'...not just the premier
Christian bioethics institute in Britain,
but one of the finest in the
world, Christian or secular'
Most Rev. Anthony Fisher O.P., Auxiliary Bishop of Sydney
Withdrawing and Withholding
Treatment
A response to: "Withdrawing and Withholding Treatment"
[A consultation paper from the BMA's Medical Ethics Committee]
The Linacre Centre
[October 1998]
Contents
1. Introduction: The Scope of the Response.
2. Justice.
2.1 Doctors and justice
2.2 Who are the subjects of justice.
2.2.1 Only `persons' are the subjects of justice.
2.2.2 All human beings possess dignity: the alternative to arbitrary discrimination.
2.3 Justice and intentional killing.
2.3.1 Intentionally ending lives because they are judged to be not worthwhile.
2.3.2 Why it is only intentional killing which is absolutely impermissible.
2.3.3 What is the scope of intention?
2.3.4 Intention and `double effect'.
2.3.5 Intention and the character of doctors.
2.3.6 Withdrawing or withholding treatment and intentional killing.
3. The purpose of medicine.
3.1 The purpose of medicine and the goals of medicine.
3.2 What in general terms restrains doctors from aiming to achieve the goals
of medicine? Futility, burdensomeness and the veto power of the competent
patient.
3.3. The purpose of medicine and the `best interests' of patients.
4. The duty of ordinary care.
4.1 Doctors and the duty of ordinary care.
4.2 What ordinary care requires.
5. Answers to some of Section 3's "Specific questions".
1.
Introduction: The Scope of this Response
The Linacre Centre1welcomes
the opportunity to respond to the Consultation Paper on "Withdrawing
and Withholding Treatment" issued by the Medical Ethics Committee of
the BMA. We shall not be concerned with all the issues raised in that paper.
We shall not be concerned with empirical questions about, for example, the
actual practice of particular clinicians. Nor will our principal concern
be with such procedural issues as how wide-ranging consultations about clinical
decisions should be. Our principal concern will be with a substantive ethical
framework for decisions about withdrawing and withholding treatment.
Since it is the Medical Ethics Committee
of the BMA which has issued the document to which this Response is made,
it seems reasonable to assume that an emphasis on a substantive ethical
framework will be deemed appropriate. It is not, however, always clear in
the consultation document that this is what is sought. For it is certain
that one cannot arrive at an appropriate framework for decisions about withdrawing
and withholding treatment by empirical enquiries into the current practice
of clinicians or what specific codes of practice may enjoin. Nor does the
English common law any longer provide an appropriate framework for such
decisions. The Bland case is widely thought to be a key case in the
relevant area of the law. The Consultation Paper indeed appears to rely
on a distinction on which the judgement in the Bland case hangs:
between an act intended to end a person's life and an omission
(or course of omissions) decided upon with the very same purpose in mind.
The former the Bland judgement treats as unlawful, while treating
the latter as capable of being a lawful part of a doctor's discharge of
his duties of care for a patient. But in so deciding the Law Lords rightly opined that the
distinction they drew is morally indefensible and leaves the law "misshapen"
or "almost irrational".2
Since the law is in this condition it can provide no sound basis for settling
on a framework for decisions about the omission of treatment ("withdrawing
and withholding").
It is appreciated that this state of affairs does
present peculiar difficulties for a body such as the BMA that exists to
look after the interests of doctors who must keep an eye on the law. This
is not a cynical observation, for it is recognised that the task of looking
after the interests of doctors properly understood is inseparable from a
concern for the interests of patients. But precisely because it is in the
interests of doctors to have a clear-headed understanding of what they are
properly committed to if they are truly to serve the good of patients they
should disentangle their understanding of their professional duties from
the current confusions of the law.
These observations bring us to one respect in which
this Response cannot allow its concerns to be limited in the way the Consultation
Paper wishes. At 2.7 (p.11) it is said that "Euthanasia and physician
assisted suicide are excluded from this paper on treatment withdrawal".
But some of the lines of reasoning advanced in the paper for treatment withdrawal
are euthanasiast in character: they envisage the purpose of withdrawal not
to be the ending of futile or burdensome treatment but the ending of
the patient's life on the grounds that that life is no longer worthwhile
(or that it falls below a certain `quality of life' threshold). There is
no morally significant distinction between an act intended to end a life
and an omission intended to end a life. It is not intellectually honest to seek to evade the implications
of this truth by stipulating that euthanasia is to be defined as
"a prompt and intentional action by a doctor to end a patient's life"3. A stipulative definition could
not possibly settle what is at issue here. Euthanasia by omission is not
a subject one can sideline in any discussion which aspires to be adequate
to the ethics of withdrawing and withholding treatment.
Unfortunately, the BMA's
position on precisely this issue has been evasive and consequently instable
for at least a decade. An earlier analysis of the 1988 BMA Working Party
Report Euthanasia4
showed that it took "no principled stand against killing by planned
omission, and [allowed] that comprehensive and adverse quality of life judgements
may provide grounds for making a patient's death the proper object of clinical
management.... All
this means that, despite their protestations to the contrary, the Working
Party have conceded grounds on the basis of which doctors might well feel
they are justified in carrying out euthanasia on an extensive scale."5
It is the contention of this Response that an ethical
framework for decisions to withdraw and withhold treatment must recognise,
if it is to be adequate, the fundamental requirement of justice in the doctor-patient
relationship: the requirement that the doctor should never aim - by act
or omission - to end a patient's life. The making of exceptions to this
requirement standardly relies on the judgement that certain patients no
longer have worthwhile lives, that their lives have fallen below some `quality
of life' threshold. Such judgements are essentially arbitrary and incompatible
with recognising the dignity of every human being. But recognition of the
dignity of every human being is indispensable to justice in society.
There is no rational basis for thinking that doctors
should be exempt from the basic requirements of justice, though rationalizations
for such exemptions abound. To concede the exemptions is not in the interests
either of doctors or of patients; tragic historical experience has demonstrated
the profoundly corrupting effects of rationalizing the killing of those whose
lives were deemed to be not worth living. When Sir Sandy Macara, the recently retired Chairman of
Council of the BMA, reviewed some eleven years ago Robert Jay Lifton's The
Nazi Doctors he asked: Could it happen here? 6In response the BMA News Review received a large
postbag in which a majority of correspondents declared that it certainly
could, some finding plenty of evidence that the slide in that direction
was well underway.
