January 10th 2005
Speech by Lord Alton of Liverpool on the 2nd Reading of The Mental Capacity Bill.
I support the principle of creating a statutory framework to protect those individuals who lack mental capacity. Those organisations that have been campaigning for this Bill are rightly concerned with the deficiencies in the law in this area which have left people open to abuse and exploitation. As far as day to day care of the mentally incapacitated is concerned, there is much to do. Tightening up oversight of the financial affairs of those lacking mental capacity has been long delayed. Giving carers greater confidence in their legal standing when looking after those who lack capacity – dressing, washing, providing medication – is also welcome. The Joint Committee on the Draft Mental Incapacity Bill did some very valuable pioneering work in addressing many of these concerns.
This Bill represents a once in a generation opportunity to remedy the deficiencies that currently exist and safeguard the rights and interests of adults lacking mental capacity. That is why it is so important that we get it right.
In my contribution to the debate today I would like to flag up three key areas that I hope your Lordships House will give detailed consideration to at Committee and Report stages:
Most of my remarks will be about the withholding and withdrawing of medical treatment, including nutrition and hydration delivered by artificial means; often called euthanasia by omission.
I would also like to then briefly mention
The definition of “best interests” in the Bill; and, thirdly,
Medical research on the mentally incapacitated.
The noble Baroness, Baroness Ashton of Up Holland, who will reply to the debate, will be aware of my longstanding interest in this Bill.
On a number of occasions over the past year or so I met with her predecessor, the noble Lord, Lord Filkin, on a number of occasions. These meetings have been extremely useful and I am grateful to the Government, and in particular the noble Lord, Lord Filkin, to whom I pay tribute, for the painstaking and sensitive way in which he addressed many outstanding anxieties.
During the Bill’s passage in another place the debate was was dominated by this issue of euthanasia.
Supporters of the Bill have expressed concern about this, describing these fears as ill-informed or misguided and arguing that the positive elements in the Bill are being neglected.
At times it has even been implied that anyone who expresses any reservations about the Bill is guilty of trying to wreck it.
My Lords, the issues before us are central questions concerning life and death and it is the proper role of parliamentarians to scrutines legislation and to revise where necessary.
Putting to one side the euthanasia issue for a moment, there are other areas of the Bill that are deficient and that can be improved upon – not least the inadequate provision of independent advocacy; the need for regular reporting of how the lasting powers of attorney and court appointed deputies have been used; and maybe a sunset clause requiring the efficacy of the enacted legislation to be assessed in due course.
But, my Lords, when we reach Third Reading I and many other noble Lords would not want to be feel forced to vote against the Bill – and the positive aspects to which I have already alluded – because of any ambguities about euthanasia. Those concerns were well debated on December 14th in another place and are also set out in the all-party Early Day Motion336 tabled by Mr.Iain Duncan Smith, and supported by Mrs.Claire Curtis-Thomas and Mr.Paul Burstow. More than 106 Members had signed that Motion by this morning.
Let me turn, then, in detail to this first area of concern.
Like many others I am troubled by those clauses in the Mental Capacity Bill which, if unamended, might become a vehicle for euthanasia by omission. The Joint Committee and the Government have trenchantly argued that such creeping change – and euthansia by default – would be wholly ubnacceptable. In particular, I strongly welcome the Prime Minister’s recent remark that “we will not in any shape of form countenace the deliberate killing of people.” He went on to offer the hope that “ would have thought that that position would recommend itself to everyone.” Sadly, as we know from the unremitting campaign being waged by the proponents of euthanasia – and even supported by some members of your Lordships House – we know that it is not a position that recommends itself to everyone and that we must therefore particularly guard against euthanasia by stealth. Many will have read with concern the reported comments of the noble Baroness, Lady Warnock, on December 12th last, that it would be better for the elderly and frail to kill themselves rather than become a burden. She remarked that “Maybe it has come down to saying: Okay, they can stay alive, but the famnily will have to pay for it. Otherwise it will be an awful drain on public resources.”
She went on to say “I don’t see why the rest of us should be sacrificed to the scruples of the medical porfession.”
So the Prime Minister’s position does not “recommend itself to everyone” and these arguments about a person’s economic worth and about the subjugation of medical ethics must be clearly seen in the context of a Bill that gives legal backing to measures that may make frightened, sick or depressed people feel they have “a duty to die” and to sign a living will accordingly. While the Bill containsan excellent declaratory provision, at Clause 58, against euthanaisa by commission, the Lord Chacellor and his Ministers know that many highly respected observers have warned that it could indeed lead to euthanasia by ommission.
It would be disastrous if the Mental Capacity Bill, which has the laudable aim of seeking to transform the lives of mentally incapacitated individuals and their carers, were to become a vehicle for the introduction of euthanasia and assisted suicide. This could happen by the omission or withdrawal of medical treatment, including nutrition and hydration delivered by artificial means. Vulnerable adults who are supposed to be protected by this Bill would be placed at grave risk.
