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You are here: BAILII >> Databases >> United Kingdom Journals >> Keown and Gormally, 'Human Dignity, Autonomy and Mentally Incapacitated Patients: A Critique of Who Decides?' URL: http://www.bailii.org/uk/other/journals/WebJCLI/1999/issue4/keown4.html Cite as: Keown and Gormally, 'Human Dignity, Autonomy and Mentally Incapacitated Patients: A Critique of Who Decides?' |
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University Lecturer in the Law and Ethics of Medicine,
University of Cambridge.
Fellow and Tutor, Queens' College, Cambridge
and
Director, Linacre Centre for Health Care Ethics,
60 Grove End Road,
St John's Wood,
London NW8 9NH
* We are most grateful to JM Finnis, Professor of Law and Legal Philosophy, University of Oxford, for his invaluable comments on an earlier version of this paper. We remain solely responsible for the paper's accuracy and contents.
Copyright © 1999 John Keown and Luke Gormally.
First Published in Web Journal of Current Legal Issues in association with
Blackstone Press Ltd.
In December 1997 the Lord Chancellor's Department published Who Decides?, a Consultation Paper broadly commending the Law Commission's proposals, contained in its Report on Mental Incapacity, for comprehensive legislation relating to decision-making for mentally-incapacitated adults. This article offers an ethical and legal critique of the proposals relating to healthcare decision-making. Having set out some fundamental ethical and legal principles which should govern any such legislation, the article argues that, as with court decisions such as Airedale NHS Trust v Bland [1993] AC 789, the legislative proposals underrate the value of human life, overrate the value of individual autonomy, and undermine the respect due to all the mentally incapacitated in virtue of their fundamental equality-in-dignity.
Of central concern is the scope the proposals give to the intentional termination of patients' lives by planned omission. The proposals would permit the intentional termination of patients' lives by planned omission of treatment and tube-feeding. They would also permit intentional assistance in suicidal refusals of treatment and tube-feeding (even refusals made in advance of incompetence). And, by allowing the mentally-incapacitated to be subjected to non-therapeutic research and procedures, the proposals would allow them to be used as means to an end.
3. The use of patients in medical research without consent and in non-therapeutic procedures.
In December 1997, the Lord Chancellor's Department published a Green Paper: Who Decides? (Green Paper 1997). This Consultation Document is in large part an exercise in commending the legislative proposals in the Law Commission's Report on Mental Incapacity (Law Com No 231) and states that the Government is "in a number of areas ... minded to accept the principles underlying the Law Commission's recommendations" (Green Paper 1997, para 1.4). This article offers an ethical and legal critique of the Green Paper's proposals concerning healthcare decision-making for the incompetent, not least as these proposals are among the most controversial.
Our three principal criticisms of both documents are:
If the proposals are enacted, the regulatory machinery they will establish will not unambiguously protect those vulnerable patients who are mentally incapacitated.
We acknowledge the need to clarify the legal position of those undertaking the care of mentally incapacitated adults who are not detained under the Mental Health Act 1983. And there is evidently merit in having a common framework of law to regulate decision-making for the mentally incapacitated which embraces their health and welfare broadly understood as well as their financial interests.
The task of producing such a comprehensive framework of law to regulate decision-making for the mentally incapacitated is extremely delicate. There are influential ideological tendencies in our society which depreciate the value of the lives of the mentally incapacitated and there are grounds for thinking that these tendencies may to some degree have found expression in the Law Commission's proposals.
Lest this suggestion be thought implausible (particularly in the light of the Commission's stated concern that "vulnerable people may not be getting all the help and protection they need and deserve" Law Com No 231, para 1.2), it is worthwhile outlining some of the proposals in the Commission's Mental Incapacity Bill (henceforth Law Com No 231 Bill), appended to its Report (Law Com No 231, pp219-284):
Precisely what is wrong with these proposals will be explained in Part II below.
There are a number of other reasons for thinking that the Commission's legislative proposals lack adequate regard for mentally incapacitated persons:
Each of these points will be expanded in Parts II and III below.
Who Decides? states that it is "not seeking views on [the] subject" of euthanasia (Green Paper, para 1.8), so it may be said that these last two criticisms of the Commission's proposals are inapt. Unfortunately they are not, and the attempt to exclude them from the consultation process is unwarranted.
The Consultation Paper seeks to sideline discussion of euthanasia as irrelevant to its proposals by the device of stipulatively defining euthanasia as "a deliberate intervention undertaken with the express intention of ending a life, albeit at the person's own request or for a merciful motive" (Green Paper, footnote 6 at para 4.5, emphasis added; see also para 1.8). The Paper appears to rely on the Report of the House of Lords' Select Committee on Medical Ethics for this definition. But that Select Committee's Report is equally open to the fundamental objection that, by fashioning a narrow definition of euthanasia which is neither ethically nor legally defensible, it also evaded one of the most challenging issues facing it. That issue was what Lord Mustill described in Airedale NHS Trust v Bland [1993] AC 789 at 887 as the "morally and intellectually misshapen" state of the common law resulting from the judgements in that case to the effect that it can be lawful intentionally to bring about someone's death by omission but unlawful to do so by a positive act. (See also Gormally 1995, pp 113-140, esp. p 124).
The Consultation Paper also seeks to deflect the criticism that its proposals in respect of advance refusals of treatment would accommodate suicidal refusals which doctors would be obliged to implement. The attempt to deflect this criticism takes the form of invoking the authority of Lord Goff's assertion in Bland [1993] AC 789 at 864 that "in cases of this kind [viz. advance refusals of treatment], there is no question of the patient having committed suicide, nor therefore of the doctor having aided and abetted him in doing so". Precisely what Lord Goff had in mind in saying this is by no means clear. What should be clear is that advance refusals of treatment (or care) can indeed be made with a suicidal intent, and that doctors who intentionally comply with such refusals can thereby assist in suicide. As we have noted elsewhere: "Suppose everyone knows that the patient's directive that on a certain date insulin (or food and water) be withdrawn was motivated simply by his intention of dying before the expiry of a term life insurance policy. On what legal principle is this not suicide?" (Gormally 1994, p 158). The Green Paper's invocation of Lord Goff's dictum cannot establish the contrary and serves merely to illustrate a characteristic feature of Who Decides?, derivative from the Law Commission Report: that of seeking to give statutory force to a number of judicial decisions of the past decade which are inconsistent with long-established principles of the common law. This feature of Who Decides? will be highlighted in Part III below. In our view what is needed is statutory reversal of some of these decisions both for the sake of justice in the treatment of the vulnerable and for the sake of coherent and consistent development of the law.