Since then it has appeared that the incoherence
of the BMA's position on euthanasia has contributed materially if not intentionally
to that slide. A coherent understanding of the requirements of justice is
essential if decisions to withdraw and withhold treatment are to be made
in ways which truly respect the dignity of patients and maintain the integrity
of medical practice. What follows is intended to make intelligible an ethical
framework which is both coherent and humane.
2. Justice
Justice is not simply a matter of fairness in the
distribution of resources. Classically it has been understood to cover all
that is owing to others both by way of action and restraint; in other words,
it concerns what we have obligations to do for others and what we have obligations
not to do to others.
2.1 Doctors and justice
Clearly doctors need the virtue of justice - a
readiness to do what they owe to their patients and to refrain from doing
what they should not do to them. They need other virtues - or dispositions
of character - as well, in the interests of the doctor-patient relationship,
but justice is fundamental.
2.2 Who are the subjects of justice?
This question asks: To whom is it that we
have the positive and negative obligations of justice? The traditional answer
to this question is: To every living human being simply in virtue of the
fact that he or she is human. But it is clear from the contemporary literature
of bioethics that a different answer is gaining influence, an influence
clearly detectable in the BMA Ethics Committee's Consultation Paper. So
we should look briefly at this answer.
2.2.1
Only 'persons' are the subjects of justice
The answer involves stipulating that the word `person'
should be used in a special sense7:
meaning those who have acquired some level of developed and exercisable
psychological abilities, more particularly of understanding, choice and
communication. The motivation for the stipulation varies, some holding that
one cannot be said to have a right (even a basic right, such as a right
to life), unless one has a conscious desire for what it is a right to; others
holding that a life has value only in so far as the person whose life it
is invests it with value. The former position seems rather obviously mistaken8; the latter is a version of a position
which needs to be briefly discussed here.
It needs to be discussed here because another version
of that position clearly underpins much that is said in the BMA Consultation
Paper. What is said, for example, at pp.19-20 about pvs patients assumes
that a life has value only in so far as the human being whose life it is
possesses certain psychological abilities. Admittedly, in its position on
pvs the BMA appears to require a much lower level of psychological ability
- "sentience" - than those who require cognitive abilities for
a life to have value. But this position is instable. In the 1988 Report
Euthanasia the BMA's Working Party spoke of the "the unique
ethical importance" of human beings. That can certainly not be based
on sentience, which is shared with the generality of animals. That "sentience"
represents an instable position is already evident from the principal practical
preoccupation of the present Consultation Paper, which is no longer with
pvs but with whether the recommended code of practice for the management
of pvs patients might be extended to other categories of patient, such as
those with advanced senile dementia.
Is there any acceptable version of the view that
only those with some degree of developed psychological ability are subjects
of justice? No. Why?
Consider what is the most basic requirement we
have to meet in determining who are entitled to be treated justly? It is
obviously the requirement that whatever determination we make should not
be arbitrary. We cannot possibly have just arrangements if the basis on
which we have excluded some from entitlement to being treated justly is
arbitrary.
Consider now what is involved in determining entitlement
on the basis of developed psychological ability. If we are going to continue
to talk about the "unique ethical importance of human beings"
then the relevant psychological abilities will have to be to some extent
cognitive. And this is indeed the position of those in the bioethics literature
who link human value to developed psychological abilities. But it is arbitrary
to make entitlement to justice hang on some specified level of psychological
ability since standardly a developmental level of psychological ability
is something that many who have not achieved it will shortly be attaining.
That being so, how could it be reasonable to draw the line where you propose
to draw it when the effect of drawing the line is to determine that human
beings who would shortly qualify for just treatment do not presently enjoy
entitlement to just treatment? Basic human rights cannot be like the rights
of membership of a golf club, which may indeed be determined fairly arbitrarily.
2.2.2 All human beings possess
dignity: the alternative to arbitrary discrimination
Any exercise in specifying some level of psychological
ability as a necessary condition for being treated as a subject of justice
is inescapably arbitrary. The only alternative to such arbitrariness is
to take the fact that someone is a living human being as a sufficient condition
for regarding them as entitled to just treatment. This response is not simply
the only available escape route from arbitrariness; it is intrinsically
reasonable. It is perfectly true that the distinctive worth of human beings
is given clear expression in the exercise of certain psychological abilities.
But it is a fact about human beings that before we possess these abilities
as exercisable abilities we have it within ourselves to develop those abilities;
it is in our nature to do so. So a very distinctive worth attaches
to our nature - what we call human dignity. Various forms of damage and
impediment may prevent the development of abilities in a given individual,
or lead to their loss. But it remains the case that that human being is
one of us, "one of our kind": he or she is not of a different
nature, and so possesses the dignity which attaches to our nature.
It is useful to distinguish two senses in which
the word `dignity' can be used about human beings: in one sense (Dignity1)
it is used of that basic worth which belongs to human beings simply in virtue
of the fact that they are human, a worth in virtue of which we say that
all human beings are equal, meaning: equally entitled to be treated justly
by having their basic human rights respected. In another sense (dignity2)
the word refers to a certain quality exhibited by some but not all in the
conduct of their lives: a quality one associates with people who have so
shaped their lives as to honour what is truly worth choosing and striving
to achieve. But it is a fatal mistake in reflecting on human dignity to
think that loss of the capacity to give shape to one's life - to continue
to be in control - means the loss of human dignity tout court. Dignity1
cannot be lost.
In neither use of the word `dignity' is it just
vaguely honorific; it imports worth. And the worth we should recognise as
belonging to every human being should prevent us from presuming to think
of any human life as "not worthwhile". To judge a life to be not
worthwhile is to deny worth to the person whose life it is; for the reality
of a person is not something distinct from his or her life. It should be
clear, then, that assessments of certain lives as not worthwhile are incompatible
with justice.
2.3 Justice and intentional killing
To kill a human being is to bring about his or
her death. One may do this either by something one does (e.g. by shooting
him) or by something one fails to do (e.g. by failing to give an incompetent
diabetic the insulin he needs).
