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 The doctors must decide whether artificial feeding should be withdrawn, so that the patient is allowed to die.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 in 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.
*Professor Loane Skene, Professor of Law, Faculty of Law; Adjunct Professor, Faculty of Medicine Dentistry and Health Sciences, University of Melbourne
1 The various court applications and findings are well summarised by Annas G. ‘Culture of Life’ Politics at the bedside – the case of Terri Schiavo. N Engl J Med 2005;352;1710-1715 at 1710.
2 Schloendorff v Society of New York Hospital (1914) 105 NE 92 at p 93.
3 Re MB (Medical Treatment) [1997] 2 FLR 426 at p 432 (Butler-Sloss LJ)
4 In re F (Mental Patient: Sterilisation) [1990] 2 AC 1 at p73 (Lord Goff)
5 Sidaway v Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital [1985] AC 871 at p 882
6 Ibid, at p 904, emphasis added
7 A National Health Service v D [2000] 2 FLR 677 at p 686 (High Court of Justice: Family Division). For other cases, see Skene L. Withholding and withdrawing treatment in South Australia when patients, parents or guardians insist that treatment must be continued. Adelaide Law Rev 2004;24(2):(in print).
8 Cases described in Skene, n 2 above; Skene L. Disputes about the withdrawal of treatment: The role of the courts. J of Law, Med and Ethics 2004;32(4): 701-7.
9 R (Burke) v The General Medical Council [2004] EWHC, 1879 (Admin); reversed by the Court of Appeal: Burke v General Medical Council [2005] EWCA Civ 1003. See also my critique of Munby J’s judgment: Skene, n 3 above (Disputes); Skene, L. The Schiavo and Korp cases: conceptualising end of life decision making. JLM: 2005 (in press).
10 Airedale National Health Service Trust v Bland [1993] AC 789; [1993] 1 All ER 82 at AC p 870
11 Gardner; re BWV (2003) 7 VR 487 at p 490 (Justice Morris)
12 See note 9 above.
13 Messiha (by his tutor) v South East Health [2004] NSWSC 1061
14 In Re Quinlan 70 NJ 10, 355 A. 2d 647 (1976)
15 Cruzan v Director, Missouri Department of Health 497 US 261 (1990)
16 Robertson J. Schiavo and Its (In)significance. (March 2005) University of Texas Public Law & Legal Theory, Research Paper Series No. 72 at n 14.
17 Note I above.
18 A National Health Service v D [2000] 2 FLR 677 at 687.
19 Ibid, at AC at p 872
Copyright 2005. Greek Legal and Medical Conference