It cannot be right to seek to exclude substantial moral and legal issues from consideration in the assessment of legislative proposals when the substance of those issues is demonstrably at stake in the legislative proposals. Administrative declaration that such-and-such matters are "outside the scope of these proposals" is surely incompatible with democratic deliberation about legislation.
Top | Contents | Bibliography
The issues raised in Part I concern both (i) the value to be recognised in the lives of those lacking mental capacity to make decisions for themselves and (ii) what is therefore owing to them, especially by carers. Part II sets out some fundamental ethical considerations which ought to govern these matters, and some practical implications of those considerations. The explanation offered is in terms which are intellectually accessible to anyone and which ought, in our view, to commend themselves to anyone who recognises the need for an ethic of sufficient content to secure at least the basic requirements of justice in society.
It is necessary to begin with the recognition that every human being, however immature or mentally impaired, possesses a fundamental worth and dignity which are not lost as long as he or she is alive. Contrary to the view of some, human worth and dignity do not depend on acquiring and retaining some particular level of intellectual ability or capacity for choice or for communication. On that view of human worth and dignity, it turns out that the relevant level of intellectual ability (or whatever other characteristic is asserted to be morally decisive) always requires to be determined in an arbitrary fashion. In making the possession of human worth and dignity depend on an arbitrary discrimination between individuals, this view destroys the indispensable foundation of justice in society. For basic human rights belong to us precisely because of our worth and dignity, and if our possession of the latter is to be determined arbitrarily so will be our possession of the former. But there cannot be a framework conducive to just relationships in a society if who are to count as the subjects of justice is determined in an arbitrary fashion. That is why recognition of the fundamental worth and dignity of every human being is the indispensable foundation of justice in society (Gormally 1994, pp 118-126). In short, human rights are enjoyed in virtue of our common humanity, not the possession of some arbitrarily stipulated human ability at some arbitrarily stipulated level.
It follows from recognition of the fundamental worth and dignity of every human being that it can never be consistent with justice intentionally to kill a human being because his or her life is judged to be without value - because it is judged to be `not worthwhile'. So it is certainly absolutely impermissible intentionally (purposefully) to kill innocent human beings.(2) That moral prohibition is the core of the principle of the sanctity or inviolability of life,(3) and respect for the principle is an indispensable condition of respect for human beings.
It is necessary to distinguish between the inalienable worth and dignity proper to every human being and the kind of dignity exhibited most conspicuously by mature human beings in full possession of their powers of understanding and choice. The loss or diminution of these powers or of other abilities may result in what is subjectively experienced as a `loss of dignity'. But it would be a serious error to speak of the lives of those who have suffered such loss as wholly lacking dignity and the fundamental worth which that dignity imports.
This kind of error is exhibited in two kinds of judgement which one frequently encounters in discussions of the mentally incapacitated. It is exhibited, first, in the view that those who have suffered severe brain damage, resulting in permanent loss of consciousness or of cognitive abilities, no longer possess `worthwhile' lives. But this view is incompatible with recognition of their basic worth and dignity. It is the view which underlies the claim that it is reasonable to aim, at least by omitting treatment and care, to end the lives of these persons when they are patients. This judgement may also be arrived at on the basis of the assertion that such persons, being unaware, no longer have any `interests' (Green Paper, para 5.24; Law Com No 231, para 6.17; Airedale NHS Trust v Bland [1993] AC 789 at 897 per Lord Mustill) so that, there being no positive good of theirs at which one could aim, one may rather aim at ending their lives. But none of us needs to be conscious of all prospective benefits to be the recipient of those benefits. X can, for example, benefit Y by, unbeknown to Y, depositing a large sum in Y's bank account, or recommending Y to Z for an important post. And if we can be the recipients of benefits unawares we can have an interest in being benefited without that interest being a conscious interest. All of us, indeed, have an interest in not being treated in ways which are inconsistent with recognition of our dignity as human beings, whether or not we are aware of that interest. It would, for example, be inconsistent with a patient's dignity to subject the patient to a sexual assault. The assault offends the patient's dignity whether or not the patient is competent.
A second way in which the error of denying worth to certain human lives is exhibited is in the judgement that the value of a life depends wholly on the value a person gives to his or her life through their choices, and that the loss of the capacity to choose means that the only value in continued existence depends on the value they had chosen to attach to it when competent. This thinking lies behind the view that a person's choices made prior to loss of competence should be allowed to determine when his or her life is to be ended - at least when that may be purposefully achieved by omission of treatment or care.
However, exercises of autonomy (i.e. of the capacity for self-determining choice) are not the fundamental source of worth and value in a person's life. Human beings possess an ineradicable value prior and subsequent to the possibility of exercising autonomy. Autonomy itself as a capacity is to be valued precisely in so far as its exercise makes for the well-being and flourishing of the human beings who possess it. But it is plain that many exercises of the capacity, that is, many self-determining choices, are destructive of human well-being - both in the life of the chooser and in the lives of others affected by his or her choices. The mere fact that someone has chosen to act or to be treated in a certain way establishes no title to moral respect for what has been chosen. The character of the choice must satisfy certain criteria in order to warrant our respect. The most basic criterion is that a choice should be consistent with respect for the fundamental dignity both of the chooser and of others.
Since justice in society rests on belief in the ineradicable value of every human life, whatever its condition, a just legal system cannot tolerate choices to kill a person based on the judgement that his or her life is no longer worthwhile. This is, however, explicitly or implicitly, the judgement which standardly underpins the choice of suicide in the context of medical care,(4) the choice to assist a patient's suicide, and the choice of euthanasia. In the case of suicide, a person is persuaded that their life is now (or will be) no longer `worthwhile'. In cases of assisting suicide and of euthanasia, the person assisting or carrying out the killing is persuaded that the life of the person to be killed is no longer `worthwhile'; were they to think otherwise, they would have a conclusive reason for not killing.
