The art of medicine Advance decisions, chronic mental illness, and everyday care
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Advance decisions (advance directives) were placed on a statutory basis in English law in 2007. Such decisions can be an important and highly valued way in which a person can ensure that his wishes will be respected when, due to lack of capacity, he is no longer capable of expressing them himself. Health-care professionals, under English law, are obliged to follow an advance decision if they are satisﬁed that it is valid and applicable to the circumstances. Similar legal arrangements are in place in many other jurisdictions including the USA. The theoretical reasons for respecting advance decisions are straightforward but the practice can be highly problematic. Signiﬁcant concern has, for instance, been expressed in the context of suicidal behaviour in which the person, for example who takes a dangerous overdose of drugs, also makes clear through an advance decision (perhaps left as a “suicide note”) that he does not want resuscitation to be attempted. The concern is that in some situations health professionals, either fearing the law or believing their qualms to be old-fashioned paternalism, will wrongly allow patients to die. Most of the discussion around the problematic nature of advance decisions has been concerned with life-threatening situations. But their scope is far broader. They can be of
great signiﬁcance, and no less problematic, in day-today care, and particularly in the setting of chronic mental illness that aﬀects capacity. Consider the following rather ordinary situation that might arise in a home for residents with dementia. Mr A is 76 years of age and lives in a care home. His wife died 4 years previously. He is survived by two daughters and three grandchildren. He has moderate dementia, is forgetful, and doesn’t remember the names of carers or his family. He wanders but has positive relationships with staﬀ and family. Mr A is Jewish and throughout his life has aﬃrmed his religion, including a commitment to avoid eating pork. Before his dementia progressed he clearly expressed the wish to avoid eating pork. Recently, he ate some bacon and pork sausages from another resident’s plate and is demanding that he is also given these foods for breakfast. The staﬀ are concerned because of the importance that he had previously attached to avoiding pork. He continues to demand bacon and sausages and attempts to take food from other residents’ plates. There are two moral reasons given widely for respecting previously stated preferences. First, advance decisions have value because they ensure that what happens to a person is what is best for him. One way of expressing this point is in terms of “critical interests”. These are interests that give our lives as a whole meaning and signiﬁcance. For example, an eye surgeon who devotes her life’s work to treating people with cataracts in the developing world has consciously adopted a project of life that gives her life as a whole meaning and signiﬁcance. Mr A was committed to his faith throughout his life and his advance decision suggests that continuing to behave in accordance with this faith is important to how he understands his life as a whole. Second, advance decisions provide a way for patients’ choices to be respected when patients can no longer express autonomous wishes. This is morally important over and above protecting critical interests. An advance decision (like a last will and testament) has value to the extent to which it is an expression of the person’s competent choices, whether or not they are part of his critical interests: of what gives his life meaning as a whole. Taken together, these appear compelling reasons for ensuring that Mr A does not eat pork, however much he wants and enjoys it. But is it obviously right that his present preferences should be put to one side? Although his present decision-making ability is seriously compromised he retains the ability to express preferences and clearly gained pleasure from eating sausages and bacon. All of us want positive experiences and believe they contribute to our lives going well. Some enjoy sailing www.thelancet.com Vol 377 June 18, 2011
or reading literature, others enjoy watching television and walking in the park. One way that this point has been expressed is to say that we have not only critical interests but also “experiential interests”. Mr A’s new liking for pork can be viewed as an experiential interest and one that contributes to his life going well. Despite his dementia, Mr A continues to be a human being whose current interests deserve respect. Why should he be held hostage to what he wanted in the past? One simplistic analysis inherent in US and English law is to respect a person’s current wishes if he retains decisionmaking capacity, and to follow a valid advance decision if he does not. By ignoring current experiential interests, such an analysis seems to give a clear answer to the dilemma facing Mr A’s carers: prevent him from eating pork. But even on this analysis things are not clear-cut. We may have robust procedures for determining capacity to refuse medical treatment but how would we judge whether Mr A has capacity to choose to eat pork? Would the fact that he no longer understands the religious grounds for avoiding pork he once thought important show that he lacks capacity to choose to eat bacon? It is not clear that it does. There