One may bring about someone's death either intentionally
(i.e. on purpose), or foreseeably but without intending it, or without either
intention or foresight. Sometimes a failure to foresee that what one does
or fails to do will cause death (or is likely to cause death) is culpable,
because one could and should have foreseen this outcome. What should be
said about culpability in relation to intending and foreseeing one's causation
of death will be discussed below.
2.3.1
Intentionally ending lives because they are judged to be not worthwhile
From what has already been said it should be clear
that to aim to end a human being's life because one judges it no longer
worthwhile9 is indefensible.
It can only be made to appear rational by denying the very truth
we have to recognise if we are to uphold justice. The foundational truth
(for justice) that all human beings possess an ineliminable worth and dignity
is not obviously incompatible with every reason for intentionally killing
human beings. To kill someone, for example, for the reason that he deserves
death (as in the judicial execution of criminals found guilty of capital
crimes), though it may be criticisable on other grounds, is not to be faulted
for being incompatible with recognition of human dignity. That kind of justification
for intentional killing in fact assumes a rather high conception of human
dignity, thinking of human beings as answerable for their choices. But it
is not necessary to enter into any discussion of the merits of this type
of justification for killing since it is irrelevant to what doctors may
do to patients. Patients as patients do not have the status
of guilty criminals and doctors as doctors do not have the status
of agents of the judicial system. If doctors think there is a justification
for killing what they have in mind is some consideration or combination
of considerations which leads them to conclude that a patient's life is
no longer worthwhile. And that cannot justify killing.
2.3.2 Why it is only intentional
killing which is absolutely impermissible
Consider the circumstance in which there is a slim
chance that a person's life can be saved by surgery but there is a very
high probability that the outcome will be the death of the patient. The
patient, let's say, consents to surgery as the only measure that could possibly
save his life, and the surgeon undertakes it on the remote chance that it
might. Both, however, foresee that the likeliest outcome is the death of
the patient. It is clear, nonetheless, that the patient's attitude is not
suicidal and the surgeon's attitude is not murderous. On the contrary, the
aim of each is the preservation of the patient's life, remote though the
chance of succeeding might be.
This kind of scenario makes clear why we cannot
always be obliged to refrain from causing death, even foreseeably causing
death. For there are some things we have good reason to aim to achieve even
when we know they are very likely to cause death: but causing death is not
what we are aiming to achieve. It is when death is no part of what one purposes
to achieve that it is spoken of as a "side effect".
But, as we have seen, there is no such thing in
the medical context as having a good reason to aim at bringing about someone's
death. Not only can one always refrain from acting with such an aim, one
should always refrain from acting with such an aim since there is no good
reason for having such an aim.
2.3.3 What is the scope of intention?
Intention has been explained here by reference
to the reason or purpose one has in acting. Now the reasoning which leads
us to choose to act in a particular way (and so the reason we have for acting
in the way we do) includes reference not only to the objective we aim to
achieve but to the method we adopt to achieve our purpose. And our reasoning
about a choice of method refers precisely to what it is about it that appears
to make it appropriate for achieving our purpose. In the case of the high-risk
surgery referred to in the previous section, patient and surgeon opted for
it precisely in so far as it might be efficacious in saving life not in
so far as it was all too likely to be efficacious in ending life. Its efficacy
in the latter respect was no part of their reason for choosing it; in other
words it was no part of what they intended.
2.3.4 Intention and 'double effect'
`Double effect ` is jargon to refer to a particular
kind of dual outcome of action, in which apart from the intended effect
of one's action one brings about a `side-effect': an outcome one causes
which it is no part of one's intention or purpose to cause in acting.
The term `double effect' is also used to refer
to what is sometimes spoken of as a `principle' (the principle of double
effect') and sometimes as a `doctrine' (`the doctrine of double effect').
`Doctrine' is perhaps the more appropriate nomenclature since we are here
concerned with a package-deal of considerations rather than a single principle.
For it is not the traditional view that provided you are not aiming at a
bad effect it is acceptable to cause it. Not at all. The traditional view
is that only in certain circumstances may you forseeably bring about a bad
effect. What you are aiming for has to be sufficiently important for you
to run the risk of unintentionally causing death. And if the death you may
cause is someone else's then you should be sure both that your choice to
proceed is compatible with respect for that person's dignity and that it
is fair to that person. You may test for the latter consideration by asking
yourself whether, if you were the likely victim, you would think it reasonable
for someone else to proceed as you are proposing to proceed.
Considerations of this order make it clear, for
example, that a surgeon who carries out high-risk experimental surgery on
a dying child not to benefit the child but to perfect his surgical technique
is acting wrongly even though it is not precisely his aim to cause the child's
death. For he shows contempt for the dignity of the child, treating him
as disposable for his own purposes.
With these explanations in mind it ought to be
possible to see the reasonableness of applying `double effect' considerations
to situations in which death foreseeably results from withdrawing or withholding
treatment but is no part of one's purpose in doing so. The key question
will be: Why has treatment been withdrawn? We shall consider the relevant
reasons in Section 3. But to briefly anticipate: it is generally accepted
that one may reasonably seek to discontinue (or refuse to embark on) treatment
that is gravely burdensome; if that is one's reason for withdrawing treatment
then it is clear that any resultant death of the patient which may occur
is not only no part of one's purpose in acting but also involves no lack
of respect for the dignity of the patient or a failure in fairness to the
patient.
The invocation of the doctrine of double effect
is frequently held to involve hypocrisy, especially in its application to
the use of analgesics which may have the effect of causing death. But that
it is possible for a doctor to dissemble his intentions in administering
analgesics no more counts against the importance of the distinction between
what is intended and what is merely foreseen, than the possibility that
we can use language to lie counts against the importance of the distinction
between telling the truth and telling lies. Just as language-use is not
inescapably mendacious so use of analgesics is not inescapably murderous.
