J7ournal of medical ethics, 1991, 17, 131-135

At the coalface

To treat or not to treat: the legal, ethical and

therapeutic implications of treatment refusal
A N Wear and D Brahams Senior Registrar in Psychiatry and Barrister at Law, respectively

Authors' abstract Background

Health professionals faced with refusal of life-saving MJ had lived in the area for many years. He never knew
treatment may wish to override a person's wishes, especially his father, but lived with his mother until she died. As
if that person suffers from a mental disorder. a child he had a number of neurotic traits including
Mental illness does not automatically mean a patient is encopresis and school refusal. He was educated and left
incapable of making decisions of this nature. It is not school at sixteen to work in the car trade. He was
always clear whether an individual is legally competent to successful in this, eventually owning his own garage.
decide whether to undergo treatment or not. This article He developed diabetes in his late forties, and despite
discusses a clinical example and analyses some of the moral treatment, ocular complications. He was sighted, and
implications. in spite of his illness led a full life. He had no children
or other dependants from his ten-year marriage. His
Introduction wife left following a row in the context of an already
Depressed patients may lack insight into their own dependent and 'clinging' relationship.
condition which would enable them to make a valid His mental state reflected much of this recent
informed treatment decision yet not be so disturbed tragedy although he was alert, co-operative and
that they can be regarded as totally lacking the capacity orientated. He complained of disturbed sleep, loss of
either to consent or refuse. interest, self-blame and general self-neglect. He was
In this article we describe a patient who refused not suicidal, but merely wanted to be left alone - not to
essential treatment. There existed grounds on which die, but he would rather not be bothered by all the fuss.
treatment could be enforced and equally persuasive His appraisal of his condition was accurate. He
grounds for respecting his wishes. The legal and ethical recognised that the toes of his foot were gangrenous
aspects of this dilemma are discussed and finally how and knew that this would worsen if untreated. He was
the dilemma was resolved therapeutically. tired, fed up and simply did not want the offered
treatment. He accepted that he might die, but
Case history recognised that this would not be immediate. (He had
MJ, a fifty-seven-year-old retired garage owner, was dry gangrene of the toes and it was estimated that he
brought to a hospital out-patient department by would be septacaemic in forty-eight hours.)
friends (somewhat reluctantly) because his diabetes The clinical impression was of a man with much to
was poorly controlled. For eight weeks following the be depressed about. His wife had left him, he found
departure of his wife he had 'let himself go'. He no coping (without her) very difficult. He had a chronic
longer read the paper, he spent his days despondent disease. He was suffering from a depressive illness and,
because his wife did not return and occasionally he in refusing the offered treatment was at risk of dying.
went looking for her. He stopped taking his oral The question for clinical management was whether
hypoglycaemics and, a week prior to his referral, two he was to be detained under the Mental Health Act to
toes on his left foot went black. The examining doctor allow treatment of his mental state (and coincidentally
recommended amputation of these toes, a procedure any physical complications of this), or whether his
he flatly refused. He declined any in-patient treatment refusal of treatment was 'informed' and he was capable
insisting that he be taken home. The doctor referred of making this judgement.
him to a liaison psychiatrist - suggesting that he had a In practical terms, obtaining a second opinion by
depressive illness which prevented him from asking relatives or friends for their views provides
appreciating the seriousness of his condition. additional information and probably reduces the
chances of legal complications. However, the
underlying uncertainties of informed consent and
Key words enforced treatment persist.
Treatment refusal; mental competence; informed consent. Consent to treatment has recently been re-examined
132 At the coalface: To treat or not to treat: the legal, ethical and therapeutic implications of treatment'refusal