My Lords, I strongly welcome some of the important changes the Government have made to the Bill, in particular clause 58 and clause 26(2) on advance decisions. These are not “cosmetic” changes as has been suggested by some. From what the noble Lord, the Lord Chancellor has indicated today it is the Government’s intention to follow through both the logic of Clause 58 and the Prime Minister’s trenchant statement with safeguards on the issue of euthanasia by omission.
The withholding and withdrawing of medical treatment in the context of end of life decision making is an incredibly fraught and complex area. Those sections of the Bill that seek to regulate this – legally binding advance decisions to refuse treatment (including life sustaining treatment) and the appointment of proxy decision makers with power to direct medical professionals not to treat a patient – these are the provisions most feared by those of us who regard the Bill as an unintentional vehicle for euthanasia by omission.
My Lords we are not legislating for some utopian society where people make rational, informed decisions, where carers always have the best interests of patients at heart and where medical professionals operate in well managed and resourced hospitals. If media reports are to be believed, we are told that the Mental Capacity Bill will legalise so-called “living wills” and will allow attorneys or proxy decision makers to order doctors not to treat patients. In these circumstances it is incumbent upon the Government to clarify exactly what the Bill will, and will not, allow.
In particular I would draw the Minister’s attention to the excellent speech of her honourable friend, Mr.Brian Iddon, on December 14th who quoted official documents from other jurisdictions that approvingly stated that “the cost-saving from a nation-wide push towards living will is likely to be enormous” and the equally chilling remark of Dr.Helga Kusha, a supporter of euthanasia, who has publicly advised her colleagues that “if we can get people to accept the removal of all treatment and care – especially removal of food and fluids – they will see what a painful way this is to die ad then, in the patient’s best interests, they will accept the lethal injection.” So the strategy is clear.
I was struck by the briefing I received from the “I Decide” coalition, a group of disabled people’s organisations who are concerned about the negative impact of the Bill on their lives. They say; “the Mental Capacity Bill will make it harder for disabled people to protect our right to life if the decisions about our lives and our access to medical treatment are taken away from us and put in the hands of self appointed decision-makers. We are very worried that decisions will be made to withdraw medical treatment (which includes food and water), based on incorrect assumptions about the quality of our lives.”
So, ,My Lords, just as Clause 58 makes a welcome declaratory provision about euthanasia by commission, it is clear that the Bill needs to do the same thing in regard to euthanasia by omission will, as Mr.David Lammy – the Minister in another place – promised at column `1580 on December 14th in another place:
“We want to ensure, however, that under the Bill it is not possible for someone by omission to act to assist suicide or euthanasia.”
Many people have well-grounded fears that once the Bill is enacted, food and fluid delivered by artificial means will be withdrawn from non-dying mentally incapacitated patients. The inevitable result is that patients will die. The Mental Capacity Bill adopts professional guidance from the British Medical Association and the General Medical Council by classifying food and fluid delivered by artificial means as medical treatment. My Lords, since when have hunger and thirst been classed as illnesses requiring medical treatment?
I would draw the attention of the House to the recent High Court judgement in the recent case of Leslie Burke (R (Burke) v The General Medical Council) declared that current professional guidance on the withdrawal and/or withholding of food and fluid delivered by artificial means is unlawful in some cases. The judge in this case, Mr. Justice Munby, also referred to the suffering of patients caused by dehydration and starvation. He said; “I find it hard to envisage any circumstances…in which a withdrawal of ANH (artificial nutrition and hydration) in such circumstances – that is from a sentient patient, whether competent or incompetent – could be compatible with the (European) Convention (on Human Rights).” Mr. Justice Munby also went on to hold that where it is proposed to withhold or withdraw food and fluid delivered by artificial means prior judicial authorisation must be obtained in most circumstances.
The Mental Capacity Bill does not provide for this. Rather, it reflects current professional guidance on the withdrawal and/or withholding of treatment and food and fluids delivered by artificial means. As this has now been declared unlawful the Bill clearly requires amendment.
By conferring on proxies, and on patients making advance decisions, the statutory power to refuse treatment – and in that sense making treatment statutorily unlawful in various circumstances — and by granting these proxies the right to make determinations about the patient’s “best interests” 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 Act will favour both (a) omitting treatment in a range of cases where hitherto it would have been omitted only if the patient refused consent, and (b) in many cases ceasing to provide food and water, in circumstances where but for the Act such treatment and sustenance might well have been given.
An attorney, presuming 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 interests 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/she were the patient?
The Joint Committee of Human Rights, in its twenty-third report of session 2003-04 was severely critical of sections of the Bill dealing with the withholding and withdrawal or medical treatment. It concluded that the presumption in favour of life-sustaining treatment (including nutrition and hydration delivered by artificial means) is not sufficiently strong in the Bill to satisfy the requirements of Articles 2, 3 and 8 of the European Convention on Human Rights.
At Report stage in the other place a cross-party amendment was tabled to remedy this problem. Supporters included Mr.Iain Duncan-Smith MP and the Liberal Democrats Health spokesman, Paul Burstow MP. It would not have affected the court’s existing Bland jurisdiction – an important point as far as the Government is concerned – even though some of us remain opposed to the Bland judgement and the dangerous precedent set by your Lordships House in this case.