Talk about the `hypocrisy' of the doctrine of double
effect rests in part upon a failure to see the moral significance of the
distinction between intention and foresight, and in part upon
" ... a failure
sufficiently to distinguish problems in the analysis of intention from
problems about what is to count as admissible evidence for intention. The
use of an essentially lethal substance provides the sort of prima facie
evidence of an intention to kill which is not so clearly available when
planned killing is by an opiate which has palliative uses. But in so far
as standards of medical practice are established in the control of pain,
a doctor whose intention (i.e. aim) is to kill a patient by the use of
pain-control medication is likely to become more readily detectable. Nonetheless
there is bound to remain a grey area in practice. But difficulties over
establishing a person's intention should not lead to confusion over what
intention is. Nor should those difficulties, as they arise in relation
to the doctor who dissembles his intention, lead us to conclude ... that
`the law endorses, indeed entrenches, hypocrisy'."10
2.3.5 Intention and the character
of doctors
Intention serves to identify the character of choice:
your choices are shaped by the goals to which you are committed and by what
you are committed to doing by what reason identifies as the efficacious
means for achieving your goals. Now it is precisely such commitments which
shape character. Once you choose to lie, for example, as a way of getting
what you want you make yourself more disposed to lie (unless you repent
of what you did). Once you make killing a means to your chosen end (however
worthy that end may be) you make yourself more disposed to be a killer (unless
you repent of what you did). What we are talking about here in referring
to the development of dispositions is not, of course, the acquisition of
some mindless behavioural reflex. What is acquired is the mind of a liar
or the mind of a killer - the disposition to help oneself to rationalizations
for such choices when they seem to serve one's ends.
For a doctor to acquire either kind of mind-set
is a disaster for his or her patients. Think what is involved in acquiring
the mind-set of someone disposed to kill: it means being disposed to help
oneself to the rationalization that at least some human beings have no claims
to just treatment from one. A doctor who is so minded is no longer governed
by considerations of justice but perhaps merely by considerations of what
is socially respectable or acceptable.
2.3.6 Withdrawing or withholding
treatment and intentional killing
From all the foregoing two things should be clear:
first that one can aim to bring about someone's death precisely by deliberate
omission of some form of treatment or care; i.e. one can intentionally kill
a patient in this way. Secondly, that to do so is, morally speaking, as
gravely wrong as intentionally killing them by giving them a lethal dose
of poison or a fatal wound.
But what about `legally speaking'? As we saw in
the Introduction, the judgements in Bland rely on a distinction between
acting with a view to bringing about someone's death and deliberately failing
to do something with the very same intention. But there is no reason to
take this distinction seriously, particularly as the Law Lords themselves
could offer no reasoned defence of it.
Two things ought to
be clear about intentional killing in English law. First, it emerged in
the mid-1980s that judicial understanding of intention sharply distinguishes
it from foresight.11
Secondly, that decided
cases in English law12
make it clear that those with duties of care for a person cannot aim to
end that person's life by a course of deliberate omissions. Bland is
not merely a moral anomaly but a legal one too. Ethical guidelines for the
medical profession should ignore it.
3. The purpose of medicine
Ethical guidelines about withdrawing and withholding
treatment cannot, however, afford to overlook consideration of the purpose
or goal of medicine. For a clear view of what would make such decisions
reasonable depends on a view of what the proper purpose of medicine is.
The profession of medicine combines a distinctive
ethic with expertise based on a unified (or potentially unified) body of
knowledge. Both ethic and expertise are warranted by the human good which
medicine exists to serve. What
is the human good which medicine serves on the basis of a unified (or potentially
unified) field of knowledge of natural causes? The answer is somatic
health13, in the sense
of the well-ordered organic functioning of the body. This well-ordered organic
functioning is both an instrumental and an ingredient good of human well-being.
In other words it is something we enjoy for its own sake as well as something
we need in at least some measure in order to share in some of the other
basic ingredient goods that make for living well (such as the acquisition
of truth, the appreciation of beauty, growth in friendship, the exercise
of skills, the maintenance or establishment of justice in political community,
and so on).
It is because health in the sense explained is
of such central significance for human well-being that there is an ethic
internal to the practice of medicine. In other words, the practice of medicine itself, if it
is to be well-adapted to the achievement of that goal, imposes certain ethical
requirements on doctors and demands certain dispositions of them.14
At various points the BMA Consultation Paper refers
to medical goals so it would be as well to clarify how the standard goals
of medicine relate to what has been identified here as the overall purpose
of medicine.
3.1 The purpose of medicine and
the goals of medicine
Medicine is often thought of as having disparate
goals:
- the restoration and maintenance of health;
- the prolongation of life;
- and, the alleviation of pain.
The first clearly coincides with what has been
identified as the controlling purpose of medicine. Of course health is not
an `all or nothing' condition. It varies in relation to age and other factors.
And often the best one can achieve is some approximation to health, in the
sense of some approximation to that organic well-functioning which is necessary
to our sharing in other human goods.
The other two goals are only rightly understood
in relation to the controlling purpose of somatic health; they are not,
so to speak, free-standing goals.
Prolongation of life is a proper goal of distinctively
medical treatment in so far as it goes along with some continuing capacity,
however exiguous, for integrated organic functioning. That is why when we
are confronted with a patient in the terminal phase of dying, who is, so
to speak, in process of irreversible disintegration, efforts to prolong
life are inappropriate. Prolongation of life is not to be understood as
an independent goal of medical practice but as dependent on the achievability
of some measure, however depleted, of the kind of organic functioning which
makes possible our sharing in at least some other human good.
The alleviation of pain
through palliative medicine is also best understood precisely as a goal
of medicine by reference to the controlling purpose of somatic health, and
more particularly somatic health as an instrumental good.15 As we have already noted, we require
well-ordered organic functioning to achieve some of the other ingredient
goods of human life. Now if that well-ordered organic functioning is not
achievable in ways important to our achievement of other goods then medicine
can at least aim to mitigate the effects of disordered organic functioning.
Much medical treatment has to settle for mitigating disorder - typically
manifested in pain - when the restoration of well-ordered functioning is
not achievable. Palliative treatment of the dying - the control of
the symptoms of irreversible organic disorder and disintegration - is an
extreme form of a standard element of medical practice in its service of
somatic health as an instrumental good:
" ... given that
not even an approximation to health can be achieved, one aims to secure
as tolerable a state of the organism as possible so that conscious
living (with family and friends and others) may continue. Thus palliative
medicine, in deploying techniques of pain control, is focussed, just like
other forms of medicine, on the organic component of our aptitude to share
in other human goods."16
3.2 What in general terms restrains
doctors from aiming to achieve the goals of medicine? Futility, burdensomeness
and the veto power of the competent patient
First, and most obviously, the fact that the only
available treatments prove incapable of achieving the goal one had set out
to achieve for a particular patient. The treatments one has tried (or perhaps
merely contemplated) appear to be clearly futile.
