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My Lords, I beg to move that the House do now resolve itself into Committee on this Bill.
Moved, That the House do now resolve itself into Committee.—(Baroness Ashton of Upholland.)
moved Amendment No. 1:
Page 1, line 11, at end insert—
"but any decision, whether unwise or not, is inapplicable and invalid if it is—
(a) wholly irrational in the opinion of the medical practitioner responsible for the treatment, or any other decision maker including a court;
(b) in all the circumstances against the public interest, namely—
(i) to preserve life;
(ii) to prevent suicide;
(iii) to protect the integrity of the medical and nursing professions; and
(iv) to protect innocent third parties."
Some Members of the Committee will find this group of amendments of considerable importance. I commend the Government on the consultation and care that they have exercised in listening to all the different views expressed about this important and serious piece of legislation. In particular, my noble friend Lady Ashton has been assiduous in ensuring that she not only listened to what Members of the House had to say, but wrote to us individually, that we should know her thinking on the part of the Government. At Second Reading, I invited your Lordships to conclude that this was the kind of Bill that would most benefit from reasoned debate in Committee and on Report, because its substance is so important to the fabric of a civilised and moral society.
I propose to speak to Amendments Nos. 1, 16 and 19. They are generally related, in that they go to the question of the philosophical foundation of this legislation. I start with Amendment No. 1. Unusually for a piece of legislation, the Bill sets out principles in Clause 1. Those principles reflect not legalistic conclusions but sentiments thought best to express the way in which our society views mental capacity, mental incapacity and the very grave decisions that fall to be made when someone becomes incapable of dealing with their own affairs or health.
Amendment No. 1 adds words to Clause 1(4), which presently reads:
"A person is not to be treated as unable to make a decision merely because he makes an unwise decision".
The reasoning behind that is straightforward. Amendment No. 1 seeks to introduce for the Committee's consideration matters which any expression of common sense—any sentiment of the best interests and common good of a society—would want in the Bill. It therefore adds,
"but any decision, whether unwise or not, is inapplicable and invalid if it is . . . wholly irrational in the opinion of the", treating doctor or the person or court, who has to make a decision based on a sentiment expressed by the person years before or in an advance decision. Such a decision should not apply if it is "wholly irrational".
It seems difficult to conceive of how society can responsibly accept the implementation by a doctor or a court of a decision that was properly so described. In administrative law by way of analogy, the courts refused to apply government subsidiary legislation that was wholly irrational, defined as involving legislation or a decision which no reasonable person could ever have reached. My amendment is not from some rarefied source, but from the thinking that exists at present about the proper way in which society should work; namely, that it should not be saddled with the consequences of wholly irrational decisions.
The question that arises in that context is whether personal autonomy should apply, even if that autonomy has been expressed wholly irrationally.
Does the noble Lord recognise that his amendment would extend to preventing a Jehovah's Witness refusing a blood transfusion that would save his life? That would surely be an irrational decision, but the amendment would prevent it being a valid decision. Does the noble Lord accept that consequence?
No, I do not, which is why I suggest "wholly irrational"—inconceivable to everyone else in the community. Experience and time has led to the acceptance of the beliefs of Jehovah's Witnesses by courts. I am talking about the wholly irrational.
Where the autonomy that we speak of consists of little more than a bald assertion that a person's choice merits respect because it is his choice, whatever it may be, I question the logic, justice and sense of such a proposition. A choice wholly irrationally expressed cannot be in the interests of the person making it, nor of the society required to implement it.
I pass on from that admittedly philosophical concept to the practical consequences in proposed new paragraph (b) in the amendment. Any society concerned with the exercise of personal autonomy which may involve a decision that might result in the end of life is entitled to consider how that decision affects the community in which the person making it lives. I have isolated four considerations that figure in many American cases decided on the interpretation of legislation in that country involving advance decisions, the matters with which we are concerned.
The first is whether the decision should be valid—whether the historical statement should be regarded as binding—if it is inimical to the state's desire "to preserve life". Let us suppose that a proudly presented exposition states that if you contract condition X, you will suffer terrible pain in your closing time before death, but it is wholly unsubstantiated and untrue. Would we accept that a decision made on such a basis should be applied, to result in the termination of life? If so, on what sensible basis do we do so?
Next is the prevention of suicide. My example is about a cult; we remember that terrible case in Guyana a few years ago. Let us suppose that cult members were told that, by a given date, they would face Armageddon or had to commit suicide, and they chose to commit suicide by dint of advance decisions, astutely framed to avoid suspicion but with society knowing what they were up to. Are we supposed to allow that to happen? Is personal autonomy absolute?
The third consideration is very important. If a doctor exercising his or her interpretation of the Hippocratic oath, the Helsinki Declaration or another statement of medical ethics feels that what he is asked to do is totally contrary to his medical ethics, should he be required to do it? A conscience clause may except him, if we accept a conscience clause in the Bill. We heard the other day the comment, if accurately reported, of the noble Baroness, Lady Warnock, that we should not be saddled or restrained by the scruples of doctors. Scruples? I thought that they were exercising ethics in the public interest in pursuing the Hippocratic oath. If they want so to treat and the patient's instruction is completely contrary to that, is that in the interests of society? Does that not risk the destruction of trust between patient and doctor overall?
The last consideration is the protection of innocent third parties. I refer, for example, to a mother who in distress makes an advance decision and states that, "In certain conditions, I don't want treatment". She has young children. The doctors are convinced that despite the advance decision she could be saved and the children looked after. Where does personal autonomy dictate that the decision should be made? So, there cannot be an absolute of personal autonomy. In some way our thinking and this Bill must seek to reflect that, otherwise we are allowing personal choice to prevail over the interests of the common good.
I turn to Amendment No. 16, which I shall deal with briefly. The amendment has a typographical error in the penultimate line. The word "not" should be deleted.
I am obliged to the noble Lord for giving way. I have listened with great attention and wonder whether he can help. What is the reasoned approach to the distinction between what is irrational and wholly irrational?
"Irrational" may be unwise; "wholly irrational" is inconceivable in terms of giving it effect. You would not accept it in your own family or community. Why should the state accept it as a right of citizens? There is a plain difference. The word "wholly" is used clearly and has force.
I turn to Amendment No. 16. As I said, the word "not" should be deleted otherwise there is a double negative. The purpose of the amendment is to produce the following considerations. We are concerned with the implementation of advance decisions or comments made in the past to which effect may be given by a court. What attention is to be paid to the circumstances from which such comments or decisions are made? I give two examples.
I am told by a medical friend that each year over 80,000, and possibly as many as 100,000, cases of self-harm, drug overdose or attempted suicide occur in this country. The vast majority involve no intention that death should occur; they are attention-seeking calls for help. But those people are often living in a state of distress, sometimes permanently. They are just the kind of people who would make advance decisions that might be thought to reflect their desire for self-help: "Look at my advance decision". Should we look at such an advance decision from a suicidal background? Is that a proper implementation of personal autonomy or is the doctor not to be allowed to look at it?
Next, let us suppose that the background to the decision is influenced by a carer, the family, or whoever, for financial motives, and that what was said was unknown on the face of the advance decision or on the evidence before the court but by reasonable inquiry eventually emerges. Are those factors which may involve financial motives to be ignored and the will of the patient to be given free implementation by the court regardless? I ask the question rhetorically. Are these not very serious matters for us to consider?
The last amendment, Amendment No. 19, is simple. If I am wrong about the law I am ready to be corrected. If I am right—it may be that I am not—the following situation appears to prevail under the Bill. If you are under 18 years of age the Court of Protection will determine your best interests in terms of treatment; that is, what is too burdensome, whether it is futile or whether, in the case of children, it produces a life that is completely intolerable. However, when one reaches 18, Clause 4 of the Bill has a wide-ranging basis for determining best interests that do not include considerations of what is too burdensome, futile or intolerable. If I am right, I wonder how that is to work. A person of 17 years 11 months has the benefit of a stricter regime but at 18 years one month he moves into the context of the Bill. I hope that I am wrong and that the Minister will correct me. If she is unable to do so today or at some later stage, this is a very unusual state of affairs. Rights and choice should be applicable across the board without distinction.
Members of the Committee have been very patient. I shall now finish. I am happy to conclude by welcoming government Amendment No. 13. It reflects a considered response by the Government to the great concerns expressed that proxy decision-makers and medical staff should not be involved in circumstances which give effect to a suicide. That is a welcome step forward, for which the Government are to be commended. I hope that they will pay similar, kind attention to my Amendment No. 88, which requires the same consideration to be applied to the person himself not just to a proxy decision-maker or a doctor.
I thank noble Lords for their attention. These are serious matters. The amendments should not occupy our time by being dissected legally. I have raised issues for Members of the Committee to be conscious of when we consider the many complex and important provisions of the Bill. I beg to move.
The list of amendments before the Committee is complex and, indeed, extensive. There are 10 amendments in this group, some of which cover ground which the noble Lord, Lord Brennan, touched upon, and other issues. However, he is right that these are crucial questions that cut to the heart of the Bill.
This has to be seen not only in the context of our Second Reading debate but also in the context of events outside this Chamber. Only yesterday, for instance, on the front page of the Daily Telegraph, there was coverage of events at Groningen hospital in the Netherlands. Doctors there have admitted that at least 22 new born babies have been put to death since 1997 based on the doctors' own reports to public prosecutors. That study was covered in the Dutch Journal of Medicine. It is said that the true number is likely to be far higher. The author of the report, Dr Eduard Verhagen, the head of the paediatrics unit at Groningen university hospital, said that doctors put to death between 10 and 15 infants a year. The report continues:
"No action was taken over any of the deaths, although euthanasia is technically legal in Holland only for patients aged over 12.
"The 22 babies listed in the study suffered from extreme spina bifida".
In a comment about that article in the leader the newspaper stated:
"We should talk about the subject [of euthanasia] in Britain—and quickly, before any legislation slips through Parliament legalising euthanasia by the back door, as it nearly did when the Mental Capacity Bill was debated by Parliament in December. This week, a House of Lords committee will discuss the Bill, which now comes with a hastily drafted government amendment that is supposed to prevent the killing of patients through neglect. But, by focusing on motivation rather than actions, the amendment further confuses the issue."
Those are the issues in this group of amendments. Before turning to my amendments, perhaps I may mention the press statement today by the Archbishop of Cardiff who has had discussions with the noble and learned Lord the Lord Chancellor. Participants in the Second Reading debate will recall the discussions. The Minister has been extremely helpful in trying to meet the concerns mentioned in the article to which I have just referred. The statement welcomes government Amendment No. 13, as did the noble Lord, Lord Brennan, and says that the new amendment,
"makes explicit that the Bill does not give authority to doctors, proxies or other third parties considering a patient's best interests to make any decision motivated by a desire to kill the person. In doing so it provides a welcome and necessary safeguard but with the important caveat, however, that it does not cover advance decisions".
That remains an issue which is in contention in your Lordships' House and with representatives of many of the great faiths outside.
The second of their concerns is the issue of suicidally motivated advance directives. The statement says:
"We believe an amendment is needed to send a clear signal that the Bill does not give validity to expressly suicidal advance decisions, and have proposed an amendment that we believe would not overburden doctors in these difficult cases".
The noble Lord, Lord Brennan, referred to that argument. I believe that Amendment No. 88 should commend itself to the Committee.
I was pleased by the positive tone of the statement issued by Archbishop Smith who said:
"I very much welcome the continuing dialogue in which many of us who have been concerned to ensure this important Bill carries the necessary safeguards have had with the government. I hope that the government will continue to reflect on the strong case for such an amendment, and that it will make its way into the Bill".
Discussions to bring that to fruition will continue between now and Report. I hope that our discussion on these amendments will help to flesh out some of these important ethical questions.
The Bill rightly recognises in Clause 1(4) that a person is not to be treated as unable to make a decision merely because he makes an unwise decision. The issue of personal autonomy cuts to the heart of this question. However, decisions which are wholly irrational or against the public interest are a different matter. The Bill which seeks to safeguard the interest of the vulnerable, facilitate supported decision-making and provide greater reassurance to carers, should be clear about the types of decision that are invalid and inapplicable.
It may be argued that wholly irrational decisions or those against the public interest—the noble Lord described it as the common good—will almost always be invalid and inapplicable. I suspect from the discussion I was able to have with the Minister last week—I am grateful for the time she gave—that this view is reflected in her own thinking. Therefore, we should not have too far to travel to incorporate that view on to the face of the Bill. However, what about the rare situation where capacity is not in doubt? Must we as a society stand back and allow people to harm themselves and place their carers in an invidious position out of a misguided respect? Autonomous decision-making: I believe not.
Amendment No. 16 seeks to build on Amendment No. 1 and tease out what circumstances could exonerate a clinician or a carer who, although convinced of a person's capacity, remains unconvinced by the rationality or reasonableness of their decision.
Amendment No. 19 provides that where making a best interest determination on a person who has turned 18 years of age regard must be had to his principles of best interest that applied before his 18th birthday. Although the Minister will probably be able to answer fairly satisfactorily on the points that the noble Lord raised, I ask her to ensure continuity of care. For instance, someone prior to the age of 18 may have been able to access speech therapy or day-care centres. Just because he or she reaches the age of 18 that should not be withdrawn because we suddenly take a different view about his or her capacity.
Amendment No. 97 stands in the name of the noble Lord, Lord Brennan, and Amendment No. 99 in the name of my noble friend Lady Finlay of Llandaff. Both amendments are versions of new Clause 1 which was tabled in another place and seek to exclude from the Bill decisions with "the primary purpose" or "the sole purpose" of bringing about another's death. Such amendments, even though they would create no offence or civil wrong, would make it straightforwardly true that the Bill does not permit euthanasia—an objective which I believe we all share.
By conferring on proxies and on advance decisions of patients the statutory power to refuse treatment—in that sense making treatment statutorily unlawful in various circumstances—and by granting those proxies the right to make determinations about the patient's "best interest" by a new and highly subjective statutory approach, the Bill will have a profound and far-reaching effect on the context in which the existing law on homicide and suicide by omission will operate in practice. The weight of the legislation will favour both omitting treatment in a range of cases where hitherto it would have been omitted only if the patient refused consent, and in many cases ceasing to provide food and water in circumstances where but for the legislation such treatment and sustenance might well have been given. That being so, it seems quite unacceptable that existing legal ambiguities about omissions should be allowed to continue, let alone be extended in these ways; hence these suggested amendments.
I still have serious concerns about the provisions of the Bill regarding lasting powers of attorney. The attorney, assuming that he or she is given authority in the lasting power of attorney over life-sustaining treatment, can direct medical professionals not to treat a patient. The attorney's decision must be respected even though it is the patient not the attorney who stands to suffer from the decision. Of course, in theory medical professionals will be able to challenge the decision of an attorney that they believe to be questionable and/or contrary to the patient's best interest but how many medical professionals and NHS trusts will have the time, energy, motivation and money to ask a court to override an attorney, particularly when the attorney has statutory authority to direct medical professionals as though he or she were the patient?
I strongly welcomed Clause 58 at Second Reading. It is a declaratory provision. It is good that it is on the face of the Bill but I do not believe that it will solve the problem entirely. A doctor who withholds treatment simply because it has been forbidden by a statutory proxy's decision or by a statutorily valid and applicable advance decision will not be acting unlawfully under the rules preserved by Clause 58. Such a doctor's intent will simply be to comply with his or her legal duty and the conduct—a set of omissions—will not amount to the matter of an offence or to a civil wrong.
The noble Lord, Lord Filkin, dealt with the issue in the earlier passage of the Bill and confirmed in correspondence that,
"if a proxy wanted to refuse consent to a treatment and the doctor thought that this was with the intention of murder or manslaughter then the doctor could continue to treat".
Why not make that crystal clear in the Bill by including an amendment along the lines suggested in these amendments?
I apologise to the Committee for the length of my contribution. Of the 10 amendments, three stand in my name and I have signed many of the others. Under Clause 1 (5), Amendment No. 11, all acts done or decisions made under the Bill for or on behalf of a person who lacks capacity will be required to be done or made "in his best interests". The Bill's explanation of "best interest" in Clause 4 makes no reference to the fact that persons, even when unconscious or mistaken about their interests, have an objective interest in their own life, health and well-being. Instead, Clause 4(1) states that in determining what is in a person's best interest,
"the person making the determination must consider all the relevant circumstances".
I appreciate that since the draft Bill was published the Government have introduced a great element of objectivity into the Bill's definition of "best interest". However, I remain perplexed as to why the Government have so far resisted this amendment which merely seeks to make it clear that when personal welfare decisions are made the patient's life and health must be considered along with—and not to trump—all the other factors set out in Clause 4. I refer the Minister to common law and the phrase "best interest" which means treatment given to save the patient's life or to improve or prevent deterioration in the patient's physical or mental health.
At present Clause 4(2) to (6) say that "in particular" there must be a consideration of a range of factors, all of which relate to predicted capacity or incapacity and participation in decision-making. They are,
"past and present wishes and feelings . . . beliefs and values that would be likely to influence", his or her decision if he or she had capacity, and
"the other factors that he would be likely to consider if he were able to do so".
The views of interested persons on,
"what would be in the person's best interest and, in particular, as to the matters", must also be mentioned.
Those matters to be considered "in particular" are still too subjective—desires, wishes, beliefs and values. Not enough emphasis is being placed on the real dignity and value of the person's existence, life, health and well-being. Disability rights groups are concerned about the Bill's definition of "best interests". I shall not read the long statement that I have from Disability Awareness in Action, but it very much supports the spirit of the amendment.