Suicide (including assisting in suicide) and euthanasia may be carried out by omission as well as by action if what is aimed at by omitting, say, nourishment or some treatment, is the patient's death. Who Decides? is therefore mistaken in defining `euthanasia' as a "deliberate intervention undertaken with the express intention of ending a life, albeit at the person's own request or for a merciful motive". (Green Paper, footnote 6 at para 4.5 emphasis added; see also para 1.8.) It likewise fails to confront an issue central to its area of concern in overlooking the reality of suicidally motivated advance refusals of treatment.
In the absence of an adequate understanding of the moral and legal reality of euthanasia and suicide, the repeated assertions of Who Decides? (Green Paper, paras 1.8, 1.15, 2.6, 4.5) that the Government does not propose to change the law relating to euthanasia offer inadequate reassurance. In so far as current judicial practice is now governed by Bland, and specifically the ruling by a majority of the House of Lords that, provided it is not `positive action', it may be lawful (and indeed legally required) to adopt a `course of conduct' with the deliberate aim of terminating life, that judicial practice needs to be restored to a sounder legal basis. For the common law is now in what Lord Mustill in Bland described as the "morally and intellectually misshapen" condition of prohibiting active euthanasia yet permitting euthanasia by planned omission. This obviously incoherent state of affairs needs to be rectified by legislation reversing Bland.(5)
It is often falsely asserted by advocates of euthanasia that our legislators have declared suicide to be lawful behaviour, as if our society could endorse the assumption that a person might reasonably think any human life, even his own, no longer worthwhile. As we point out in Part III, this is a serious misreading of the Suicide Act 1961. That the law continues to take an adverse view of suicide is evident if one considers the seriousness of the penalty which attaches to assisting suicide. Because of the fundamental truth about the ineradicable value of human life, the law should continue to discourage assistance in suicide, even when the assistance takes the form of omitting care and treatment in accordance with the terms of an advance refusal of treatment.
It is one thing for the law to prohibit any assistance in suicide, including assistance in suicidal refusal of treatment or care. It would be quite another were it to oblige doctors always to override suicidal refusals. Doctors would satisfy the prohibition of assisting suicide by, for example, discharging from their care competent patients who persistently and suicidally refused life-preserving treatment or care. Compliance with the prohibition does not require doctors to do all they can to override suicidal refusal. There may, for example, be considerable physical difficulties which make force-feeding impracticable, or doctors may have urgent obligations to other patients.
It is important to distinguish, however, between the prohibition and the positive requirement mentioned here. Failure to attend to the distinction has led to the false inference that because there is no duty to override all suicidal refusals, it is permissible to assist them. This is no less false than inferring that because there is no duty to prevent crimes, it is permissible to assist them.
If part of the rationale for criminalizing non-consensual touching is that consent to having things done to one is a general condition for the exercise of autonomy, then the strict requirement of consent can rightly cede to other considerations with the loss of the capacity for self-determination, especially when what is proposed to be done is for one's bodily good. The view of the common law has hitherto been that the `necessity' of preserving the life or health of incompetent patients is sufficient justification for medical interventions without consent. As Lord Brandon put it in Re F [1990] 2 AC 1 at 55:
"The operation or other treatment will be in their best interests if, but only if, it is carried out in order either to save their lives, or to ensure improvement or prevent deterioration in their physical or mental health".
This view reflects a proper regard for the value of human life and for an objective and substantive conception of the `best interests' of patients. It should continue to be a carer's duty to act on an objective understanding of the best interests of the mentally impaired patient even if it means acting contrary to an advance refusal of treatment which is clearly contrary to the patient's best interests. As we have argued, autonomy is not the fundamental source of worth in a person's life and the invocation of autonomy should not be allowed to trump more basic considerations. The value of individual autonomy lies in serving the best interests of the individual, not vice-versa.
A patient's refusal of life-prolonging treatment need not, however, be intended to end his or her life. It can be reasonable to refuse such treatment on the grounds that it offers too little benefit for the burdens it involves, or because, whatever the benefits, the attendant burdens, either of physical pain, or psychological stress, or social dislocation, or economic hardship make the treatment intolerable. Given the great variation in dispositions and circumstances between individuals, it is clear that what is intolerable or excessively burdensome to one patient may not be to another. In assessing the likely burdens of treatment for a mentally incapacitated patient, account will often have to be taken either of the testimony of relatives and friends about the patient's dispositions and circumstances or of written testimony provided by the patient when competent. Advance declarations which are not binding can play a useful role in informing doctors of a patient's dispositions and circumstances.
The foregoing considerations are relevant to a correct understanding of what is involved in acting in the `best interests' of the patient. The understanding of `best interests' advanced by Who Decides? (Green Paper, paras 3.22-3.25), following the Law Commission (Law Com No 231, paras 3.24-3.28), lacks those objective ingredients which are necessary in order to avoid abuse of the mentally incapacitated.(6) As noted above, it is indeed appropriate, in seeking to establish whether treatment is likely to be unduly burdensome to a patient, to consult relatives and others well-placed to know. But the views of others on a patient's "wishes and feelings and what would be in his or her best interests" (Green Paper, para 3.23) should be allowed to influence decision making for the patient only if they are consistent with an objective, substantive conception of the `best interests' of the patient.
Truly objective criteria of what is in a patient's best interests exclude the judgement that it is in a patient's best interests to have his life ended through conduct (whether `act' or `omission') intended to end his or her life. For the intention which such conduct carries out treats the life thus deliberately suppressed as no longer a good to be respected; in that way it treats the patient's very being as no longer worthwhile. It thus denies the inherent worth and dignity of seriously incapacitated human beings. If an advance refusal of treatment is clearly motivated by the view of the person who made it that in such-and-such conditions his life would be no longer worthwhile and for that reason he would want doctors to end treatment and care precisely to end his life, then it should not be permissible, let alone obligatory, for doctors to comply with that refusal.
In the area of healthcare, the concept of `best interests' should be understood to include the standard objectives of healthcare practice: the restoration and maintenance of health, or of whatever degree of well-functioning can be achieved; the prolongation of life; and the control of symptoms when cure cannot be achieved. It is in serving these ends that doctors serve the good - and, therefore, the best interests - of their patients.
If the understanding of `best interests' fails to include objective, substantive requirements there will be no non-arbitrary way of judging whether the testimony of relatives and others about a patient's `preferences' is self-serving; no non-arbitrary way of settling differences of opinion; and no objective criteria for determining whether a regulatory system is in fact operating to protect patients.
