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Guided by intimates.

E.M. Forster's novel Howard's End might be seen as a parable of proxy decisionmaking that underscores the need for the sort of proposal Linda and Ezekiel Emanuel make. The book is full of salutary warnings against relying on families to be good stewards of the interests of their incapacitated members. When the dying Mrs. Wilcox bequeaths her beloved home to Margaret Schlegel, an acquaintance she has become fond of, the Wilcox family actually suppresses the old lady's last will and testament rather than allow the house, Howard's End, to pass to an outsider. Things do turn out all right, of course: Margaret becomes the second Mrs. Wilcox and so comes into her inheritance despite the family's machinations. But as such happy coincidences seem even less likely in

medicine than in other areas of life, the moral for bioethicists would seem to be, Beware of families.

But Howard's End is a cautionary tale for theorists of proxy decisionmaking on a subtler level, as well. Would the ghost of the first Mrs. Wilcox be satisfied with the knowledge that her last wishes were carried out through a twist of fate? It seems unlikely. She didn't just want Margaret to have Howard's End - she wanted to give it to her as her gift, as an expression of her agency. The outcome was as she would have wished it, but it was not through her action that the outcome was achieved.

This suggests that good proxy decisionmaking has two key elements (at least): anticipating what the incapacitated person herself would have wanted, and putting those desires into action in a way that expresses the person's authority to make decisions for herself. As we see it, the Emanuels' creative proposal might very well put us in a better position respecting the preferences of the patient. But if proxy decisionmaking really is justified on the grounds that it allows those who can't choose for themselves to exercise their autonomy - an odd notion on its face - then it will need to concern itself with preserving the patient's agency. Mrs. Wilcox's ghost is not the sole witness to the claim that autonomy makes no sense without agency; imagine your own reaction if your physician excluded you from involvement in health care decisions on the grounds that computerized "expert systems" were available that could accurately anticipate your preferences. It seems implausible that many of us would be altogether content to resign the whole matter to prescient machines; what gets lost is just what we mean by |agency' or |authority.'

We are not claiming that the Emanuels' proposal is altogether insensitive to this second element of proxy decisionmaking. The community standards approach doesn't replace written treatment directives, despite their obvious limitations, or explicitly authorized proxies, despite all the current concern about their relative unreliability as predictors of patient preferences. This suggests that accuracy is not the only relevant matter here. Further, the requirement that the group meet and discuss the results of the treatment preference surveys gives members of the community the opportunity to dissent from or endorse the choices, underscoring the importance of being an agent.

The difficulty, of course, is that, just as not everyone is going to make an advance directive, not everyone is going to go to the meetings. Some patients will join the community and then require a default decision before the community meetings have taken place; others will skip the meetings because of ill health or disinclination; some will attend, but not fully participate. And some will have no choice at all about what health care institution will be taking care of them and so will feel alienated from that community of patients. These people will be in Mrs. Wilcox's position: things may turn out as they wished, but not because they wished it.

But, it might be objected, won't this same difficulty arise no matter what the default mechanism for decisionmaking might be? That is, if the incapacitated patient has left no advance directive, won't there always be an absence of agency? If we stick with the traditional idea, for example, that close relatives are the natural proxies, at least in die absence of advance directives, aren't they just as powerless as the health care institution to decide on the patient's own authority what the treatment should be?

Responding to this question is a crucial and much neglected part of creating defensible schemes for proxy decisionmaking. There are, of course, popular images of human relationships that do portray families as powerless in this regard: if we see persons as fundamentally independent units, living atoms who maintain their essence no matter what their context, and their families as merely associations of such units joined together in the mutual pursuit of individual advantages, the prospects for preserving any shards of the patient's agency look dim. But there is reason to be skeptical about this sort of picture of who and what we are. Consider another image: people with whom we have shared an intimate history over time not only understand our values, they help us shape them, develop them, maintain them, express them. In doing so, they help us shape, develop, maintain, and express our selves. When our intimates serve as proxy decisionmakers, they often bring to that task not only (more-or-less) accurate knowledge of our preferences, but also the constellation of values and experiences out of which our decisions proceed. If anything of our agency survives incapacity, on this view it survives in those contexts of intimacy that have shaped and nurtured the selves we became.

Nor, as our alternative image would have it, is the family merely the repository of the self. Because family life is the living out of a common enterprise, in which intimates share projects and the values that prompt them, the patient's close kin are in a position to see the patient through to some kind of closure in her share of the family's ongoing life. They can keep her connected to the web of intimate relationships, events, and stances toward life that form the core of daily living for most of us.

The Emanuels' proposal represents the possibility of substantial progress over the best interests standard for incapacitated patients who have neither advance directives nor families to guide treatment decisions. It might also serve to supplant family members who act like Mr. Wilcox and his children, selfishly blocking the known interests of their vulnerable intimates. If families are typically like the Wilcoxes, or if human selves are not at bottom importantly relational, then their proposal may be the best we can do for patients who have not made advance decisions expressly. But many families are loving, which suggests that their members' identities and interests are to some extent intertwined. If so, then for family members who are bonded to the patient and have shared some significant portion of their lives with her or him, the closeness itself serves to approximate the patient's own authority. Where this is the case, our traditional view about the appropriateness of next of kin as proxy decisionmakers has more to be said for it than the community standards approach allows.
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Title Annotation:proxy decision-making for terminally ill patients
Author:Nelson, James Lindemann; Nelson, Hilde Lindemann
Publication:The Hastings Center Report
Date:Sep 1, 1993
Previous Article:Feminist Perspectives in Medical Ethics.
Next Article:Praxis makes perfect?

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