and consent procedures in the National Health Service judgement and ability to see things in perspective may
clarified. Consent to a physical procedure by a patient seem impaired or distorted to the doctor, but the
must be informed, voluntary and be made by a person question is, is his mental capacity so impaired that the
competent to make such a decision (1). Similarly a doctor is entitled to override a decision to refuse
refusal of 'essential' medical treatment needs to be treatment. The doctor is not as of right entitled to
informed, voluntary and made by someone with the substitute his decision for that of the patient simply
capacity to make such a decision. A recent legal case because he does not agree with it even if the outcome
from Massachusetts supported this view, ruling that a will be death. He will have to be sure on clinical
committed mental patient could justifiably refuse grounds that the patient lacks the necessary capacity to
treatment unless adjudicated incompetent by a judge make an informed decision, at least at the relevant
(2). time. If the patient's mental condition is likely to
improve to a point where he can make an informed
Legal considerations decision, wherever possible the doctor must hold his
In England a patient must give his or her consent hand and wait for it to be forthcoming. Of course there
(express or implied) to medical treatment. Parents of may be situations where there is very little time left for
children can consent on their behalf, though statute manoeuvre and where undue delay will render
provides that at 16 and over, the child can give valid treatment ineffective and/or during which the patient's
consent to all medical and dental treatment. condition is certain to deteriorate even to the point
Depending on his intelligence and maturity, a child where he may die. The law has never pretended to be
below the age of 16 may also legally consent to watertight and grey areas leave doctors free to make
treatment. Where parents are perceived as failing to act clinical decisions that may later be challenged in court.
in the child's best interests, (for example refusal of
blood transfusion where necessary), the doctor (in an Ethical considerations
emergency) may ignore the parents' refusal though By and large doctors (and other health professionals)
where time permits, the child should be made a ward of are more likely to be guided in their decision-making
court. by conscience (or what seems to them to be the right
Sterilisation of mentally incapable minors will course) than by any legal constraints. In discharging
always require the court's permission where the that duty (or exercising clinical freedom) there emerge
purpose is social rather than immediately medically conflicting moral principles. Four moral perspectives
indicated. can be applied in this example:
Other exceptions to the general principle of consent
made are emergencies, where consent may be deemed, 1) Rights theory: All living people have rights. These
provided there is no clear indication to the contrary. In rights include the right to medical treatment, the right
the case of mentally incapable adults, where the to be resuscitated when unconscious and the right to do
treatment is for mental illness the Mental Health Act what they want within the limitation that it does not
authorises medical intervention in certain interfere with another person's rights. The conflict
circumstances, however where the treatment is for a here arises with the patient's refusal of treatment (his
purely physical condition, it does not apply (3). For right) versus the right of others to give treatment when
some years there was left an apparent lacuna in the law deemed necessary by a doctor. In this perspective the
with regard to mentally incapable adults as relatives issue of overruling rights rests on whether a person's
may not lawfully consent to treatment on their behalf. opinion is expressed when he is competent to form
The position was finally resolved by the House of such an opinion.
Lords in the case In re F (4), which allows a doctor to 2) Virtue theory: Virtuousness is the desirable quality
carry out such treatment as he or she feels is required in - that is the fair person is the moral champion. In this
the patient's best interests. He or she must act in a perspective to be fair means making a just decision
manner thought competent and reasonable by a (though what this is remains unknown until a court has
responsible body of medical opinion and it will usually ruled). The conflict here arises because being fair may
be sensible to get a second opinion and consult with the not be doing good, ie making the sick person well.
family before intervening, particularly if the patient Benevolent action by the doctor may not be virtuous.
seems reluctant and/or the treatment is in any way 3) Commonsense morality: This refers to something
controversial. The court's consent to sterilisation we are all familiar with. Its origins are within ourselves
should normally be sought if contraception is not the and amount to a moral perspective we have been
prime purpose of the operation or it is an incidental brought up with. In this example the conflict arises
effect of a necessary procedure, for example between beneficence and autonomy. It is, in this
hysterectomy. paradigm, wrong to go against somebody's wishes. As
Though these principles may be stated with a fair with the Rights theory, the question of competence
degree of clarity, in everyday clinical practice it is not arises. Is this person competent to make requests
always easy to decide whether an otherwise lucid adult which could be interpreted as his right?
who is deeply depressed has the insight and judgement 4) Utilitarianism: This perspective stresses outcome.
to enable him to give a valid consent to treatment. His Providing that the result increases welfare (or is
 A N Wear and D Brahams 133

