Advance Directives and Surrogate Decision-Making: When Are Patients’ Prior Wishes Not Determinative?

Chapter 6
Advance Directives and Surrogate Decision-Making: When Are Patients’ Prior Wishes Not Determinative?

Professor Sheila McLean has visited Australia on many occasions and she has many friends and colleagues ‘Down Under’. Many will recall her Kirby Oration at the Annual Conference of the Australian Institute of Health Law and Ethics (now the Australasian Association of Bioethics and Health Law) in Newcastle, New South Wales in 2002. Her topic was ‘The Role of Law in Life and Death’.1 This was a continuing theme in Professor McLean’s research and writing, covering consent to medical treatment, refusal of treatment, end of life decision-making and, more specifically for the discussion in this chapter, advance directives. She advocated that advance directives should be followed by healthcare professionals.

In 2009, Professor McLean observed that, in England and Wales, the Mental Capacity Act 2005 ‘enshrines the concept of autonomy in statute, allowing individuals to choose to avoid a particular treatment that they would, for whatever reason, find unacceptable’; and that ‘[i]n Scotland, there is no statute that gives legal effect to advance directives, but there is a general view that they should be followed’.² She acknowledged that there may be ‘doubt about the capacity of the individual to execute a valid directive’; and that doctors may ‘seek a court decision about the validity of the directive’, so that it would be lawful to provide life-sustaining treatment at least until the court’s decision.³ But she supported the right of patients such as Kerrie Wooltorton and Ms B to refuse treatment and to be allowed to die.⁴ It will be recalled that Ms Wooltorton had swallowed antifreeze on a number of previous occasions and had accepted treatment but she refused it on the occasion in question;⁵ Ms B, tetraplegic and ventilator-dependent, refused ventilation and a court affirmed her right to do so.⁶

Advance directives are commonly believed to ensure that patients’ wishes about their future treatment will be given effect if the patient is later not competent to make decisions. However, in the common law and legislation, there are many ways a patient’s wishes may be overridden. This is arguably even more the case in Australia than in the United Kingdom. This chapter reports the findings of an extensive survey in three Australian states of physicians’ knowledge of the law, and their practical decision-making. The survey suggests that physicians rely more on their clinical judgment than on legal principles in making decisions about the withdrawal of treatment. Similarly, surrogate decision-makers are generally required by Australian legislation to act in a patient’s ‘best interests’, rather than making a ‘substituted judgment’ of what the patient would have wanted, even if the patient’s wishes are legally required to be considered in the process. Legislation authorises urgent treatment without consent and courts and tribunals can review and authorise treatment in other cases. In these circumstances, one may question the effectiveness of many directives and other legal strategies in giving effect to patients’ wishes when they are no longer competent. The chapter focuses on Australian law as there has been legislation in Australia on these topics for many years, and draws comparisons with the law in the UK.

In Australia, as in the UK, autonomy, also called self-determination, has been acknowledged by the common law as the predominant principle in medical decision making.7 In Rogers v. Whitaker,⁸ the leading Australian case on ‘informed consent’, the High Court endorsed ‘the paramount consideration that a person is entitled to make his own decisions about his life’.⁹ In a later New South Wales case, the judge accepted that patients can make binding decisions in advance refusing treatment they do not want (in that case dialysis).¹⁰ There has also been legislation in Australia predating the Mental Capacity Act 2005 by many years to give legal effect to patients’ advance directives and to decisions made on behalf of patients by formally appointed surrogate decision-makers.¹¹

Thus, from an ethical and common law perspective (and in Australia in legislation), it has been long recognised that patients themselves, not their doctors, should decide about medical treatment, though the patient will obviously consider medical advice in making the decision. As discussed in the case law, doctors may understand the medical issues – the patient’s history, the features of particular medical conditions and treatment options. However, patients know their own values, which will ultimately determine the treatment they are prepared to undergo.¹² Patients have to assess for themselves their willingness to take risks and bear pain or physical restrictions; and their life goals. The state, ‘the community’ and paternalistic, if well-meaning, physicians are not entitled to determine the medical treatment that competent adult patients will have. The same ideas are reflected in the Australian legislation. In the state of Victoria, the Preamble to the Health Services (Conciliation and Review) Act 1987 (Vic.) states that one of the ‘guiding principles … [to be promoted] in the Victorian health care system’ is ‘an environment of informed choice in accepting or refusing treatment …’ (para. (f)). Under s. 16(2), if a ‘provider’ of health services acts unreasonably by not following the guiding principles, a complaint may be made to the Health Services Commissioner.