Secondly, the treatments one contemplates or tries,
though they may promise some medical benefit, in the sense of securing one
of the goals of medicine, will impose grave burdens on the patient in doing
so. These burdens may be unacceptable either because, independently of other
considerations, they are excessively difficult to bear, or because bearing
them does not seem warranted by the amount of benefit the treatment promises.
Sometimes, since the extent to which certain side-effects
are burdensome will depend very much on the dispositions and circumstances
of the patient, one needs evidence (directly from the competent patient,
or by way of testimony from those close to an incompetent patient) about
those dispositions and circumstances in order to assess the extent to which
what will be experienced as burdensome will be warranted by the likely benefits
of treatment.
We should allow a wide interpretation to the notion
of `burdens of treatment': they may be physical (as in pain); psychological
(as in mental distress); social (as in disruption of life-style); and economic
(as in the financial burdens they impose on others). But this wide interpretation
of the scope of the notion of burden should be combined with a strict
interpretation of what is meant by talking of `the burdens of treatment'.
`Burdens of treatment' means: burdens caused by treatment. A patient's
life is not caused by his treatment, even though it may be true to
say that a patient is enabled to stay alive through treatment. So survival
with disability should not be counted among the burdens of treatment. If
it is, and if it is regarded as a reason for ceasing treatment, then you
make the aim of ceasing treatment to be that of putting an end to the existence
of the patient.
On the other hand, the fact that a person is disabled
in a particular way may make it predictable that a particular course of
treatment will be excessively burdensome. Disability can be relevant in
that way to a reasonable decision to withhold some course of treatment.
This illustrates one way in which a particular type of `quality of life'
judgement is relevant to decisions to withhold and withdraw treatment. The
type of judgement in question is one which focuses on the condition of the
patient as that is relevant to assessing the prospective benefits and burdens
of treatment. One's interest is in determining those benefits and burdens.
There is a quite distinct kind of Quality of Life judgement for which the
focus is not on the worthwhileness of treatment, as one may assess that
in terms of its benefits and burdens, but rather on the worthwhileness of
the patient's life. As we have already seen, to shift focus in that way
is already to have embarked on a potentially euthanasiast line of reasoning. To engage in judgements
of that kind is incompatible with recognising the dignity of the patient
and his or her entitlement to just treatment.17 It is precisely such judgements, unfortunately, that the
BMA's Consultation Paper envisages (at 2.9.7 and 2.11, no.7) as the appropriate
basis for withdrawing and withholding treatment in certain types of case.
Thirdly, one may be prevented from aiming at what
one regards as an appropriate medical goal in the care of a patient by the
competent patient's refusal of the relevant treatment. The veto power of
competent patients may be exercised on the basis of good or bad reasons.
Here we can take note of one kind of good reason which does not involve
either futility or burdensomeness. In the following section we will clarify
why bad reasons for refusing treatment are reasonably allowed effect in
the life of a competent patient, but should not be allowed continuing effect
when that once competent patient has become incompetent.
A competent patient may have good reason to refuse
potentially beneficial treatment not because of any burdens consequent upon
treatment but because other obligations stand in the way of the patient
undergoing treatment. Clearly it is down to the competent patient to say
whether this is the case, and there could be no moral justification for
a doctor seeking to prevent a patient discharging overriding moral obligations.
Finally, one may be prevented from aiming at an
appropriate medical goal by resource constraints: personnel, facilities,
equipment or medication are not available.
3.3 The purpose of medicine and
the `best interests' of patients
In the practice of medicine, the concept of `best
interests' should be understood to include the standard goals of medicine
as they have been presented in 3.1 above. It is in serving these ends that
doctors serve that element of the good of patients which they are qualified
to serve.
It is important to distinguish between those `best
interests' of a patient which a doctor is competent to judge and what one
might call the `overall best interest' of a patient. The two may not coincide
even when what is under consideration is some treatment a patient needs.
For as we saw in the previous section, there can be circumstances in which
a patient may rightly judge that what it is good and right for him to do
will prevent him undergoing the treatment he needs. But it is certainly
in his `best interests overall' to do what it is good and right for
him to do.
But, as we also noted in the previous section,
the veto power of the competent patient over proposed treatment is not always
exercised for good reasons. It
remains that it is regarded as near-absolute in the eyes of the law. There
are defensible public policy reasons for this18, as well as the reason that people need to be left free
to decide what place care for their health has in relation to other obligations.
But it does not follow from this fact that whenever a patient refuses
treatment he is acting in his own best interests. The notion of `best interests'
is not so elastic as to be definable in terms of whatever desires and wishes
a patient may have. Clearly some competent patients refuse treatment contrary
to their `best interests' for indefensible reasons. Given that there are
good reasons for leaving people free to exercise responsibility for their
health, it is unsurprising to find that many abuse this freedom. What is surprising is to find
people wishing to dignify a competent persons `wishes' as, without qualification,
a constitutive component of his or her `best interests'.19
By contrast with competent patients the incompetent
patient is precisely someone who is not capable of adequately taking responsibility
for his own health. So others have to take some measure of responsibility
for him. In doing so they should be guided by an objective understanding
of his `best interests'.
As we have noted, not any reason a person may have
for refusing treatment makes refusal of treatment in that person's `best
interests'. So the fact that a person who is now incompetent made an anticipatory
declaration or gave an advance directive that he should not receive treatment
in certain circumstances does not as such make it to be in that person's
`best interests' that one withhold treatment. If the reason for anticipatory
refusal of treatment was bad then one does not act in an incompetent person's
`best interests' by respecting that refusal. Since that person can no longer
exercise responsibility for himself, the responsibility others have to act
in his best interests requires that they ignore a bad reason for refusing
treatment.
