Legislating for Advance Refusals of
Treatment:
What is at issue?
Luke Gormally
[1998]
1. Introduction
Back in 1995 the Law Commission published comprehensive proposals for
legislation to govern decision-making for the mentally incapacitated. The
previous Government was somewhat chary of bringing these proposals before
Parliament, but the present Labour Administration has embarked on a process of
consultation precisely with that end in view. The first phase of that process
(consultation on the proposals in the Green Paper Who Decides?) was
completed in March.
Together with Dr John Keown, I wrote a lengthy Response to Who Decides?
which was submitted to the Lord Chancellor's Department in March. We criticised
a number of the proposals in the Green Paper which are seriously at variance
with the respect owing to mentally incapacitated persons. This short article is
confined to consideration of one of the proposals in the Law Commission's Draft
Mental Incapacity Bill: the proposal to make advance refusals of treatment
binding in statute law. Section 9(3) of the Bill makes it clear that doctors and
other carers would be obliged to comply with advance refusals of treatment
(including refusals of tube-feeding) which were suicidally motivated (i.e. in
which it is made clear that the reason for refusal is to have an end put to
one's life).
2. What are advance refusals of treatment?
An advance refusal of treatment is one kind of advance directive. An advance
directive (sometimes known as a `living will') stipulates in advance the way one
would wish to be treated in certain specified circumstances should one be
incapable of making one's wishes clear at the time one needs treatment. An
advance refusal of treatment makes clear what one would not wish to have done to
one in circumstances in which one requires medical care. Since doctors cannot be
obliged to give treatment which is contrary to their clinical judgment, advance
refusals of treatment are the most significant type of advance directive.
Some patients are attracted by the idea of committing advance refusals of
treatment to paper because they think they can thereby ensure that they do not
receive unacceptable treatment. The scenario some have in mind is that of
doctors employing all the apparatus of the intensive care unit to keep them
alive when it would be more appropriate to leave them to die unencumbered by
this technology.
3. Advance refusals of treatment and euthanasia
There are those who choose to play on the fear of this kind of scenario to
advocate legislation to make advance refusals of treatment binding. And among
them are advocates of euthanasia who see the advancement of their cause by this
legislative route.
How would such advancement be secured? By making it legal for a doctor to aim to
end a patient's life by depriving the patient of treatment and tube-feeding.
There may be circumstances (see Section 7 below) in which it is reasonable to
withhold or withdraw certain forms of treatment. But if the reason for doing so
is an advance refusal of treatment in which a patient has made it clear that
life-preserving treatment or tube-feeding would be unacceptable in certain
circumstances because he judges his life would not be worth living in those
circumstances, then it is evident that the reason for withholding or
withdrawing is to put an end to the patient's life. The patient's objective
is made the doctor's objective by the advance directive.
Once it is clearly seen that killing by omission has become the legal obligation
of doctors (because of the binding force of advance directives), proponents of
euthanasia will urge that it is unreasonable - because manifestly inconsistent -
to continue to prohibit active euthanasia.
A number of questions are raised by what has been said here about advance
refusals of treatment which are aimed at ending the patient's life:
- Are
not such advance refusals already binding in common law and, if so, what
difference would legislation make?
- One
assumption behind what has been said is that both suicide and the
intentional termination of a person's life by a doctor are moral evils which
should be treated as unlawful. Does not this assumption need to be defended?
- Another
assumption behind what has been said is that doctors should not have to
comply with advance refusals of treatment which are suicidally motivated
(i.e. which aim at bringing about the death of the person who makes them).
But how can one reconcile this assumption with the fact that doctors are
generally required to respect refusals of treatment made by competent
patients? What is the morally significant difference between two refusals of
treatment, each made when the patient in question was competent, but one in
regard to treatment to be given when the patient is still competent, the
other in regard to treatment to be given when the patient has become
incompetent? If one refusal is to be respected, why not the other?
We can take each of these questions in turn.
4. Are advance refusals of treatment already binding in common law?
A number of judges in recent years have expressed the view that they are, a view
shared by a number of practising lawyers and reputable academic lawyers. There
are other lawyers who disagree, noting the fact that there has yet to be a case
in which the contention that advance refusals are binding can be said to have
been tested. There is therefore some element of uncertainty about the binding
force of advance refusals of treatment. This is one reason why there is a drive
to have statute law which makes unambiguous their binding force.
5. Is it not necessary to defend the assumption that both suicide and the
intentional termination of a patient's life by a doctor are moral evils which
should be treated as unlawful?
In many contexts it is of course necessary to defend this assumption. And
different approaches to the defence will be required depending upon the beliefs
one shares with whomever it is requires the defence.
For the purposes of the present article I shall offer no defence, in the belief
that one is not required by my readers. If they are Catholics then I presume
they share with me knowledge of the truth that for each of us our life is a
fundamental good and a gift of God. We should cherish it as such and not neglect
to care for it because of cowardice or laziness or intemperance. Since the life
of each of us is a fundamental good and a gift of God, it is never open to us to
judge it without worth (or not worthwhile) and for that reason to be
deliberately ended. A life can be deliberately ended not only by a positive act
(such as the injection of a lethal substance) but also by the deliberate
omission of treatment or care decided upon precisely in order to end life.
