to the civil rights of the individual.
Q132 Jim Dowd: So you did separate the two specifically?
Mr Foster: Yes, I think they are separate roles and an advocate could speak in a public forum such as a court or other tribunal on behalf of the client if they knew what the client's express wishes had been in an advance statement, for instance, or if they had had sufficient discussion to know what the client wanted to be said, but I think that is a very different matter from arguing points of law and I would say they are distinct roles.
Q133 Baroness McIntosh of Hudnall: The draft Bill does make provision for advance refusals, but it is silent on any other kind of advance statement. Do you think the Bill misses an important opportunity there to clarify the law in respect of other kinds of advance statement, or should that be left to be decided by the courts on a case-by-case basis? Can I add to that a separate, but importantly related question which is about registration. Whatever kind of advance decision the Bill eventually provides for, and at the moment it is only to do with the refusal of treatment, should those decisions be registered in writing? At the moment the Bill does not provide for that, but the question of whether or not it would be possible to establish the existence of an advance refusal without registration and written evidence seems to be a fairly obvious one.
Dr McCulloch: I think the advance statements are very important as far as people's freedom and dignity are concerned when they have the opportunity to make a statement, when they have capacity and when they fear that they are going to lack capacity at some point in the future. We come across numerous cases where people recover capacity and things were done to them that they wished had not been done. A very simple example I came across recently was of a client who was involved with a service who was a strict vegetarian and who was fed meat during a period of incapacity and then was disgusted to find out that that had been the case because she had deep beliefs against it. If she had been given the opportunity to make a statement to that effect, she would clearly have done so, so I think it can refer to a number of issues where someone might wish to be proactive about stating something. Clearly in an example like that it should be possible for a service to provide a vegetarian diet. We are not talking about a massive expenditure of resources in order to enable that person's wishes to be met and it is very important for that person, so we would very strongly advocate that some kind of advance statement be possible.
Q134 Baroness McIntosh of Hudnall: Just to be clear, you mean that you believe that there should be something on the face of the Bill to that effect?
Dr McCulloch: On the face of the Bill, yes, because I think at present clearly there is a common law ability to make an advance statement, but our experience as an organisation, and we have been undertaking research on this, is that there is not a very high degree of uptake by service users because they are sceptical because it is not enshrined in legislation and also that clinicians and care staff commonly disregard those statements also because they do not consider that they would have the weight or authority, so we think that there is enormous benefit from putting this on the face of the Bill. I think it would be a general view, but probably not an exclusive one, that that statement should usually be written down and placed in an appropriate place. Clearly some people may have capacity, but may not be able to write their own statement, in which case there needs to be a mechanism for the recording of that wish by another person.
Mr Goss: I think you asked the question of whether it is a missed opportunity not to have mentioned advance statements. The short answer is yes. We do think that those who wish to opt for all reasonable measures to be taken to prolong life must have an equal opportunity to make their views clear. This would not of course oblige doctors to use treatments they considered inappropriate, but would forestall misjudgments about quality of life issues. We believe that a request for treatment is just as important and relevant as a refusal in judging how best to care for an incommunicado patient. We want the Bill to embrace the needs of everyone, including those who want to be kept alive to the extent that its impact upon them is reasonable. We also believe that advance requests for treatment are a vital aid for the disabled in securing good care. Sadly, in our experience, from our helpline, e-mails and letters, some clinicians do deem the quality of life of the disabled less worthy of supporting. In terms of referral to the courts, statements are no different from a refusal in that disputes between interested parties at the end of the day have to be resolved in the courts. Now, as far as finding out the existence of either an advance statement or, more importantly perhaps, an advance refusal, we would confirm what my good friend has just said, that there ought to be a mechanism at least to lodge an advance refusal, particularly if it is made in writing, tape or audio form, and that there must certainly be an obligation on healthcare providers to check whether such a refusal exists. Refusal should not be invalid if not registered or lodged, but the education campaign should make clear the benefits of registering a written document. If the Bill is to achieve its purpose, it needs to minimise the scope for using administrative problems as an excuse to override a patient's instructions. Sadly, that does happen. An oral refusal should still be valid, provided it can be demonstrated that it is sustained and has been properly witnessed in the sense of having been heard, noted and logged. As to the question of how do you find out if you do not have a statement for registering, which I think you asked about as well, the short answer is: with difficulty. We recommend a legal obligation on clinicians to check with a central registry or a place where they can be lodged, and this is in addition to checking with the individual's GP and nearest and dearest. Unfortunately some people have neither. As a last point, a central register would at least offer additional protection against failures to identify the patient's wishes or instructions.