Finally, Amendment No. 197 concerns the withdrawal or withholding of treatment, the question of suicidal advance decisions and the right of conscience. The amendments must be seen alongside government Amendment No. 13. I am glad that the Government have accepted the deletion of the amendment, to which I referred at Second Reading, which had been incorporated following the intervention of the honourable Member for Knowsley North and Sefton East, George Howarth, in another place. I welcome that, but I also note that the Joint Committee on Human Rights, in its report published yesterday, said that we needed to draw the lines even more narrowly. I draw that matter to the attention of the Committee. The Joint Committee said:
"Proving the motive of a person making a best interests determination will in practice be extremely difficult, however, and we, therefore, regard the proposed amendment"— the Government's amendment—
"more as a declaratory statement about the intention behind the Bill for the avoidance of doubt, similar to clause 58, than as an additional substantive safeguard".
The report goes on to say:
"A further safeguard which could be added to the Bill in the light of a judgement in Burke would be an express provision that it is only in the best interests of a patient to withhold or withdraw life-sustaining treatment if it is intolerable for them to continue to receive treatment in order to sustain life".
There was much agreement at Second Reading on the issue of burdensome treatments. We should dispose of that once and for all. I do not think that anyone in the Committee is a vitalist and says that you should continue to keep people alive beyond a point where it is natural for them to die and to impose treatments that they would not wish to receive. That is clear. The Joint Committee continued:
"This would add a very real practical safeguard, making it less likely that the withdrawal or withholding of ANH will be judged to be in the best interests of anyone who is not in the very narrow category of cases in which such withholding or withdrawal would not be in breach of Article 3 ECHR (identified in Burke as those cases where the patient is dying and has slipped into a final coma and lost all awareness of what is happening). We recommend that consideration be given to bringing forward an amendment to this effect in the Lords".
My amendment helps to do that, although I am not precious about any of the words, and I recognise that we are at the exploratory stage of our proceedings. They are probing amendments, but we must meet the point raised yesterday by the Joint Committee.
If I were to say in a written advance decision that in such and such circumstances, "My wish is to commit suicide by being taken off my drugs, and I wish to be assisted to commit suicide in that way"—the Minister and I discussed this at our meeting last week, and it would be helpful to hear about it in Committee—would the Bill give full support to that advance decision and make a doctor guilty of battery if he did not comply, because he judged that the drugs were in a patient's best interests and was unwilling to aid and abet a suicide? Admitting that would be for Parliament to give strong backing to the movement for assisted suicide, so the problem could be addressed by an amendment to Clause 25 that stated that an advance decision was not applicable,
"if it is expressly motivated by a desire to be assisted to bring about P's death".
Amendments Nos. 88 and 197 do that, as does the later amendment, which is better, tabled by the noble Lord, Lord Brennan, and makes the same points more efficiently. The sentiments of those amendments should be incorporated.
We fully respect the autonomy to refuse treatment for any reason or none, but we must preserve the rights of doctors, nurses and society to be free from the scandalous burden of openly assisting suicide. The amendment would preserve the balance and discreteness that has marked the courts' position, but which the Bill does not safeguard.
The last amendment also contains a conscience clause. For example, there was a conscience clause in the Abortion Act 1967, whatever one's position on that. I was concerned to meet a consultant working in a London hospital—the Minister knows of the case, because I mentioned it to her last week—who told me that, if we did not include a conscience clause and tighten up the remaining points, he would seek work in Scotland, where different laws apply and there are greater safeguards. He did not feel that his integrity and position would be safeguarded under the Bill. None of us wishes to see people forced out of the medical profession because they were required to do things that were against their conscience. So, I plead with the Government that, whatever else happens in Committee and on Report, by the end something similar to that conscience provision will be incorporated.
I had the privilege of chairing the Joint Select Committee on the draft Mental Incapacity Bill, and I was pleased that the Government accepted the great majority of our recommendations and the recommendation to change the title to the Mental Capacity Bill.
Perhaps I may remind your Lordships of the recommendation that we made regarding euthanasia. We stated:
"Many of the fears which have been raised with us about possible connections between the draft Bill and euthanasia appear to be misplaced. Nevertheless, in acknowledgement of the strength of feeling that clearly exists on this issue and in the hope that such misplaced fears do not detract attention from the many worthwhile aspects of the draft Bill, we recommend that additional assurance should be offered by the inclusion of a paragraph in the Statement of Principles we have recommended, or by an additional clause in the Bill, to make clear that nothing in the Bill permits euthanasia or alters the law relating to it".
I was delighted that the Government did that, and I remind the Committee that Clause 58 states:
"For the avoidance of doubt, it is hereby declared that nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of section 2 of the Suicide Act 1961 (c. 60) (assisting suicide)".
This is the matter that I find hardest to grasp in this argument, and I would be delighted to hear from my noble friend Lord Brennan when he winds up, and from my noble friend the Minister. Section 1 of the Suicide Act 1961 clearly states:
"The rule of law whereby it is a crime for a person to commit suicide, is hereby abrogated".
That is the first time in a long time that I have seen the word "abrogated" in a statute. It is clear that to attempt or to commit suicide is not an offence under law. But the crucial section is Section 2. It states:
"A person who aids, abets, counsels or procures the suicide of another, or attempt by another to commit suicide shall be liable on conviction on indictment to imprisonment for a term not exceeding fourteen years".
It refers to a person who "aids" any attempt to commit suicide. Does "aid" include both the commission and the omission? That is the question on which this matter will turn—whether that section of the Suicide Act 1961 will cover the concerns expressed by my noble friend Lord Brennan.
He referred to the "wholly irrational" decision. Does he regard an expression of advance decision expressly to assist suicide as "wholly irrational"?
I just wonder whether the noble Lord, as a Roman Catholic—as am I—means that it is "wholly immoral" or "wholly irrational", because we have a view about suicide. There is no need for him to intervene again, but this is our difficulty. When I read the Suicide Act, I thought that, in the case of an advance decision to commit suicide, such as that in the example given by the noble Lord, Lord Alton—I am sure that it was hypothetical—no doctor could ever execute that, because he could pray in aid Section 2 of the Suicide Act. That is the crucial point. Does that Act cover that argument?
Regarding the other argument mentioned by my noble friend Lord Brennan, about personal autonomy, there was a judgment given in, I think, the Bland case, by one of the Law Lords that sanctity of life must take second place to personal autonomy. I suspect that that is what this debate is about.
The noble Lord, Lord Brennan, rightly concluded his powerful speech by referring to this subject as being "serious". I concur with that. I fully understand the philosophical concerns that underlie the first amendment in particular. It is trying to bring to our attention the necessity to keep a righteous and appropriate balance between the exercise of personal autonomy and the public good. From a philosophical perspective, we are now dealing with what the late Isaiah Berlin used to term "incommensurables"—by which he meant a clash not between right and wrong or good and evil but between two competing goods. I find the concept of incommensurables enormously helpful. In a situation where we have a clash between two apparent goods, how do we decide what to do? I entirely agree with the noble Lord, Lord Brennan, that we try to deal with it by careful and reasoned debate. In this particular case, we must also look at the general thrust of what the Bill is trying to achieve.
My anxieties over Amendment No. 1 are threefold. First, it could undermine some of the significant moral principles on which the Bill is founded—principles which recognise that those suffering lack or loss of mental capacity have an especial moral right to be treated by society as having fundamental and inalienable human rights. Secondly, I suspect it would impose a considerable burden—perhaps even an intolerable one—on the medical profession, which would also defeat the entire purpose of the Bill, and might lead to a large number of contested decisions. Thirdly, we are all aware that tests in our courts of what is or is not in the public interest have generally been found by those courts not to override a patient's right to refuse treatment. I believe this amendment would shift the law markedly away from the important principle of patient autonomy. I underline and repeat that I fully recognise the underlying concerns, yet I also suspect that the amendment as it stands could so skew the thrust of this Bill that it would be unworkable. Given that this Bill has received such careful and thoughtful scrutiny over so many years, I do not think that this Chamber wants such a change at this stage.
I rise to speak to Amendment No. 17, which is in the group. I have listened with great care and attention to all four preceding speeches, which precisely encapsulated the detailed arguments considered by the Joint Committee. Having listened to a wide range of advice—including that from faith groups—the Joint Committee concluded, for the reasons so eloquently set out by the noble Lord, Lord Carter, that the Bill did not encourage euthanasia by the back door, and that it should be based on the practical implementation of some very deeply held principles.
I was interested when the noble Lord, Lord Alton of Liverpool, talked about Scotland because this section of the Bill in particular was shaped and influenced by the experience of people in Scotland responsible for the drawing up and enactment of the Adults with Incapacity (Scotland) Act 2000. I do not believe that that Bill, any more than this, was motivated by a desire to bring about the sorts of scenario that have been alluded to. As a member of the Joint Committee I take grave offence at some of the implications made in the press—not only for my own sake, but also for people such as the noble Lord, Lord Carter, who we know is a man of great faith. Conducting the debate in that manner does not help us.
I share many of the concerns raised by the noble Lords, Lord Brennan and Lord Alton. I am deeply concerned about issues such as undue influence, and they will see, having studied the list of amendments before us, that we have sought to address the very real concerns about the matter. However, our starting point is different. The noble Lord, Lord Brennan, talked at one point about there being no absolutes. For me, and for those I have followed in my thinking about the Bill, perhaps the paramount principle is that people must be treated as individuals. That is key to everything that flows out of this. We need to set a legislative framework in which people are never treated as a class in terms of their human rights or in their care and treatment. For me, the importance of the Bill is that it treats adults who lack capacity as individuals, and from that flows everything else. Every decision taken under the Act has to be an individual decision in relation to one person, and it has to be based on those principles.
I therefore find myself in disagreement with the noble Lord, Lord Brennan. I listened with great care to what he said about acts being wholly irrational. Would that those people who have capacity were subject to a law that demanded of them, and those round them, that their decisions always be rational. They are not. I take to heart what the right reverend Prelate the Bishop of St Albans said because this is not just a Bill about life, it is about living. It is a Bill about the way in which people who lack capacity live their lives as members of society, and about how society treats them with dignity. Therefore, although one would not have assumed so from the opening of our debate, it covers all of life in its glory and, sometimes, in its basic, day-to-day operation.
That is why we are right to follow the example of those people in Scotland who first looked at having a Bill that was based not just on principle, but on those principles. The right to make unwise decisions should be afforded to people who lack capacity, because it is a right that those of us who do have capacity exercise every day—although not to the degree of severity that has been talked about already.
I turn briefly to my Amendment No. 17, which is about the need for somebody who makes a decision on behalf of someone who lacks capacity to demonstrate that it is in his best interests. The Joint Committee spent a great deal of time talking about best interests. We were blessed with several members who were lawyers and we talked a great deal about evidence. How does someone who makes a decision on behalf of another person show that that decision is in that other person's best interests? Decisions may not be straightforward. Decisions which are in someone else's best interests may be extremely complex.
I thought about requiring people who make decisions to produce evidence, but immediately it was argued, "We don't want people making day-to-day decisions for someone to be liable to have to demonstrate that in front of a court". I came up with a phraseology to highlight one point. When describing their lives and the lives of those they look after, carers—particularly those caring for people who lack capacity—demonstrate throughout why they do what they do. Carers are always explaining to other people what they do, especially in terms of treatment but also on mundane questions of why they chose to buy particular clothes for someone who lacks capacity. It reflects best practice.
I suspect that when we discuss the matter the Minister might be tempted to argue that there may be a burden on carers to have to demonstrate that their decisions were in someone's best interests. But I do not believe that it would be a burden. I believe that many carers would find the requirement useful. A requirement on the face of the Bill to demonstrate an activity enables them, when they come into contact with care providers, to have ready at hand the reasons why they take decisions and to have them taken into account. Many carers would find that extremely valuable.
I suspect that the amendment is not elegant and it may be rejected for technical reasons. But even for serious decisions, such as in cases of terminal treatment, I remain of the view that in this framework Bill it is good to require of decision-makers that they demonstrate in whatever way and at whatever level required why they believe something is in the person's best interests. Therefore, I hope that the Minister will consider the amendment.
I support Amendments Nos. 11, 97 and 99 standing in the name of the noble Lord, Lord Alton. However, I want, first, to congratulate the Minister on what I understand to be exemplary consultation and discussion on these issues. The circulation of papers at the earliest stage consistent with the speedy timetable of this House is very different from the unfortunate scenes in the other place, about which I read, during the dying days of discussion on the Bill there. Archbishops' letters were fluttering like confetti down the green Benches and Members were holding them up saying, "I have a letter here and it is all going to be all right. It will be sorted out in the Lords". We are beginning to see that today.
That scene led to the most withering put-down of any government Minister in another place by Sir Gerald Kaufman on his own side, but my natural delicacy prevents me from repeating those words. Therefore, may this careful consideration continue in a timely way in order to engage everyone and give them enough time to consider these points.
In relation to government Amendment No. 13, we have another archbishop's letter, which is extremely important. I am sure that the Minister, who can only just have seen it, will consider carefully what Archbishop Peter Smith says when he writes:
"The concern on which we have focussed in our most recent discussions with the Lord Chancellor relates to valid written advance decisions by persons who are not dying but who want to kill themselves. Faced with an unconscious suicidal patent whose life they could save, doctors might be forced to do nothing because of the legally binding advance decision forbidding them to treat. They are then having to stand by and effectively assist a suicide when they could stop it succeeding. We believe that an amendment is needed to send a clear signal that the Bill does not give validity to expressly suicidal advance decisions".
The archbishop appears to have parked his tanks on the noble Baroness's lawn. In the need for amendment to the Bill, and after due consideration and toing and froing, I hope that that will be brought about. However, the Minister may want to remember that, ultimately, it is not archbishops and external pressure groups who decide the fate of Bills—it is your Lordships in this Chamber. I remember clearly when a deal was made between Church and state, in this case the Roman Catholic Church and the state, on the "quickie divorce" legislation. A deal had been made between my noble and learned friend the then Lord Chancellor, the Roman Catholic Church in the shape of a bishop and the late Duke of Norfolk that the legislation was fine, entirely consistent and should continue. It was thought that it would be plain sailing but it turned out not to be the case at all.
The noble Lords, Lord Alton and Lord Carter, and others will remember how the Bill was changed radically in this place and in another place. Indeed, soon after this Government came to power, in their wisdom they saw fit to consign the Act to the legislative dustbin. Therefore, what matter most are the discussions in your Lordships' Committee and at later stages.
Those friendly warnings having been made, I want to turn to Amendment No. 11 to Clause 4 in the name of the noble Lord, Lord Alton. I strongly support what he says because the Government have held that medical professions will continue to use the traditional concept of best interest, which includes the patient's interests in life and health, as central to his or her welfare.
However, I wonder whether it is really reasonable to suppose that professional attitudes will not be affected by the deliberately subjective interpretation of "best interests" which characterises the Bill. For example, does the use in Clause 4(1) of the word "circumstance" securely imply a reference to the person's intrinsic interest in health and life? How many doctors will have the time, the energy and the motivation, let alone the resources allowed them by their local health authority or whatever, to ask a court to override a proxy whose determination of best interests appears to that doctor to be questionable or defective? And of course, there is the issue of time passing while legal process unwinds.
Therefore, in the absence of Amendment No. 11, there is a real risk that the objective interest of vulnerable patients may be submerged by the wishes now given statutory force by the Bill of persons who could well have a conflict of interest with the patient; or by the wishes, concerns and feelings of a patient that may now acquire statutory force, despite having been unduly narrowed or deflected by inclinations; or by external pressures towards self-destruction, lack of self-respect; or any of the other dozens of reasons that can be adduced.
I shall pose the first of two questions which I hope the Minister will seek to answer today. How can it be right to leave such important elements of the Bill's central concept to be dealt with in a code of practice? I do not believe that it is right to leave these matters to be dealt with in codes of practice. Such matters should be specified on the face of the Bill, so that when it becomes an Act it is of absolute clarity. Will the Minister respond on that point?
Lastly, I turn to Amendments Nos. 97 and 99. The Bill would remove responsibility and, therefore, liability from doctors to act in the best interests of incapable patients, without placing any duties of care on the replacement decision-makers. Thus, when an attorney is appointed, no one bears ultimate responsibility for a decision that may be clinically negligent or perverse. The incapacitated adult would have no legal remedy for such certain abuses of power, as they seem to me, even if he indicated that he wished for nutrition or water.
Although I greatly respect the work that has been done prior to the Bill reaching this stage, that is why I am not sure that I am convinced by the argument of the right reverend Prelate the Bishop of St Albans that because learned men and women have discussed this over many years and have come to this or that judgment, that judgment does not need the further refinement of your Lordships' House in Committee. After all, that is what we are here for.
Clause 58 does not, by itself, solve the problem. The noble Lord, Lord Alton, has already told the House that the noble Lord, Lord Filkin—I pay tribute to the Minister for what he did in your Lordships' House in this regard—confirmed in correspondence:
"If a proxy wanted to refuse consent to a treatment and the doctor thought that this was with the intention of murder or manslaughter then the doctor could continue to treat".
If that is what the Minister, in his previous ministerial incarnation, said—and I guess from the way that the noble Baroness is nodding her head that she is indicating assent with what her noble friend said—then why not make it crystal clear in the Bill by including an amendment along the lines that are suggested in these amendments?
