2010 McDonald criteria: a Canadian expert commentary. Neurology 2012; 79(Suppl 2): S1–15. Miller DH, Chard DT, Ciccarelli O. Clinically isolated syndromes. Lancet Neurol 2012; 11: 157–69. Mowry EM. Natural history of multiple sclerosis: early prognostic factors. Neurol Clin 2011; 29: 279–92. Río J, Comabella M, Montalban X. Multiple sclerosis: current treatment algorithms. Curr Opin Neurol 2011; 24: 230–7. Tallantyre EC, Dixon JE, Donaldson I, Owens T, Morgan PS, Morris PG et al. Ultra-high-field imaging distinguishes MS lesions from asymptomatic white matter lesions. Neurology 2011; 76: 534–9. Sati P, George IC, Shea CD, Gaitán MI, Reich DS. FLAIR*: a combined MR
contrast technique for visualizing white matter lesions and parenchymal veins. Radiology 2012; 265: 926–32. Repovic P, Lublin FD. Treatment of multiple sclerosis exacerbations. Neurol Clin 2011; 29: 389–400. Simmons RD, Tribe KL, McDonald EA. Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management. J Neurol 2010; 257: 926–36. Kesselring J, Beer S. Symptomatic therapy and neurorehabilitation in multiple sclerosis. Lancet Neurol 2005; 4: 643–52. Goodman AD, Brown TR, Krupp LB, Schapiro RT, Schwid SR, Cohen R et al. Sustained-release oral fampridine in multiple sclerosis: a randomised,
double-blind, controlled trial. Lancet 2009; 373: 732–8. 18 Yadav V, Bever C, Bowen J, Bowling A, Weinstock-Guttman B, Cameron M et al. Summary of evidence-based guideline: complementary and alternative medicine in multiple sclerosis: report of the guideline development subcommittee of the American Academy of Neurology. Neurology 2014; 82: 1083–92. 19 Van Der Walt A, Sung S, Spelman T, Marriott M, Kolbe S, Mitchell P et al. A double-blind, randomized, controlled study of botulinum toxin type A in MS-related tremor. Neurology 2012; 79: 92–9. 20 Xie T, Bernard J, Warnke P. Post subthalamic area deep brain stimulation for tremors: a mini-review. Transl Neurodegener 2012; 1: 20.
ETHICS IN MEDICINE
An unequivocal good? Acknowledging the complexities of advance care planning K. Robins-Browne,1 V. Palmer1 and P. Komesaroff2 1
General Practice and Primary Health Care Academic Centre, The University of Melbourne and 2Faculty of Medicine, Nursing and Health Sciences,
Monash University, Melbourne, Victoria, Australia
Key words advance care planning, advance directive, ethics, ethical aspects. Correspondence Kate Robins-Browne, Department of General Practice, The University of Melbourne, 200 Berkeley Street, Carlton, Vic. 3053, Australia. Email: [email protected]
Received 16 July 2014; accepted 30 July 2014. doi:10.1111/imj.12556
Abstract Over the past few decades advance care planning (ACP) has become the subject of debate, research and legislation in many countries. Encouraging people to express their preference for treatment in advance, ideally in written form, seems a natural way to identify what someone might have wanted when they can no longer participate in decision-making. The notion of ACP as an unequivocal good permeates much of the research and policy work in this area. For example, ACP is now actively encouraged in Australian federal and state government policies and the Victorian Government has recently published a practical ACP strategy for Victorian health services (2014–2018). However, advance care plan is ethically complex and the introduction of the Victorian health services strategy provides an opportunity to reflect on this complexity, particularly on the benefits and risks of ACP.
Introduction Over the past few decades, advance care planning (ACP) has become the subject of debate, research and legislation in many countries. Encouraging people to express their preference for treatment in advance, ideally in written © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
form, seems a natural way to identify what someone might have wanted when they can no longer participate in decision-making. Effective communication is universally acknowledged as crucial and it is widely considered that ACP is an unequivocal good. However, ACP is in reality associated with significant ethical complexity, in part 957
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because it is premised on particular value assumptions that may themselves generate unintended consequences. The notion of ACP as an unequivocal good permeates much of the research and policy work in this area. For example, ACP is now actively encouraged in Australian federal and state government policies. The National Framework for Advance Care Directives outlines ideal goals for ACP1 and recently the Victorian Government published a practical ACP strategy for Victorian health services (2014–2018).2 The introduction of this strategy provides an opportunity to reflect on the benefits and risks of ACP.