If any reader is looking for a secular defence of the assumption which relies on
a rather minimal number of moral beliefs then they can find it sketched
elsewhere.[i] Though it
is not argued for here, it remains that the fundamental point to bear in mind in
relation to the issues dealt with in this article is that morality forbids
lethal choices in the sense of choices to end the lives of innocent human beings
(by murder or by suicide). And the centuries-long tradition of common law has
followed morality in this regard, with the lamentable exceptions of abortion
since 1967 (in the UK) and the Bland judgments in 1992-93.
6. If doctors are not to be obliged to override suicidal refusals of treatment
made for the present by competent patients, why should they override suicidal
refusals of treatment made for a future situation in which the patient has
become incompetent?
We need to understand precisely why doctors are not obliged to override
competent patients' suicidal refusals of treatment. It is not because such
patients have either a moral or a legal right to suicide. That they do not have
a moral right we have noted by implication in taking note of the moral wrongness
of suicide (Section 5 above). Furthermore, suicide, though decriminalised,
remains unlawful behaviour. And this is clearly shown by the fact that
assistance in suicide is a crime which carries a substantial penalty.[ii]Given both the wrongness and the unlawfulness of suicide, a doctor is obliged
not to assist a patient in committing suicide. This obligation might be
satisfied by discharging from his care a competent patient who persistently and
suicidally refused the care needed to stay alive. Since competent patients will
often be well-placed to make it difficult if not impossible to override their
suicidal refusals of treatment or care it would not be reasonable to impose on
doctors an additional obligation to override such refusal. Failure to do so
should, therefore, not be construed as respect for the patient's choice
(as the objection I stated in Section 3 represented it as being).
The situation is otherwise with the incompetent patient. Since it is not in the
interests of the incompetent patient to respect his suicidal advance refusal of
treatment made while competent, the doctor should override it where he is in a
position to do so. And at present he generally is. But proposed legislation may
change the situation. And though he may not himself be legally obliged, for
example, to supervise the starvation of a patient, he would be obliged to
transfer the patient to the `care' of a doctor willing to do precisely that.
There are those who say that to override the antecedent suicidal will of the now
incompetent patient is to fail to respect the dignity of that patient. But the
claim mistakenly demands respect for a past statement of choice rather than the
actual living human being. Human worth and dignity belong fundamentally to us as
living human beings, no matter how defective or debilitated we may be. And the
most fundamental requirement of respect for another's dignity is respect for
that person's life.
There is much loose talk [iii]- in medical and legal circles - about `respect for autonomy'. But autonomy 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. It is plain,
however, that many exercises of that 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 elected 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.
7. Granted that suicidal refusals of treatment could never be morally
permissible, what refusals of treatment or care may be morally acceptable?
We need to begin by distinguishing between
- ordinary
care: the provision of the nutrition, shelter, hygiene and comfort
ordinarily necessary to sustain a life, and
- medical
treatment: measures designed to restore or maintain bodily well-functioning
in face of specific threats to health, or to achieve some approximation to
well-functioning, or to mitigate symptoms (as in palliative care) which,
uncontrolled, prevent one enjoying some of the other `goods' of human
living.
Ordinary care is almost always owing to patients; to deny it to someone when
it is possible to provide it is contrary to the basic respect owing to any human
life. Nor in most circumstances should one refuse ordinary care for oneself. A
directive of that kind should be given only if it is clear that the provision of
ordinary care for one would impose great burdens on the providers or would
effectively deprive others of that care when they have at least as good a claim
to it as oneself. Such motives for refusal are clearly altruistic rather than
suicidal.
There may be good reasons for declining particular medical treatments. The duty
to care for one's life does not override all other considerations and
does not require one to take every possible measure to prolong it. Specifically,
one has no duty to accept treatment which is
- either
futile: because it cannot achieve its therapeutic purpose. Thus, treatment
which is designed to be life-prolonging is reasonably refused as futile if
one is irreversibly in the terminal phase of dying.
- Or
excessively burdensome in its consequences : the burdens may be
physical (e.g. pain), psychological (e.g. stress), social (e.g. disruption
of life-style or relationships), or economic (e.g. in draining one's own or
others' financial resources). A judgment that treatment is excessively
burdensome in its consequences may be made without any reference to the
anticipated benefits of treatment (i.e. one simply finds the burdensome
consequences unbearable) or may be made precisely by reference to the
anticipated benefits of treatment (i.e. one thinks them too small or too
unlikely to warrant bearing the burdensome consequences).
Clearly, refusals of treatment because it is either futile or burdensome
focus on the value or `bearability' of the treatment. As such, they are
to be distinguished from refusals of treatment which view one's own life, either
now, or in some anticipated future, as `futile' or `unbearable'. Refusals of
treatment of the latter kind which are intended to put an end to one's life are
the suicidal kind we have been discussing.