What sorts of bad reason for advance refusals of
treatment should be ignored? Most importantly, any reason which, in anticipation
of some future state of the patient, identifies that state as so unacceptable
that withdrawal/withholding of treatment is demanded precisely in order
to put an end to the life of the patient. The anticipatory refusal is, in
other words, suicidal in character. This is a bad reason for refusing treatment
because it is inconsistent with recognition of the dignity of the
patient. If we are to say that every person possesses human dignity however
`undignified' their condition and circumstances (and, as we have seen, we
must) then we are prevented from regarding any life as lacking worth. The
fact that a person when competent had an anticipatory view of his own life
as not worth living under certain circumstances provides no one with a reason
for ending that person's life. It is neither a view of the value of his
life which anyone is justified in sharing with him, nor could such a view
of a person's life provide a justification for killing.
From an ethical standpoint, advance declarations
(as distinct from advance refusals of treatment) do have a limited role
to play in the treatment and care of incompetent patients. They can provide
evidence of the sorts of consequences of treatment which a patient anticipates
he or she will find unduly burdensome. It remains that such evidence should
be used with caution and with a proper concern not to deny a patient the
real benefits treatment can secure. For it is well-known that anticipatory
views, arrived at when one is healthy, of what one will find unduly burdensome
can change dramatically when one is seriously ill.
4. The duty of ordinary care
4.1 Doctors and the duty of ordinary
care
Our lives begin in a state of comprehensive dependency
on others to meet our most basic needs and often end in a similar condition.
In between we are all in varying degrees, and in respect of varying needs,
dependent on others.
At the beginning of our lives our basic needs are
standardly met by those who have undertaken responsibility for us in bringing
us into the world. At the end of our lives responsibility for our basic
care may devolve upon family members, such as our children. But when our
needs are such that we require medical treatment and doctors undertake that
treatment in a context (typically hospital) in which we are effectively
removed from the care of others they also thereby undertake duties of ordinary
care for us. A commitment to aim to secure the good of health, or some approximation
to that good, or at least the palliation of symptoms which impede our sharing
in other basic goods, hardly makes sense independently of recognition of
our more fundamental claim to be cared for in the basic ways in which human
beings need care: by the provision of food, shelter, warmth and a hygienic
environment, and by respect for those other basic rights which belong to
us in virtue of our dignity as human beings. In the absence of severe shortages
of basic resources, a decision to abandon basic care for someone who is
still capable of being sustained by such care is standardly a decision to
cause that person's death.
4.2 What ordinary care requires
The basic material care human beings need has here
been identified as consisting in the provision of:
- nourishment;
- shelter;
- a warm environment;
- an hygienic environment.
There is an increasing
tendency nowadays to question whether the first item - provision of nourishment
- includes anything other than what is called "provision of direct
oral nutrition and hydration"20.We
think the exclusion of tube-feeding from basic care is not warranted. Once
a tube has been established to deliver nutrition and hydration, the actual
delivery of food and fluids to a patient should be accounted a part of basic
care. For what is secured thereby is not some special form of medical treatment
but the satisfaction of basic needs for food and fluids. 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.
It is significant that the decisions which are
made to withdraw tube-feeding are not standardly justified by reference to
the claim that tube-feeding is burdensome to the patient or is failing to
achieve its end - nourishment - and in that sense is futile. Rather,
the proffered justifications have in mind what is deemed to be the futility
of the very existence of the patient. They therefore envisage as
the purpose of withdrawing tube-feeding the ending of the patient's life.
For that reason such decisions are characteristically decisions to carry
out euthanasia by planned omission.
To say this is not to imply that, once established,
tube-feeding may never be discontinued. There can be circumstances in which
the only available methods of delivering nutrition and hydration become
extremely burdensome to the patient, and that can be a sound reason for
discontinuance. Furthermore,
a dying person who has hitherto been tube-fed, may, in the terminal phase
of dying,21 manifest a
strong disinclination to have the process continue. That would also be a
circumstance in which discontinuance was reasonable.
5. Answers to some of Section
3's "Specific questions"
(1)
[Are there gaps which need filling in current UK ethical/legal guidance
about withdrawing or withholding life-prolonging treatments? Are there other
legal and ethical problems associated with withdrawing or withholding treatment
which are not mentioned in this paper?]22
Guidance about withdrawing/withholding treatment
needs to emphasise that an adverse judgement on the very existence of a
patient is never a proper ground for such decisions. Comprehensive
"Quality of life" judgements are out of place in the practice
of medicine (and in human relationships generally). [See Section 3.2 above
at p.24]
We urge, as on previous
occasions23, the need
for legislation to 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 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)."
(2) [Are international consensus
documents such as the 1992 Appleton International Consensus used in practice
when decisions need to be made? If so, is review of such guidelines necessary?]
We possess no empirical data on the use of the
Appleton Consensus document. Those guidelines in particular certainly need
revision, and unsurprisingly so, since the group responsible for their drafting
was disproportionately euthanasiast in its composition.
(3) [If guidance were to be
produced, are there good reasons for distinguishing between withdrawing
and withholding treatment? If so what are they?]
There is one kind of situation in which there does
seem to be a significant distinction between withholding and withdrawing
treatment. That is the type of situation in which what is involved in establishing
or setting up a form of treatment or care (say tube-feeding) is burdensome
whereas the actual delivery of the treatment or care once established is
not. Hence you might have a reason for withholding a form of treatment or
care which did not hold good if the question you were asking was: Should
this treatment or care be withdrawn.
(4) [Are there good reasons
for distinguishing between the treatment of adults and children when drawing
up guidance? If so, what are they?]
It is assumed that the question is asked in respect
of incompetent adults by comparison with incompetent children. Rules
for treatment which distinguish between categories of patients on the basis
of age are generally unfairly discriminatory. Treatment decisions for all
classes of incompetent patients should be based on consideration of what
is genuinely beneficial for each individual patient. [See Sections 3.1-3.3
above.]
(5) [When patients lack the
ability to make decisions for themselves, will not recover sentience, and
there is no clear indication of their wishes, should withdrawing or withholding
treatment be an issue to be decided by health professionals and families
alone? If so, should the decision-making process conform to strict criteria?
What kind of criteria would be appropriate? Are the ones discussed in this
paper sufficient?]