Finally, the attitude of Who Decides? to non-therapeutic experimentation on, and organ transplantation from, the mentally incapacitated treats them as means to be used, on characteristically utilitarian grounds, for the ends of others. No doubt useful knowledge can be gained from experimenting on people without their consent, and functional capacity can be restored to others by transplanting organs from those who cannot consent to parting with their organs. But the moral justification for such procedures is voluntary solidarity with others, that is, a willingness to meet the needs of others in ways which involve some cost to oneself with no comparable benefit. If one subjects people to non-therapeutic experimentation or to removal of organs or tissue without their consent, one is failing to respect them as persons and is treating them as akin to objects.
Those charged with making decisions for the mentally impaired should not think they have any moral warrant, independent of an advance statement offering specific warrant, to authorise non-therapeutic experimentation or removal of non-vital organs or tissue from patients. (For one limited type of circumstance which provides an exception to this requirement for organ donation see Part IV below). Vital organs should, moreover, never be removed prior to ascertaining that the person from whom they are to be removed is certainly dead.
Top | Contents | Bibliography
In order fully to understand the main principled objections to Who Decides?, it is helpful to have some appreciation of the extent to which the law has historically enshrined the ethical fundamentals advanced in Part II and how in recent years decisions of the courts have tended seriously to weaken the law's adherence to those principles. For it is against the background of, if not under the influence of, these recent decisions that the Law Commission Report and the Consultation Paper have been drafted.
Part III will, firstly, sketch the law's adoption of the principle of the inviolability of human life and its recognition of the important yet subordinate value of individual autonomy before, secondly, tracing the inversion of these values by recent judicial decisions (see generally Finnis 1994, Hornett 1995, Keown 1997).
As noted in Part II, the principle of the `sanctity' or `inviolability' of life holds that because the lives of all human beings share the same fundamental worth simply in virtue of their humanity, regardless of their physical or mental abilities or disabilities, it is always wrong intentionally to kill another person for reasons other than the requirements of justice. This principle, a hallmark of civilised societies, is enshrined in Article 2 of the European Convention for the Protection of Human Rights and Fundamental Freedoms. Article 2 provides that:
"Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of the sentence of a court following his conviction of a crime for which this penalty is provided by law." (Article 2 (1), emphasis added.)
The principle has also long been enshrined in our criminal law. In particular, intentionally to kill an innocent person constitutes the offence of murder. And it is well established that murder can be committed either by an act or by an omission in situations where there is a duty to act. It is also clear law that it is murder regardless of the request or consent of the victim. Further, suicide was, until relatively recently, a serious criminal offence and assisting suicide remains a serious offence.
In short, the criminal law has traditionally held that the value of human life transcends the value of individual autonomy. Life is valuable in itself, whether or not the individual possesses certain physical or mental abilities, or considers his or her life to lack worth. The law has steadfastly refused to discriminate between those thought to have `worthwhile' and `not worthwhile' lives.
Autonomy is, therefore, trumped by the inviolability of life. But it is also commonly trumped by other principles and policies. Indeed, individual autonomy is extensively restricted by the criminal law. It is often restricted in the interests of others, but sometimes solely in the interests of the individual. Not only, therefore, does the law prohibit murder and rape; it also prohibits the possession of certain drugs, even for one's own use, and the infliction of actual bodily harm, even with the victim's consent.
Sometimes, the criminal law requires positive conduct. Usually, this will be for the benefit of others, such as caring for one's children or even, at least in wartime, risking one's life for one's country. But occasionally it will be largely if not exclusively in the individual's own interests, such as wearing seatbelts when driving or being driven in a vehicle. In short, the law has historically accorded individual autonomy an important, but subordinate and qualified status, a status consistent with the understanding of its ethical value sketched in Part II rather than with the inflated significance uncritically accorded to it in the Law Commission's Report and in Who Decides?
Unfortunately, in recent years the courts, misunderstanding some of the ethical fundamentals underpinning the law, have arrived at decisions which effectively undermine the inviolability of human life and exaggerate the significance of autonomy, sometimes doing the former by doing the latter. In a series of decisions culminating in the landmark case of Airedale NHS Trust v Bland [1993] AC 789 the courts have fatally compromised the law's adherence to the principle of the inviolability of life. They have done so by holding that, while it remains murder for a doctor intentionally to kill a patient by an act, in certain circumstances a doctor may (if not must) intentionally terminate a patient's life by deliberate omission. As noted in Part II, Lord Mustill observed in Bland [1993] AC 789 at 887 that this has left the law in a "morally and intellectually misshapen" state. Yet the Law Commission's Report and the Government's Consultation Paper, far from proposing that the law be returned to its former, coherent shape, have advanced proposals which would serve only to perpetuate its inconsistency.
Centrally by failing to prohibit the withholding or withdrawal of medical treatment with intent to kill, the proposals in the Consultation Paper would appear to accommodate the intentional killing of patients by the deliberate withholding or withdrawal of treatment on the basis of a judgement that their lives are `not worthwhile'. There is nothing in the Consultation Paper to prohibit such judgements. In particular, the proposed concept of `best interests', although foundational to the entire edifice of the proposals, lacks substantive content and ignores the fundamental proposition that it can never be in a patient's best interests to be intentionally killed. It appears that the patient's `best interests' are, essentially, whatever he or she thinks (or, even more questionably, would think if able to do so) is in his or her best interests, and/or whatever "other people" think he or she thinks and what they think is in his or her best interests.
Leaving aside questions about how a doctor is to ascertain what an incompetent patient would have thought (particularly if they have never been competent), or how a doctor is to resolve disagreements between what the patient thought (or would have thought) and what other people think, a fundamental objection to the Consultation Paper's concept of `best interests' is that, in a rather Alice-in-Wonderland way, it collapses into whatever people happen to think it is. Such a concept is both erroneous and dangerous. Erroneous because it is quite possible for competent individuals, when making decisions for themselves, to be mistaken about what is in their own best interests, and no less possible for someone acting on behalf of incompetent individuals to be mistaken about what is in their best interests. In short, some things (like being fed and kept comfortable) are in an incompetent patient's best interests and some (like being exhibited as a public spectacle or being killed) are not, regardless of what the patient, or others, happen to think.
