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WITHDRAWING TREATMENT AND PATIENTS’ WISHES:
WHY ADVANCE DIRECTIVES WILL NOT
RESOLVE ALL FAMILY DISPUTES
PROFESSOR LOANE SKENE*
The current surge in enthusiasm for ‘Advance Directives’ in the wake of Terri
Schiavo‘s case1 is based in part on the popular misconception that patients are
legally entitled to choose the treatment they want at the end of life, whereas, in truth,
they are legally entitled only to refuse treatment.
An "Advance Directive" will resolve disputes when a patient refuses treatment, but will not
resolve disputes when the patient wants that treatment to be continued against clinical
advice.
These points are well illustrated by the events in the Schiavo case itself.
The correct legal conceptualisation of such a case, which would be adopted in the United
States of America, the United Kingdom and Australia, is as follows:-
Imagine a patient in Ms Schiavo’s circumstances. The doctors must
decide whether artificial feeding should be withdrawn, so that the patient
is allowed to die.
The first question is whether the patient has previously refused treatment of that kind,
either specifically while she was competent or by implication from general comments,
such as not wanting to be kept alive by artificial means at the end of her life.
If her wish is known not to have this type of treatment in these circumstances, then it
will be lawful for doctors to withdraw life support, provided that withdrawal or not
offering the treatment accords with reasonable medical practice.
If good practice would not support the withdrawal of treatment, for example because
her condition, competence or wishes are unclear, the doctors could be prosecuted for
homicide, which covers wrongful omissions as well as acts; or sued by the patient’s
dependent relatives in negligence, for failing to take reasonable care in properly
assessing and treating the patient. The law thus ensures that treating staff remain
legally accountable for their decisions
.
The principle that patients can refuse medical procedures even in life-threatening
circumstances dates back to the clear statement of Justice Cardozo in
Scholoendorff's Case in 1914 that a patient has ‘a right to determine what shall be
done with his own body’2:
That principle has been adopted throughout the common law world. In England, for
example, patients have ‘[a]n absolute right to refuse to consent to medical treatment’3
and the right is based on ‘the libertarian principle of self-determination’4.
However, there is no corresponding legal principle that patients are entitled to
demand particular treatment. A patient’s right is to choose from options that are
offered by doctors according to their clinical judgment.
The leading English judge, Lord Scarman, referred to ‘the right of a patient to
determine … whether he will or will not accept the doctor's advice’5 (emphasis
added). Similarly, Lord Templeman said in the same case that ‘The patient is free to
decide whether or not to submit to treatment recommended by the doctor [and] …
the patient is entitled to reject [the doctor’s] advice’6 (Ibid, at p 904, emphasis
added).
One might argue that the right to self-determination which gives patients the right to
refuse treatment also includes a right to demand treatment but that argument is false.
A patient’s right to refuse treatment is a negative right. It can be exercised by the
patient without imposing a correlative duty on another person.
It is true that treatment staff will have to withdraw life support as there is no longer
legal authority for them to maintain it. But they are not required to undertake further
treatment. If a patient had a right to require treatment to be continued, that would be
a positive right imposing a legal duty on treatment staff to give effect to it.
It is rare for the law to recognise such rights.
Civil rights – the right not to have something done to you – are readily enforceable
but positive rights, like the ‘right’ to reasonable housing, education and health care
are not directly legally enforceable, as the homeless and their advocates can testify.
There are numerous judicial statements that not only patients, but also courts, cannot
compel doctors to provide treatment that they do not consider clinically appropriate.
Justice Cazalet said:
[I]t is well established that there can be no question of the court
directing a doctor to provide treatment which he or she is unwilling to
give and which is contrary to that doctor’s clinical judgment’7.
Some English judges have expressed reservations about this broad principle
(especially after the passage of the Human Rights Act 1998 (UK)),8 but even if a
court can review the grounds for treatment decisions, no judge has suggested that
patients can legally require treatment; in my view, he wrongly elided a patient’s right
to refuse and demand treatment in Burke's Case i
n a decision that was reversed by
the Court of Appeal9.
If it is accepted that patients do not have a legal right to demand treatment, ‘Advance
Directives’ will be determinative only when a patient has refused treatment.
If a patient is not known to have refused, the issue is then whether it is futile or not in
the patient’s best interests for the treatment to be continued.
