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Dependence and autonomy in old age: an ethical framework for long term care
  1. J C Hughes

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    Edited by G J Agich. Cambridge University Press, 2003, £27.00, pp x−207. ISBN 0 521 00920 0

    Perhaps the change of title says it all. This is the revised edition of Agich’s Autonomy and Long Term Care, which was itself a seminal work. The new title gives us the main drift: if autonomy is important in old age, so too is dependence. Indeed, in the actual world in which Agich is keen to locate his study, autonomy and dependence intermingle as inescapable features of old age for real people. As he says: “Maintaining a sense of autonomous wellbeing is consistent with dependencies on medication or professional care if those dependencies help to maintain a more basic sense of functional integrity in those areas of life that individuals value” (p 121).

    The present book retains and renews its standing as a first rate work in the field of philosophical medical ethics. It aims “to sketch a framework for respecting autonomy in long term care”, rather than to work out practical guidelines (p 179). Nevertheless, its strength lies in Agich’s ability to move from the real world of often dependent older people to the philosophical underpinnings of our thinking about how we care for them. In so doing, Agich mounts a powerful attack on what he sees as a prevailing tendency in bioethics. It is the tendency to define autonomy “primarily in terms of a concept of human persons as rational, independent agents and decision makers, who are assumed to be competent and who can be understood without serious reference to society or history” (pp 9–10). As he says: “Influenced by liberal theory, autonomy is often treated in bioethics as a concept that primarily applies to the public realm in which relationships are best described as relations with strangers…” (p 20). The problem is, according to Agich, that this notion of autonomy is derived from political thought, which reflects a legal understanding of rights, and is largely irrelevant to the reality of an older person’s standing in the context of community. “Autonomy fundamentally importantly involves the way individuals live their daily lives; it is found in the nooks and crannies of everyday experience; it is found in the way that individuals interact and not exclusively in the idealised paradigm of choice or decision making that dominates ethical analysis” (p 165). For older people—as for us all—autonomy is properly understood in the context of “essential interrelationship with others and the world” (p 174).

    The strength of Agich’s work comes, not only from his familiarity with the issues in medical ethics, but also from his understanding of the underlying philosophy. For instance, issues around consent are clearly pertinent to autonomy. Agich suggests that consent is typically thought of in an idealised way. Thus, it involves the giving and receiving of information between rational, independent agents. Agich, however, encourages a broader view, one that “acknowledges the concrete experiential and social situation of persons” (p 90). The deficiency in the standard view of autonomy (and consent) is that it is deficient in its abstract view “of persons as independent, self sufficient centres of decision making” (p 29).

    The broader view of persons commended by Agich supports a more nuanced understanding of autonomy, which allows a concurrent recognition of dependency. Respect for autonomy has been used, of course, as a bulwark against the threat of paternalism. Agich’s tendency is to allow a degree of paternalism, but to characterise it as parentalism. “Parentalism has its roots in a phenomenon essential to being a human person—namely, that a human person does not spring into being fully formed as an independent agent but develops through psychosocial relations with human parents. Parentalism signals the essential interconnectedness of all human persons and is rooted in the basic response to the needy other that such relationships engender” (p 48).

    The view of personhood that emerges from Agich’s phenomenological view of actual autonomy—that is, the experiential understanding of what might constitute autonomy in the real world of long term care—is one that stresses agency in an interconnected world. Agich makes reference to both Merleau-Ponty and Heidegger: “The agent in the everyday world is thus an essentially dependent entity, dependent on a socially derived stock of knowledge at hand and a repertoire of abilities and skills that comprise the background against which individual difference is manifested” (p 134). (His talk of the background everyday world and, earlier, of practices and rules (p 74) is redolent of Wittgenstein too.) This rich appreciation of what it is to be a person suggests that actual (real life) autonomy must be “sensitive to the social nature of personhood and to complex conditions that actually support the unique identity of those individuals needing long term care” (p 134).

    I probably need to say little more. This is an excellent book. It is not a light read, but nor is its message lightweight. In the best of all possible worlds it would carry some clout in every old age service and every institution serving the (real) needs of older people. Nonetheless, it does not need to escape all critical comment.

    My own predisposition is to be touchy about talk of “the medical model”, especially when it is blamed vicariously. I think it is an insight to point out how models of medical care have infiltrated nursing homes and in so doing have made them less homely and more institutional (page 73). I would not accept, however, the linkage made between the imposed structure of three meals a day and “the medical model”; otherwise one has to accept, incredibly, that “the medical model” has infected hotels throughout the world too! Now, in a really good hotel food can be obtained at any time, day or night. There is no reason why residential and nursing homes should not provide a similar service, but who would pay? Such structural or economic matters are beyond Agich’s remit. Nevertheless, they do shape the everyday reality of actual autonomy: and they are not going to be gotten rid of by reforming “the medical model”. In cheap establishments breakfast is served at a set time.

    Similarly, at least in my experience of geriatric and old age psychiatry teams, it is not true that: “The goal of resuming normal activities or regaining a premorbid quality of experience and range of activities is hardly ever explicitly the main object of concern for health professionals” (p 71). It may be, once again, that systemic or economic factors limit the ability of services to pursue rehabilitation effectively. Yet rehabilitation is certainly the avowed aim of such services. These are, however, mere niggles.

    A more substantial complaint is that Agich gives away too much when he says: “Without a solid sense of a past, we would be cut off from our own resources, our own skills, and habits of thought. We would be bereft of the ability to function as an agent” (p 147). This seems to suggest that people with dementia lack agency and, therefore, personhood. Some might think this true, but I wonder if it is what Agich intends? Agency is not held intact solely by memory. As in the case of old age generally, it is the situated nature of individuals that helps to maintain agency and personhood.

    In such a richly argued and scholarly work it might seem churlish to point to an omission, but I was struck by the lack of reference to the work of Tom Kitwood. This was particularly so in Agich’s account of the phenomenology of the social existence of persons, which he considers highly relevant to autonomy in long term care. He writes of the spatial, temporal, communicative, and affective dimensions (p 125 ff). His elucidation of these dimensions brought to my mind what Kitwood regarded as the main psychological needs of people with dementia: attachment, comfort, identity, occupation, and inclusion.1 The notion of person centred care in Kitwood’s hands was not just theory, but led to a practical method (Dementia Care Mapping) aimed at improving the quality of care for people with dementia.

    Still, if the omission of Kitwood’s work on dementia is a blemish, it is excusable. What Agich provides—and Kitwood only hints at—is a deep seated and rigorous philosophical treatment of autonomy. The interesting thing (some might think it obvious) is that both Agich and Kitwood, from their different perspectives, emphasise the importance of personhood thickly conceived. For Agich, “The concept of autonomy properly understood requires that individuals be seen in essential interrelationship with others and the world” (p 174).

    Edited by G J Agich. Cambridge University Press, 2003, £27.00, pp x−207. ISBN 0 521 00920 0