Not only is the Consultation Paper's proposed definition (or explanation) of `best interests' erroneous; it is also dangerous. For if the best interests of incompetent patients are to be determined largely if not exclusively simply by the "views of other people", then what is to prevent others judging that the patient would be better off dead and that his or her life should be intentionally terminated, albeit by the withholding or withdrawal of treatment?
Similarly, if the determination of the incompetent patient's `best interests' is to be arrived at on the basis of the patient's past wishes, and it is thought that the patient's past wish was for his or her life to be terminated by the withholding or withdrawal of medical treatment in the situation which has materialised, doctors will be placed in the position of being legally required to implement such a wish, even if it was an unambiguously suicidal wish.
Moreover, as Part II argued, Who Decides? not only undervalues human life but also exaggerates the importance of individual autonomy. This exaggeration is evident not only in the unqualified importance accorded to the patient's present or past "wishes and feelings" in the quasi-definition of `best interests' (Green Paper, para 3.23) but also in its proposals in respect of advance refusals of treatment. The Consultation Paper, like the Law Commission Report before it, seems to adopt the view that patients have a virtually unqualified right to refuse medical treatment, even in advance of incompetence.
Here too, it is instructive to view the proposals in the light of judicial decisions which have accorded an exaggerated scope and significance to the patient's right to refuse treatment. It is uncontroversial that competent patients have a right to refuse treatments which offer no reasonable prospect of benefit or which they would find excessively burdensome. But the courts have gone much further than this, holding that competent patients have an "absolute right" to refuse treatment "notwithstanding that the reasons for making the choice are rational, irrational, unknown, or even non-existent ..." (Re T [1992] 3 WLR 782 at 786 per Lord Donaldson MR) and that, provided certain conditions are satisfied, this right can be exercised in advance of incompetence (Re T [1992] 3 WLR 782 at 787; Re C [1994] 1 All ER 849; Airedale NHS Trust v Bland [1993] AC 789 at 864 per Lord Goff).(7) The courts appear, with respect, to have largely overlooked the problems of principle and practice that these propositions raise.
One fundamental objection of principle is that recognition of such a sweeping right to refuse treatment undermines the principle of the inviolability of life and the law against assisted suicide. For if the right to refuse treatment extends to cases where the patient's purpose is to hasten his or her death, then it accommodates suicide. And if doctors act lawfully when they intentionally assist a refusal of treatment (by, for example, withdrawing a life-saving treatment), knowing that that refusal is suicidal in intention and effect, then the law against assisted suicide has been seriously compromised.(8)
In short, the court decisions asserting an unqualified right to refuse treatment appear to outflank the prohibition on assisted suicide just as the decisions on the withdrawal of treatment outflank the prohibition on homicide. The criminal law's consistent prohibition of intentional killing and intentional assistance in suicide has been replaced by a `morally and intellectually' misshapen prohibition on active but not passive killing and assistance in suicide. And it is this same, misshapen distinction which disfigures the Law Commission's Report and Who Decides?
The explanation for the courts' weakening of the prohibition on assistance in suicide is not entirely clear. It may well at least partly lie in a misunderstanding of the principle of the inviolability of life. But there is also evidence in the relevant authorities of the mistaken beliefs, firstly, that suicide was decriminalised out of respect for self-determination and, secondly, that suicide cannot be committed by omission.
For example, in the Court of Appeal in Bland, Hoffmann LJ, referring to the case of a person who refuses life-saving treatment, observes that the decriminalisation of suicide "was a recognition that the principle of self-determination should in that case prevail over the sanctity of life" [1993] AC 789 at 827. However, as the Parliamentary debates leading up to the enactment of the Suicide Act 1961 confirm, the reason for decriminalisation was not respect for self-determination but rather a belief that the suicidal needed help rather than punishment. In other words, suicide was decriminalised not to help people to commit suicide, but to help them not to. The Government strenuously denied any intention to condone suicide, let alone establish a right to it. Moving the Suicide Bill's Third Reading, the Joint Under-Secretary of State for the Home Department issued the following warning:
"Because we have taken the view, as Parliament and the Government have taken, that the treatment of people who attempt to commit suicide should no longer be through the criminal courts, it in no way lessens, nor should it lessen, the respect for the sanctity of human life which we all share. It must not be thought that because we are changing the method of treatment for those unfortunate people we seek to depreciate the gravity of the action of anyone who tries to commit suicide." (Fletcher-Cooke 1961a, cols 822-823.)
Addressing fears that decriminalisation might give potential suicides the impression that what they proposed to do was no longer regarded as wrong, he stated: "I should like to state as solemnly as I can that that is certainly not the view of the Government, that we wish to give no encouragement whatever to suicide" adding: "... I hope that nothing that I have said will give the impression that the act of self-murder, of self-destruction, is regarded at all lightly by the Home Office or the Government" ..." (Fletcher-Cooke 1961, cols 1425-1426). That acceptance of a right to commit suicide was not the reason for decriminalisation is confirmed by the fact that assistance in suicide was not decriminalised and remains a serious offence.
Equally erroneous, with respect, is any suggestion that suicide cannot be committed by omission. In Bland, Lord Goff stated that when a patient dies as a result of refusing life-saving medical treatment "there is no question of the patient having committed suicide, nor therefore of the doctor having aided and abetted him in doing so" [1993] AC 789 at 864. If His Lordship was referring to the refusal of treatment on the ground that it would be futile or excessively burdensome, the proposition is uncontroversial. If, however, the proposition extends to the refusal of life-saving treatment in order to hasten death or, in other words, to commit suicide, it is unsupported by, and is indeed contrary to, authority and principle. As Stroud's Judicial Dictionary puts it, to commit suicide "is for a person voluntarily to do an act (or, as it is submitted, to refrain from taking bodily sustenance), for the purpose of destroying his own life". (Stroud 1986, vol 5 p 2674. See also Otlowski 1997, pp 65-73). This is, moreover, consonant with the general principles of criminal law relating to homicide. Suicide at common law was regarded as self-murder (Smith and Hogan 1996, p 391) and, just as there is no doubt that murder can be committed by deliberate omission, so too can self-murder, that is, suicide. It would indeed be artificial if it were suicide for a person to jump under a bus, intending to be killed, but not suicide to remain in front of an oncoming bus with precisely the same intent.
