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Advance care directive completion and the conundrum of advance consent

Wednesday 18 October, 2017
by Dr Deborah Lawson

This blog is based on a paper that Dr Deborah Lawson presented at the International Conference on End of Life Law, Ethics, Policy and Practice in Nova Scotia, Canada, 13-15 September 2017. The paper considers whether medical involvement should be required in advance care directive completion, with a particular focus on whether there are relevant differences between advance refusal and advance consent.

Advance care planning is the process of considering and talking about preferences for future medical and health care to guide medical decision-making for a person in the event that they lose capacity to make their own decisions. It includes talking with loved ones and health practitioners about values, preferences and goals of medical care, and can include appointing a substitute decision-maker and, in some cases, recording preferences or directions in writing. Advance care planning has been shown to improve end of life care and patient and family satisfaction and reduce stress, anxiety, and depression in surviving relatives.[1]

In March 2018 Victoria’s new Medical Treatment Planning and Decisions Act 2016 (Vic) (“the MTPD Act”) will come into force. The MTPD Act permits Victorians with capacity to make legally binding advance care directives (ACDs) to refuse or consent to medical treatment in advance of a time when they may no longer have medical decision-making capacity, and in advance of having a medical condition. An ACD under the MTPD Act 2016 can include either or both of an instructional directive and a values directive. A values directive expresses the person’s preferences and values as the basis for medical decisions made for them. An instructional directive expresses binding medical treatment decisions and takes effect as if the person who gave it had consented to or refused medical treatment. The instructional directive is the focus of this blog as it marks a significant change from the existing legislation that permits only persons with a current medical condition to make a statutory ACD, and even then only to refuse medical treatment; there is no option to give advance consent.

The new ACDs must be witnessed by two people, one of whom must be a registered doctor. Both witnesses must certify that the person making the ACD:

  • had capacity in relation to each statement in the ACD;
  • freely and voluntarily signed the ACD in the presence of two witnesses; and
  • appeared to understand the nature and effect of each statement in the ACD.

Victoria is one of only two Australian jurisdictions that require a medical practitioner to be involved in ACD completion. In Queensland, a doctor must certify that the person who made the advance health directive appeared to have the capacity necessary to make the directive.[2] Where medical involvement is not required the reasoning appears to be that the principle of autonomy dictates that a person’s refusal of treatment be respected, irrespective of whether that refusal is medically informed[3]. This reasoning is made clear in the leading Australian case of Hunter and New England Area Health Service v A.[4] Requiring a person to be medically informed before they refuse treatment threatens autonomy because it creates the possibility that a person will be treated against their will if they refuse treatment without having sought medical information.[5]

The conundrum of advance consent

The history of ACDs lies in refusal of life-sustaining treatments. ACDs or ‘living wills’ evolved out of concerns that advances in medical technologies meant that people were having their lives prolonged in circumstances they would not have accepted had they retained the capacity to make their own medical decisions.[6] Recent legislative developments in Australia have incorporated the ability to consent to treatments in an ACD.

The parameters for refusing medical treatment are the same whether treatment is refused at the time it is offered or in advance—there is no requirement at common law for a person who refuses medical treatment to be medically informed. And yet for a doctor to obtain consent as part of contemporaneous medical decision-making, the patient must have information about the treatment or procedure offered. For consent to be valid, the patient must be “informed in broad terms of the nature of the procedure.”[7] This serves to protect the patient’s autonomy by preventing unwanted interference with their bodily integrity. The doctor also has a duty to take reasonable care in the provision of medical information and advice, which includes a duty to disclose the “material risks” of the procedure or treatment on offer.[8] This duty of disclosure protects the patient’s autonomy by ensuring that they can determine the extent to which they’re willing to accept any potential risks.

It is generally accepted that fully ‘informed consent’[9] is not possible when completing an ACD, because of the inherent unpredictability and unknowns involved in making decisions about hypothetical future medical circumstances. However, this does not mean the underlying principles of informed decision-making and the requirements of valid consent should be abandoned. People can waive the right to information when consenting to medical treatment (although this is not encouraged at an individual level, let alone at the population level); however a waiver generally should occur within the context of a doctor-patient relationship and the patient still needs to know at the very least in broad terms the procedure proposed in order to provide valid consent.[10] And yet, despite the increasing emphasis on informed decision-making in contemporaneous medical decision-making, the information requirements of consent are paradoxically relaxed when people make medical decisions in advance: in most Australian jurisdictions there is no requirement for a person providing advance consent to be informed, even in broad terms, about the nature of the procedure or treatment to which they’re consenting.   

Advance refusal compared with advance consent

There are two key principles that support the right to refuse medical treatment in advance without medical information; yet when applied to advance consent, these principles yield different conclusions.

The principles underpinning advance refusals without medical information applied to advance consent

Principle   Applied to refusal Applied to consent
Respect for autonomy  Requires that a person cannot be treated against their will regardless of whether they have been medically informed Supports informed decision-making so that people understand the nature and effect of a procedure before they consent
The desirability for consistency in the law

Reflected in the same parameters for contemporaneous refusal and advance refusal

Should ensure the requirements for advance consent reflect the requirements for contemporaneous consent (at least insofar as possible).

 

Approaches to resolving the conundrum of advance consent

How can the principles of respect for autonomy and the desirability for consistency in the law be resolved in the context of advance consent? There are a few approaches that could be taken.