I am never quite sure that the full weight of Hansard is taken into account in courts of law in this country and whether the fact that a Minister has said something outside the Chamber that has been read into the record of Hansard can be taken into account by the courts. We rely on the good will of the noble Lord, Lord Filkin, and the good will and the integrity of the Minister. But that may not be enough in future years. I believe that there should be an amendment turning the already elegant, crisp and clear words of the noble Lord, Lord Filkin, into law. They should be on the face of the Bill. The amendment proposed would also send a most desirable message to all concerned that certain intentions have no place in healthcare or in the Bill, just as they have no place in any other part of life.
In conclusion, the Government's good intentions are not what matters about the Bill. I do not doubt the Government's good intentions or the good intentions of those bodies that are interested, the Making Decisions Alliance or whoever. What matters is how health professionals interpret what the law says while they are taking their sometimes agonisingly difficult decisions and, later on, how the courts will interpret the end result. As currently drafted, the Bill will allow the withholding and withdrawing of assisted feeding and hydration from incapacitated patients where health professionals and proxy decision-makers consider their lives to be futile. Rather than the question being, "Is this treatment worth while?" it becomes, "Is the patient's life worth while?". That, to me, is the critical point.
I speak as a relic of the 1994 committee that put forward the idea of having advance directives. As I listen to the debate and read amendments still to come, I get the feeling that we are becoming increasingly mired in incredible complexity.
The 1994 committee suggested that advance directives should be not legally binding but advisory only. The committee suggested that for very good reasons. The first is the impossibility of expressing a will about what is entirely unexpected in advance and outside the particular circumstances with which one might be concerned. If one expresses a will in legal terms, it becomes even more complex. One may express broad intentions in the face of the unknown, but to try to put them into legal form is virtually impossible. That is partly because we do not know and partly because, by the time a document has been in operation for a few years, medicine has advanced and new treatments are possible. Nobody knows what is coming.
How many of the people who we want to help are actually going to draw up such a document in the legal terms that will be necessary? I suspect that very few will do so. A further reason for being doubtful about this whole exercise is that medicine is not an exact science. In the end, doctors are dependent on judgment in the light of knowledge that is, in a large majority of cases, only partial.
I know that it is rather late in the day to say so, but we could save ourselves an enormous amount of trouble if we dropped the legal status of advance directives and made them what we always intended them to be: a help to the medical profession in making an informed judgment about the best interests of patients. All our problems arise from the attempt to put in legal, watertight terms what is inherently incapable of being so expressed.
This raises the question of whether we can trust doctors. I suspect that this is part of the motive that underlies the attempt to wrap this up in legal terms. Obviously, we cannot trust some doctors. But if we cannot trust the majority of doctors, we are in a very poor way indeed. It seems to me that a simple way of ensuring that individual rogue doctors do not make irresponsible decisions is to say that decisions on these matters must be for the clinical team.
As my noble and right reverend friend Lord Habgood has said, I had the privilege of chairing the Select Committee on medical ethics that reported to the House in 1994. Virtually all the provisions and recommendations in the report of that committee were accepted by the House.
My noble and right reverend friend is absolutely right to make it clear that we recommended that the use of advance directives should become much more widespread and valid, but that they should not be legally binding. The problem is that, since that time, they have quite frequently become binding in common law because of a number of notable cases in which judges have concluded that an advance directive signed by an individual has the force of law.
My noble and right reverend friend is right to say that our concern was principally that an individual who signed an advance directive would, as the years went by, fail to update that directive. Therefore, he might not take account of major developments in medical sciences that, in the circumstances ultimately arising, would have made that advance directive inoperative or inappropriate.
"that the decision could not reasonably be treated as binding, having regard to all the circumstances".
Would that meet our concerns about changes in medicine, developments and practice that might make the directive no longer binding? That is a question which the Minister should answer.
There are two or three other things arising from the 1994 report of the Select Committee, which I chaired. First, the Bill enshrines the autonomy of the individual. Everyone recognises that it is entirely appropriate for any individual to refuse medical treatment having had all the circumstances and consequences explained, even if that refusal of treatment results in death. That was, and still is, accepted in law.
Secondly, in our report we recommended that there was no obligation on the healthcare team to continue with futile medical treatment that added nothing to the well-being of the person. Therefore, in relation to Amendments Nos. 97 and 99, I wonder whether it might be said that the continuation of futile treatment, such as even the giving of antibiotics towards the end of life, would be regarded as burdensome. I am somewhat concerned that the word "burdensome" tends to imply something that is disturbing or difficult to tolerate by the individual.
I am thinking of a deeply unconscious patient where, under all circumstances—for instance, an individual in a permanent vegetative state—we specify that the continuation of treatment that adds nothing to the well-being of the individual, as in the notable case of Tony Bland, need not be continued. I am concerned that that circumstance will properly be handled under this Bill. Those amendments might be open to misinterpretation in cases of that nature.
I have tried to speak three times. First, I endorse fully the comments of my noble friend Lord Brennan about the way in which the Bill has been handled thus far by our Front Bench. It is an example of how good work can be done. I thank the Minister very much.
At Second Reading, I said that there is a lack of protection beyond the considerations of life and death in the Bill. I think that that is not an accident, but I understand wholly why almost all of the debate in another place and much of our debate at Second Reading and here today has been about life and death, which is quite right.
But there is another aspect that I want to ensure is adequately dealt with in "The principles". The preamble to the Bill, if that is the correct term, states that this is a,
"new provision relating to persons who lack capacity".
I repeat—"persons who lack capacity". However, under Clause 1(2) a person has to have an "established" lack of capacity. There is a considerable distinction between the two.
I have a modest file of examples of cases of financial abuse—the Master of the Court of Protection made much of them when he gave his evidence—involving persons who certainly had not had their lack of capacity established. The number of persons involved is likely to grow. Over the next 10, 20 to 25 years, there will be a generation of people dying who, for the first time in our history, will have significant wealth in their property. That is a major change to which we have not given enough attention in a number of ways.
I am advised that the majority of the cases that have found their way to the Court of Protection involve mainly elderly women who are either single or widowed. For a variety of reasons that Members of the Committee will be able to imagine, they are very vulnerable to some form of abuse in that regard.
I will not go into great detail of the case with which I have most experience, but it involved an elderly woman where lack of capacity was not recognised by three general practitioners—another subject that I am sure will be taken up by the department with the medical training people. Where the Bill states that capacity is to be established, I ask, by whom, when and how? Currently, as far as I can see, there is no provision for even warning signals to be given to anyone.
The Master of the Court of Protection, Denzil Lush, made some comments when he gave his evidence regarding the content of Clause 1(4), which states:
"A person is not to be treated as unable to make a decision merely because he makes an unwise decision".
If "an" is a principal word in this principle, I am happy. But what about a succession of unwise decisions, which we illustrated? For example, the elderly woman to whom I referred was reduced from being fairly wealthy to not only having no money at all, but also being £100,000 in debt.
My only practical proposal—my noble friend the Minister is aware of it—is that there should be a proper provision for those who are uneasy about what is happening in such a case to make their unease known either to the new guardianship or the new Court of Protection. I understand that that might be encouraged.
Turning now to Amendment No. 1 in the name of my noble friend Lord Brennan, does paragraph (b)(iv), which says,
"to protect innocent third parties", apply to solicitors, accountants, brokers or anyone else in the financial services field who has a concern about what is happening in a case that they know well? In my case, I have a list, which includes three firms of solicitors, a firm of accountants and others, all of whom were uneasy, believed that what was happening was wrong—it certainly did not look right—but did not know what to do.
Those people will certainly need protection. For example, if a solicitor is to write to the Court of Protection stating, "In my opinion, this case needs some exploration", he will want to be sure that he is not going to open himself to liability under confidentiality to the client. A number of noble Lords will recall the hoo-ha from the Law Society about the proposed requirement that it inform the Treasury or the Revenue about tax avoidance arrangements concerning clients.
Paragraph (a) of Amendment No. 1 refers to "wholly irrational", which it certainly was in the case that I know about, and,
"the opinion of the medical practitioner".
Who else might be concerned in that area in order to form an opinion? Talking about principles does not refer exclusively to medical issues, life or death. It is about the wherewithal for people to have a sensibly and honourably regulated life. Certainly, unless there are other circumstances intervening, public interest gets involved because people become the financial responsibility of the state.
Many points have been made, and I do not want to take up much time repeating them. The Bill tries to encapsulate good decision-making to enhance the dignity of the individual. I feel much more comfortable with government Amendment No. 13, which changes the wording in the Bill, because I believe—I hope that every lawyer will agree—that it means that doctors cannot be asked to kill a patient. They cannot make the judgment that a person would be better off dead and go about ending that person's life. That has been my motivation and that of others who have tabled amendments.
I would like to speak briefly to Amendment No. 11 because it is about motivation. The motivation for tabling it was so that the default position would be towards life. Clinical decisions are complex and are not made at a single point in time. My worry about our discussion so far is that it sounds as though a decision is made and that is it. However, in a clinical scenario the patient is changing all the time: they unexpectedly get better or worse.
There are patients who decline all treatment, which may at first seem unwise. It might seem extremely unwise, but they could be proven right because they do remarkably well. Sadly, some patients whom we treat do remarkably badly, and I honestly believe that their lives have been foreshortened by our best efforts because they get infections and so on, although infections are not caught through bad care—it can still happen through the best of care.
We are trying to ensure that the best clinical practice is brought in through the legislation and that bad clinical practice cannot continue so that we strengthen the way in which decisions are made. However, it is worth remembering two situations. First, research was carried out on patients who had spinal injuries. Of 25 patients, 23 said that they were glad in retrospect that they were resuscitated and treated. However, I know as someone who treats medical students that if we took 25 medical students they would say, "If I got a massive spinal injury I think I might be better off dead".
We have to remember that the view of the person when they are in a situation is often different to the way they perceive it before they find themselves in that situation. Human beings have a phenomenal capacity to adapt, and I am amazed at what people adapt to. Day after day, I stand in awe of my patients, as they adapt to situations that they have said they thought would have been intolerable. That is why we need a default position towards life.
Secondly, will the Minister clarify the emergency situation? I am particularly worried about obstetrics. What would be the position for a woman who has been adamant for a long time that she did not want a Caesarean section and has had that clearly documented, written down and discussed, in the rare event that she had a rupturing uterus and every other intervention to extract the foetus had been tried? What will be the position of the obstetrician who today would phone up the duty court at the time and obtain an instant ruling and would be able to operate and save that woman's life?
I do not know of a study that has carried out a retrospective look at all the cases. In all the anecdotal cases of which I know, once the woman has recovered after about 48 hours she is glad to be alive not dead. Her mind may have been so disturbed in the state of advanced labour, when things were going wrong, that she was unable to make a decision.
The other issue we need to remember is the way that relatives view matters. When they are sitting by the bed of someone they love, particularly in a sudden unexpected tragedy such as a road accident, their thinking can become distorted and difficult. That is another reason why, in the amendment to which I put my name, the default position towards life would seem the safest way to go.
I would like some clarification on the Government's Amendment No. 13; in particular, what is meant by the person making the determination not being motivated,
"by a desire to bring about his death".
Can we have an example of the evidence that might count as substantiating that charge, if it was brought, or that might show it to be unfounded? I am not a lawyer and therefore I do not know how "motivated" might be interpreted in legal terms, but from the standpoint of Christian moral theology—the great body of moral theology shared by the Roman Catholic Church and the Anglican Church—I would want to make a distinction between "motive", "intention", and, "unintended but foreseen consequences".
If we take the withdrawal of artificial hydration and nutrition in the case of a patient experiencing burdensome treatment, we can foresee that such a withdrawal will lead to their death. But the intention, understood as the main thrust of the action, is simply to withdraw burdensome treatment that has proved futile. That is a difficult enough distinction to make, between what is directly intended and what is unintended but foreseen: but when we bring in motive, which is a concept that goes on entirely in the mind, it will be very difficult for the courts to adjudicate on situations where a case might be brought.
I am particularly concerned about doctors who make a proper professional judgment about the withdrawal of artificial hydration and nutrition in the case of a patient who is experiencing burdensome treatment that is futile. I want to be sure that, if such doctors were brought to court, they would have a sure defence and that they could not be captured by the clause.
I would like to deal with the amendments in the name of the noble Lord, Lord Brennan. The concept of irrationality is an unsafe criterion for the jurisdiction with which the clause deals. With respect, the noble Lord, Lord Goodhart, was right when he put to the noble Lord, Lord Brennan, the illustration of the Jehovah's Witness whose decision not to take a blood transfusion would be caught by his amendment.
The principle embraced in Clause 1(2) is admirable:
"A person must be assumed to have capacity unless it is established that he lacks capacity".
Clause 1(4) states that he,
"is not to be treated as unable to make a decision merely because he makes an unwise decision".
In the Explanatory Notes, we read that it is the Government's intention and the Bill's effect that someone should be able to make an irrational decision if he wants to. I stand by that, but it is unsafe to give that discretion to anyone, whether it is the doctor in charge of the treatment or, as Amendment No. 1 states, "any other decision maker"—whoever that might be.
It is a heavy, highly invasive and unsafe responsibility because we are not able to pry into the mind of the decision-maker at the time when he took the decision or indeed at any other time. We cannot determine whether there was a reason that seemed to him to be a good or sufficient reason, or whether it was simply a capricious twitch of his mind. We are not able to do that. I believe, therefore, that to import into the Bill—by way of pulling back from the principle that I have already read—the concept of irrationality is very dangerous. The danger is that an objective principle will be applied to what is essentially a subjective, individual and personal decision.
As to the point made by the noble Lord, Lord Goodhart, if a decision derives partly from something that is perhaps irrational and partly from something of which that cannot be said, it cannot be said to be an irrational decision. The noble Lord, Lord Brennan, said "That is why I have used the word 'wholly'"—"wholly irrational"—but something cannot be described as irrational if it is comprised in part of a sound, proper or valid reason. You do not add anything by importing the word "wholly". Something is either irrational or it is not irrational; calling it "wholly" irrational adds nothing. Therefore, I am afraid, the Jehovah's Witness would be caught.
I should like to comment briefly on Amendment No. 1, which stands in the name of my noble friend Lord Brennan and which deals with the principles of the Bill. It is here described what is meant by a person lacking capacity and points out that a person who makes a wholly irrational decision would not be considered by the Act.
People who have capacity, I am afraid, often make wholly irrational decisions. When they conflict with society, we have a variety of laws to deal with them—to a variable extent, I have to say, but they are there. A circumstance in which the amendment might become relevant is if a wholly irrational advance directive is made. As and when the person who made the irrational decision—a person who was originally not lacking in capacity—comes to lack capacity, there is an issue whether the decision was wholly irrational at the time.
I am all in favour of the idea of principled autonomy as against absolute personal autonomy, but I foresee problems with the amendment. I agree entirely with the noble and learned Lord, Lord Mayhew, about the judgment that has to be made about "wholly irrational". It is to be decided by the medical practitioner responsible for the treatment or any other decision-maker, including the court. That of course puts an enormous burden on those people and becomes problematic immediately because at least some of them will judge something as "wholly irrational" where others would not.
There are then problems about whether one should go against an advance directive which suggests that the person making it wishes to not have his life continued by burdensome treatments at the end of his life. Would that be considered wholly irrational by some and not by others?
The whole area is far too difficult to put in the words of the amendment. I am much more in favour of government Amendment No. 13.
I did not take part in the Second Reading debate but I have listened to the discussion today with enormous interest. I have been very impressed by the quality of thinking behind what all noble Lords have said.
I should like to say something very simple. I am not a professional in any of the fields that have been mentioned—indeed, I am not a professional at all—but, like so many noble Lords, I have had experience of being in the situation we are talking about with a member of my own family and I cannot help being somewhat influenced by that.
I very much agreed with the noble and right reverend Lord, Lord Habgood, when he said, after a period of debate, that we seem to be becoming mired in complexity; that the whole discussion was becoming very complex and was apparently insoluble. We have to be careful about that. I rather longed for the day when we might have gone back to an advance directive not being legally enforceable because that would solve many problems, but I suspect that we are past that stage.
The right reverend Prelate the Bishop of St Albans said what I would like to say, which is that Amendment No. 1 seems to, I think he said, "skew" the effect of the Bill too much from where it is after many years of public discussion and contemplation and of trying to find a way of getting close to the centre of the argument where consensus on a legal framework might be found.
I feel that Amendment No. 1 cannot be accepted. I look forward particularly to hearing what the Minister has to say about Amendment No. 13 in the light of the important questions asked by the right reverend Prelate the Bishop of Oxford.
I intervene briefly to support what the right reverend Prelate the Bishop of Oxford said. What he said in a few well chosen words goes right to the heart of the problem raised by the Bill. The government amendment introducing into the Bill the question of someone's motive is not a protection to anyone. You cannot establish at law a motive—it cannot be done—and there is a basic confusion behind the government amendment, and those who have argued for it, between motive and intention.
The intention of an act can be concluded objectively by looking at the act; a motive cannot. You may have any number of motives, but you can never prove what a motive is. I shall not use the stronger word, but it is a delusion to think that this is an effective protection of any of the purposes of the Bill. With all respect to the right reverend Prelate the Bishop of Oxford, the distinction between motive and intention was not first made by him; it was first made by Bentham some years ago.
I ask the Minister to address this problem fully and carefully when she comes to speak. If she cannot satisfy the Committee on this point, one can only conclude that the government amendment is wholly ineffective, is nugatory and will not bring about any of its promised consequences.
I endorse everything that was said by the noble Baroness, Lady Barker, in relation to Amendment No. 17, to which my name has been added. I do not propose to comment to any great extent on the amendment of the noble Lord, Lord Brennan, except to say that I believe it is flawed in at least one sense in that it seems to countenance the idea of a wholly irrational yet wise decision. I find that a rather difficult concept to grasp, quite apart from the difficulties highlighted by my noble and learned friend Lord Mayhew, the noble Lord, Lord Turnberg, and others.