In Secretary of State for the Home Department v Robb [1995] 1 All ER 677, Thorpe J cited Bland as authority for the proposition that a patient who refuses life-prolonging treatment, which results in death, does not commit suicide and that the doctor who complies with the patient's wishes does not aid or abet suicide. Granting a declaration that the Home Office and medical and nursing staff might lawfully abide by a prisoner's refusal to take food and water, His Lordship observed:
"The principle of the sanctity of human life in this jurisdiction is seen to yield to the principle of self-determination" adding that, although the state interest in preventing suicide is recognisable, it had no application to a case such as the present where the refusal of food and treatment "in the exercise of the right of self-determination does not constitute an act of suicide" [1995] 1 All ER 677 at 682.
If Thorpe J was of the view that suicide may only be committed by an act and not by a refusal of food and treatment, then he advances no argument or authority in support, beyond dicta in Bland. But this is bootstrap authority: those dicta are themselves either ambiguous or bereft of authority and the point was simply not at issue in Bland. Moreover, His Lordship's apparently unqualified proposition that the right to self-determination takes precedence over the sanctity of life is clearly irreconcilable with the prohibition on assisted suicide and murder on request.
The true position is that a refusal of treatment or food may indeed be suicidal (depending on the patient's intention), and that not only may a doctor be justified in overriding such a refusal but the doctor may incur liability for not doing so:
"The law firmly and rightly holds that those who have undertaken to provide treatment or nourishment are not absolved from their duty by the patient's adamant refusal if that refusal is either incompetent or unlawful. A refusal which is motivated by suicidal intent is unlawful, even though suicide itself is not a criminal offence; that is why assistance, and agreements to assist, in suicide are serious criminal offences" (Finnis 1994, p 168).
As Professor Skegg has observed, even since the enactment of the Suicide Act 1961, "it has continued to be accepted that doctors are sometimes free - sometimes, indeed, under a duty - to prevent patients from committing suicide" (Skegg 1988, p 111 and authorities there cited(9).
Two of the major, principled objections to the Law Commission's Report and the Government's Consultation Paper can, therefore, equally be levelled at recent decisions of the courts. But a third objection relates to proposals which clearly go beyond existing judicial decisions, namely, proposals to carry out procedures on incompetent adults, such as `elective ventilation', which are not in their `best interests', even in the elastic sense proposed in the Consultation Paper. The House of Lords in Re F [1990] 2 AC 1 made it clear that it is lawful to perform medical procedures on an incompetent patient if they are in the patient's best interests, as improving the patient's health or preventing a deterioration in the patient's health. But to perform a procedure on an incompetent solely in the interests of someone else constitutes a battery. The proposals in Who Decides? which would allow incompetent adults to be used for the benefit of others are clearly contrary to the principle of bodily integrity protected by the crime and tort of battery, and expose some of the most vulnerable persons in society to being used as a means to the ends of others. These disturbing proposals are hardly consistent with the traditional principles of the common law and the Consultation Paper's stated aim of ensuring protection for the vulnerable.
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Parts II and III outlined some of the general ethical and legal principles which ought to govern legislation concerning healthcare decision-making for the mentally-incapacitated. Reasons of space prevent us from subjecting each of the many proposals in the Consultation Paper to sustained scrutiny in the light of those principles. For the purposes of illustration, Part IV does, however, seek to offer specific comments on three of the more controversial proposals which illustrate our concerns about discontinuing treatment for reasons incompatible with patient dignity; exaggerated deference to autonomy in respect of advance refusals; and the utilitarian use of patients for research and transplantation.
The Consultation Paper solicits views on the propriety of withdrawing artificial nutrition and hydration from patients "who have no prospect of recovery who are either unconscious or in a permanent vegetative state" (Green Paper, paras 5.24, 5.25 and Q. 42) It states that the question for patients in PVS who are already being provided with artificial nutrition and hydration is, "if the patient has any interests at all, whether such treatment is in their best interests".
We have already criticised the notion that such patients have no interests and have criticised the current law, which permits the removal of artificially delivered food and water from them even with intent to kill, as permitting passive non-voluntary euthanasia. The Consultation Paper meets neither objection.
In our view, artificial nutrition and hydration should not be regarded as discontinuable for a defined category of patient (and as it happens, the category of patients from whom the Green Paper suggests nutrition and hydration may be withdrawn is defined in very ambiguous terms) but should be withdrawn only if in a particular case it is found to be ineffective in delivering nourishment, or if the mode of delivery proves to be truly burdensome, or if the patient in question is in the final phase of dying and withdrawal will not itself significantly affect the time of death or make dying a more distressing process. Whether these grounds for withdrawing nutrition and hydration hold good in a particular case may reasonably be decided by the clinicians responsible for the care of the patient in question (Green Paper, QQ. 44a-45).
It should be reserved to the courts to determine whether withdrawal of nutrition and hydration from a particular patient on other grounds should be authorized. In making its judgement the court should proceed on the general assumption that once artificial feeding is established it should be maintained as an expression of care for and solidarity with a fellow human being in an extremely deprived condition. It is never acceptable to withdraw tube feeding on the grounds that feeding is futile because the patient's life is itself not worthwhile, or he cannot be benefited or harmed, or he has no interests, since he is permanently unconscious. No human being's life may be characterised in those terms (see Part II).
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As we have noted, an advance refusal of treatment may be suicidally motivated. According to clause 9 (3) of the Law Commission's Bill the presumption in favour of life may be overridden by a patient's advance refusal of treatment. This would enforce, in effect, the compliance of doctors and other carers with, among other refusals of treatment, those which are evidently suicidally motivated. We think there are compelling reasons why doctors and other carers should not comply with refusals of treatment which are known to be suicidally motivated:
Hence, we consider that where it is known that an advance refusal of treatment has been suicidally motivated, doctors and other carers should be obliged to ignore that refusal and to act with a view to serving the best interests (including sustaining the life) of the mentally incapable patient, just as if no such refusal had been made. We recommend that legislation should provide that:
"where a patient is incompetent to give or withhold consent to medical treatment or care, the existence of a declaration made by that patient at some earlier time purporting to give directions for the withdrawal of treatment or care (or of any specified form of treatment or care) shall not be taken to require those responsible for his treatment or care to follow any course of conduct (including omission) otherwise than in accordance with their judgement as to the best interests of the patient, and shall not be taken to require or authorise any person to give any assistance in suicide (including suicide by omission)" (Gormally 1994, p 158).