is a danger of circular reasoning. We follow his advance decision only if he lacks capacity to make the choice, but in considering what he needs to understand in order to have capacity we ﬁrst decide whether we favour giving priority to his advance decision or his current wishes and pleasures. We then pick the criteria for assessing capacity to give us the answer we want. The legal analysis fails us: we cannot rely on the idea of competence to solve the dilemma. There are two reasons therefore for being wary of simply following Mr A’s previous wishes and advance decision: it gives no weight to his current experiential interests; and it is not clear that he should be regarded as unable to choose to eat bacon. We cannot, therefore, avoid making judgments about how the types and strengths of reasons a person had for their previous beliefs aﬀect the weight to be given to past, as opposed to present, interests. Consider the following four people who avoid eating pork: Mr P does not like the taste; Mr Q is vegetarian but has no moral objection to eating meat and has adopted his diet as a lifestyle choice since the 1960s; Mr R is a vegetarian by moral conviction who believes it is wrong to cause suﬀering to animals and to kill them and has worked to try and persuade others to be vegetarian; and Mr S was brought up in a religious family and continued to be a member of that religious community where eating meat is proscribed by the community but he has never been evangelical about trying to convert others and thinks it is for others to make their own choices. Mr P would have had little reason to make an advance decision or prevent his future self from eating pork. He has no critical interest in avoiding pork, and if the experiential www.thelancet.com Vol 377 June 18, 2011
interest now lies in eating pork, that is what he should be enabled to do. Do Mr Q and Mr R have equal interests in avoiding pork once their tastes change and they no longer understand or care about their previous values and lifestyle? If Mr R is allowed to eat pork his former self would have viewed this as contributing to animal suﬀering and killing. He has strong reasons for wanting others to protect him from being even an unwitting party to such cruelty. Mr Q would seem to have lesser reasons for wanting such protection. A change in lifestyle is not a concern of the same gravity as contributing to something that you believe is morally wrong. Mr S might have reasons to be protected from eating pork comparable with Mr R, some may say stronger. But if a religious belief requires active endorsement then, after dementia, Mr S might be considered to no longer hold the religion. The carers of people with chronic mental disorder will, not infrequently, be called upon to balance the past values and wishes—including statements made in advance decisions—with the present wishes and interests of those in their care. This will be the case for family carers looking after their relative at home; the staﬀ of care homes and nursing homes, as in the example of Mr A; and hospital staﬀ many of whose patients suﬀer such chronic mental disorders. How are carers to make these decisions? As we have seen, relying on the “algorithm”—if the person has capacity for the decision follow her current wishes, and if she lacks capacity follow her advance decision—simply will not do. The mere fact of an advance decision does not clinch the matter; and given, in any case, that most people will not have completed an advance decision, carers will need to judge how much weight to put on previous beliefs and values. In theory the important issue may be the strength of those beliefs; in practice carers will be able to judge the strength only by careful consideration of the grounds. Furthermore, the grounds are also important in assessing capacity. Consider again Mr Q. Because of dementia he no longer cares about his former lifestyle choice, and perhaps no longer remembers it, but does that mean that he lacks capacity to choose now to eat pork? It may be some comfort to carers facing these diﬃcult decisions and thinking that they might be missing some ethical skill to know that there is no tidy way to come to a right answer. Careful thought, compassion, and wise judgment may in the end be all we have. No algorithm resolves the enigma of the carer’s art. TH would like to acknowledge the Brocher Foundation and the Uehiro Foundation for support in studying ethical issues in mental health care.
*Tony Hope, John McMillan The Ethox Centre, University of Oxford, Oxford OX3 7LF, UK (TH); and School of Medicine, Flinders Medical Centre, Adelaide, SA 5001, Australia (JM) [email protected]
Further reading Agich G. Dependence and autonomy in old age: an ethical framework for long-term care Cambridge: Cambridge University Press, 2003 David AS, Hotopf M, Moran P, Owen G, Szmukler G, Richardson G. Mentally disordered or lacking capacity? BMJ 2010; 341: 587–91 Dworkin R. Life’s dominion London: Harper Collins, 1993 Dresser R. Dworkin on dementia: elegant theory, questionable policy. Hastings Center Report 1995; 25: 32–38 Hope T, Slowther A, Eccles J. Best interests, dementia and the Mental Capacity Act (2005). J Med Ethics 2009; 35: 733–38 Jaworska A. Respecting the margins of agency: Alzheimer’s patients and the capacity to value. Philosophy and Public Aﬀairs 1999; 28: 105–38 Nuﬃeld Council on Bioethics Dementia: ethical issues. http:// www.nuﬃeldbioethics.org/ dementia (accessed June 6, 2011)