I should like to devote a moment or two to government Amendment No. 13, anticipating with other noble Lords what the Minister is going to tell us. I start by saying that the Committee will be extremely grateful to the Minister for bringing forward the amendment.
I think we all feel that we are now debating the single largest source of concern in the Bill. Because of that it is vitally important that Amendment No. 13 is 100 per cent fit for the purpose. I have been encouraged by what I have heard about the attitude of the Archbishop of Cardiff, but I would like to press the Minister on one or two points.
Amendment No. 13 would result in the deletion of the current Clause 4(5). I am not sure that I am completely comfortable with that. Clause 4(5) is quite strong: it is a duty for a doctor to "begin by assuming" when deciding whether to continue life-sustaining treatment,
"that it will be in the person's interests for his life to continue".
That is surely a very important idea because it is like saying that before anyone even starts to embark on the decision-making process, the scales are weighted in favour of keeping a person alive. That built-in handicap against withdrawing or withholding treatment is not something that I see in Amendment No. 13 and I find that at least superficially troubling. We need to ask the Minister why that is.
Amendment No. 13 states that the person making the determination must not be motivated by a desire to bring about the person's death. I would like to follow the right reverend Prelate the Bishop of Oxford and my noble friend Lord St John of Fawsley by asking the Minister to be crystal clear about the legal meaning of the term "motivated". I am not a lawyer but I have always thought that guilt or innocence before the law in relation to any criminal offence, including murder, rested on the concept of mens rea, or, in English, the notion of intent. The motive that someone has when carrying out an act is strictly speaking neither here nor there in terms of the guilt or innocence of the person, other than as providing possible evidence of intent. My intention may be to kill someone by withholding treatment; my motive may be that I want to inherit the person's money.
A court might decide that what motivated someone to make a particular determination—let us say, to switch off a life-support machine from a patient—was that he wanted to relieve the patient's spouse of any further mental anguish, or that he wanted to free up the bed. The foreseeable consequence of turning off the machine was that the patient would die. The person did what he did intentionally, but he might not have particularly desired to see the patient die in order to achieve the end result that motivated him.
So we need to hear from the Minister whether a person who takes a particular course of action as a result of being motivated by a desire other than to kill, will in all circumstances be regarded by a court as having killed intentionally.
I ask one final question. Clause 4 sets out the makings of a process through which a carer or clinician, or whoever, will have to go in order to arrive at a judgment as to where a person's best interests lie. If necessary he will have to be able to show that he considered all the relevant parts of the best-interests test before taking a given course of action. That much is clear. What is not clear is whether he or she will also have to go through a separate process alongside that—if the Government's Amendment No. 13 is accepted—namely, assembling suitable evidence to demonstrate motive. One wonders what such evidence might consist of.
I hope that the Minister will say that there is no question of any separate process; rather that the process of determining best interests, and perhaps sharing the results of that process, will in itself provide all the evidence that a court will ever need about motive. In other words, if you can prove conclusively that the best-interests test has been met, you need not fear that a court will also ask you to prove to it what your motives were in taking the action that you did.
That may be an over-optimistic thought, but the point is quite important. The language of the amendment is one thing; what it means for people's understanding and practice day to day is another. Clearly the last thing that we should want to see emerging from the amendment is an obligation to obtain legal advice before any decision on behalf of a mentally incapacitated person is ever taken.
I hope that the Minister will be able to shed some unambiguous light on those issues.
I apologise to the House for intervening again, which I think I am entitled to do, but the point is of such crucial importance that it needs to be examined most carefully. I am extremely grateful to my noble friend who has just spoken for giving such importance to this point and lending the weight of his very considerable authority to it.
Perhaps I may quote another authority, perhaps even greater, namely the point made by Stephen in his History of the Criminal Law, which is one of the classic works of our law. He states that,
"the common maxim which is sometimes stated as if it were a positive rule of law, that a man must be held to intend the natural consequences of his act, I do not think that the rule in question is really a rule of law further or otherwise than it is a rule of common sense".
He goes on:
"The only possible way of discovering a man's intention is by looking at what he actually did and by considering what must have appeared to him at the time the natural consequences of his conduct".
Motive does not come into that at all. If I may be allowed to make a second quote:
"'Motive' was distinguished . . . from 'intention', as the desire prompting an act, a state of mind which the law cannot take into account. The point will be made clearer by an example. X fires a gun and kills Y. His intention in firing the gun is to bring about the death of Y. His motive may be to inherit Y's fortune, marry Y's wife, or merely hatred of Y. Motive is thus the reason which leads X to form his intention of killing Y. Whether this motive is good or bad is irrelevant as far"—
I wish the Minister would give me the courtesy of listening to this point because it is crucial.
I am indeed listening to the noble Lord with great intent. The fact that I was not looking at the noble Lord does not mean that I was not listening.
I feel that I was justified in feeling that I was being deprived of the approving glances of the Minister, which up to that point I had been basking in. If I may continue:
"Whether this motive is good or bad is irrelevant as far as the law is concerned, although it may well be relevant for the moralist".
Modesty forbids me to say where this quotation comes from, but to be totally honest with the House I confess that it comes from a book I wrote 50 years ago.
I apologise to the noble Lord if I failed to look at him with the appropriate glance, but I was indeed listening with great interest. I am sorry that he was modest in not telling us immediately about those words. I would be very grateful to borrow the book from the noble Lord at some point.
In speaking to the government amendments and in winding this debate I feel I must become a philosopher, a lawyer and a doctor in seeking to try to address all the points raised. It is important to begin by saying what my purpose is. It is as always for me important in Committee to have the opportunity to listen with great care, to respond where I can and to fulfil my commitment to consider what has been said. I will do that consistently throughout the Committee stage.
I was grateful for the comments that have been made about the way in which we have sought to deal with the Bill in the House. I can promise that I will continue as I have begun. I completely accept what the noble Lord, Lord Patten, alluded to: Parliament is sovereign in the determination of the Bill. It is noble Lords who will make the decisions about what may or may not be sent back to another place.
I am none the less grateful for all the interventions I have been fortunate to receive from different individuals and organisations. They range from the Archbishop of Cardiff, who has been extremely helpful, to the 39 organisations that form the Making Decisions Alliance, through to many noble Lords, Members of another place, individuals and organisations, particularly the BMA, the GMC, the Royal College of Psychiatrists, hospital doctors I have had the good fortune to meet and many others. It is in that spirit that I stand before the Committee today.
We will consider carefully the report of the Joint Committee on Human Rights that we received yesterday. We are clear that doctors must assess the objective question of "best interests" when considering the options available, particularly life-sustaining treatment. We will consider whether there is yet more we can add to Clause 4, in addition to government Amendment No. 13, to address the points that have been raised by the committee. However, we have not yet had a chance to consider the report in detail. I also wished to make sure that we had the benefit of this debate today.
Before I begin to weave my way through this rather large group of amendments—with a wry hint, as I was hoping that someone would degroup it, but, sadly, members of the Committee liked it—I shall deal with the questions that have been raised as best I can. I am sure that the Committee will not let me forget anything.
For the benefit of noble Lords who were not present at Second Reading, I shall make two or three key points about the Bill. It is about empowerment and protection. It is about the individual. It is also about the loved ones—those who care for individuals who may and do lack capacity—and the professionals who operate with them. It is not about euthanasia or assisted suicide. That is clear in what is in the Bill; it is also clear if one reads and understands the spirit of the Bill and the way in which it has been framed. I am really sorry about some of the press reports that have maligned an incredibly important piece of legislation. I know that the Committee will see those reports in that light.
The Bill recognises the autonomous nature of human beings. It recognises that they can be unwise. It recognises that an advance decision, properly made, with all the safeguards that we have put in place—we will discuss those as the Bill proceeds through Committee—is a way of expressing that autonomy for people. If one knows that one is going to lose capacity directly, or if one recognises that one might lose capacity, an advance decision is, in a sense, a way of expressing personal autonomy. The critical factor for our professionals, especially our medical staff, is that, if there is any doubt whatever about the advance decision, they must err on the side of treatment and operate as good clinicians and physicians do. We have built in much better safeguards than currently exist in common law.
The entire Bill is framed around the question of "best interests", which is an objective, not a subjective, test. It is not about what you or I or we may think about somebody's life. It is objective particularly in the context of the treatment given to the individual. That goes some way to addressing the point raised by the noble Earl, Lord Howe.
In opening the debate today, my noble friend Lord Brennan, spoke to a range of amendments, which I shall summarise briefly. I understand the intention behind the amendments—to add more protection for vulnerable people, especially where end-of-life decisions are concerned. My noble friend was concerned in particular that the Bill would make suicidal decisions more likely to succeed, putting the medical profession and other third parties in an extremely difficult position.
The amendments seek clarity on whether the principle of "best interests" applies to advance decisions to refuse treatment. They look at how "best interests" might be applied to young adults, as opposed to children, in the transitional phase between 17 years 11 months and 18 years, to which the noble Lord, Lord Alton, referred.
Amendment No. 97 would make it clear that no decision could be made with the primary purpose of bringing about the death of the person concerned, unless it would cause the person harm or be unreasonably burdensome.
Together with the noble Baroness, Lady Finlay, the noble Lord, Lord Alton, wants to see an explicit reference to the consideration of a person's life and well-being when a determination about best interests is made. They would like a statement in the Bill that no decision is permitted where the sole purpose is to bring someone's life to an end.
The noble Baroness, Lady Barker, supported by the noble Earl, Lord Howe, put down an amendment which, although it would apply to every "best interests" decision under the Bill, is particularly relevant to the important debate on end-of-life decision-making. Specifically, they want to make it clear that not only must those determining best interests reasonably believe that they have acted in someone's best interests, they must be able to demonstrate it.
In response to those concerns and other requests for reassurance sought at Second Reading by the noble Baroness, Lady Chapman, my noble friend Lord Clarke of Hampstead, the noble Baronesses Lady Masham and Lady Hanham, the noble Lord, Lord Maginnis, and Members of another place, I tabled the amendments standing in my name. They specifically address the concerns of those who want the Bill more explicitly to protect the most vulnerable people of all. They will make it clear in the Bill that when someone is making a "best interests" determination about life-sustaining treatment, they must not be motivated by a desire to bring about the person's death.
The noble Earl, Lord Howe, referred to the amendment tabled in another place by my honourable friend George Howarth. I give credit to my honourable friend for his work on the amendment. In the discussions and deliberations on that amendment, it was clear that there were real concerns about what was meant by the amendment and whether we could build on it, reflecting the spirit of what my honourable friend had done but taking it a step further.
On Report in another place, my honourable friend the Minister, Mr Lammy, said that we would table amendments to provide the clarification that stakeholders—particularly, but not exclusively, the Catholic Church—were seeking. As members of the Committee who were present at Second Reading will know, my noble and learned friend the Lord Chancellor confirmed that we would table those amendments. As the Archbishop of Cardiff indicated in letters and as I know from conversations with noble Lords, that fulfils the specific commitment made by my noble and learned friend in the letters of
In seeking to give the reassurance that has been sought, I must explain what the amendments will do. I completely understand what the noble Lord, Lord St John of Fawsley, was saying when he read from the book, and the issues that he and the noble Earl, Lord Howe, raised about mens rea and actus reus—concepts that I have had to get to grips with. The amendments are not designed to change the current law, but to make it transparently clear what is not part of any "best interests" determination.
The way in which noble Lords, including the right reverend Prelate the Bishop of Oxford, have dealt with this issue today reflects exactly the conversations and debates that took place in determining how we should address the concern and what we sought to do. We were asked to put something in the Bill that would be clearer about the best interests issues, not about changing the law.
I am most grateful to the noble Baroness for giving way. I regard that as heaping a coal of fire on my head, as I was a little brusque in my disappointment that I was no longer enjoying the favour of her countenance. Could she go a little further today and say that she will reconsider the question of motive and intention? It is of crucial importance that we get the right wording. "Intention", "motive" and "purpose" mean different things. I have the greatest respect for the most reverend Primate the Archbishop of Cardiff but, as far as I know, the Ordinary of Cardiff, though of great distinction, is not an infallible authority on theology, the law, or anything else for that matter.
It would be very helpful if the Minister would consider the question again. I am sure that she is sincere in trying to assist us all, and I would be grateful if I could have an encouraging reply to my modest suggestion.
As I have already indicated to the noble Lord, Lord St John of Fawsley, I intend to consider everything that has been said to me today. I fully appreciate that the noble Lord is looking at the issues of intent, purpose and motive. He will know far better than I that "intention" and "purpose" are used interchangeably in the courts; both cover the mental element of a crime, if I can describe it as such. They both cover the foresight of inevitable consequences. Motive, as the noble Earl, Lord Howe, said, is why people commit crimes—which is a different thing indeed. But we refer not to "motive" in Amendment No. 13 but to being "motivated". That is quite important, because we are considering best interests—
I could never conceive of the noble Earl as being stupid at all. But if Members of the Committee look where we have positioned Amendment No. 13—in the best interests clause—they will see that what we are saying is that, when making such determinations, the person should not be motivated or driven. There are other words that we could probably look for on that basis. I am trying to distinguish between that and a motive in law for what one is doing.
I recognise that these are extremely difficult concepts. They are for me, and I know that they are for some other noble Lords, because I can see their faces—or countenances—and they look slightly confused. But we have spent a great deal of time considering the question. That is why some of the deliberations with the most reverend Primate the Archbishop of Cardiff and others have taken such a long time. As the Committee clearly appreciates, which is extremely helpful for me, words such as "purpose" have a very specific meaning in English law. Given the way in which clinicians operate, one could find oneself accidentally preventing them from doing their job effectively because of the way in which the words are interpreted in law and are used by them.
I feel that I am straying into the subject matter of about four different groups of amendments, but none the less I shall continue. On considering when someone is doing something with purpose, one almost strays into the work that was done around the Bland judgment about what clinicians were doing. When clinicians act in the best interests of a patient with the treatment they give, they may give treatments that also have the effect of shortening life. The obvious examples could be the risks associated with chemotherapy and other such treatments. We have been very careful in this Bill to ensure that we have not put our clinicians in danger of being unable to carry out good clinical practice.
The Committee has replicated exactly some of the discussions that we have had about what words one can use that express the desire to ensure that the provision is not about allowing people to kill people—because, as one Member of the Committee said, they want to free up the bed. We want it recognised that it is not in best interests that one should operate in that way, without seeking to change the law. That is why the amendment is framed as it is. What we have been discussing with the most reverend Primate the Archbishop of Cardiff—and it has been very helpful that noble Lords and Members of another place have participated in that discussion—is the form of words that enables us to be absolutely crystal clear about best interests and what we are seeking to do.
The other example is in Clause 58, which says that nothing about the Bill alters the law on euthanasia. Of course it does not; but saying that has helped to impress what the Bill seeks to do on those who take an active interest, and has given greater clarity to that. That is what we are about in the work that we are doing on the Bill at this stage: we are ensuring that we have clarified the matter as far as possible, to leave no one in any doubt about where we stand on these issues.
On the point of government Amendment No. 13, I believe that the Committee is grateful to the Minister for the amount of intellectual energy that she has put into trying to help us to resolve the issue. But she will have heard the anxiety expressed from all sides of your Lordships' House during this Committee stage about the distinction between the word that the Government have chosen to use—"motive"—and the words used by the noble Lord, Lord St John of Fawsley, and the right reverend Prelate the Bishop of Oxford, such as "purpose" or "intent". Would she accept that the discussion should continue at Report stage and say that she would not rule out revising the choice of word for one of those preferred options that have been mentioned by so many Members of the Committee?
Forgive me for speaking again, but may I say how much I agree with what the noble Lord, Lord Alton, has just said? In my brief comments earlier about the report of the Select Committee on Medical Ethics which I chaired, I should have mentioned that we went into considerable detail about the distinction between "intention" and "motive", agreeing with what has been said on the other side of the House. If the amendment were to be changed to say something like,
"must not be actuated by the intention of bringing about death",
I believe that it would have the same meaning and would be helpful.
I assure the Committee that if there were a simple way through this, I would have taken it a very long time ago. The difficulty which the noble Lord, Lord Walton, has in a sense walked into is precisely the difficulty of what English law means. The noble Lord will know very well—and I apologise if I seem to be teaching him to suck eggs—that when choosing a particular form of treatment the clinician knows the consequences involved, which may have what is known in clinical circles as "double effect". That means that a treatment may have the purpose of helping to support the individual, but may also have implications in shortening life by a few hours, and so on.
We have sought to be absolutely crystal clear that we do not want to interfere with the way the law is at the moment. I have sought the best legal advice on this and discussed the matter with clinicians. I will of course continue to consider the issues, but I would not want to mislead the Committee, because what I am not going to do is to overturn the legal position that serves us so well. I am clear about what we were asked to do, which was to consider a clarification around "best interests". That is what we have done, and that is why the most reverend Primate the Archbishop of Cardiff has supported the amendment and why I hope that it will find favour with the Committee.
I am sorry not to have intervened before, but I am in the process of losing my voice. One further difficulty that I find about "motivation", apart from the obvious legal distinction between "motive" and "intent", is that overall the motivation of the clinician who seeks the best interests of the patient, with all the help that he can get, is the motivation of compassion. That point has been made frequently, and I entirely agree with it. That is the clinician's motive; and to say that he is not,
"motivated by a desire to bring about his death", seems to me all right, as long as it is not taken in the ordinary legal sense of "motive". But the clinician has a motive to bring about a patient's death if that is what the patient has perhaps originally put in the will—that in these circumstances, this is when the patient would like to die. But also the motivation is a desire to relieve the patient of extra suffering that would be imposed by futile extra treatment. That is another reason why I feel dubious about "motivation" in this context.