Beneﬁts associated with ACP It is widely agreed in current ACP initiatives that if a person’s specific and relevant preferences are known in advance, he/she should be treated in accordance with these.3 If such preferences are not known, it is commonly considered that treatment should be in accordance with ‘best interests’3 although the meaning of this term remains somewhat ambiguous. An additional complexity is that family members are perceived (because of their emotional involvement) to conflate their interests with those of the patient. This approach reflects two assumptions: that good decision-making is detached and rational, rather than engaged and emotional; and that a person can form and hold interests independent of relationships with others. These notions, which are premised on the idea of individuals as autonomous decisionmakers, are, however, by no means self-evident. The framing of the problem as just stated is also reflected in the dictum that ACP supports and respects ‘patient autonomy’, which is often repeated without any recognition of its limits.4–6 The emphasis on autonomy, to the exclusion of all other moral concerns, fuels a perceived need for advance care plans on the basis of a belief that families and clinicians cannot know what a person ‘would have wanted’ (itself a complex idea) in the absence of explicit discussion about, and ideally formal documentation of, his/her preferences.2 Further, it is assumed that the key criterion for a ‘good decision’ is that the unwell person would have made the same decision. This approach is problematic for several reasons. First, it implies that patients’ loved ones should only consider what the patients would have wanted, not what their loved ones want for them. This obscures both how complicated preferences are – a person rarely, if ever, has a single or straightforward demand – and the reality that preferences may change over time. Second, decisions are not made in isolation, but rather with regard to sociocultural contexts, past experiences and relationships.7 Empirical studies have shown that both end-of-life deci958
sions and engagement in ACP reflect, directly or indirectly, the needs of, and concern for, others.8–13 Third, the ability of surrogates to predict patients’ preferences is limited14 and is not improved by interventions such as guided conversations or provision of written directives.15–18 The argument that ACP is desirable because it enhances autonomy by improving knowledge about what the patient would have wanted is therefore seriously flawed. Another claim made in favour of ACP is that it decreases surrogate distress.19 However, a literature review of 40 papers that examined the impact of decision-making on surrogates produced mixed results, with some studies (including a single randomised controlled trial20) reporting reductions in surrogates’ stress levels and others finding increases in distress, especially where the patient’s prior wishes were perceived to conflict with their ‘best interests’.21 Whatever the truth about the effect – if any – of ACP on surrogates’ distress, the significance of this is uncertain. These circumstances draw attention to the need for alternative, and arguably more attractive approaches. An example of one these is supported by the Victorian ACP strategy.2 In this approach, both patients and surrogates are encouraged to reflect on their values, relationships, past experiences and goals, and to engage in moral conversations with each other, in the confidence that the decisions thereby generated are likely to be ethically sound. The outcomes will, of course, often still be sad and painful, but the process will ensure that the key values relevant to the context have been adequately considered.
Risks of routinisation If a ‘good decision’ were, by definition, that which a person would have made for himself or herself, then it would follow that ACP should become routine. Indeed, there is much in favour of richer and more widely accessible conversations about care plans. On the other hand, there are potential risks associated with a universal requirement for ACP, particularly if, as has been suggested, it were to be adopted as a key performance indicator for healthcare institutions such as hospitals and residential aged care facilities.2 One of these risks is that routine ACP may become just another ‘box to be ticked’, such as whether a child is immunised or whether a woman is up-to-date with her cervical smears. However, such an outcome would seriously undermine any value ACP might have. This is because decisions made in anticipation of an inability to participate are inherently complex and difficult and they cannot be conducted according to formal protocols, but must be tailored to meet the needs of patients and their © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
Complexities of advance care planning
families. If ACP were to become yet another mundane requirement of all clinical practice, linked to key performance indicators, requirements for evidence that discussions have taken place would inevitably shift the focus away from the welfare and needs of patients and their families to those of healthcare providers and the institutions in which they work. Routinisation also generates a further ethical problem: that any actions performed under its banner are necessarily correct and appropriate. For example, doctors view childhood immunisation and cervical smears positively and see participation in these programmes as responsible. They may therefore encourage those who do not wish to participate to rethink their decisions and, following the expectations of ‘informed consent’, provide them with evidence regarding potential benefits. However, ACP is not like these other measures. Decisions made in anticipation of a future inability to participate are moral decisions; they are about how individuals see themselves, how they are seen by others, what matters to them and what matters to those to whom they are close. In this respect, ACP most closely resembles antenatal testing for foetal abnormalities, where the purported goal of preventing the birth of disabled children is presented as a self-evident good22–24 and those resisting such testing are subjected to persuasive arguments which are presented as part of the process of obtaining informed consent. However, as has been vigorously discussed in the community, the value of antenatal testing is not straightforward, and at least, can be seen to depend on critical and fundamental assumptions about what it means to be human, what constitutes an acceptable quality of life and the nature and role of parenthood.25 If antenatal screening were imposed as a routine requirement, women might not only lose a precious opportunity to engage with the ethical complexity of such discussions, but also find themselves pressured to submit to a process whose value, although in reality questionable, is taken for granted.26
References 1 The Clinical Technical and Ethical Principal Committee of the Australian Health Ministers’ Advisory Council. A National Framework for Advance Care Directives. Australian Health Ministers’ Advisory Council; 2011. 2 Victorian Department of Health. Advance Care Planning: Have the Conversation. Melbourne: Victorian Government; 2014.
It is claimed by some that involvement in ACP has already come to be seen as a ‘moral imperative’.27,28 Such an understanding of ACP would make it difficult for those who do not wish to participate to resist doing so. If evidence that ACP has been undertaken becomes a key performance indicator, this pressure will be greatly amplified. Given that clinicians are under no obligation to provide treatments they deem to be without benefit, it is likely that this pressure will be skewed towards having people refuse treatment.27,29
Conclusion Decision-making where a patient’s ability to participate is diminished is often fraught and uncertain. If ACP is to help ease the burden of decision-making, then the focus must be on making ethically sound decisions rather than seeking a single ‘correct’ decision. Documentation is only one part of this process. As was argued by the President’s Council on Bioethics: . . .no legal instrument can substitute for wise and loving choices. . . Proxy directives can appoint decision makers, but only ethical reflection and prudent judgement can guide them at the bedside30 (p. 56). The voices of those who do not favour ACP should be heard and respected. Routine ACP may address some problems, but it may create others. It is necessary to acknowledge openly the complexity and shortcomings of ACP and recognise that it is not an unequivocal good.
Acknowledgements This article arises out of work conducted as part of the first author’s PhD thesis, during which time the author was supported by a National Health and Medical Research Council scholarship.
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