Ms Willmington: I would just add that making decisions has not actually gone as far as saying that we require a central registry. Our position was more that it needs to be logged and it needs to be logged with everybody involved in that person's care and we felt that the paperwork involved in a refusal should have a box which is ticked if there is an advance statement, so that should be part of the mechanism that it happens. We felt it was important as part of the law because we could then extend the clause which actually makes it a criminal offence to destroy or conceal an advance statement and that would give it much greater legal status and respect. We see it as a great opportunity for actually facilitating communication and discussion, that a lot of conflict results from situations which have not been discussed in advance or people have not communicated their wishes or views, so it is a great mechanism hopefully for preventing further conflict.
Q135 Chairman: I do not know if you saw the interesting article in The Guardian a few weeks ago by Jane Campbell, whom you might know. As you know, she is very, very severely disabled and she went into hospital with pneumonia and she was really very seriously ill. The doctor said, "I presume that you will not want to be resuscitated", obviously referring to her condition and disability. If she had made an advance statement that she wished to have resuscitation, under the common law that would apply now, would it not?
Ms Willmington: I think so, but I think our concern is that it would apply, but because it does not have the legal status and legal recognition, people would not actually feel obliged to act upon it.
Mr Foster: At the moment in common law that is the case, yes, and the question is to what extent you regularise it and put it into statutory form. Then there is the second question which is the process to be gone through to approve that, but yes, you are absolutely right.
Q136 Chairman: Presumably if in fact it was in the Bill and within the framework of law, then the doctors would not ask the question? They would not even assume that you would not wish to be resuscitated because the advance statement would have been made and protected in law.
Ms Willmington: Absolutely, because they would be able to refer to this advance statement and the situation would never occur.
Ms Thompson: I did actually see a film of Jane recently discussing that very point and it was incredibly powerful because she is a strong-minded lady and was too frightened to go to sleep because she was so worried about what they might do. I think if that could have reassured her, having it on the face of the Bill, knowing that she had got an advance statement would have made a big difference to her illness.
Q137 Mrs Humble: Can I follow up the point about registering advance statements and where you would register them and the problems that there might be with regard to data-sharing and the civil liberties issues. There have been developments over recent years as there is more and more data-sharing between organisations, but there are quite clear civil liberties issues there. You mentioned, Kathryn, the fact that all the people involved in the care of that individual should know whether or not they have made an advance statement, but I will put to you the situation, representing, as I do, Blackpool where lots of people come for their holidays. There might be an individual coming, accompanied not by their regular carer, but by somebody else who may not know about any advance statement. If they are taken ill, they could go into an unfamiliar hospital and the only way that a surgeon there would know about an advance statement would be if there was a central registry and the whole issue then is accessing that information, so as to how detailed the information would be on that registry, should it be that Mr, Mrs or Miss X has registered an advance statement or should it include details of it? Would that surgeon instead be choosing to act under a general authority of what they believed was in the best interests of the individual even if his or her judgment on that best interest might actually be at variance with whatever is in the advance statement? It could be quite complex. Do you think that there should be some sort of central registry and, if so, how much information should be on it and what restrictions should there be about access to it?
Ms Willmington: My understanding of our position as it stands is that we were talking about logging it and, therefore, logging it with the local care team. Really our concern was about data protection and how you would share that sort of information, but what we would be hoping is that people would then not only share that, but have that with them. Obviously there are always going to be situations then where they would be concerned about, "How will they know?" and I guess there is no definite resolution to that, but I think it is a double-edged sword. Do you go for a central registry and then have all the concerns about data protection? I do not know if people want to add to that.
Mr Goss: I think this probably falls into the category of that famous phrase, "One of life's insoluble problems".
Q138 Mrs Humble: But we are here to solve the problems and make recommendations.
Mr Goss: I will rephrase it to "soluble opportunities". I will be advised by my many friends on this, but if it is right to lodge an LPA and you do not run into problems of confidentiality in finding out if a person has got one, I am a little bit pressed to see why you would run into problems with an advance statement. Just as a matter of interest, at the moment, because there is not this facility, though there is in many states in the United States, a central registry for advance refusals, there are people who lodge them with an organisation called Medic Alert. Now, Medic Alert, you will be familiar with, is this organisation that helps people who may fall over in their home and it warns them. Well, they have provided a facility now where you can in fact lodge your advance refusal with them and they will supply you with a bracelet if you want which points out that you have an advance refusal or statement and how to get in touch and check it out.
Q139 Chairman: I suppose if we ever did get to the point where we had the famous smart card with all of our medical history on, that would be the obvious place to put an advance refusal or an advance statement.