Will the Minister confirm whether I am right? We are considering best interest decisions—decisions that are taken because there is a point of difficulty. We are also talking about life-sustaining treatment. Without that treatment, the patient would be dead. I refer to a situation where a disease is causing a patient to progress inexorably towards death. You may have something with which you can intervene to delay that death. Your decision not to do that must be motivated by all the other aspects of best interest so that you do not inflict futile, harmful, burdensome treatments and do things which would deny other people treatment. If you have a limited number of ventilators, continuing to ventilate a person where it is futile may endanger the lives of others; that situation can occur in real life. However, you should not decide not to ventilate because you are motivated by a specific desire to bring about the death of the relevant patient. I wonder whether we have forgotten the line of the amendment that relates to life-sustaining treatment. Without the intervention that is being considered, the patient would die naturally anyway. Am I correct in what I have said?
Yes, the noble Baroness is correct. As I said, we seek to be clear regarding the concept of best interest and life-sustaining treatment. We have sought to capture what I term the "moral" notion of best interest. It is an objective test; it does not involve what I might consider is in the best interest but what actually is in the best interest. It is not a judgment about another person's life but concerns treatment and what is in that person's best interest. That is the critical issue. As I have indicated, we do not seek to overturn the law or to put clinicians in an impossible position. English law has a very particular understanding of, for example, the word "purpose".
That is all I have to say on the matter at this point. I have already said—and I mean it—that as we progress through Committee other issues will arise that come within the scope of some of the considerations that Members of the Committee have debated. We need to engage with the full debate about advance decisions and so on. I am thankful that the Committee stage enables us to explore issues and Report to confirm them. As I say, I shall consider all of the points that have been raised. However, I would not wish to see us move in a direction that overturns the law. That is in part why we have chosen the language that we have, and why it was sought. The language was sought by those who wished to ensure that we dealt with the best interest concern.
I am most grateful to the noble Baroness. I assure her I accept entirely that she has no intention—nor would she have the power—to overturn the basis of English law. Those of us who have expressed concern about this matter are concerned that this amendment does not make clear what the basis of English law is, and does not take it sufficiently into account.
I was most grateful for the intervention of the noble Baroness, Lady Warnock, because she brought us back to the fact that—I am glad that her voice had not entirely given out because what she said was so true and so germane—what we are considering here is not merely a legal quibble but questions of relieving suffering and extending compassion. However, in order to do that one has to find the right language. May I suggest to the Minister that she include in her discussions—this is an ecumenical remark—the right reverend Prelate the Bishop of Oxford, who has contributed so much not only to this issue but also to other issues in the difficult field of the relationship between moral theology and the law, and the noble and right reverend Lord, Lord Habgood, the former Primate, who has the astounding mind in this country on this issue? It would be very wise for the Government to make full use of that extraordinary instrument of clarity and intelligence.
As I think the noble Lord will know, I am open to discussions with any noble Lord who wishes to discuss matters with me. I hesitate to force the noble and right reverend Lord, Lord Habgood, or, indeed, the right reverend Prelate the Bishop of Oxford to do so, but I would be delighted to discuss the matter with them. However, that discussion would take place in the context of the way in which we have approached this matter. I wish to be clear about that.
I say to the noble Lord—I fear that I shall regret doing this—that one does not seek to define existing law within a new piece of legislation; one wants to ensure that existing law stands firm. In introducing a new piece of legislation—my experience of this to date is not great but I have come across it before—one does not want to disturb other well founded pieces of law. The law on criminal justice and murder is very clear and we have sought not to disturb it in any way. As I have indicated, I am always willing to undertake further discussions but I say to the noble Lord that those discussions must take place within the context of everything I have said hitherto.
I turn to the other amendments in the group. As I believe I have indicated already, we have sought to focus on the worthwhileness of the treatment for the person and not the worthwhileness of the person him or herself. I believe that in doing that we have met the underlying objective behind Amendment No. 11 in the names of the noble Lord, Lord Alton, and the noble Baroness, Lady Finlay. I believe that the noble Lord, Lord Patten, talked about life being futile. It is not a question of life being futile but rather of the treatment being futile. That is the critical difference, which I am sure the noble Lord accepts.
We believe that we have met the underlying objective of Amendment No. 97 in the names of the noble Lords, Lord Brennan and Lord Alton. However, I wish to say a little more about Amendments Nos. 97 and 99 and to explain some of the legal and technical problems relating to the drafting despite—I say this very clearly—the very positive intentions behind the amendments.
Amendment No. 97 seeks to prevent any measure in the Bill permitting a decision made with the primary purpose of,
"causing harm to, or bringing about the death of, the person", whose welfare is at stake. We have already talked a great deal about life-sustaining treatment. I also spoke about the meaning of "purpose". The noble Baroness, Lady Finlay, mentioned treatment that was unreasonably burdensome and the need to consider what benefits it can offer. We come back to the whole question of best interest.
Amendment No. 99 has similar wording to that of Amendment No. 97. Amendment No. 99 seeks to prevent a decision being valid if it has,
"the sole purpose of causing harm to, or bringing about the death of, the person about whose welfare the decision is made".
The same difficulty arises in connection with the word "purpose". It is important for noble Lords to reconsider these amendments in the context of the words that are used and the way in which they are determined in English law.
I turn to Amendment No. 17 in the name of the noble Baroness, Lady Barker. The amendment is supported by the noble Earl, Lord Howe. We have already made it clear—I have indicated this several times today—that best interest constitutes an objective test, which means that decision-makers have to give objective reasons for their decision. As the noble Baroness says, the Bill does not spell out a requirement to demonstrate an objective decision because that depends on when and to whom the demonstration would have to be made. Although the noble Baroness, Lady Barker, pre-empted what I am about to say by saying that one should not assume that the measure would leave the person unprotected or delay decisions, there is a concern that it could have that effect because one would have to work out how one was going to deal with it.
I draw the attention of the noble Baroness to point 4.28 on page 37 of the draft code of practice, which says that when the court is not involved, carers, relatives and others can only be expected to have reasonable grounds to believe that what they are doing or deciding is in the best interests of the person concerned. That does not mean that informal decision-makers can merely impose their views. Rather, they must be able to point to objective reasons to demonstrate why they believe that they are acting in the person's best interests. They must consider all the relevant circumstances and the four elements of the checklist.
We have covered the point made by the noble Baroness on the code of practice. I am sure that she will want to reflect whether that is sufficient, but it is better placed in the code of practice, which will be the living document used to support people when we implement the Bill. I am also advised that the legal effect of the requirement to have a reasoned belief is that you would have to demonstrate your grounds in a court of law. Between the combination of how it would work in practice in law and the code of practice, I hope that we have addressed in essence the points made by the noble Baroness.
On Amendment No. 19, the noble Lord, Lord Alton, made a point about the continuity of care; for example, speech therapy for young people. In my former existence, I was deeply concerned to ensure a smooth transition for young people. I cannot say that it is perfect in every case, but there are some clear indications in practice that this is now better than it used to be. I reassure the noble Lord that the courts have said that the best interest test for adults who lack capacity is akin to the welfare test for those under 18, so there is not a sudden moment at age 18, as the noble Lord feared, when the principles change, or the wishes of a person suddenly carry more weight within best interest. Of course, the difference is that the role of parental responsibility changes, because they lose their decision-making power once a young person reaches 18. The Bill requires that the views of family members be given full consideration. It might not be a formal decision-making power—that is right because they are now adults—but it is a factor to be taken into account. We believe that there is that smooth transition, and I have looked at this carefully, because it is an important point. I am happy to discuss this with the noble Lord, and I am happy to write further if that would help to clarify the issue.
We have said on this Bill, and many of the contributions today have covered this to some extent, that there are two routes for action and decisions about medical treatment. The first route is for third parties to act or make decisions for or on behalf of the person who lacks capacity, which must be taken according to best interests. We have had a long discussion about that. The second route is for the person him or herself to make a capacitated decision in advance to refuse treatment, so a decision by a third party would not be needed. Decisions made by the person him or herself are different from best interest decisions.
The noble Lord, Lord Brennan, in introducing this debate, suggested that the principle of allowing people to make unwise decisions in Clause 1(3) should be circumscribed, so that it is overridden if it is wholly irrational. I will not say anything further about the important points made by the noble Lord, Lord Mayhew, and the noble Baroness, Lady Carnegy, except to agree with them about the difficulty of "wholly irrational". I take what the noble Lord said about administrative law, but I am not sure that I accept the analogy. Administrative law as I understand it—and I have no doubt that I will be corrected by Members of the Committee—is about the courts controlling public authorities who must act in accordance with public law duties. Capacity is about whether an individual can go about a proper process of personal decision-making. I would not accept the analogy.
The noble Lord also talked about a mother in distress who makes an advance decision but the circumstances change. It is worth looking again at what we have said in the Bill, because we are clear about the safeguards. Where circumstances have changed, or where the person making the decision at that time could be shown to lack capacity for whatever reason—and it is a broad term in that sense—then the clinician can say, "this is not appropriate, it is unsafe; I am going to treat". He can treat with impunity, without any fear of any kind of comeback or recourse to law. That is important.
This is about the principle of autonomy, and many people, particularly from organisations representing those with physical or learning disabilities in particular, have fought long and hard for autonomy. The right to make choices is part of being an autonomous adult. As noble Lords have said, and I will not go over it again, the question of whether something is unwise is debatable. I hesitate to say this, but could a noble Lord who has never made an unwise decision please stand up? It is part and parcel of being autonomous.
We will come to this shortly in an amendment proposed by the noble Earl, Lord Howe, but it is important to weigh up the information, either because of a pattern or because it is clear that the person making the decision has not been able to weigh up the information—that is when the Bill kicks in. Someone might do something that we might consider unwise, and there are many examples. I used the example at Second Reading of going out and lighting up a cigarette, which might be considered unwise, but I would hesitate to suggest that noble Lords might not be able to do that. It is particularly relevant for young adults when they are striving to become autonomous. While I accept and understand what the noble Lord seeks to do, I do not accept that we could incorporate that.
On advance decisions, it is right to respect people's wishes. They are decisions that people with capacity can choose to make if they so wish. The principle that people can decide whether to refuse treatment arises from the common law, where it is clear that a competent adult's personal autonomy is paramount.
. I think that this is the quote that my noble friend was looking for:
"Prima facie, every adult has the right and capacity to decide whether or not he will accept medical treatment, even if a refusal may risk permanent injury to his health or even lead to premature death. Furthermore, it matters not whether the reasons for this refusal were rational or irrational, unknown or even non-existent. This is so, notwithstanding the very strong public interest in preserving the life and health of all citizens".
The noble Lord, Lord Goodhart, in his intervention on my noble friend Lord Brennan raised the issue of Jehovah's Witnesses, who make advance decisions that under no circumstances they would wish to have a blood transfusion. That is their right, however unwise or irrational any noble Lord might think it. That is where the noble and learned Lord, Lord Donaldson, takes us.
On Amendment No. 197, I have sympathy with the noble Lord, Lord Alton. I have no wish for professionals to be unclear about what to do if faced with, for example, a young person who has taken an overdose in a suicide attempt. The noble Lord and I discussed these examples last week, and I was grateful for his time. That is why we have ratcheted up in this Bill the raft of safeguards around advance decisions that are not in place now, because this is in common law and not in statute. Where treatment is necessary to sustain life, no advance decision will be binding unless it complies with the strict formality rules. It is hard to imagine that a young person who has been abandoned by a lover, or for whatever reason is depressed, unhappy, or miserable, would meet those rules. In any event, it must be clear that if someone makes an advance decision to refuse treatment, they would have the capacity to do so. That means being able to exercise free will in the absence of duress.
If the treating clinician has any doubt whatever—and I have tested this example on clinicians—about the validity and applicability of an advance decision, they can safely go ahead and provide the treatment. As I have indicated before because of something raised in another place, there could be no recourse in law. They cannot be sued for having done that. There are far more safeguards than under the current common law, and it is infinitely less rather than more likely that any putative advance decision could be considered binding by someone in that case. It is very important for the Committee to understand the matter; it makes a big difference in supporting clinicians taking action.
The noble Lord, Lord Alton, suggested a conscientious objection clause. Guidance to professionals on conscientious objections will continue as now but, legally, a doctor's position will be clearer than at present. Again, the GMC and BMA are comfortable and confident about the guidance that goes out to doctors about conscientious objection. I am happy to send notes of anything that we have to the noble Lord, but I repeat that, if a doctor has any doubt whatever about an advance decision, they can go ahead and treat.
It is an important point. The Minister was good enough to organise a meeting last week that a number of noble Lords were able to attend, addressed by Dr Michael Wilks, the chairman of the BMA's ethical committee. During that discussion upstairs, he said that doctors must act free from pressure where advance refusals are involved. Given the concern of many people in the profession that they might be expected to do things against their will, will she give further thought to writing a conscience clause into the Bill, rather than leaving the status quo?
Will the Minister return to the point raised by the noble Lord, Lord Carter, about the Suicide Act 1961? Parts I and II of that Act deal with anyone who aids and abets a suicide, and Part II is on the giving of counsel for the procuring of a suicide. She said that we must be careful not to disturb other parts of the criminal law. Given that that Act places a criminal liability for complicity in another's suicide on those who may have been involved, how will such provisions apply in the context of the Bill? Will she consider—again, as a declaratory provision—writing it into the Bill that nothing in it disturbs the 1961 Act?
I was going to address that point. I will consider what the noble Lord, Lord Alton, said, but he will appreciate that we have consulted the organisations that represent doctors in our discussions about whether there is a need to do further work around the conscientious objection clause. We will continue to consult them; they take responsibility on the issue. Thus far, they are very clear that the conscientious objection clauses work extremely well for clinicians and physicians. If he thinks that that is not right, we can discuss it separately, but that is their view, and they think that it will be covered in the Bill. I do not have any resistance to the issue, but the best way forward appears to be to leave matters as they are, because they work well. I am always reluctant to add to a Bill something that then needs to be interpreted if we have good practice that works extremely well.
The noble Lord reminded me of what my noble friend Lord Carter said about the 1961 Act. I shall cite the noble and learned Lord, Lord Goff, in the case of Mr Tony Bland, which I hope will add some light to the situation and at least give the Committee something to think about. I shall not quote precisely, I hasten to add, but am speaking from the officials' notes given to me. When a person with capacity refuses treatment, the law does not consider him to be committing suicide. His motive is irrelevant. He is merely exercising his right to refuse medical intervention. Therefore, it follows that a doctor does not aid or abet his suicide by respecting his wishes and withholding treatment. Aiding or abetting involves some encouragement or assistance, with the intention of furthering the crime or, in this case, the suicide. I hope that that helps my noble friend.
If an advance decision read, "I wish to kill myself", that is not an advance decision. An advance decision is a refusal of certain treatment. It has to be treatment-specific and circumstance-specific, so it would have to say, "I do not wish to have antibiotics if I am in the final stages of terminal cancer", and so on. The example that we have been using that gives greater clarity is blood transfusions; you might state that you did not wish to have them. You cannot say "I wish to die" or "I wish to kill myself"; that is not an advance decision, and a clinician would not act on it in that way. I hope that the combination of those two pieces of information goes some way to clarifying the issue.
I hope that I have dealt with quite a few of the points raised, but let me try to clear up two or three further ones before Members of the Committee leap up and say, "You haven't done mine". The noble Lord, Lord Patten, has a look on his face that suggests that he might do that.
The term is "countenance" this afternoon, which is a very good word.
The noble Baroness, Lady Finlay, talked about emergency situations in obstetrics and women refusing caesarean sections. There would be no change in the law. The courts would continue, as they do now, to make a ruling in the woman's best interests if she lacked capacity. If she has made an advance decision, it will be clearer and safer under the Bill, as the decision will not apply unless the strict formalities in the Bill have been used. That makes the position safer than it is now. We expect to continue to deal with emergency applications as necessary. The noble Baroness will know better than I do that hearings can be by phone and in the middle of the night if necessary; that practice will continue.
The noble Lord, Lord Patten, talked about the duty of care and there being no legal remedy if there is an attorney. An attorney has a duty of care to the patient—to P—in the well established law of agency, which will now be a statutory duty to act in P's best interests. If treatment is withheld in response to an attorney's decision, the attorney may be liable, even in gross negligence manslaughter. The doctor still retains the duty of care to P; that is not changed by the attorney in any sense. That is how we have sought to be clear about what an attorney may or may not do. That goes back to the clinician and the duty of care, and the "best interests" objective test.
The wishes of consultees also have no part to play in Clause 4. It is their views on P's best interests that are to be considered. As I said, "best interests" means what is best for P. It is not right to suggest that that excludes the promotion or improvement of health, because it must include that. I have already talked about whether the patient's life is worth while. The point is not the patient's life, but the treatment being in the best interests of the patient. That is another reason why we resist Amendment No. 11, because it would refocus us on the value of the person's life, rather than looking with greater clarity at the treatment.
The letter from my noble friend Lord Filkin about a doctor who thinks that an attorney is acting in a way that could be murder or manslaughter has been quoted. That takes us to the heart of the matter. I agree with what he said. It is also why doctors seek rulings from the court, which is important in ensuring that a doctor can continue to treat a patient while seeking the advice of the court if he has a concern. The ability to treat will be enshrined in this statute, which is important.