morally desirable) then the means should be overridden. What is unclear is how these judgements
considered less important. In other words some pain or are made. There are two ethical models that assist in
discomfort is justified in treating a condition providing assessing an individual's ability to act autonomously.
the result increases welfare. In medicine much is done [The capacity to be autonomous is sometimes referred
basing argument on a utilitarian view including to as competency - that is competence to make
unpleasant treatments for leukaemia or disfiguring particular choices.]
surgery for breast cancer. However, in defining Competence is a property of an individual
welfare one must be cautious because a desirable aspect determined by a personal normative standard. In other
of eventual welfare is the right to be able to refuse words it is a value judgement that varies from moment
certain treatments. to moment and situation to situation. One simple view
would be for a minimum standard or threshold above
Within these paradigms, conflicting and coinciding, which an individual could be considered to be
are four moral principles: competent. Those falling below would be guided,
those above, free to choose regardless of the
Beneficence - the desire to do what is considered best consequences. An example of this is in evidencing a
for a person. This includes paternalism as there are choice (5). If a person knows he has a choice to make
occasions where an individual cannot appreciate his then this can be taken as the minimum standard of
best course. mental functioning required to make that choice. An
Autonomy - the fundamental right that people have to attraction of this minimum standard is its consistency
choose their own destiny. Autonomy conflicts with and ease of application. Its limitations are its invalidity.
beneficence and from this a moral dilemma emerges. As a test it may test for something but it is not the
Justice - the principle that values fairness and capacity to act autonomously.
consistency. It is probably a mistake to confuse this A more acceptable model requires a balance between
form of justice with the justice administered by the the decision that has to be made and an individual's
courts. In theory, of course, a just course would be capacity to make it (6). An important decision such as
endorsed in law. the refusing of a life-saving operation has to be
Non-maleficence - the fundamental principle of 'first balanced with the mental competence of the person
do no harm'. In other words a course that is taken that making it. This model's advantage is that it avoids
may go wrong or does not promote welfare is becoming limited to one aspect of the problem. For MJ
unacceptable. Short-term harm has to be weighed with the question is not, is he suffering from a mental
long-term gains. disorder that renders him incompetent? Instead the
question is, does he fully understand what refusing to
In treating this man two questions arise. Firstly is the have the operation means or is his refusal part of a
intended treatment - the removal of his toes - justified? depressive desire for death?
And secondly can it be done against his wishes? Although this latter question may be unanswerable
The first question is easier to answer and lies in the it can guide questioning so that some understanding of
realm of medical expertise. Knowledge acquired from the refusal to co-operate with treatment is acquired. In
experience and by scientific research can present a this example part of the refusal may have been a desire
persuasive argument that such a treatment is justified to involve his next of kin (his estranged wife); there
to prevent septacaemia and death, though its may have been a hope that refusing treatment would
implementation is not without risk and discomfort. have engineered her return.
The second question is more difficult and belongs to Clearly this can only be determined through
another (non-medical) field of expertise. It is this area establishing a relationship with the patient based on
that psychiatry (despite its strong links with physical trust and honest disclosure. This aspect of the
medicine) is sometimes thought to champion. professional relationship - based on the fiduciary
Psychiatrists being those doctors who 'understand' principle - is paramount in assessing the ability to
these things! decide autonomously. Furthermore, through the
In addressing this dilemma the question of partnership process persuasion can influence the
competence emerges. On the whole many would decision. This process will of course take time and is
accept treatment refusal if they believed it was often successful in making a person re-appraise his or
informed, voluntary and made by someone who is her decision. Its value should not be underrated.
competent.
A test for competency?
How much autonomy? Competence is a legal judgement. In English law
J S Mill, in his essay, On Liberty, acknowledged that fitness to plead and testamentary capacity are both
incompetent individuals did exist. Children and those forms of mental competence. The court requires
suffering from 'backward states' needed guidance; if certain mental abilities of the accused (in the case of
unrestrained, he anticipated the emergence of chaos. fitness to plead) so that it is satisfied he understands the
Even the most Libertarian view of autonomy would proceedings. These legal guidelines can then be
acknowledge situations where autonomy could be enacted by psychiatrists making the assessment of that
134 At the coalface: To treat or not to treat: the legal, ethical and therapeutic implications of treatment refusal