Properly medical treatment (i.e. treatment
which is directed to achieving one or other of the goals of medicine [see
Section 3.1 above]) may be discontinued by health professionals and families
acting alone provided that the reasons for discontinuance are that the treatment
is no longer securing its therapeutic goal. This Response takes the view
that there is no sound defence for regarding the activity of tube-feeding
as medical treatment. Given that there is a determination to regard it as
such, we take the view that the decision to discontinue it, except in the
terminal phase of dying or when the only available method of delivering
nutrition is excessively burdensome [see 4.2 above], should be reserved
to the courts. Moreover, the courts should not accept as a reason for discontinuance
the view a doctor (or others) may have formed that a patient's life is no
longer worthwhile, or is of unacceptable quality.
(6) [Is there a forseeable stage
at which withdrawing nutrition and hydration from patients who have irrevocably
lost sentience would no longer need to go to court?]
No. For reasons explained in Section 1 above, decisions
about withdrawing and withholding treatment are often straightforwardly
decisions to kill by omission, and are morally and legally indefensible.
(7) [Is there a role for Ethics
Committees to be involved in making decisions about withdrawing or withholding
treatment from patients who cannot express their own views?]
No. They are not sufficiently open to public scrutiny,
and not adequately answerable for their decisions.
(8) [Are there particularly
problematic decisions of this type which should be made only by the courts?
If so, can clear parameters be defined to differentiate those cases sufficiently
problematic to require legal overview from those which could legitimately
be decided jointly by families and health professionals? Would ambiguity
about the terms of a patient's refusal of treatment or about competence
to make valid refusal be the type of case where courts should be involved?]
The answer to question (5) above makes it clear
that, with two exceptions, all other cases of proposed withdrawal of nutrition
and hydration should be reserved for decision by the courts.
(9) [Does withdrawing or withholding
artificial nutrition and hydration form a separate category of decision
from any other type of treatment which might be withheld or withdrawn? If
so , why? Does society need to agree clear and strict criteria for withdrawing
or withholding artificial nutrition and hydration? If so, what kind of criteria?
Are the criteria and safeguards discussed in this paper (e.g. a period of
monitoring before a decision is made; an independent second medical opinion)
sufficient?]
Yes, for the reason that it is not medical treatment
but ordinary care.
The criteria the Consultation Paper proposes are
procedural criteria and on their own manifestly inadequate. It is substantive
criteria which are required. What those should be has been indicated in
the answer to question (5) above [see also 4.2 above].
(10) [When decisions about withdrawing
or withholding have to be made, what are the main factors which health professionals
currently take into account when discussing the matter with competent patients?
When deciding how to proceed for patients who cannot express an opinion?]
We have no data relevant to answering this question.
(11) [How should "best
interests" be defined for incapacitated people? What criteria should
be taken into account?]
The `best interests' that a doctor is competent
to identify and serve are: healthy functioning, or whatever approximation
to it is achievable; prolongation of life; and palliation of symptoms where
cure is not possible (see 3.1 above). These are the proper focus of a doctor's
medical care of incapacitated people. He may modify the aims of treatment
in the light of reliable evidence that it may have consequences which are
unduly burdensome to the patient. Treatment should not, however, be withdrawn
or withheld on the grounds that the patient would be `better off dead' because
lacking a worthwhile life. It is never in the interests of patients to treat
them as if they lacked human dignity and their lives were in consequence
disposable (see 2.2.2, 2.3.1 and 3.2 above)
(12) [If a patient has left no indication of who should be
consulted on his or her behalf, how widely should views be sought from people
caring for an incapacitated adult? Should the views of blood relatives take
precedence over others?]
What is crucial is identification of those who
are familiar with the patient, have the objective best interests of the
patient at heart, and who can bear disinterested testimony to the patient's
sensitivities and sensibility which may be relevant in assessing any foreseeably
burdensome consequences of treatment. (See 3.2 above)
(15) [Should there be more research
into how decisions about withdrawing and withholding treatment are made?]
Yes. We need a much clearer picture of the actual
influences on decision-making (particularly the ideological influences).
(16) [Do you consider that there
is broad concern about the use of the "double effect" argument
concerning treatment at the end of life? If so, is the concern shared by
health professionals and the public? Would health professionals welcome
more debate about the implications of "double effect"?]
In section 2.3 above the minimum necessary intellectual
background to an adequate understanding of `double effect' is provided.
Some objections to the `doctrine of double effect' spring from a rejection
of the moral norm which absolutely excludes intentional killing of the innocent.
One form the critique of this norm takes begins from the contention that
there is no morally significant distinction between intending and foreseeing
the consequences of one's choices. If there is not, then of course an absolute
norm forbidding all foreseeable causation of death seems obviously untenable.
And if it were true that there is no morally significant distinction between
intention and foresight then the doctrine of double effect is redundant:
it only makes sense on the assumption that such a distinction exists. This
kind of intellectual attack is typically mounted by utilitarians. This is
not the place to explain all that is mistaken about utilitarianism as a
philosophy of human conduct. But it ought to be clear that utilitarianism
can have no place for the sort of ethic of medical practice which has hitherto
sustained trust in the doctor-patient relationship.
Other objections to the doctrine of double effect
proceed from the fact that it is simply not understood. To make it intelligible
one needs to offer at least the equivalent of what is offered by way of
explanation in the whole of section 2.3 above.
(17) [Are there additions or
amendments that should be made to the list of general points concerning
withholding or withdrawing treatment mentioned in section 2.11 of the discussion
paper?]
It should be clear from all the foregoing that
extensive additions and amendments would have to be made to 2.11 of the
BMA Consultation Document to provide an adequate basis for sound ethical
guidance.
Notes
1 The
Centre is a national Catholic bioethics centre of which the Trustees are
the five Roman Catholic Archbishops of England and Wales (Senior Trustee:
Cardinal Hume). It should be noted that none of the views advanced in this
Response are advanced on the basis of specifically religious beliefs. back to text
2 Lord Mustill, at [1993] 2 WLR pp.388-9: "the distortions
of a legal structure which is already both morally and intellectually misshapen";
"the morally and intellectually dubious distinction between acts and
omissions" (p.399); Lord Browne-Wilkinson at p.387: "the conclusion
I have reached will appear to some to be almost irrational ... I find it
difficult to find a moral answer ... "; Lord Lowry at p.379: "
... a distinction without a difference ..." back
to text
4 Euthanasia. Report of the Working Party to review the British
Medical Association's guidance on euthanasia.