The noble Lord, Lord Walton, raised the changes in medicine in relation to advance decision. It is already clear in Clause 25(4)(c) that, where circumstances have changed—that includes where changes in medical practice or medicine have changed—there is no question but that the clinician can say, "The circumstances that prevailed when the advance decision was written no longer apply. We have a new drug. That treatment is not applicable". We shall come on to other examples when we deal with that provision, and I hope that they will make it clearer.
I have addressed as many of the issues as I can think of, and no one is leaping up to tell me that I have not. My final comment is on Amendment No. 18, which exists because an error has crept in. The word "his" should not be there. The reason I want to take it out is that in the case of a pregnant woman we want to ensure that the life of the baby, not only the life of the mother, must be considered. I have no doubt that that change will be welcomed by all Members of the Committee, but I wish to explain that it is purely a drafting error that has crept in. If left in, it means that the life of a baby would not be considered and I am sure that no noble Lord would want us to be in that position.
This Bill celebrates life and, as the noble Baroness, Lady Barker, said, is about living and how we live. That is what we seek with this Bill. It is about what is in people's objective, best interests, not about disregard for their lives. However, I respect the fears and concerns raised and always want to respond positively. I think that we are all geared to getting the Bill through in the best possible order. It is in that spirit that I shall take away and read through the points raised and promise to answer any questions that I have failed to answer at the Dispatch Box today, so that noble Lords can respond. I shall move the government amendments recognising that noble Lords may want to return to them at Report. In that spirit, I hope that the noble Lord will feel able to withdraw the amendment.
I am grateful to all noble Lords who have taken part in the debate. It has been extremely interesting to note the range of opinion on so many fundamental issues in the Bill.
I shall close my remarks on three issues. I refer, first, to personal autonomy. No one suggests that the right expressed by the noble and learned Lord, Lord Donaldson, does not exist. The question is whether it is an absolute right. When I tabled Amendment No. 1, I did not intend that it should be subjected to such vigorous dissection: legal, clerical, clinical and political. My motive was to stimulate debate about the question of the limits, if any, of personal autonomy. I am taken by the phrase "principled autonomy". The reason I included paragraph (b) is that American legislators and courts, which have had this kind of legislation, ultimately found it necessary to consider the balance in a certain number of cases.
My second point concerns the circumstances prevailing at the time a decision is made. Those members of the 1994 committee who have spoken illustrated concern by their then view that such advance decisions should not be in writing. So, as soon as we invest them with the legalities of the Bill, complexities abound. If they are not in writing, matters are much less complex. But I expect the Government to stand by the position that such matters should be in writing. The question then is: do we simply give effect to the bald words of the decision regardless of circumstances that applied at the time or later? Of course, we do not if we consider Clauses 4 and 25. I am particularly reassured that Clause 25(4)(c) gives doctors, proxies and courts, as the noble and right reverend Lord, Lord Habgood said, opportunities to avoid the consequences of a decision which, considered retrospectively, could not presently be supported.
I thank the noble Lord for giving way. My intention was not to say that they should not be in writing—obviously matters of this kind have to be—but that they should not be legally binding. They should be not legal documents but advisory documents to help the doctors to make their decision.
I am grateful for that correction to what I intended to say, which is that they should not be legally binding.
I turn to the last of my three points. When we consider the question of how an advance decision may fall to be put into effect, it is extremely important as we go through the Bill clause by clause to ensure that anyone whose job it is to give effect to this—whether medically, as a proxy or as a court—is entitled to take into account all the circumstances. It would be most unfortunate if we ended up with a legal framework in which there was not the "all the circumstances" provision that would enable the right decision to be made.
Finally, I shall comment on Amendment No. 13. In criminal law there are rules of mens rea in respect of murder, manslaughter and assisted suicide. There are requirements of specific intentions before the crime can be proven. The specific intention of each of them is to kill, cause serious injury or to cause a suicide by way of assistance. The phrase "motivated by desire" does not readily fit in with those concepts of specific intent. The clarity which some of us seek reflects that concern. Does this form of wording meet the concern?
I apologise for intervening again and am grateful to the noble Lord for giving way. Does he not agree that there is a crucial distinction between motive and intention? If I have a loaded pistol and I point it at someone's head and pull the trigger, it is quite clear that I intend to kill that person. The motive is the reason why I want to do that. It might be, for instance, that it is in self-defence. Therefore, if one takes the wording of a government amendment and alters it from "purpose" to "intention", does that not mean that it will become impossible to satisfy that test?
I begin my remarks by saying how much I welcome Clause 1 with its clear statement of the principles that are to be taken to apply to everything else contained within the Bill. The model adopted by the Mental Capacity Bill in this sense is one which many other Bills would do well to follow. It so happens that the amendment relates to a principle which many would regard as the most important and far reaching of all; that is, the principle which we have been debating, that of best interests, the practical meaning of which is covered in some detail in Clause 4.
In Clause 1 the overarching provision is quite simple and clear:
"An Act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests".
Again, I welcome that idea because it means that for the first time it is the mentally incapacitated person himself who in law occupies centre stage. It will not be enough to consider without a great deal of forethought what the person might have wanted to happen to them and leave it at that.
Still less would it be acceptable to treat someone who might or might not be lacking capacity as though they were not there and to take the decisions regardless of what their wishes, feelings and beliefs might be. "Best interests" runs much wider than wishes, feelings and beliefs, as the noble Baroness indicated. The duty of a carer looking after a person who has lost capacity, the duty of a doctor, attorney, court deputy or independent consultee will be governed by the obligation to act in the person's best interests at all times. That in itself is a tremendous safeguard for the vulnerable individual.
Against that background, the amendment may be somewhat nit-picking. There is one signal area of the Bill in which the principle of "best interests" is trumped: that is the part in Clauses 24 to 26 which deals with advance decisions. I do not want to anticipate our debates on whether or not advance decisions should be legally binding, and so forth. I ask the Committee to set aside that issue for now. What concerns me is the narrow point of what the Government seek to achieve.
The Bill makes clear that where a doctor is considering giving treatment to a person who is mentally incapacitated and that person had previously made an advance decision which is accepted as being both valid and applicable to the treatment in question, it does not matter whether or not the doctor believes that the withholding or withdrawing of the treatment is in the patient's best interests: the advance decision must be respected and put into effect. The doctor may well think the opposite: that withholding treatment may be dangerous or the wrong thing to do; but, as the Bill stands, the patient's decision must override that.
The pedantic point is this. Can we leave Clause 1 as making a blanket statement about the best interests principle in relation to the Bill as a whole? It is messy to have to qualify the principle in the way my amendment seeks to do. Yet it may be necessary if we are to have a Bill which is completely honest with itself. I hope that the Minister will see the point of the amendment. I beg to move.
I do indeed see the point. I was grateful for the recognition by the noble Earl that the incapacitated person is put centre stage of the Bill and that "best interests" be an objective test—the critical point made by the noble Earl.
I shall try to deal with the issue in a straightforward manner by taking us through the way in which the Bill works in this regard. Members of the Committee will know that anyone taking a decision on behalf of a person must do so in his or her best interests if the person lacks capacity. That is the principle of Clause 1(5) which states:
"An act done, or decision made . . . for or on behalf of a person who lacks capacity must be done, or made, in his best interests".
However, the Bill's provisions on advance decisions do not fall into that category. An advance decision is your personal choice. It is a decision you make yourself when you have capacity in anticipation of a time when you may lack capacity. So I do not believe that there is a collision between the advance decision clauses of the Bill and the principle of best interests. The advance decision clauses do not conflict with the principle in Clause 1(5) because nothing in the advance decision amounts to,
"an act done, or decision made . . . on behalf of a person who lacks capacity".
All decisions made in advance are made by people who have capacity. When a clinician follows a valid and applicable advance decision, he is not doing an act or making a decision on behalf of a person who lacks capacity to make his decision. The decision represents the person's decision to refuse treatment made at an earlier date. In other words, it is as though the person has capacity. That is how I describe it to the noble Earl. I make the decision in advance. I make it as I am now. It is on that basis that the clinician has that relationship with me. It is my decision. It is quite different from acting in the best interests of someone who lacks capacity and a decision is made on his or her behalf.
I believe that that explanation is clear but I am not certain that I have convinced the noble Earl. I do not know how to make it clearer. I am happy to discuss the issue with the noble Earl and to write to him if that helps. It is the difference between acting as though I still have capacity, therefore it is my decision; and not having capacity and someone acts on my behalf in my best interests. On that basis, I hope that the noble Earl will feel able to withdraw the amendment.
Of course, I shall withdraw the amendment although I find the Minister's reply a little baffling. If I have heard correctly, the noble Baroness said that advance decisions are not about acts done for or on behalf of someone else. I should have thought that the operation of Clauses 24 to 26 was very much about that. If one takes the withdrawal of treatment from an incapacitated person, that is a positive act done for someone else in accordance with an advance decision. As the Minister rightly said, the crucial difference is that it is the patient's own decision, rather than that of the doctor, which brings it about. The operation of those clauses means that by the very fact of the person being mentally incapacitated, someone else acts on his or her behalf. Someone else withdraws treatment—if that is what the decision says. That is a positive act done for or on behalf of that person. I am not sure that I am entirely with the noble Baroness. I do not know whether she wishes to add anything.
Perhaps I may try again. When the clinician follows that advance decision, he is not doing so on behalf of someone who lacks the capacity to make the decision. He is following the advance directive of the person who had capacity and made the decision. When is it done on behalf of a person? I have made the decision: it has not been made for me or on my behalf by the doctor. I am probably into semantics of the worst kind but I want to assure the noble Earl that it works in the context of the Bill and works, therefore, in law.
moved Amendment No. 3:
Page 1, line 16, at end insert—
"(7) An act done, or decision made under this Act by any person acting in a professional capacity, or for remuneration, for or on behalf of a person who lacks capacity must have regard for the matters mentioned in paragraphs (a) and (b) below in so far as they are relevant to the function being discharged—
(a) it must not be done in a way that is less favourable than the way in which it would be done or made for, or on behalf of any other person who lacks capacity, or for a person who had capacity, in a comparable situation, or
(b) it must be done without prejudice to the person's age, sex, sexual orientation, disability, religious persuasion, racial origin, cultural and linguistic background and membership of any ethnic group."
We return to principles. In deliberations on the Bill, enduring principles have been sought which can be applied in individual circumstances to achieve outcomes in the best interests of the individual who lacks capacity.
Throughout discussions, many have been conscious that not all human beings start from an equal base point. That is particularly so in relation to medical treatment. Throughout the long gestation of the Bill, I have talked frequently about it with people who have disabilities. Many fears—some of which have been articulated in previous amendments—stem not from any provision in the Bill but from a perception, sometimes from experience, of being treated in a way which is disadvantageous—having assumptions made about the value and quality of a person's life simply because of a disability.
For that reason many of us have sought a guarantee that the principles of the Bill will apply equally to people whatever their capacity and, crucially, their status, whether or not they lack capacity—age, disability and their distinctions as human beings.
The purpose underlying the amendment is to ensure that the principles of non-discrimination apply throughout the Bill. I mentioned this matter at Second Reading and I was grateful to the noble Baroness for the letter she wrote to me in reply. There is concern that there are some forms of disability which would not fall within the Bill; for example, people who have mental health conditions which are not permanent or not of a sufficiently long duration for them to be regarded as having a disability, and, therefore, come within the auspices of anti-disability discrimination legislation. That is a major concern. Throughout the Bill there are a number of places where, although they have sought to address temporary or episodic incapacity, it should be an important principle that we ensure there is a direct relationship between the two.
Secondly, I should explain why the amendment takes this form. Its purpose is to state at the front of the Bill a principle of equal consideration. In another and parallel universe, the Committee considering the Mental Health Bill had an interesting discussion with a Minister last week, on the same subject of principles at the front of that Bill, about the need for principles to be enduring. My contention is that the amendment's principles of non-discrimination on those grounds should continue.
The Minister set out at some length, in the letter she sent me after Second Reading, her reason for not being well disposed to such an amendment, saying that there was a read-across from the Disability Discrimination Act and the Disability Discrimination Bill, which is currently working its way through Parliament. I agree that there is a strong read-across. But I do not accept her argument that,
"the place for anti-discrimination provisions is in specific anti-discrimination legislation, where there is a proper framework supporting the measures and a proper enforcement mechanism", because I believe that anti-discriminatory principles run through all sorts of applications and different areas of policy. There is a strong case for restating those principles within specific pieces of legislation.
The noble Baroness should accept from statements made in earlier debates that I believe passionately in the freedoms and the dignity that this Bill will give to individuals, but people who have disabilities do not currently believe themselves to be at an equal level with the rest of us. They should be, but they are not.
When the Joint Committee considered this matter, we read an article in the Guardian by Jane Campbell—one of those newspaper articles that make such a profound impact on you that you cannot forget it. She has severe disabilities and talked about her experience of going into hospital and willing herself not to sleep for the duration of her stay, lest any decision be made about her, her life and her treatment that would have been adverse to her. That was a particular and powerfully articulated experience of one person. I believe that she spoke for many disabled people and their experience and expectations of the Health Service.
So, it is not otiose or wrong to replicate anti-discriminatory principles in the Bill, which will apply them in relation to people who have mental incapacity. That would be a good way to proceed. As I said at Second Reading, this is, in some ways, landmark legislation. It is viewed by people who lack capacity now as something of a "Bill of rights" for them. I do not believe that it would in any way undermine any part of the Bill by having an explicit assumption of equal consideration right at the front of it. I warmly recommend that the Minister accepts my arguments. I beg to move.
I was glad to add my name to the amendment, because throughout our discussions we have agreed that no assumptions should be made that life has less value for people who have difficulty in making decisions or need support to make those decisions.
The concerns stem from evidence, anecdotal and otherwise—in fact, it has been almost proved this week, and I shall return to that—that prejudices of attitudes about the quality of life of a person with serious learning disabilities, autism, mental health problems or a head injury, or another condition that leads to a loss of capacity can get in the way of supporting that person and how they are, what they want and what they need. This week I have heard—but not been able to obtain—reports about people with learning disabilities and other conditions having less life expectation than others.
I was given the example of a lady with a learning disability who had a stroke and was not treated properly as a result of that disability. My understanding is that if a stroke is dealt with quickly there is a chance of some recovery. The lack of treatment meant that she was permanently disabled—more so than she had been. The inference that one can draw is that the treatment given to people with learning disabilities is subconsciously affected. That seems to have been demonstrated by the report of reduced life expectation.
Perhaps the Minister may be brief in her answer, because in the answer given in the House of Commons it was pointed out that the Disability Discrimination Act 1995 and the Disability Discrimination Bill, which is currently proceeding through this House, will provide the protection for decisions and acts carried out under the Bill. In fact, they will not, because only last Thursday in Grand Committee I moved an amendment to the Disability Discrimination Bill to bring within its purview people with episodes of depression that totalled six months over a two-year period. That amendment was turned down, as I expected, by my noble friend on the grounds that the definition of disability in the 1995 Act, which the Government intend to keep to, is that it has to be last for at least 12 months. Depression usually involves episodes of a few months at a time, followed by a partial recovery.
If someone was profoundly depressed and, therefore, lacked capacity under the Bill, can we be sure that they will be protected by it, because they will not be protected by the Disability Discrimination Bill? The example of Jane Campbell, who we in the field of disability all know well, was extremely good. She is seriously disabled and contracted pneumonia. She was told by the doctor, "Well, I don't suppose that you'll want to be resuscitated". He took his own judgment on the value of her life. That was absolutely wrong and she made it clear that she did wish to be resuscitated—her husband also made that clear. One can imagine all the occasions when doctors may be making that sort of judgment for people who are severely disabled or have learning disabilities so they cannot communicate well and so on.
"the person's past and present wishes and feelings . . . the beliefs and values that would be likely to influence his decision if he had capacity, and . . . the other factors that he would be likely to consider if he were able to do so".
Would that meet our concerns? I am not sure it does, but it might be helpful. Is that the way that the Government, if they wish to, can deal with this? If they do not, I must agree that this principle should be in the Bill.
I rise to ask a question based on curiosity—and probably a certain amount of ignorance. I believe that the Roman Catholic doctrine on death is rather different from that of the Anglican and other Churches. They tend on the whole to strive much more officiously to keep alive, in a way that possibly—I look heavily at the right reverend Prelate the Bishop of Oxford to see if he can help me here—other Churches and religions would not. Would that influence be affected by the amendment? Should it be, or am I barking up a tree that is not even in the same forest?
As I have been called on, that phrase comes, paradoxically, from an agnostic 19th-century poet called Clough. He was quoted by a pope:
"Thou shalt not kill; but need'st not strive
Officiously to keep alive".
That has been accepted by the Roman Catholic and the Anglican Churches—and a good range of other people—as enshrining a great deal of common sense. It is now widely accepted. There is no fundamental difference.
I add to that point that the evidence received by the Select Committee on Medical Ethics, which I chaired and which reported in 1994, made it clear that the Anglican, Roman Catholic and Protestant Churches, the Muslims and many others agreed that there were circumstances when it was totally inappropriate to continue with futile treatment, even if that resulted in death. The one group that did not agree with the principle that anyone had the right to refuse treatment, even if it resulted in death, was the Jewish faith. They said that it was contrary to rabbinical law. They were the only group which dissented in that situation.
I am grateful for that enlightenment. How, therefore, does even that Jewish element of faith affect the anti-discrimination views of the noble Baroness, which I think we all agree with? How should it affect them?