person's ability to plead. As such they are exceedingly when he wanted to stop living?
useful. Any enquiry after the event is likely to be biased as
In the United States, the right to refuse treatment opinions polarise with the exigency of the situation. A
has received more attention. One writer (7) has further problem arises in asking the carers concerned
specifically addressed the question of competence in to accept a decision: Suppose a standard ofcompetency
relation to treatment refusal. He suggests the following is met, could we live with the therapeutic decision this
factors in assessing competence: binds us to?
This discomfort underlies criticism of a test for
* The patient's knowledge that he has a choice to competence. Any test needs to be valid and reliable. At
make. present there is no yardstick to assess these functions.
* The patient's ability to understand the available This is Sir Douglas Black's view (9). Guidelines, he
options and their advantages and disadvantages. suggests, lead to restrictive and inflexible practice; at
* The patient's cognitive capacity. worst a checklist which abrogates a doctor from his
* The absence of any interfering pathological professional responsibilities, at best a limitation on
perception or belief, such as a delusional system allowing a doctor to practise his art in an 'ethically
surrounding the decision. aware' manner. This argument is persuasive. The
* The absence of any interfering emotional state, such clinician faced with the dilemma described above must
as severe depression or euphoria. make difficult choices; these dilemmas are frequent
* The absence of any interfering motivational and as professionals we should be able to shoulder the
pressure such as pathological rage. responsibilities but, he adds, we have a right to know
* The absence of any interfering pathological why these problems are difficult. A strong advocate for
relationship such as the conviction of helpless ethical education, he makes this, at the present time, a
dependency on another person. more attractive route. But it hangs in the balance. If
* An awareness of how others view the decision and doctors bow to the pressure of defensive medicine,
the general societal attitude towards the choices, then a test for competency will soon become necessary.
and an understanding of his reasons for deviating For now we act according to moral principles
from that attitude if he does so. inculcated through experience and education.
This casuistic approach demonstrates how Therapeutic outcome
cumbersome a test could become. Such high standards In deciding not to enforce treatment wide consultation
may lead to a large number of otherwise socially was undertaken. It was felt that MJ was able to
competent people being declared incompetent in the understand the consequences of refusing treatment
face of a treatment refusal. It's interesting to note that
even if his argument for not being treated was difficult
using these standards MJ was incapable of making an to see. Having decided this a therapeutic relationship
informed choice and as a consequence might was maintained by offering further care outside the
'justifiably' have been treated against his wishes. hospital. (It is worth noting that rejection of
Another less stringent approach looks at mental therapeutic endeavours are sometimes taken
capacities. Three possible capacities for competency personally by a doctor, resulting in a rejection of
are: further care for the patient.)
The following day MJ agreed to come back to
1. The ability to understand and communicate. These hospital where he underwent a surgical operation. He
include the capacity of a person to become informed left hospital six weeks later, considerably improved
and to express his choice for treatment. both mentally and physically.
2. The ability to reason and deliberate. A more
complex function which allows an individual to Conclusion
consider information and draw inferences about A clinical example in which autonomy was respected
making certain choices. Short-term memory is and treatment was eventually implemented is far easier
considered essential for this process. to report than ifin respecting autonomy the patient had
3. A set of values or conception of what is 'good' which died. It does however highlight how moral priciples
has been stable over time and with which the influence medical practice and decision-making. In
individual's eventual choice is minimally consistent these situations a course of action rather than the
(8). tradition of diagnosis and treatment becomes
paramount. Doctors, through their training, often
Clinical situations in which a dilemma occurs can lead have a well-defined sense of making the correct
to profound disagreements within a team. Arguments choices. Sometimes, there is no correct choice. MJ
over capacities to decide need to focus on particular could have easily been prevailed upon to undergo
areas. In our case the first two capacities are probably treatment ifhe had met a different collection ofmedical
present but the dilemma arises in relation to the third: advisers, and the outcome would have been identical.
Is this how MJ always considered surgery and has he But who should make these decisions? Doctors or
always seen the development of gangrene as the time lawyers, casuistry or sophistry? An ethically educated
 A N Wear and D Brahams 135

view is preferable to blind paternalism. More recently patient. J3ournal of medical ethics 1987; 13: 12-16.
an advocacy system has been suggested whereby a (2) Gutheil T G, Rogers V. Commissioner - denouncement
person's decision, where it conflicts with the doctor's of an important right-to-refuse treatment case. American
journal of psychiatry 1985: 142, 2: 213-216.
can be represented by an advocate to argue his point of (3) Department of Health and Welsh Office. Code ofpractice.
view. This does offer a mechanism for resolving such Mental Health Act 1983. London: HMSO, 1989: Ch 15:
dilemmas but the decisions are likely to remain as 52-57.
vexed as ever. (4) Brahams D. Sterilisation of mentally incapable woman.
Lancet 1989 Jun 3: 1275.
Acknowledgement (5) Roth L H, Meisal J, Lidz C W. American journal of
We would like to thank Dr K W M Fulford for his psychiatry 1977; 134: 279-284.
the
advice in preparing manuscript. (6) Eastman N L G, Hope R A. The ethics of enforced
medical treatment - the balance model. Journal ofapplied
Dr A N Wear is a Senior Registrar in General Psychiatry (7) philosophy 1988; 5, 1: 49-59.
Michels R. Competence to refuse treatment. In: Doudera
at Cavendish House Community Mental Health Centre, A E, Swazey J P, eds. Refusing treatment in mental health
Portsmouth. He is a member of the Royal College of institutions: values in conflict. Ann Arbor, Michigan:
Psychiatrists. Mrs D Brahams is a Barrister at Law, Aupha Press, 1982.
practising in Lincoln's Inn. She is Editor of the Medico- (8) Buchanon A E, Brock D W. Deciding for others. The ethics
legal Journal, Legal Correspondent to the Lancet and a of surrogate decision-making. Cambridge: Cambridge
Fellow of the Royal Society ofMedicine. University Press, 1989: 23-25.
(9) Black D. Guidelines or gumption? The role of medical
responsibility: a view from the profession. In: Hirsch S R,
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