Recognise advance consent without medical involvement

Firstly, given the minimal information requirements for valid consent, it could be accepted that ACD makers can provide valid, but not informed, consent. Indeed, to provide valid consent a person does not need to be informed by the treating doctor about the nature of the procedure; the person just needs to understand in broad terms the nature of what they are consenting to, irrespective of where their information came from.[11] Doctors can generally feel confident that valid consent has been obtained if the patient has been through a consent process with the treating practitioner or another health practitioner. This approach raises the question of how a future doctor may feel confident that an ACD maker understood a procedure sufficiently well to provide valid consent, particularly if there is no requirement for medical involvement at the time the consent was given.[12]

Accept that advance consent does not have to meet the requirements for valid consent

Alternatively, it could be accepted that consent provided in advance does not have to meet the requirements for valid consent, which appears to be the approach taken (whether or not intentionally) in jurisdictions that do not require medical involvement in ACD completion. However, if long-standing common law requirements for valid consent are to be abandoned for advance consent, then this inconsistency in law should be explicitly justified by the legislature.

Require medical involvement as part of ACD making

Medical involvement could be required as part of ACD making to ensure that consent provided via an ACD is informed, at least to the minimal degree required for valid consent. This is not without its own challenges however, given the range of possible treatment options that people may want to consent to in advance and the difficulties in predicting hypothetical reactions or effects which may lead to a range of further treatment options. Further, this option may impose an unreasonable barrier to ACD completion for people who want to refuse treatments and who—under the common law—are permitted to do so without medical input or advice. It also relies on the assumption that a doctor involved in ACD completion would fulfil their duty of care in the provision of information and advice.

Have different information requirements for advance refusal and advance consent

Another option may be to have different requirements for advance refusal compared with advance consent. Medical involvement could be required if people wish to provide advance consent to ensure that valid consent is obtained to specific treatments, but not required for ACDs containing only refusals of medical treatment. However, this creates potential confusion or complexity, not least because people may wish to consent to some treatments and refuse others in their ACDs, and people may change their minds about whether they wish to consent to or refuse treatments as they consider their options.

ACDs not to provide legally effective consent

An alternative option is to remove advance consent from ACDs altogether, and instead require that consent for a person without capacity be obtained from a substitute decision-maker, who can be informed about the treatment at the time it is offered. It may be argued that this would erode autonomy by limiting the right to make advance medical decisions, but it would be consistent with the common law requirements for contemporaneous consent, which serve to protect autonomy and bodily integrity from unwanted interference. An ACD maker would still be able to inform their substitute decision-maker and/or health practitioners about the treatments or kinds of treatments that they would want their substitute decision-maker to consent to.  

Does the Medical Treatment Planning and Decisions Act 2016 strike the right balance?

The MTPD Act requires that ACDs be witnessed by a doctor who certifies that the maker appears to understand the nature and effect of each of the statements in their ACD. If the ACD maker understands the nature and effect of all of the treatments or procedures to which they consent then the information requirements for valid consent would be satisfied, and doctors providing treatment to the ACD maker in the future could confidently rely upon that consent.

The witnessing requirement provides an opportunity but not a requirement for provision of medical information. ACD makers who can demonstrate that they understand the nature and effect of their ACD and each of the statements contained therein are not obliged to receive medical information or advice. This may impose an unreasonable barrier to ACD completion for people who want to refuse treatment without being required to demonstrate understanding of the effect of their decision. However, there are ACD witnessing requirements in all Australian jurisdictions, and it is questionable whether it is more onerous to require people to see a doctor than to see a lawyer or other authorised witness when they complete their ACD.[13]

Sources:
[1] Detering, K et al (2010) ‘The impact of advance care planning on end of life care in elderly patients: randomised controlled trial’ BMJ 2010; 340
[2] Powers of Attorney Act 1988 (QLD), s 44(6)
[3] See Willmott, L (2010) ‘Advance directives and the promotion of autonomy: A comparative Australian statutory analysis’ 17 Journal of Law and Medicine 556, at 569-571 and Australian Health Ministers’ Advisory Council (2011) A National Framework for Advance Care Directives
[4] [2009] NSWSC 761, at [40] (10)
[5] Willmott, L, White, B, and Howard, M (2006) ‘Refusing advance refusals: advance directives and life-sustaining medical treatment’ Melbourne University Law Review
[6] See the Australian Health Ministers’ Advisory Council (2011) A National Framework for Advance Care Directives, p 4
[7] Rogers v Whitaker [1992] HCA 58; (1992) 175 CLR 479, citing Chatterton v. Gerson (1981) QB 432, at p 443
[8] Rogers v Whitaker, at [16]
[9] ‘Informed consent’ is not a term favoured in Australian case law (see Rogers v Whitaker, at [15]) and is used here merely as short-hand for the process of the doctor discharging their legal duty to disclose material risks.
[10] There is limited case law on the extent to which the right to information can be waived in giving consent to medical treatment but see Ian Kerridge, Michael Lowe and Cameron Stewart, Ethics and Law for the Health Professions, (Federation Press, 4th ed, 2013), at 963-4; Shaun D Pattinson, Medical Law and Ethics (Sweet and Maxwell, 2nd ed, 2009) at 135-36; and Loane Skene, Law and Medical Practice – Rights, Duties, Claims and Defences (LexisNexis Butterworths, 3rd ed, 2008) at 197-98.
[11] See Pattinson (n 10) at 119.
[12] While it seems unlikely a doctor would be liable in trespass for providing treatment consented to in an ACD in a legislative context that permits advance consent and requires doctors to comply with ACDs, consent is not simply a defence to trespass; it is an expression of respect for autonomy and bodily integrity.
[13] For an interesting discussion of the role of lawyers in advance care planning see Ries, N M (2016) ‘Lawyers and advance care and end-of-life planning: Enhancing collaboration between legal and health practitioners’ 23 JLM 887.

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