I support the amendment for some of the reasons we have just heard. The amendment would provide a balance to the prevalent discrimination that people are actually unaware they are involved in.
It is extremely difficult not to make value judgments about a person's life when they are in the serious situation of lacking capacity. People believe wholeheartedly that they are acting in the person's best interests when they make such a judgment. Making the amendment to the Bill, even if it does no more than act as a sensible reminder that certain questions must be asked, would do a lot to counter what goes on all the time in our society. Sometimes people think they are kind, but often kindness can be misplaced. The people we are now discussing are at the bottom of the pile in terms of the value that society places on them, and it would be a help to them to make the amendment.
I added my name to the amendment because it so important to pull clinicians up short and make sure that they offer a treatment to somebody that they would have offered to another person who had full capacity, without being prejudiced by their perception that the person does not have capacity. Clinicians must have the right attitude to making sure that there is equipoise in the way that they approach the treatment offered. The person who looks good and has full capacity with a 20 per cent chance of responding to a treatment will be offered it, as will a person who lacks capacity to consent to the treatment. That is equipoise in terms of the value of life, and unless we do that, there is a subliminal message that, somehow, some lives may have less value or worth. It is to get rid of the inherent prejudice that can come in. I am not convinced that disability legislation will pull people up short in the way that this amendment would, if it were made.
I support the amendment. I will not repeat all the arguments that have been so ably put, but the amendment is very necessary in a society where, sadly, people with severe disabilities are not seen as having the same value as others. The amendment would rectify the balance, as the noble Baroness, Lady Greengross, said.
Any comments from me are otiose, but I emphasise my agreement with the points that have been made so very well, particularly that made by the noble Baroness, Lady Greengross. Given that we start off the Bill with this excellent set of principles, it is entirely right and appropriate to include an unambiguous declaratory statement of an ethical nature.
The statement says what we all believe, but more significantly it serves to buttress the general theme we debated in the first group of amendments. One cannot legislate against prejudicial attitudes, but one can make it clear, as the noble Baroness said, that such attitudes have no place when it comes to the operation of the Bill. This is not a Bill, then, where a priori presumptions about the relative values of different sorts of human life should play a part.
I have the papal doctrine available, and can send the noble Earl, Lord Onslow, a copy. However, I have no knowledge of rabbinical law. I wish the noble Baroness, Lady Barker, good luck in responding to that point. I am grateful to the noble Lord, Lord Walton, and we will endeavour to establish the specifics around the issue, in order to assist the noble Earl in the passage of the Bill.
In response to all noble Lords who have spoken in this debate, I completely understand and agree that no one should be discriminated against, nor receive substandard treatment as a result of disability, age, race, sex or indeed on any other grounds. I know this was an area of great discussion in another place and that the inclusion of such an equal consideration clause would mean a great deal not only to the noble Lords who have spoken but also to the Making Decisions Alliance, the I Decide coalition, and the Disability Rights Commission. In the spirit of the Bill, noble Lords will see that we are also trying to set out a way of changing attitudes and behaviour towards people who may lack capacity, which is a critical part of ensuring that people are not discriminated against. Declarations are one thing, changes of behaviour are the critical part.
My next paragraph begins, "unfortunately". It is extremely difficult to do this from a practical and legal standpoint. Noble Lords will know that discrimination is not a simple concept. We may know what we mean by discrimination, prejudice and less favourable treatment, but in law and in legislation it requires greater definition than has been given in this amendment. I know the toes of the noble Baroness, Lady Barker, will curl as I have said this before, but the only place where we can seriously put anti-discrimination provisions is in specific anti-discrimination legislation—which of course encompasses all of the different areas of life that we seek to address.
The reason, primarily, is that if we are to have such legislation, we need to have a way of determining whether someone has received less favourable treatment. That means that we need a proper framework to support the determination of that treatment and also an enforcement mechanism.
If we are not careful, we shall find ourselves being told, as we were last Thursday, that under the Disability Discrimination Bill depression is not regarded as disabling because it does not last for 12 months but that it can be dealt with under the Mental Capacity Bill. We now hear from the Minister that the Mental Capacity Bill cannot handle it and the issue is left to the Disability Discrimination Bill.
I was not present at the deliberations on the Disability Discrimination Bill, but I will read Hansard on the point. I suspect that there was an understanding, I am pleased to say, that people suffering from depression will lack capacity and should be regarded within the context of this Bill. However, I would hesitate to say that that would reflect issues of discrimination.
I say such things with regret because I would very much like to do everything I could to ensure that we had in place the right procedures. I simply make the point that one cannot make a declaratory statement of this nature without the framework, the way in which it would be determined and the enforcement procedures that would go with it, otherwise it would be ineffective at best.
I have already undertaken to reflect on whether there is anything we can do, but I want to make clear why I am resisting the amendment. It is specifically because the advice I have had—and I have pushed the issue, I hasten to add—indicates that we would have to proceed in that way.
My noble friend Lord Carter referred to issues of best interest. It would be inconceivable that giving someone less favourable treatment because of his disability, sex, age, race or sexual orientation could ever be considered to be in his best interests. Less favourable treatment could not be in someone's best interests, which is the point my noble friend is seeking. Within the ethos of this Bill, discrimination on any grounds would be entirely contrary to what we seek to do in protecting and empowering people.
I could go on and talk about the provisions within existing Acts, but I know that I am speaking to an audience who know the Acts far better than I, so I shall resist. I want to make three points in conclusion. First, the most critical part of what I want to see as a result of the Bill—we have an implementation in place not to pre-empt your Lordships' decisions or those of others but to recognise there is a lot to do—is to look at the cultural shifts that we need for people to understand incapacity and recognise and value all members of our society in the right and proper way. I might describe it as a more inclusive and accepting society.
I want also to look again at the code of practice, building on what was said by the noble Baroness, Lady Finlay, about "pulling clinicians up short". She can use that phrase, but I would not dream of using it, for obvious reasons. Perhaps few clinicians read legislation cover to cover, but we would look at the code of practice to see whether we can do more. The noble Baroness indicates that I am wrong and that clinicians do read it, but we can debate that.
I want to ensure that we can give greater emphasis around best interests to say that of course it can never, never be in someone's best interests to be discriminated against. I hope that that assurance will do something. However, as I have indicated, I will look again, but I cannot include the specific amendment before us because I would need to put that framework around it. Perhaps we can discuss the matter further and on that basis I hope that the noble Baroness is able to withdraw her amendment.
I want to say for the record that I was not implying that the Minister was wrong. I was signalling that the Bill influences the guidance and the guidance influences the message which goes out to the profession. The professional guidance affects their registration. That is what they adhere to and that is what will pull them up short. The amendment is about the way that a decision is made and that means it must be properly recorded in the case records and so forth. In going back to audit the notes, one would then be able to compare and make sure that there was no discrimination.
I am grateful to the noble Baroness. Legislation is not the only way to influence the code because my commitment to alter it is absolute. We will do that. I will happily discuss whether we can do more, but say simply to the noble Baroness, Lady Barker, that I cannot accept this amendment because I cannot do so without all the other things that are required.
I must confess that in my preparation for the Bill I did not come prepared to discuss Papal Bulls and, by the absence of my noble friend Lady Neuberger, neither did I come to discuss rabbinical law. However, I want to begin by addressing the key, important points made by the noble Earl, Lord Onslow.
My noble friend Lord Goodhart perhaps made the point for me. In response to the noble Lord, Lord Walton of Detchant, citing the evidence given to his Select Committee, my noble friend Lord Goodhart said that not all Jewish people would agree on that interpretation of rabbinical law. There we come to the point because one must look at the amendment also in relation to Clause 4(6), mentioned by the noble Lord, Lord Carter. It is the duty in the case of any individual to examine the person's past and present wishes and feelings, beliefs and values.
The point I seek to make was put forward by the noble Baronesses, Lady Finlay and Lady Greengross. There is a need to enshrine in law that anyone making an assumption about an individual on the basis of his membership of a particular group is no longer acceptable. The fact that one may establish that someone was a member of a particular faith may be a starting point from which to go on to determine under Clause 4(6) that individual's wishes and feelings, but it is not acceptable to stop at that initial point.
The second point I want to address was made by the noble Lord, Lord Carter. There is read-across between some of the discrimination legislation, but it is not sufficiently tight for this legislation to be acceptable.
I make my third point to the Minister. I do not accept that it is not possible to include a principled statement of this kind without constructing an implementation framework around it. The implementation framework for those principles is the rest of the Bill. That principle must be reflected, as do all the others, in all the mechanisms outwith the Bill. It is about the application of anti-discrimination legislation. I do not therefore believe that it is never possible to take anti-discrimination principles and to insert them into other legislation as a factor. This is perhaps a very good place in which to start.
I also say to the Minister that whether the department chooses to accept a similar provision on this occasion, the problem will not go away. It will return in other future legislation. That is because in different areas of life practitioners have moved on from the anti-discrimination legislation of years gone by and have begun to apply that. Anti-discrimination measures of this kind will continue to be principles which people seek to work into applications in other fields. And that is how it should be because discriminatory behaviour, or legislation about it, cannot for ever sit in some separate entity that is tied up in terms of anti-discrimination. It must begin to be reflected in different areas of life.
Therefore, while I accept that the Minister may consider my amendment inelegant, I do not accept her argument. I would greatly welcome the opportunity to meet her and her advisers to see whether in some way we can achieve what we are trying to edge towards.
I also agree with the noble Baroness, Lady Finlay, that it is important not only for clinicians and practitioners to know, but also for patients to have the wherewithal to call them up short. The noble Baroness might be frightened of doing so, but patients should not be.
It is because of the strength of feeling on this issue, particularly among people who have disabilities, that, although I shall withdraw the amendment at this stage, I shall not let it go without a further fight. I beg leave to withdraw the amendment.
Clause 2(1) describes what the Bill takes to be a person lacking capacity, that is, someone who is,
"unable to make a decision for himself . . . because of impairment of, or a disturbance in the functioning of, the mind or brain".
That all sounds entirely rational. But the phrase "at the material time" is where there may be room for confusion, because it is unclear when the material time might be. Is it when the person is incapacitated or could it be some time before, for example, when they make an advance directive?
I also raise this matter because of a potential conflict with Clauses 30 to 32, with which we will deal later. They set out all the safeguards and conditions under which research may be undertaken on patients lacking capacity. It could be taken that the wording in Clause 2(1) is paramount and takes precedence over later provisions.
It may be helpful if I gave an example of some of the effects. I gave this example at Second Reading, so I shall be brief. A patient has a fluctuating illness, say manic-depressive psychosis, in which his mental capacity fluctuates. It is entirely conceivable that such a patient, when he is well, will want research done on his condition and will give consent for it to be done then and in the future when he is incapacitated. The wording here might appear to prevent that consent being accepted, as it was not given at the material time. I can give other examples, including the UK Biobank project, where 500,000 people are being sought to give consent for research that will go on for 20 or 30 years. What happens to that research if and when someone becomes incapacitated? That person may be seen as not having the opportunity to opt out at any time that others have.
I recognise that the wording in this clause may not have the interpretation that I am giving to it. But the problem is that the wording may be confusing to those who have to take note of it: research ethics committees and researchers. Ethics committees will always, quite reasonably, lean to the cautious side where there is any possible conflict in interpretation. If my amendment is not accepted—although I hope my noble friend will accept it—I hope that, at the very least, research ethics committees will be given clear guidance in the regulations, as I think is suggested in the amendment of the noble Earl, Lord Howe, or in the guidance notes, or, even better, in both. I beg to move.
My Amendment No. 5 is grouped with the amendment of the noble Lord, Lord Turnberg. It was designed to achieve the same purpose, which is to flag up the concerns that he has so ably expressed. It may be of assistance to the Minister to know that these concerns have been raised with us by respected bodies that are genuinely unclear about what the Bill means. Those bodies include the Academy of Medical Sciences, the MRC, the Royal College of Physicians and the Wellcome Trust.
Like the noble Lord, Lord Turnberg, I do not want to anticipate our later debates relating to research on incapacitated people. However, to take his example, if someone with manic depression who had agreed while mentally competent to take part in a research project then loses capacity and at that point expresses a wish to withdraw from the project, what position does that place the researcher in? The person may have explicitly said that if, when he was manic, he stated an objection to continuing to take part in the project no notice should be taken of what he said. But can a researcher rely on that instruction? The more I look at this clause, the more I agree with the noble Lord, Lord Turnberg, that greater clarity might be helpful.
I am very grateful to noble Lords for bringing forward what I know are concerns of distinguished medical bodies. We are sympathetic to these concerns and are grateful to have the opportunity to clarify matters and to tell noble Lords what our intent will be. It is also good that they have welcomed the research clauses of the Bill. We look forward to debating them in due course.
In the meantime, two amendments have been tabled. The amendment of my noble friend Lord Turnberg simply deletes the words "at the material time" and the noble Earl, Lord Howe, has tabled an amendment to the same clause, Clause 2(1), that would provide that the Secretary of State can specify in regulations the meaning of "at the material time". I have been asked to assist in reducing confusion and to give some indication that we are dealing with the problem that researchers are anticipating.
The main problem is establishing whether consent to participating in research that is given while a person has capacity to do so survives loss of capacity or whether the consent ceases to be valid when capacity is lost. Noble Lords have rightly drawn attention to the kinds of research projects that might have begun before the Bill and will be ongoing when the legislation comes into force but which are not adversely affected by its provisions for research. There is, of course, a huge number of major trials involving many people where this situation might occur.
I understand that the term "at the material time" applies when the act that would be unlawful without consent—for example, taking blood—is done. So the material time is the time of the act; in this case, carried out in the context of research. I understand that it will be difficult and, in some cases, impossible for existing and ongoing projects to meet the requirements of Clause 31, which covers approval. In some cases, especially in long-term projects, consent to use and retain samples and data is given by participants in advance for research that is conducted over many years and that may well continue beyond the onset of loss of capacity.
We are concerned to achieve a smooth transition from the current practice to that in the Bill. If, for example, an ongoing research project has already been approved and the participants have consented in advance, we do not want the project to be brought to an untimely or unintentional stop because of the formulation of the Bill. Indeed, it could be detrimental to a project if a participant could no longer take part because he lacked capacity. However, it would be burdensome, possibly excessively so, to put the whole project through an additional set of safeguards required by the Bill if there is a risk that there is one participant who might lose capacity during the project. We have to get the balance right. We do not want to be unfair and move the goalposts in that way. So, in looking for the best of both worlds, we need to ensure that research is not subject to excessive interference, while simultaneously ensuring that we protect the rights and dignity of individuals.
We intend to clarify whether consent given in advance to an ongoing or long-term research project continues to be valid when the person loses capacity. We need to be absolutely sure that adequate safeguards are in place to protect individuals who may lose capacity. Of course, under Clause 33, there is a very important raft of safeguards concerning the withdrawal of people wishing to leave a research project.
We also need to be sure that any changes we make are the right ones. Making changes to key Clause 2, which provides a definition of people who lack capacity, would have implications for the whole of the Bill. Simply deleting the words, "at the material time", as my noble friend proposes, would undermine the Bill's time-specific approach to capacity, which we need to keep. I am sure that Members of the Committee would not want us to do that.
I suggest that we take this away and look at how we might bring forward an amendment that expresses the notion of continuing consent in those circumstances. We will certainly consult widely with the bodies that have made their concerns known. I also take the noble Lord's point about guidance, which we will think about. With those assurances, I hope that the noble Lord will be able to withdraw his amendment.
The amendments in this group relate to communication. Currently, all clauses concerning communication relate to ensuring that no one is considered to lack capacity simply because he lacks the relevant communication support. Throughout the Bill, it is not clear whether people will still require communication support to participate in decision-making processes and to express their wishes and feelings. It is difficult to see how, in practice, the best interests of a person will be assessed if that lack of support is not there.
The amendments refer to communication in different forms, including orally and visually, which is extremely important. We have spent a lot of time today talking about expressions of wishes in writing. There are quite a number of people who for different reasons are very capable of expressing their wishes, but who cannot write. There is also the additional issue of people who have to use specialist means of communication—for example, Makaton—or people with learning disabilities receiving information in forms of Easy Read.
As I was preparing for today, I heard an excellent example of how things might go wrong. It was about a lady who had had a stroke. While collecting her pension, she could not remember her PIN number and could not write. In her dealings with the bank, with the assistance of an advocate, a bank employee said, "Well, why don't you make your husband your power of attorney?". The lady concerned has a perfect ability to think and knows what she wants to do. She just cannot write. For the purposes of this Bill, that was a fortuitous example.
Much of this Bill, and whether it will work, depends wholly on communication and appropriate means of communication being available at all times. Ultimately, the question is why we should seek to put this in the Bill rather than in the code of practice, which, not surprisingly, has an extensive section on communication. There are two reasons for that. First, people who have caring responsibilities for people with very profound learning disabilities and very limited communication have expressed powerfully what that is like and how long it takes to understand what is meant by a person who has no speech.
The second reason concerns resources and can be expressed in two ways. Communication of that type and the time that it takes necessarily involves resources. There is a cost for the types of communication that are being suggested becoming best practice. In our minds, there is a question about whether something that exists in a code of practice will command enough authority. Beyond a code of practice, there is the requirement for all sorts of different organisations—perhaps those that have not ever really had to deal with this sort of issue before—to begin to develop good practice. I am not sure that lawyers and solicitors, for example, routinely have had to engage in this. For all those reasons, we believe that these amendments should be considered in depth. I beg to move.