Mr Goss: Yes, absolutely.
Mr Foster: There are two possible ways through this. We have done a lot of work around confidentiality and data protection is a real issue, but with the move towards electronically held records, I think this is possibly a transitional point where in five years' time, I would imagine, a surgeon in Blackpool wishing to operate on somebody they do not know would call up the medical records and if there is an alert, saying, "Advance Directive - click here" or whatever it may be, that would allow it. There is just one point, if I may, on the question of registration. Ultimately there is going to be a question of evidence. Is this advance statement, advance refusal available and can people find out if it is? The fact that it is involved in a central registry or appears in someone's medical records will be helpful from that point of view, but ultimately if a person turns up, they have been knocked over and in their pocket is found a statement, saying, "In the event of my not having capacity, I absolutely refuse X, Y and Z", or, "Please give me whatever helps me", that must be given the same validity as something that is officially lodged, I would suggest.
Q140 Baroness Knight of Collingtree: Could I say a couple of words on that last point because I know of one organisation already which provides people with a card which they carry, like a donor card, which seems a lot less complicated than having registers and all the rest of it, which says, "In the event of my becoming unconscious and being in hospital, I want to be kept alive". Now, that has got just as much status as a donor card and I think that is important not to forget.
Mr Goss: Absolutely.
Q141 Baroness Knight of Collingtree: The questions I really want to ask have been prefaced in the explanatory text prior to questions, "Following the House of Lords judgment in the Bland case, medical treatment includes the provision of artificial nutrition and hydration." Now, I want to make it absolutely clear for the record that that was the BMA's decision and it is not legal at this time, but the draft Bill, if enacted, would give the Bland decision apparently a statutory basis, and this is a point which is worrying a very great many number of people, and it is also the point at which my question falls into two parts. One is not only the provision of artificial nutrition and hydration through a tube down the nose or a peg in the stomach, but also even when patients are able to take food and liquids through the normal way, that also, since the Bland judgment, has been decided is medical treatment. In other words, when we all go for a meal, we are actually having medical treatment, which I am very concerned about, I may tell you. Is it your view that that definition of medical treatment should (a) include the provision of artificial nutrition and hydration and (b) the normal intake of food?
Mr Evers: This question is a very emotive question.
Q142 Baroness Knight of Collingtree: It is a very important one.
Mr Evers: It is very easily misinterpreted. The Alzheimer's Society and our counsel believe that it is very inappropriate for a person with advanced dementia to be given artificial hydration and nutrition solely for the purposes of prolonging life. The purpose should undoubtedly be about maximising the quality of life to the individual at that stage and the BMA, as you have said, have given guidelines on withholding and withdrawing treatment. We have serious, ongoing concerns about the frequency with which people in the terminal stages of dementia continue to be artificially fed and hydrated. It is important that we know that there are alternatives to that because when somebody can no longer eat or take fluids, then there are ways of one-to-one nursing, providing water, sips of water for the individual, sitting by the person and giving them basic comfort. These are real practical alternatives to the invasive approaches of tube feeding, so these are issues that we think need to be taken into account and there are options within the Bill to do that.
Q143 Baroness Knight of Collingtree: Before you finish, Mr Evers, you said "the quality of life". Now, that is one of the big problems, is it not, because who is to decide on a person's quality of life? If a person is paralysed, one doctor may say, "Your quality of life is so bad, you may just as well die", whereas the person who actually is paralysed may not think along those lines. Is that not a difficulty in saying that you decide by the quality of life?
Mr Evers: It is a difficulty, but we can also define quality of life. There is a lot of discussion and research into how quality of life is decided and, in addition, the opportunity for advance directives and statements whereby an individual can make provision for what they wish during those circumstances. Thirdly, where there is a close relative, that relative or partner will undoubtedly know how that individual would have wanted to be treated in those circumstances.
Q144 Baroness Knight of Collingtree: I am so sorry, but you are not answering the question I have put. The question I have put is: would you think it right to call feeding people or giving them water medically treating them? I did put it into two separate categories, one, if it is the peg or the tube and, two, if it is the normal way of eating. I just want to know whether you think that should be described as medical treatment or not.
Mr Evers: Medical treatment would include basic care. That is our understanding and basic care would include, as I have described, giving sips of water, giving comfort and that is what we believe should be included and the individual should have the option to have that made available to them.