A patient’s right to autonomy does not extend to a right to be given any particular treatment, but rather to choose one of the options that is offered by the treating physician or, more usually, to refuse particular treatment that they do not want. Thus in the English case of R (Burke) v. GMC,13 the Court of Appeal held that a patient did not have a right to require that he must be provided with food and water if he later became incompetent and unable to communicate. There has also been a number of Australian cases stating that a patient’s relatives have no legal right to have treatment provided for the patient against medical advice.¹⁴ The treatment to be provided would be decided by reference to clinical judgment about what was appropriate in the circumstances.

A patient’s right to make his or her own medical decisions includes the right to consent or to refuse in advance.¹⁵ Refusal of treatment in advance is more problematic than consent in advance. If treatment has been refused but the circumstances change, and the patient is unable to communicate, treatment cannot then be given even if the patient might have wanted the treatment. The patient might then die. For example, Jehovah’s Witnesses can legally refuse blood transfusions before an operation and, if they are later incompetent, their advance directive is binding and must be followed by the physicians who are treating them, even if the person did not imagine a life-threatening situation when earlier refusing the transfusion. An advance directive cannot be legally overridden by physicians deciding that an emergency has arisen and that treatment is necessary to save the patient’s life, nor to avoid a serious risk to the patient’s physical or mental health. Treating a patient who has refused treatment in advance may be a battery (sometimes called an assault or trespass) for which the physician could be sued, even if the patient has suffered no injury and the patient’s life has, in fact, been saved by the treatment. The bodily violation of being given treatment the patient has refused is an actionable wrong in itself.¹⁶

The level of information and understanding that a patient must have in order to be assessed as competent and to give a refusal of treatment that is later binding has been the subject of some controversy in recent Australian cases. Freckelton has analysed four of these cases and concluded that ‘a measure of uncertainty persists in respect of persons who have reached a decision about rejecting nutrition, hydration or medication without full provision of information to enable the patient to make such a decision’ with judges in some cases imposing a more stringent test than those in other cases. He believes the more stringent test will in future be required by the law, ‘given the importance of the issue’.17 If that occurs, there may be greater scope for physicians to assess patients as incompetent if they are confused or have limited understanding of their condition and options for treatment. Decisions can then be made by someone else, a surrogate decision-maker.

Cases in which a patient has refused the treatment in advance, must of course be distinguished from a case where the patient has neither consented to, nor refused, the treatment. If treatment is provided when the patient is not able to consent, or has not been asked to consent, the treatment might be described as ‘non-voluntary’, meaning that no consent has been obtained. However, providing treatment in such a case may still be lawful. That is certainly true when there is an emergency, both in the UK and in Australia; and the principle may extend further. In England some years ago, in the case of Re F,¹⁸ involving the proposed sterilisation of a mentally incompetent patient, Lord Goff endorsed a principle of ‘necessity’, based on the patient’s best interests, to justify withdrawing treatment from an incompetent patient.¹⁹ The principle of necessity would apply, he said, where ‘the action taken … [was] such as a reasonable person would in all the circumstances take, acting in the best interests of the assisted person’.²⁰ However, that approach, so far as it is based on accepted medical practice, seems to elide principles in the law of trespass (treatment requires consent) and negligence (the physician’s standard of care)²¹ and several judges have ruled that it would not be accepted in Australian common law.

Nicholson CJ said in Re Marion²² in the Family Court of Australia, that he was ‘… unable to see how a test that may be appropriate in considering whether a medical procedure has been carried out with reasonable care can be applied to circumstances where the medical procedure is to be carried out without the consent of the patient’.²³ Mason CJ and Dawson, Toohey and Gaudron JJ said in the High Court of Australia appeal in the same case, ‘The House of Lords decision in Re F was influenced by the particular jurisdictional framework … the court had no jurisdiction to authorise sterilisation’.²⁴ McHugh J also said in the High Court in the same case, ‘Whatever may be the position in England, the approach of their Lordships is not consistent with the common law of Australia’.²⁵ One reason, of course, is that in Australia, the courts did have jurisdiction to review these cases, both at common law and under the guardianship legislation. This means that although treatment may be given without consent in an emergency, Australian physicians may need to be more cautious in other cases. There may be scope to ‘presume’ consent in some circumstances but if there has been an earlier refusal of treatment by the patient or a surrogate decision-maker, they should adopt the statutory procedure for administering treatment that is described below.²⁶

The Australian legislation certainly emphasises the right of patients to refuse treatment they do not want. In Victoria, for example, the Medical Treatment Act 1988 (Vic.) prescribes the procedure for executing a formal Refusal of Treatment Certificate, in the precise form set out in a Schedule to the Act. If a person completes this form and it is witnessed by a registered medical practitioner and another person, a physician who provides the treatment that has been refused may be charged with the offence of ‘medical trespass’ under the Act, as well as being sued for trespass at common law. If a Refusal of Treatment Certificate has been properly executed and witnessed, the treatment must not be provided;27 it is no defence that the treatment is given in an emergency to save a person’s life or to avoid a serious risk to the person’s health. A Refusal of Treatment Certificate does not currently require to be registered even when death will result from the refusal; but the Victorian Law Reform Commission has recommended that it should be possible to register Refusal of Treatment Certificates with an online system.²⁸ In England and Wales, there are additional measures for the applicability of an advance decision if death is a prospect: Mental Capacity Act 2005, ss. 25(5) and (6).