In English and Australian law, this question is decided principally by medical opinion,
though some judges have recently cautioned against using a test based solely on
medical factors. In the leading case, a unanimous decision of the House of Lords,
Lord Goff said in Bland's Case that ‘if the treatment is futile … it is no longer in the
best interests of the patient to continue it’10:
Similarly, the Supreme Court of Victoria held that it is lawful to withhold treatment that
has ‘no prospect whatever of improving [a patient’s] condition’11. This principle
applies even if the patient’s family object and want such treatment to be continued;
these too were relevant in the issues that were before the same Court in 2005 in
Korp's Case12.
A New South Wales court held in 2004 that treatment including artificial ventilation
and feeding should be withdrawn from a 75 year old man with severe hypoxic brain
damage after cardiac arrest despite family objections13.
In the US, the law also acknowledges that it is lawful to withdraw futile treatment.
The New Jersey Supreme Court held in 1976 that it was lawful to withdraw treatment
when there was ‘no reasonable possibility of a patient returning to a cognitive sapient
state’14.
Similarly, the United States Supreme Court has endorsed the withdrawal of tube
feeding from a patient in a persistent vegetative state15.
This was considered in Cruzan's Case in which the court determined that the relevant
treatment could be withdrawn if there was ‘clear and convincing evidence’ that the
patient would refuse it if she could speak for herself; but it is not essential for the
family to consent for treatment to be lawfully withdrawn.
As Professor John Robertson observed:
"Doctrines of futility have sometimes allowed doctors and hospitals to
refuse or withdraw treatment even though the family insists on
continuing it’.16
In Terri Schiavo’s case, nearly 20 judges took a similar view in a long-running series
of cases running over a seven year period in a number of courts, the issues and
determinations finally extending to the United States Supreme Court.17
In Anglo-Australian jurisprudence as in the US, the patient’s desire to continue to
receive treatment is clearly not determinative in deciding the patient’s best interests.
Indeed, the patient’s wishes have not even been relevant until some English judges
have recently said that ‘best interests’ should be determined from the patient’s
perspective rather than a solely medical one so that the patient’s views may be
considered in making the decision.
For example, Justice Cazalet said in a 2000 decision18:
[E]ven very severely handicapped people find a quality of life rewarding
which to the unhandicapped may seem manifestly intolerable. People
have an amazing adaptability’.
This view of patients’ wishes perhaps has some similarity to the American doctrine of
‘substituted judgment’ which might be thought to require courts to consider the
decision that the patient would have made if able to do so in wanting treatment
continued.
However, as in English law, the patient’s wish is not determinative. At most, it is
relevant in considering whether the particular patient might have been prepared to
accept a quality of life that would not be acceptable to an ‘ordinary person’, which
may be a relevant factor in deciding the patient’s ‘best interests’.
Lord Goff made this clear in Bland by observing that evidence of the patient’s wishes
cannot be relevant when the patient has no awareness of his or her condition, as
could arise where a patient is in a persistent vegetative state).
He said19:
‘where the question is whether life support should be withheld from a
persistent vegetative state patient, it is difficult to see how the
personality of the patient can be relevant, though it may be of comfort to
his relatives if they believe … that the patient would not have wished his
life to be artificially prolonged if he was totally unconscious and there
was no hope of improvement in his condition’.
Thus, despite the substituted judgment test in the United States of America, in fact
there is little difference in practice between American and Anglo-Australian
jurisprudence.
The American courts have considered what the patient would have wanted in such
circumstances, in the same way that English and Australian courts ask about the
patient’s wishes. They are looking for evidence that the patient would not have
wanted the treatment to be continued.
There are a number of clear and relevant factors relevant to such evidence. In
particular whether:
• It would then not be in the patient’s best interests to impose treatment the patient
would have refused.
• It would breach the patient’s right to self-determination, the right to refuse
unwanted treatment.
• If the patient is not known to have refused treatment, then the issue is the
patient’s best interests, to which a desire to be treated will be relevant only
insofar as it indicates a willingness to tolerate ongoing life in an impaired
condition.
• It will not be relevant if the patient is not reasonably likely to regain
consciousness.
The advice that some newspapers and commentators have provided to the public
that they should execute Advance Directives in order to avoid disputes about
treatment at the end of life is legally contentious as much in the United States of
America, as in other countries.
People cannot ensure that they get the treatment they want when they are no longer
conscious by signing an Advance Directive.
They can merely use an Advance Directive to refuse treatment they do not want.
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