Mr Goss: It is difficult to know where to step in on this one, but I will just offer a few thoughts that I think may bear on the subject. There is a great danger of allowing the issue of artificial feeding and hydration to get blown out of all proportion and hijack the Bill. Very few people, in our experience from our helpline, letters and e-mails, actually opt for this form of refusal. In any case, if I have read the Bill correctly, attorneys will only be able to make this choice if specifically given the power to do so under clause 10, provided of course that the BMA's plea for its removal is not accepted. I stand to be corrected by Baroness Knight because I am not a lawyer, but we thought that, though we are probably misinformed, artificial feeding and hydration is treatment and it is certainly invasive treatment. Now, it has always been recognised that we have the right to refuse treatment for any reason, for no reason or an apparently irrational reason, regardless of consequences. Now, it has been suggested that withholding artificial treatment, feeding, is euthanasia by neglect, as I think I saw the phrase in the questions. Well, we would only comment that withholding such treatment at the express request of the person involved can no more be classed as euthanasia by neglect than not amputating both legs of a patient with circulatory disease in order to preserve life.
Q145 Baroness Knight of Collingtree: That I fully understand, if anyone does not wish to be fed in that way, but I am still wanting an answer to the question because it is also the case that withholding food and liquid when anyone can take it normally is classified as medical treatment. Do you think that is correct or not?
Mr Goss: I can only speak directly for Patient Concern. We think that what one might term "normal feeding" is not medical treatment, but artificial feeding is medical treatment on the grounds that it is invasive and we have in fact in our organisation, sadly, either individuals themselves or more usually their nearest and dearest who have said that the individual has told us that if they had known what was involved with invasive, artificial treatment, they would have declined it.
Ms Willmington: My understanding of basic care is that it is about making sure that that person is comfortable and that everybody should always have access to basic care, so they should always be made comfortable and they should always have what we are talking about in terms of moistening of the lips and sips of water if that is appropriate, so our definition of basic care is anything that I would in my non-medical way term as good, palliative care really and that is about quality of care.
Mr Goss: Can I just add one further thought on the concept of basic care. It may be for consideration that this ought to be defined in the Bill and if that were the case, we would suggest that it has three elements. It consists of feeding those people who are able to accept food and liquids in the normal manner rather than by invasive treatment, it would include basic hygiene because, after all, that is in the individual's best interests, if only for the benefit of staff and other patients would you really have to do that, and, lastly, pain relief. There is a difference of opinion on the question of pain relief. Some people take the view that it is an integral part of palliative care and, therefore, should not be optional. On the other hand, we find people who take the view that they would rather remain conscious as far as possible and, therefore, do not necessarily want full pain care. Lastly, one has to remark that there are some people who believe in the redemptive power of suffering.
Q146 Baroness Knight of Collingtree: I do not think we are so much concerned about that. There are two other points and both of them, oddly enough, touch on something which has been said previously this afternoon. First of all, do you think that the provision of basic care, and I am grateful for Ms Willmington's description of that, such as food and liquid, should that be excluded from the scope of an advance refusal or even perhaps the powers of attorney to refuse treatment?
Mr Goss: It looks like I have been put on the spot again! We would take the view at Patient Concern that basic care should cover normal feeding, ie, without any technical things involved and you should not be allowed to refuse that per se, but when it comes to invasive treatment, well, you should have the right on that the same as anything else.
Ms Willmington: My understanding is that we made a clear distinction between medical treatment and basic care and that medical treatment is something that you can refuse, but everybody should have access to basic care.
Q147 Mr Burstow: I just wanted to pick up on a thread from a previous question, if I may, which was the point that Mr Goss was making about an anxiety that he and possibly others might have that this question of artificial feeding and hydration and so on could somehow hijack the Bill. One of the things that I understand the Making Decisions Alliance was established to do was to enter into dialogue with other organisations that might have such concerns. I would be very interested to hear how successful that dialogue has been and how many other organisations have responded to that.
Mr Goss: I have been invited to a meeting of these groups tomorrow and I will make a point of attending to hear their views.
Ms Willmington: I think the other point is that the joint chairs of the Making Decisions Alliance will actually be present at tomorrow's session, so they are probably in a slightly better position to answer that one.
Q148 Baroness Knight of Collingtree: So we watch this space! Finally, could I ask you this: in what circumstances might starving a patient to death through the withdrawal of artificial nutrition and hydration be in that person's best interests?
Mr Goss: The answer is, I think, that it is only in the best interests of a patient who has clearly and specifically opted for this rather than enduring a long, drawn out, living death. In effect, it is the least worst option or, alternatively, if the patient has given the choice to their clinician because they do not want to make it themselves, and that is what the clinician decides is in the best interests.