Australian legislation enables a range of surrogate decision-makers to make medical decisions for patients who are not able to make their own decisions.²⁹ These include a tribunal or court, or a guardian appointed by a tribunal or court, or someone appointed by the patient,³⁰ or even a close relative or carer (the ‘person responsible’³¹), though the decisions that can be made by a ‘person responsible’ are limited.³² People may also provide written instructions concerning the treatment they would want in particular circumstances (an ‘instructional directive’³³).

The law therefore seems relatively clear both in the UK and in Australia regarding patient autonomy, the circumstances in which treatment may be given without consent and a patient’s right to refuse treatment, including refusing in advance. Also, under the Australian legislation, surrogate decision-makers are specifically required to take account of the patient’s prior wishes.34 One might therefore expect that physicians would feel themselves legally bound to follow the prior wishes of patients who have refused particular treatment, especially when those wishes have been expressed in documents that appear to be legally binding. However, that is not necessarily the case.

Physicians’ Practice in Making End-of-life Decisions

An extensive empirical study that is currently being undertaken in Australia casts doubt on the effectiveness of the various legal developments in ensuring that patients’ prior wishes are followed in practice. The study is being led by researchers at the Queensland University of Technology.³⁵ It is designed to investigate physicians’ knowledge of the law in New South Wales, Victoria and Queensland, and their practice in taking account of the law when providing end-of-life care, especially in making decisions about withdrawal of treatment from adults who lack capacity. The results are still being analysed but it seems from the preliminary findings that many physicians seem not to understand or follow the law on advance directives and their legal obligations in dealing with surrogate decision-makers.³⁶ The principal guide of many physicians in making decisions is their clinical judgment.

The study commenced with three focus groups being established (a total of 17 doctors), one for each state). Following the focus groups, a pilot survey was developed which, for maximum representativeness, was sent to physicians in a wide range of specialties involved in end of life care: palliative medicine, geriatric medicine, renal medicine, intensive care, respiratory medicine, emergency medicine and medical oncology. The legal questions in the survey were validated by independent legal experts in the three states. The survey set out a number of medical scenarios, followed by questions to investigate the physicians’ knowledge of the law concerning advance care directives (ACDs) and their attitude to them. The response rate was between 24 per cent and 52 per cent for the different specialities.

The responses to question 8 of the survey were especially significant for the issues discussed in this chapter. Respondents were asked whether they would commence antibiotics for a 53-year-old AIDS patient with a valid ACD in which he refused antibiotics if a life-threatening infection arose. He had consented to other treatment. With antibiotics, he could live for some time; without them he would die. His family wanted him to be treated.³⁷ Respondents who said that they would commence antibiotics despite the ACD were then asked to select a reason for making this decision: ‘I do not have to follow the ACD because it is inconsistent with what is clinically indicated’; ‘the ACD is relevant to my decision making but other factors are more relevant’; ‘the ACD is not relevant to my decision making because I don’t believe ACDs are appropriate to determine treatment’; ‘the ACD does not have legal effect’; ‘Other – please specify’. The physicians who said they would not commence antibiotics were also given a range of reasons: ‘The most important consideration is following the patient’s wishes’; ‘The most important consideration is that the law requires me to follow the ACD’; ‘Both of the above considerations are equally important’; ‘Other – please specify’.

This fascinating study has significant implications for the law in this area. The authors ‘estimate that almost 40,000 adult deaths occur nationally each year following a medical decision to withhold or withdraw treatment’38 and in making these decisions, physicians are often ‘acting in significant medico-legal roles’, such as assessing a patient’s mental capacity and communicating with potential surrogate decision-makers.³⁹ But the issues may be more complex and nuanced than may first appear. It is possible that the physicians who seem at first glance to be unaware of the law’s emphasis on patient autonomy, or deliberately decide not to follow it, may be acting not only with understandable compassion, but also in accordance with other legal principles. To make this case, one must consider the circumstances in which a competent adult patient’s prior wishes may lawfully not be followed.

Circumstances in which Patients’ Prior Wishes May Lawfully Not Be Followed

There are many circumstances in which a patient’s general right to decide in advance about treatment may be undermined. These are considered in turn.

Patients’ Statements about Future Treatment May Be Interpreted as Not Applying in the Circumstances