Although the Government resisted the amendment, the Lord Chancellor gave a welcome assurance to the Archbishop of Cardiff, and if suitably worded on the face of the Bill will assuage my fears about the Bill’s provisions on the withholding and withdrawing of medical treatment being a vehicle for euthanasia by omission would be assuaged.
What matters here are not the Government’s good intentions, or the good intentions of the Making Decisions Alliance. What matters is how health professionals and the courts will interpret the statute. Any vagueness or ambiguity in its provisions is bound, in practice, to be put to the test by the pro-euthanasia lobby. Clarity is vita; the devil will be in the detail.
The second area I would briefly like to flag up is that of “best interests”. All decisions taken in respect of the personal welfare of a mentally incapacitated patient must be in his or her “best interests” but this fails to calm my fears about the negative impact of this Bill. “Best interests” is the pivotal principle in the Bill therefore we must get the definition of “best interests” right.
There has been widespread concern about the subjective nature of the Bill’s definition of “best interests”. In response the Government supported and incorporated amendments at Report stage in another place so that where the determination of a person’s “best interests” relates to life-sustaining treatment any decision maker must now “begin by assuming that it will be in that person’s interests for his life to continue.” My Lords, I ask you to consider the full import of those well-intention words.
Far from making the situation better, this change actually makes the situation worse by encouraging decision makers to adopt a euthanasiast approach to decision making. It invites the wrong question to be asked, namely ‘Is it in this person’s best interests for his life to continue?’ The right question to be asking is ‘Is it in this person’s best interests to be provided with this treatment?’ Focus is placed on the worthwhile ness of the treatment rather than the worthwhile ness of the person’s life. This recalls again the emphasis in the remarks of the noble lady, Baroness Warnock, of the economic costs of treating the sick.
I hope that the Government will look again at this matter in Committee. From the start I have argued that it should be made explicit on the face of the Bill that when taking decisions about another individual’s personal welfare the decision maker must consider – as one factor along with many others – the person’s life and health as basic to that welfare. This is perfectly reasonable and I have to confess to being slightly confused as to why the Government has not agreed to such an amendment.
The third and final area that I would like to briefly flag up is that of medical research on the mentally incapacitated. The Joint Committee on Human Rights severely criticised the Bill’s proposals on medical research on the mentally incapacitated – particularly the controversial area of non-therapeutic research. The Joint Committee pointed out that the provisions in the Bill did not match those of the European Convention on Human Rights and Biomedicine. The UK has not yet ratified the Convention, but accepts in relation to its provisions on research that it represents “long-standing international consensus”.
“We find it impossible to avoid the conclusion that the nature of the benefit from the research required in clause 31(4) of the Bill has the effect of lowering the threshold of when research will be permissible compared to the standards contained in the Convention. The absence of a reference to the potential benefit being “real and direct” in clause 31(4)(a), the breadth of the test for whether the research is intended to add to the sum of general knowledge on the subject under clause 31(4)(b) and the absence of a structure in which it is only in exceptional cases that research may be conducted which does not have the potential to confer a direct benefit on the person concerned, all amount to relaxations of the standards contained in the Convention.
It is surely incumbent upon the Government to ensure, as the Joint Committee on Human Rights suggests, that the provisions on research are in accordance with internationally agreed standards. It is difficult to comprehend why a Bill, which purports to safeguard the rights of the mentally incapacitated, should allow research to take place on incapacitated people without their consent and without benefit to the person being experimented upon. Assurances from the BMA and others that everything will be in order and we just have to trust the researchers do not really wash with the general public in the light of recent medical scandals.
The World Medical Association’s Declaration of Helsinki provides a useful model for the Government to adopt, in particular the final section on non-therapeutic research:
1. In the purely scientific application of medical research carried out on a human being, it is the duty of the physician to remain the protector of the life and health of that person on whom biomedical research is being carried out…..
4. In research on man, the interest of science and society should never take precedence over consideration related to the well-being of the subject. “
This final paragraph is particularly relevant. If this form of words could be incorporated into the Bill it would assuage a lot of the fears surrounding medical research on the mentally incapacitated. The Government could also help by giving us some clear examples of the types of non-therapeutic research on the mentally incapacitated it envisages being approved under the Bill’s provisions.
These three areas of concern – euthanasia by omission, best interests, and medical research can all be addressed successfully by the Government and enable its passage at Third Reading and through the final stages in another place.
The amendments I and other noble lords propose would strengthen protection for vulnerable adults who fall under the Bill’s jurisdiction. I hope that the Government will accept the spirit of this constructive criticism and engagement and feel able to respond when we reach Committee and Report stages.
For the Uyghurs, Genocide is a word which dares not speak its name. For the sake of women like Rahima Mahmut, Gulzira Auelkhan, Sayragul Sauytbay, and Ruqiye Perhat – whose heart-breaking, shocking, stories are recorded here – it’s time that the crime of genocide was given definition in the UK. On January 19th Parliament can use its voice and speak that name – insisting on justice for victims of Genocide and refusing to make tawdry trade deals with those responsible for the crime above all crimes.
For the Uyghurs Genocide is a word which dares...