Mr Foster: I cannot speak from the Mind perspective, it is in an entirely personal capacity, but my father was in intensive care and was artificially ventilated for some weeks and was artificially fed. There was a point when he was rallying but there was a point at which his systems began breaking down completely, at which point I do not think the family, who loved him very much, wanted him to return. There was a point at which we felt, "This cannot be right. We are artificially prolonging his life when there is no prospect of his recovery". I think that is a relevant factor. That was the situation but it was very difficult because it was put by the medics on that occasion, we were asked for our views but we could not possibly give a view whether it was in his best interests or not. The doctor very helpfully said, "I should really make the decision, I just wanted to know what you thought based on your knowledge of him. You are quite right, he would not have wanted to be kept alive like that." I do not know if that helps.
Chairman: Thank you. There is an important point on the Human Rights Act.
Q149 Jim Dowd: Yes, the Human Rights Act, Article 2, Schedule 1. Committee members have received various views on this. To some degree with most lawyers you pay your money and take your choice, but it depends who you pay, and never ask the question until you know the answer. The Joint Committee has said this is compatible, we have had other submissions it is not. What is your view on the compatibility of the provisions in the Bill?
Mr Goss: My understanding, and I am not a lawyer and I say that again, is that the Human Rights Act is concerned with right to life which is not about specifying an individual obligation to life. The obligation to life is essentially assumed by some religious faiths which we are all at liberty to accept or reject. We feel in the end the law should not allow a minority set of such views to prevail over the majority and be enforced on them. I am sorry if that is provocative but we are, as my good friend said, into emotional territory here.
Mr Foster: May I approach this from a slightly different angle, again a lawyer's angle. I am pleased to say all advice of mine is free of charge.
Q150 Jim Dowd: In which case it may be worth what we pay for it!
Mr Foster: We discussed this before coming before this Committee. I think the problem is arising because Article 2 of the European Convention, which is as you say in Schedule 1 of the Act, talks about right to life, there is nothing to say you have an obligation to keep yourself alive whether you like it or not. The problem comes because in the Human Rights Act itself there is a duty placed upon public authorities to uphold and enforce the Convention rights. I can only speak again from a personal point of view, I would say there is no incompatibility between the draft Bill and the European Convention, the reason being that the duty upon a public authority is to uphold a person's right to life. If an individual said, "I actually do not wish to be kept alive in these circumstances" - and Mind hears from a lot of people who say, "I cannot tolerate this any more, I have been through this, they have pulled me back and back and frankly I am fed up with it" - at that point I think the individual is saying, "I do not wish to uphold my right to life". Then, of course, there is an issue about how much reliance we put upon that and what their state of mind was when they said those things, which of course must be looked at. But ultimately I would say that has let the public authority off the hook from their duty to keep the person alive when they have made it clear they do not wish to be. That is the best I can do.
Jim Dowd: I am very grateful for that. I am fairly certain we have not heard the last of that.
Chairman: We did have a question about education, Question 18. If you would like to write to us on that, that would be helpful. We have touched on the question of advocacy but if there is anything else you would like to say about it, that would be helpful too.
Baroness Barker: Can I ask, when you answer that question, there is just one particular question I would like you to address, and it is whether the advocacy services established for the purposes of this Bill need to be separate from other advocacy services. A number of us around this table have dealt with a variety of different Bills in which the issue of advocacy has come up. It is really whether it is possible to have a multiple advocacy service. If you could address that, that would be helpful.
Mrs Humble: I was going to raise that and ask you a series of questions on advocacy as President of Blackpool Advocacy. Much of the funding for advocacy services now is short-term funding to develop specific services. Where is the money going to come from? Should there be national funding for a national service? Should it be national funding given to the local councils to develop local services responsive to their needs? Should it be ring-fenced funding and therefore on-going funding? Then of course there is the issue about the quality of the service, monitoring it and also letting people know about the service and what it means. This is picking up in a way on Jim Dowd's point, because simply using the word "advocate", a lot of people think "lawyer", and it is not a lawyer, so a lot of people do not understand what advocacy services do. How best could people out there who could benefit from the services know they are out there. If you could address those issues, that would be helpful.
Chairman: Another extremely important question is Question 21. We would like your views in writing on what you think the effects would be if your proposals are not implemented.
Mr Burstow: Allied to that, it would be useful if you could give us as part of the response to Question 21 some indication as to what the minimum requirement would be, ie what your sense of priorities would be amongst the things you have put forward to us for any additional resources which might be available.
Chairman: Thank you very much indeed. It has been very helpful, a most stimulating session, and we have some more to come, as you know.