Judgments of burdensomeness are inevitably highly individual, not only because
of the particular nature of a patient's condition and the conditions attending
his treatment, but also because certain of the burdens consequent on treatment
depend on the individual sensibility, sensitivity, and circumstances of the
patient.
8. Is there a case for committing morally acceptable refusals of treatment to
writing in the form of an advance directive?
For reasons that will be explained in the next section, it is difficult to think
of a good case for setting down a categorical refusal of specific therapies
which one intends to bind a doctor at some unspecified time in the future.[iv]
There may well be a case for setting down, in the form of a declaration which
one intends to be advisory in character, a statement of the kinds of things one
anticipates one may find burdensome to oneself or a statement of one's desire
not to have treatment which one anticipates will be excessively burdensome to
others. The case for doing so may be strong if one anticipates that those who
have to act for one will be largely ignorant of one's sensitivities and outlook,
or if one thinks that relatives may need written testimony of one's desires in
order to relieve them of potential embarrassments in saying what one had
desired.
9. Granted also that suicidal advance refusals of treatment should be
unenforceable and should be overridden, is there any case for any sort of
advance directives being made legally enforceable?
The case against seems rather strong:
- First,
as a matter of practical politics, if we have enforceable advance directives
in any form we will almost certainly get enforceable suicidal advance
refusals of treatment.
- Secondly,
it is difficult to anticipate in one's specification of future conditions
the precise combination of acute and chronic symptoms one is likely to
display and the extent of one's capacity for recovery if given adequate
treatment. Furthermore, the `incompetence' which may make an advance
directive operative may be only transitory but may, in depriving one of
appropriate treatment, have the effect of leaving one permanently impaired
in ways one finds much harder to bear precisely in so far as one recovers
competence. In general, in depriving people of appropriate medical care
advance refusals of treatment are likely to leave many patients alive but in
a worse condition than they might otherwise be (e.g. bedridden instead of
mobile).
- Thirdly,
an advance refusal may have the effect of excluding new methods of treatment
which one did not envisage at the time of making the declaration.
- Fourthly,
legally enforceable advance directives are all too likely to impose
profoundly demoralizing limits on doctors and nurses: they may be obliged to
act in ways which they know to be clearly contrary to the best interests of
patients. The State itself has an interest in maintaining conditions
supportive of the proper practice of the professions of medicine and
nursing. Furthermore, the litigation which is likely to be caused in
consequence of making advance refusals of treatment binding by statute may
well intensify the already unfortunate tendency to `defensive' medical
practice, since proposed legislation will create new areas of liability and
hence of litigation.
- Fifthly,
the litigation referred to will arise from the fact that advance directives
deal with hypothetical future scenarios, not present specific situations. In
consequence, many will raise questions about their applicability which can
only be resolved by applications to the courts. The legal costs of this are
likely to bear heavily on an already overburdened health service budget.
10. Conclusion
Advocacy of legally enforceable advance refusals of treatment seems to have two
main sources:
- its
perceived strategic importance in achieving legalization of active
euthanasia. For that reason alone it is an advocacy to be resisted.
- the
breakdown of trust between patients and doctors, and the consequent desire
of patients to have tools to control the behaviour of doctors. The causes of
this breakdown are complex: the absence of shared understandings of life,
death and health; the loss of a common morality; changes in the pattern of
provision of medical and nursing care, so that for so much of the time one
seems to be in the hands of strangers and moral aliens; and so on. I would
suggest that having legally enforceable advance refusals of treatment will
do nothing to restore trust between patients and doctors. The consequent
litigation and defensive behaviour can surely only make matters worse.
[i]
A fuller account can be found in Luke Gormally (ed) Euthanasia, Clinical
Practice and the Law (London: The Linacre Centre, 1994), pp 118-133. back
to text
[ii]
Suicide was decriminalised in the Suicide Act 1961 not out of
respect for self-determination (in other words, to facilitate suicide) but out
of a desire to help rather than punish the suicidal (in other words, to help
prevent suicide). This should be abundantly clear to anyone who reads the
Parliamentary Debates at the time of the passage of the Act. Despite the
evidence, propagandists for euthanasia regularly speak of a legal right to
suicide. More alarmingly, Lord Justice Hoffmann in the Court of Appeal in the
Bland case seemed to share their view. back
to text
[iii]
One wonders how seriously people reflect on the logic of what they say
about the import of `respect for autonomy'. Some of the more extreme talk
suggests opposition to any politically organised community and any law at all.
The legal rhetoric sometimes used to uphold refusals of life-sustaining
treatment - of "rights" to be "let alone" and to
"control fundamental decisions involving one's body" - cannot be taken
seriously because of its implications: it would nullify, for example,
prohibitions against drug abuse, and would make consent a complete defence to
homicide and assault. Autonomy, in the sense of liberty to do what one wants
when what one wants affects only oneself, is arguably an empty notion. We
are none of us monads, and what we do `solely to ourselves' affects our
relationships with others either directly (as in suicide) or indirectly through
its effects on our character. back
to text
[iv]
Of course I have in mind genuine therapies here. If the word `treatment'
comes to cover euthanasia, for example, there will be a case for an advance
categorical refusal of it. back
to text
|