The Law Commission recommended that an advance refusal of treatment should not preclude provision of "basic care" defined as "care to maintain bodily cleanliness and to alleviate severe pain, as well as the provision of direct oral nutrition and hydration" (Law Com No 231, para 5.34). We believe this definition is too narrow; in particular, we would consider that once a tube has been established to deliver nutrition and hydration, the actual delivery of food and fluids by such means should be counted a part of basic care. For what is secured is not some special form of medical treatment - hunger and thirst are not diseases and tube feeding is not directed at treatment - but simply the delivery of what is necessary in the way of nourishment to sustain life. And the supply of what is required in the way of nourishment simply to sustain a person's life belongs to the basic care of that person.
The definition of "basic care" proposed by the Law Commission embodies an odd inversion of values, according as it does a greater importance to comfort and hygiene than to sustaining life.
It should not be ordinarily possible for advance refusals of treatment to exclude provision of basic care defined, as we propose, to include provision of food and fluids by tube (Green Paper, paras 4.35-4.37).
Much of the preoccupation with making advance refusals of treatment binding by statute seems to be motivated by the false valuation of human autonomy to which we have already referred (see Parts II and III). Apart from the reasons of principle we have already adduced for thinking certain types of advance refusal of treatment to be ethically and legally unacceptable, we believe there are many prudential and policy reasons for not making advance refusals of medical treatment binding by statute law in the way proposed by Who Decides? following Law Com No 231:
Our view that statutory force should not be given to advance refusals, and that their force at common law should be rescinded, either by the courts or by the legislature, does not imply that we oppose the Consultation Paper's proposal to give statutory force to continuing powers of attorney (Green Paper, paras 6.9 and 6.17). Such provision is indeed to be welcomed, provided that the power is exercised by reference to the best interests of an incompetent person, `best interests' being understood by reference to a substantive conception of the good of the person along the lines indicated in Part II. (No holder of a power of attorney should, however, have the power to consent to the withdrawal of nutrition and hydration).
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There are influential tendencies in medical and scientific circles to exploit those without relevant decision-making powers in the interests of research. We believe that research which involves any level of risk to which consent cannot be given should not be justified on utilitarian grounds. If the law is designed to legalise non-therapeutic research on the non-consenting on utilitarian grounds we fear that there will be increasing social acceptance of potentially ever more harmful forms of research on the mentally incapacitated.
The justification for organ donation is essentially connected with the capacity willingly to give ; to speak of `donation' is a misnomer in the absence of consensual giving. And in the absence of consensual giving removal of organs will normally amount to exploitation of persons for ends to which they have no discernible attachment.
Normally, therefore, transplantation inter vivos should not involve use of those unable to give informed consent to the removal of their tissue. The carefully circumscribed exception to this should be for cases in which the `donor', although unable to give informed consent, has some discernible attachment to the good of the potential `recipient' as someone perceived to be integral to the good of his or her own existence. This sort of exception should not in practice be thought to exist outside the context of close family relationships. It should be a further condition of `donation' in these circumstances that it involves no risk of significant harm to the `donor'.
Where what is envisaged is cadaveric transplantation, it ought to be the case that organs may be removed only if (i) the person whose organs they were has made an advance statement when competent of willingness to donate organs, and (ii) the patient has been certified as certainly dead.(10)
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The Law Commission's proposals, proposals broadly commended by Who Decides?, could, if enacted, serve to undermine, rather than promote, the interests of mentally-incapacitated adults. In particular, to the extent that the proposals condone euthanasia by omission; assistance in suicide by omission; and the use of the incompetent as a means to the ends of others, they give cause for serious concern. The proposals, and the principles which have generated them, require radical reconsideration.
Dworkin, R (1993) Life's Dominion (London: Harper Collins).
Finnis, J (1994) "Living Will Legislation" in Luke Gormally (ed) Euthanasia, Clinical Practice and the Law (London: The Linacre Centre) 167.
Fletcher-Cooke, C (1961) HC Deb vol 644, cols 1422-1426,19 July 1961.
Fletcher-Cooke, C (1961a) HC Deb vol 645, cols 822-823, 28 July 1961.
Gormally, L (1994) Submission to the Select Committee of the House of Lords on Medical Ethics by The Linacre Centre for Health Care Ethics, June 1993 in Luke Gormally (ed) Euthanasia, Clinical Practice and the Law, (London: The Linacre Centre, pp 111-165). (The Submission was originally printed in: House of Lords, Session 1993-94. Select Committee on Medical Ethics. Volume III - Written Evidence (HL Paper 21-III), London: HMSO, pp 155-182).
Gormally, L (1995) "Walton, Davies, Boyd and the legalization of euthanasia", in Keown, J (ed) Euthanasia Examined: ethical, clinical and legal perspectives (Cambridge: Cambridge University Press).
Green Paper Who Decides? Making Decisions on behalf of Mentally Incapacitated Adults. A Consultation Paper issued by The Lord Chancellor's Department (London: HMSO, 1997) Cmnd 3803.
The Hon Mrs Justice Hale (1996), From the Test Tube to the Coffin. Choice and Regulation in Private Life (London: Sweet & Maxwell).
Hornett, S (1995) "Advance Directives: A Legal and Ethical Analysis" in Keown, J (ed) Euthanasia Examined (Cambridge: Cambridge University Press) 297.
Keown, J (1997) "Restoring Moral and Intellectual Shape to the Law after Bland" (1997) 113 Law Quarterly Review 481.
Law Commission No 231 (1993) Mental Incapacity (London: HMSO).
Otlowski, M (1997) Voluntary Euthanasia and the Common Law (Oxford: Clarendon Press).
Skegg, PDG (1988) Law, Ethics and Medicine (Oxford: Oxford University Press).
Smith, J C & Hogan, B (1996) Criminal Law, 8th edition (London: Butterworths).
Stroud (1986) Stroud's Judicial Dictionary 5th edition by John S James (London: Sweet & Maxwell).
Footnotes
(1) This proposal seems particularly sinister in its implications if one considers that Law Com No 231 takes up at para 6.17 Lord Mustill's suggestion in Bland [1993] AC 789 at 897 that the permanently unconscious may be reckoned no longer to have `interests'. If they are to be so regarded then it may be deemed impossible to "cause [them] significant harm" , and so it may be judged acceptable to remove even vital organs from them for the benefit of others.