London: British Medical Association, May 1988. back
to text
5 Luke Gormally,
"The BMA Report on Euthanasia and the case against legalization",
in Luke Gormally (ed) Euthanasia, Clinical Practice and the Law,
London: The Linacre Centre 1994, pp.177-92, at p.189. back
to text
6 See Alexander Macara, "What makes doctors kill?",
BMA News Review July 1987, pp.18-19, reviewing Robert Jay Lifton,
The Nazi Doctors: a study of the psychology of evil, London: Macmillan
1986. back to text
7 The position has been labelled "personism" by
the philosopher Jenny Teichmann, who points out that nothing of substance
can be settled by mere stipulation. back
to text
8 Who would deny that I have a right, after his death, to
the £200,000 my Uncle Charlie has left me in his will even though
I do not know of the existence of the will, let alone desire the £200,000?
back to text
9 This is in effect the judgment frequently made about the
lives of so-called pvs patients, of patients with advanced senile dementia,
of severely handicapped babies, and others, and which is invoked as the
reason for withdrawing/withholding various forms of treatment or care from
them. The point of withdrawal/withholding is then simply to put an
end to their lives. back to text
10 The quotation is from a long endnote to Luke Gormally,
"Walton, Davies, Boyd and the legalization of euthanasia", in
John Keown (ed) Euthanasia Examined: ethical, clinical and legal perspectives
Cambridge: Cambridge University Press 1995, pp.113-140, at pp.139-140.
The final quotation internal to the quoted passage is from Professor Ian
Kennedy's 1994 Upjohn Lecture. Kennedy's highly influential writings are
strongly marked by the misunderstandings and confusions identified in this
passage. The objection relating to evidence for intention was met head-on
by the House of Lords Select Committee on Medical Ethics, who concluded:
"... juries are asked every day to assess intention in all sorts of
cases, and could do so in respect of double effect if in a particular instance
there was any reason to suspect that the doctor's primary intention was
to kill the patient rather than to relieve pain and suffering. They would
no doubt consider the actions of the doctor, how they compared with usual
medical practice directed towards the relief of pain and distress, and all
the circumstances of the case. We have confidence in the ability of the
medical profession to discern when the administration of drugs has been
inappropriate or excessive." House of Lords, Session 1993-94. Report
of the Select Committee on Medical Ethics. Volume 1 - Report. (HL Paper
21-I), London: HMSO 1994, p.50 (para.243). back
to text
11 This is documented with analysis in J M Finnis, "Intention
and side-effects", in R G Frey and C W Morris (eds) Liability and
Responsibility. Essays in law and morals, Cambridge: Cambridge University
Press 1991, pp.32-64. For an authoritative exposition see Lord Goff of Chieveley,
"The Mental Element in the Crime of Murder" (1988) 104 Law
Quarterly Review 30. back to text
12R v Bubb (1850) 4 Cox C.C. and R v Gibbins and
Proctor (1918) 13 Cr.App. R. 134. back
to text
13 This answer is explained more fully in Luke Gormally, "Medicine
as a profession and the meaning of health as its goal", in Briefing
Vol.27 (special issue, October 1997), pp.14-19. back
to text
14 Of course there
are those who reject the view that medicine exists to serve any distinctive
good of human beings and so reject the view that there is any ethic internal
to the practice of medicine. They think of medicine as simply offering to
satisfy those individual desires which can be satisfied through the deployment
of technical skills based on knowledge of how to control and modify the
body. back to text
15 The following understanding of the rationale of palliative
medicine is explained more fully in Luke Gormally, "Palliative Treatment
and Ordinary Care", unpublished manuscript of paper prepared for a
Conference on The Dignity of the Dying Person to be held under the
auspices of The Pontifical Academy for Life, Rome, 24-27 February 1999. back to text
16 Luke Gormally (ed) Euthanasia, Clinical Practice and
the Law, London: The Linacre Centre 1994, p.134. back
to text
17 The distinction between the two kinds of `quality of life'
judgement and its significance are lucidly analysed by John Keown, "Restoring
Moral and Intellectual Shape to the Law after Bland", (1997)
113 Law Quarterly Review, pp.481-503, especially at pp.486-7. back to text
18 Public policy reasons may also justify compulsory treatment
of a competent patient when the patient's condition poses a serious danger
to public health. So even in respect of his own health a competent patient's
veto powers are not absolute. In other areas of life, of course, the law
places considerable limits on the exercise of autonomy. back to text
19 The Consultation Paper Who Decides? issued by the
Lord Chancellor's Department in December 1997 is seriously unsatisfactory
in its understanding of `best interests' in precisely the way identified
in the text. See Who Decides? 3.22-3.25 following the Law Commission
(LawCom231: 3.24-3.28). As we remarked in the Response to Who Decides?
prepared by the The Linacre Centre on behalf of the Roman Catholic Bishops
of Great Britain and Ireland, "... 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" (p.27
of Response). back to text
20 Thus the Law Commission in its Report on Mental Incapacity
confines the provision of nourishment as a requirement of basic care to
"the provision of direct oral nutrition and hydration" (LawCom
No.231, p.79: 5.34) back to text
21 By `terminal phase' the following is understood: "The
patient's condition leaves no room for doubt that death is now near and
is likely to occur within a matter of days. He is: profoundly weak; essentially
bedbound; drowsy for extended periods; disoriented for time and has a severely
limited attention span; increasingly disinterested in food and fluids; finding
it difficult to swallow medication." R G Twycross and I Lichter, "The
terminal phase", in D Doyle, G W C Hanks, N Macdonald (eds), Oxford
Textbook of Palliative Medicine, Oxford: Oxford University Press, 1993:
651. back to text
22 The questions in the Consultation document are included
in italics in square bracket in this version of The Linacre Centre Submission. back to text
23 Submission to the Select Committee of the House of Lords
on Medical Ethics by The Linacre Centre for Health Care Ethics , June 1993. 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, at p.174.
And Human Dignity, Autonomy and Mentally Incapacitated Persons. A
Response to Who Decides? submitted to the Lord Chancellor's Department
by The Linacre Centre for Health Care Ethics at the request of the Roman
Catholic Bishops of England & Wales, of Scotland, and of Ireland, March
1998, p.38. back to text