Briefly, I would like to stress the point made by the noble Baroness, Lady Barker, about the need to have a very wide range of ways of helping people to communicate, which involves communication aids and relevant professionals, such as speech and language therapists. Like the noble Baroness, I have a concern that if there is not something in the Bill—I accept that the wording of the amendments may not be quite right and that there is some duplication in the wording—there will not be the lever when it comes to the rationing debate to say that the provision of assistance to communicate must become a higher priority in the delivery of healthcare services.
Part of the reason why that will not happen is the way budgets are controlled, which tends to be in silos. The provision of communication aids in speech and language therapy will be in one silo and will be quite separate from other services available to people who lack capacity. Therefore, they may become a lower priority, particularly because there are only one or two speech or language therapists attached to a service.
In addition, the pieces of equipment can appear to be quite an expensive outlay. It is a pity that the health economists are not doing a slightly more imaginative model because good communication could, if properly costed, prove to be cost-effective because we would be taking good decisions more quickly.
This group of amendments is designed to protect people who are unable to or have difficulty in communicating verbally, whether they lack mental capacity or not. Every effort must be made to ensure that they have the opportunity to "speak" by their usual means. That may not mean speaking with their voice; it may be a speaking computer linked to a wheelchair—that is, if a person is not in his wheelchair, he has no voice. It may be a symbol board where an interpreter is required.
People must not be judged as having no capacity because professionals did not avail the patient of every opportunity. Many medical professionals have little or no disability equality training. Although experts in their chosen field, that does not mean that they will have any knowledge of the many non-verbal communication methods now available. We must never forget that healthcare professionals are like the rest of society: there are good, bad and indifferent ones. As with the rest of society, some will be comfortable and relaxed and make every effort to communicate. Others will be uncomfortable, embarrassed and unsure of how to interact, perhaps with preconceived ideas.
Those are the two ends of the spectrum and people will inevitably fall between them at varying points. The amendments make it clear what their duties are, so whatever the background the process will be clear.
Speaking from a personal point of view, I have a grandson with Down's Syndrome who also has dyspraxia. It is possible that he may have to go through life only signing; words are coming, but he is not yet making sentences. It is essential that such boys, who grow up to be reasonably intelligent adults—but perhaps with a lack of ease of communication—should be given the right to communicate in the Bill.
I would like to speak to Amendment No. 9 in my name, which is also about communication, although on a different point. It would remove the word "general" and replace it with the word "the". That is simply because a general explanation can mean a good explanation in general plain English terms, but it can also mean that we say something to another person that is so general that it is better interpreted as, "I know best and I think you need to take my advice". We can so easily fob people off with a general type of argument such as, "It is good: if you have this operation you're going to feel a lot better".
I am thinking in particular of people in the early stages of Alzheimer's, who can understand a great deal but need a much more explicit explanation of what someone is talking about. We also know that any explanation is a two-way process. It needs to be in-depth: it takes a bit of time, and we need to get the reaction of the person to whom we are making an explanation. The word "general" makes the provision open to bad practice: it would be good if it were removed and replaced with "the", so that it is just an explanation.
I support Amendment No. 6 moved by the noble Baroness, Lady Barker, and also the amendment spoken to by my noble friend Lady Chapman. Earlier in our proceedings, I talked about the importance of continuity of treatment. The Minister discussed speech therapy, which is an issue close to my heart; we discuss it a great deal at home because my wife is a speech therapist in the National Health Service, specialising in the care of people—mainly adults—with disabilities. She often talks about the importance of learning to communicate in ways other than verbal communication, even though she is a speech therapist.
I have a friend who regularly visits someone in a hospice who was believed to have no ability to communicate. It was ultimately established through perseverance that just by a system of blinking of eyes he was able to communicate a great deal. He and his fellow patients have developed methods of playing games with one another, and it was therefore possible to create a way of penetrating the darkness in which his life had been until that time.
Where my noble friend talks in her amendment about the,
"necessary support for interpretation", she has an important point to make that we should accept and which goes further than the Bill's current provision. All of us who have forgotten our PIN numbers have a great deal of sympathy with the points made by the noble Baroness, Lady Barker.
Clause 3(1) sets out the circumstances in which a person is to be regarded as unable to make a decision for themselves. Amendment No. 8 would clarify the circumstances in which a person is to be regarded as unable to communicate his decision. It requires those assessing capacity to exhaust all means of allowing the person under assessment to communicate his decision. Those of us able to communicate with ease are often too quick to judge others who have communication difficulties as unable to communicate, when often all that they require is help and support with the use of some form of communication aid.
The Joint Committee, when considering the draft Bill, recommended codes of practice that,
"should state clearly that all relevant parties must use appropriate strategies to maximize the chance that persons will have the capacity to make decisions. This might include using specific communication strategies, providing information in more accessible form, or treating an underlying mental disorder to enable a person to regain capacity".
That principle of every possible means of allowing someone to communicate their decision should be exhausted and enshrined in the Bill. It is too important to be left to codes of practice. Even if the exact words in Amendments Nos. 6 and 8 are not acceptable to the Minister, I hope that she will go some way to accepting the arguments put forward.
I wish to support the principle set out in Amendment No. 8, which is grouped with Amendment No. 6, if only because a great many different kinds of communication aids are now available.
To take the most extreme example, there is a rare neurological condition called the locked-in syndrome, where the patient is totally incapable of writing, speaking and communicating in the standard way. However, while being extensively physically incapacitated—all four limbs are paralysed—they are able by movement of the eyeballs to activate electronically controlled equipment that enables them to communicate, often with great skill. For that reason, it is crucially important that a few additional words, as in Amendment No. 8, should be included in the Bill.
I put my name to Amendment No. 12. I can be brief, as all the arguments have been expressed extremely clearly. We can all agree that, while we need all the communication support possible while the person's capacity is being assessed, it is equally important that, once they have been assessed and been shown to be incapable or incapacitated, they should have the same help with their communication. Amendment No. 12 would mean that people who lack capacity have access to communication support when decisions about their lives are being taken. That will help to make sure that they are at the centre of the decision.
I was intending to quote recommendation 70 from the Joint Committee until the noble Lord, Lord Alton, did so. I will say as a fallback that, in the unlikely event that the Minister is unable to accept the amendments, I hope she will spell out clearly what will be in the code of practice.
I add my support to what has been said on the matter, to which I alluded at Second Reading. The issue that has come up that has not been stressed is the value and importance of time. There are many aids to communication of various complex and sophisticated natures, but the most important of all is time, which is often the most costly and the thing that people are most unwilling to devote to the difficult business of assessing.
It is not just in the assessment of people's capacity but, once some capacity has been established, in the drawing out of what can be achieved by the application of that capacity. It would be helpful if the Minister could say in what way stress can be laid either in the Bill or in codes of practice on the importance of devoting sufficient time of service providers to establishing a means of communication and then using it.
I support the general theme of the debate and in particular Amendment No. 6, where my name appears. I speak also to Amendment No. 14 in this group. I would like to spend a moment on the meaning of the phrase, "reasonably ascertainable" in Clause 4(6).
The information that is reasonably ascertainable will vary for different people in different situations. A doctor treating an unconscious patient in A&E may have to act with speed and therefore may not be able to take much time to ascertain what information is available about the person's beliefs or past wishes and feelings. On the other hand, a carer looking after an incapacitated person at home may have plenty of time to gather a great deal of relevant information about that person as a guide to where the person's best interests lie.
The point here is that what is "reasonably ascertainable" needs to be defined by reference to the circumstances that pertain in a given situation, not by reference to whether information is or is not theoretically available in some way. A doctor needs to know that in a dire emergency he can safely treat someone without falling foul of the law and without risk of being sued by the patient if and when he recovers. He does not want the patient to wake up and say "My telephone number was in my pocket. If only you had read it and taken half a minute to telephone my wife you would have found out that I am a Christian Scientist and that it is against my beliefs to accept conventional medical treatment. So I am going to sue you".
Professionals and unpaid carers need to know exactly where they stand in relation to the law and what they are expected to do to comply with it. This was a point made by the Joint Committee in its scrutiny of the previous draft Bill. I am not sure that, particularly for people who are not lawyers, the phrase "reasonably ascertainable" on its own provides the necessary signal that what is reasonably ascertainable in one situation may not be reasonably ascertainable in another.
Can the Minister assure me that the Bill as worded does not give rise to the kind of hazard I have described? Can she further assure me that while no doubt there will be appropriate guidance on these matters in the code of practice, there is no need to qualify the phrase "reasonably ascertainable" on the face of the Bill in the way that the amendment proposes?
Following on from the points raised by the noble Earl, Lord Howe, about the phrase "reasonably ascertainable", I hope the Minister can assure me that if the information about a person is not obtainable, the doctor will still treat that person. Otherwise it might be too late if the doctor waits for information that is not obtainable.
Perhaps I may begin in the reverse order because it will be useful to deal with Amendment No. 14 and the issues raised by the noble Earl, Lord Howe, and the noble Baroness, Lady Masham. It is my understanding that the situation would be as the noble Baroness, Lady Masham, described: that the doctor would treat the patient. Part of what we are trying to do with the Bill is to make it quite clear that doctors are covered when providing treatment. The phrase "reasonably ascertainable" is specifically designed to cover a range of circumstances. Where a patient is unconscious and the doctor is worried that his life is in danger, the medical staff would not waste time looking through the patient's pockets for a phone number; they would treat the patient and deal with such issues later.
The noble Earl has raised an important point. I shall certainly ensure that we clarify that in the code of practice. I shall look again at the wording and make sure it is absolutely right. I am grateful to the noble Earl and the noble Baroness for raising the matter. I am quite confident that that is what we intend and I shall make sure that that is what happens when we deal with it.
I am at one with noble Lords in recognising the importance of communication. Having spoken to the noble Lord, Lord Alton, whose wife is a speech therapist, I recognise that speech therapists often talk about different forms of communication. Indeed, the children, young people and adults with whom they are dealing often find alternative methods of communication too.
I accept completely what the noble Lord, Lord Rix, said about his own experience with his grandson, who I believe is called Robert.
I hope he is well.
Noble Lords have a great deal of experience in these issues and they know the importance of communication. We are very clear that we do not want people to be thought to lack capacity where the issue is one of communication—I believe that that goes to the heart of what noble Lords are looking for—and, indeed, where efforts are insufficient to help individuals understand what is happening and to communicate in return.
We amended the Bill in another place and I shall take a minute to go through what we have done. I want to ascertain how noble Lords wish to deal with this and offer them an opportunity to consider again. My premise is that the Bill is probably strong enough in the areas that noble Lords are concerned about and I shall deal specifically with the issues raised in each amendment. As I do so, I shall seek to address the underlying questions that noble Lords have raised about training, support and the code of practice.
As noble Lords will know, Clause 1(3) states:
"A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success".
That is, of course, about—and includes—communications support. That principle is built upon in Clause 3(1)(d), which makes it clear that a person cannot be considered as being unable to make a decision for himself if he is unable to communicate his decision by talking, using sign language or any other means. It is important to point out that this goes further than the Adults with Incapacity (Scotland) Act 2000. I know that some noble Lords have studied that Act and are interested in whether comparisons might be made.
In another place on Report there were some helpful representations from all sides of the House and from the Making Decisions Alliance, to which I pay tribute in this particular context as well as many others. We have brought forward an amendment to complement the requirements for communications support with a provision about helping a person to understand. The new Clause 3(2) provides that:
"A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand a general explanation of it"—
I should say to the noble Baroness, Lady Greengross, that I shall come to the meaning of "general" in a moment—
"given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means".
The purpose of the subsection is to make it absolutely clear that lack of capacity cannot be assumed simply because someone cannot understand a complex explanation of a matter. Instead, the particular needs of the person who may lack capacity should be considered and the information presented and explained accordingly. As noble Lords have indicated, that might include picture boards or audio tapes; it might mean speaking slowly or in different or simple language. The provision is deliberately extremely far-reaching and encompasses what I believe noble Lords are seeking to achieve.
The provisions in the Bill make it clear that no one should be treated as being unable to understand the information relevant to a decision and, in turn, be thought to lack capacity under Clause 2(1), merely because they have communication difficulties.
I should add that the draft code of practice contains further detail and guidance on the provision of communication support. Pages 18 and 19 of the code contain simple advice such as taking time to be with someone and getting to know them—a point made by my noble friend Lady McIntosh—as well as explaining the more complex approaches such as the use of electronic aids and language experts.
So, starting from that premise, that is what we are seeking to do.
I am very grateful to the noble Baroness, Lady Chapman, for the time she has taken with me today to talk through some of the issues, as well as discussing our cats, as I recall. Amendment No. 8 is, in a sense, a redrafting of the provisions for communications support. I contend that the existing reference to communicating by talking, using sign language or any other means is already extremely broad. It not only incorporates what is in the amendment but it retains flexibility. We are specifically seeking flexibility to take account of changing technology and so on.
The noble Lord, Lord Walton, referred to locked-in syndrome and the ways in which someone may be able to communicate using technology as well as by physical means. We are keen not to rule anything out because it is very important to enable that to happen. I accept completely the principle behind Amendment No. 8 but we believe that our wording gets us further than the wording of the amendment, for the reasons I have indicated.
As to Amendment No. 9, I understand entirely the concern of the noble Baroness, Lady Greengross, that the use of the word "general" in Clause 3(2) might allow people to give a cursory or inadequate explanation. I reassure the noble Baroness and other noble Lords that that is not the case.
The clause refers to a "general" explanation because it is trying to ensure that people cannot be treated as lacking capacity merely because they cannot understand a complex explanation, or perhaps one full of medical jargon. The clause requires that the relevant information is explained in a way that is easy for the person concerned to understand.
It should be clear, too, that this provision is not about the requirements to obtain consent or explain treatment; it is about when you regard someone as lacking capacity because they do not understand. It does not mean that doctors have to explain in only broad brush terms. Instead, where a person does not seem to understand an explanation that a doctor would normally give, the doctor must then consider whether that person can understand a general explanation of it in such a way as is appropriate. That is where the use of the word "general" comes in. If not, then that person may lack capacity.
So deleting the word "general" removes that middle step—the obligation to give broad, clear explanations. Deleting the word could mean that people might be regarded wrongly as lacking capacity simply because they cannot understand a complex explanation. It is where the word "general" fits and how it is used that is important.
But I understand the concerns and we will ensure that the code is amended to include further detail and guidance on that matter.
I turn to Amendments Nos. 12 and 14 which ensure that appropriate communication and support are given to help the person concerned participate as fully as possible in decisions affecting them and to communicate their present wishes, feelings, beliefs and values. Of course we accept that it is important to make sure that every effort is made to help people express their wishes and feelings.
As I have explained, the Bill already contains strong provisions for communication support within Clause 1(3). That applies throughout the Bill. Clause 4(4) provides that a person making the best interest determination,
"must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him".
It is a very broad obligation and it includes the provision of appropriate communication support.
It is also worth saying that, recognising the importance that we have placed on this, I discovered that the Department of Health set aside £12 million for the training and awareness programmes for the Bill for health and social care practitioners. Within that there will be work done on the importance of communication support and training carers to communicate effectively with people with impaired capacity so that we can spread good practice, but also ensure that we have that cultural and awareness shift that the Bill and the code seek to achieve.
My contention is that we have very broad provisions which apply throughout the Bill and which enable us to accept that technology or other changes may take place, and that the word "general" is positioned correctly for the specific use of the Bill and that we take on board the points made about the critical nature of communication, the time needed to achieve it and the time needed to spend with people. On that basis I hope that noble Lords will feel able to withdraw the amendment.
I similarly begin by dealing with this group of amendments in reverse. I was very encouraged by the response of the noble Baroness to the point of the noble Earl, Lord Howe. It is extremely helpful and welcome that the Minister will make those clarifications in the codes of practice.
I was also relieved to hear what the noble Baroness said, particularly in response to the noble Baroness, Lady Chapman. I believe that the big areas of concern for many of us are those forms and types of communication which take time, as the noble Baroness, Lady McIntosh, said, and where interpretation is a key factor to understanding.
I did not think that the Minister's response to the noble Baroness, Lady Greengross, was quite good enough. The opposite of "complex" is not "general". An explanation can be simple and specific—I am taking the Minister on as regards semantics. The drafting of Clause 3(2) is not good enough. The point of the noble Baroness, Lady Greengross, was right: it is possible to give a simple, specific explanation to somebody; it is not good enough to give them a general explanation. The Minister is wrong and the Government should look again at the drafting of that paragraph to address the concerns of the noble Baroness.
The noble Baroness, Lady Barker, has said more or less what I was going to say, except I ask the Minister if she could think of another word—"general" is the wrong word. While I am happy not to take this any further now, we have not had a satisfactory answer. There is something wrong there which needs to be thought about further. I would like to put a marker down and return to it later.
I go back to the illustration that I gave at Second Reading about explaining injections to people who have learning disabilities. There are different ways in which one can communicate what an injection is, which are quite specific but are delivered in different ways so that different people can gain an understanding of them.
I take what the Minister said about Amendments Nos. 6 and 8. I am heartened by what the noble Baroness said about training. Earlier on in our debate, the noble Baroness, Lady Finlay, talked about funding for communication being in silos. I think I talked about best practice being in silos. In some departments you find good practice in communication. Often where there is the biggest need for communication and training, it is in general areas such as primary care. It is the people who do not on a day-by-day basis have to deal with people who lack capacity who are the ones who need to have the training and to build up the best practice. That is the case not just within health but is found more widely.
It would be good to know from the Minister exactly what the thrust and emphasis of the deployment of those resources are, because it is more effective to concentrate them in other areas. But I welcome many of the Minister's statements and I beg leave to withdraw the amendment.