(2) If a person is killed because he is found guilty of some grave crime the reason for killing him is not inconsistent with recognition of his worth and dignity.
(3) The principle of the sanctity (or inviolability) of life therefore imposes an absolute negative duty, not a positive duty to prolong life whatever the circumstances. Failure to recognise its true character, on the part of some judges in recent cases (e.g. Lord Goff in Bland ), partly explains the false dicta about autonomy overriding the principle of the sanctity of life. See Gormally 1994 at p 119, esp. footnote 2.
(4) The character of a suicidal type of refusal of treatment is well described by Mrs Justice Hale in her 1995 Hamlyn Lectures: "A person who is able to make his own decisions may be horrified at the prospect of losing that capacity and so refuse quite ordinary treatments on the ground that he would be better off dead." (p 116 emphasis added) Believing that life in such-and-such a condition would no longer be worthwhile, a person deems he or she would in the circumstances envisaged be better off dead, and for that reason (i.e. to hasten death) refuses treatment. Mrs Justice Hale (as Professor Brenda Hoggett) chaired the Committee of the Law Commission responsible for its work on mental incapacity. As the suicidal nature of certain refusals of treatment was resolutely refused recognition by the Law Commission it is unsurprising that it does not receive recognition in the 1995 Hamlyn Lectures.
(5)We would recommend the enactment of a Bill along the following lines:
"No person may, in or in connection with providing to another person medical, nursing or other treatment, service or care, do or omit anything with the intention of terminating that other person's life. A person who by any such act or omission with such intention causes the other's death shall be guilty of murder."
See Gormally 1994 p 157.
(6) The four factors listed in para 3.23 as "guidance" for determining what is in a person's "best interests" all relate to the person's subjectivity as someone with wishes, ability to participate in decision-making, and freedom of action . They are:
For further critique see Part III below.
(7) More recent cases have held that a competent pregnant woman's refusal of a Caesarian operation (and, it appears, any medical procedure) must be respected, however irrational or immoral the refusal may be, and even if both she and her viable unborn child will die as a result: Re MB [1997] 8 Med LR 217; St George's Healthcare NHS Trust v S [1998] 3 All ER 673. As Judge LJ stated in the latter case (at 692):
"Although human, and protected by the law in a number of different ways..., an unborn child is not a separate person from its mother. Its need for medical assistance does not prevail over her rights. She is entitled not to be forced to submit to an invasion of her body against her will, whether her own life or that of her unborn child depends on it. Her right is not reduced or diminished merely because her decision to exercise it may appear morally repugnant".
The supposed justification for such sweeping judicial claims, which respect refusals which are irrational, morally repugnant and result in the deaths of two human beings, is unclear.
(8) We do not say that the sweeping legal right to refuse treatment entails abandoning the distinction between such refusal and assisting in suicide-by-omission. The judgement of the Supreme Court of the United States in Vacco v Quill (1997) 65 United States Law Week 4695 gives powerful reasons (at 4697) for thinking that, where law-makers, courts and other relevant bodies have a clear grasp of the way in which differences in intention really and authentically differentiate kinds of conduct, it is possible to give legal force to such refusal (as recent New York legislation does) while maintaining the law's prohibition on assisting in suicide including suicide-by-omission. In such a situation, the breadth of the legal right of refusal will have the result (foreseen but in no way intended by the clear-headed legislator) that - just as allowing doctors to use pain-killers facilitates some covert voluntary euthanasia (murder) under the guise of palliative care - sometimes a patient will exploit his right of refusal to commit covert suicide-by-omission. Where such a patient is still competent, the Supreme Court suggests (at 4697) that "a physician who withdraws, or honors a patient's refusal to begin, life-sustaining medical treatment purposefully intends, or may so intend, only to respect his patient's wishes ..." (and not to kill or assist in suicide). This analysis clearly covers the usual case, where the doctor has no real knowledge of his patient's motives for refusing treatment; in other cases, where he is morally sure that refusal of treatment or care is motivated by a suicidal purpose (intention of terminating life), the doctor has to respect not only the statutory prohibition of imposing medical treatment on unwilling patients but also the law's prohibition of assisting in suicide (including suicide-by-omission). Legislative guarantees of patient autonomy have their proper limit at the point where the patient demands assistance in his autonomous purpose of self-destruction (including suicide-by-omission), and the Supreme Court's judgement makes it clear that the law is coherent in drawing such a line.
As we have said above (Part II), the obligation not to assist in suicide (including suicide-by-omission) does not entail an obligatory requirement to override refusals of treatment or even of care and sustenance. To be sure, the path between the Scylla of assisting suicide-by-omission and the Charybdis of force-feeding a competent patient is narrow, and opinions will differ about how precisely to proceed along it. But what is quite clear is that where the patient's suicidal purpose was articulated prior to his incapacity, and he is now incompetent to make any authentic ratification or withdrawal of it, the question of respect for his autonomy ceases to be central and the decisive criteria must be his true best interests including the inviolable worth of his life. Ronald Dworkin in Life's Dominion (1993) has exposed fairly clearly (at pp 226-9) some of the implications (which Dworkin himself there rightly describes as "very troublesome" and "shocking") of thinking that autonomy always trumps other interests and goods, and that the past wishes (or advance directives) of a now-incompetent person must be respected on grounds of "precedent autonomy" (unconditional respect for "past wishes and feelings"). Mrs Justice Hale seems much less troubled. Speaking of the person who has made an advance refusal of "quite ordinary treatments" on the grounds that "he would ... be better off dead" than being incompetent, she foresees that such a person "once he has become demented, ... may be quite content; those around him who remember how he used to be will suffer much more than he does. But he will be no longer able to revoke the refusal." On which she comments: "This, of course, is what advance refusals are all about; the right to decide while you are able to do so the extent to which you want to be obliged to stay alive. This will depend on what you think makes life worth living ..." (Hale 1996 p 116)
(9) See also Reeves v Commissioner of Police of the Metropolis [1999] 3 All ER 897 in which the House of Lords held the defendant liable for negligently failing to prevent a prisoner from committing suicide, even though the prisoner was of sound mind.
(10) We do not address in this document the controversial issue of whether the UK protocol for diagnosis of so-called `brain-stem death' shows the patient to be actually dead as distinct from irreversibly dying.
