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Long-Term Care: Principles, Programs and Policies.

Long-Term Care: Principles, Programs and Policies. By Rosalie A. Kane and Robert L Kane. New York. Springer Publishing Co., 1987. x + 422 pp.

31.95 text ed. While "four alarm" issues, such as termination of medical interventions, once dominated discussion of bioethics and aging, there is now increasing recognition of "one alarm" issues, of which longterm care policy and decisionmaking are perhaps the most significant. For anyone with a scholar's or practitioners interest in ethical issues in long-term care, these two books are essential reading for their comprehensive and in-depth analyses of the complex phenomena of long-term care. At the same time, both books call for critical ethical analysis. Long-Term Care, written by a social work educator and physician, aims to assemble, review, evaluate, and synthesize evidence about long-term care." The authors pursue this goal with a decided public policy interest in issues of financing and, interestingly, in the influence of "each communitys particular history and characteristics" on financing. They address a wide range of topics, including the current state of long" term care, especially with reference to quality, access, and cost; evidence about effective long-term care in home and day care settings, other community-based long-term care services, nursing homes, and more systematic efforts to deliver long-term care services; and what steps should be taken to improve long-term care in the U.S. The thirty-page list of references is not only a valuable guide to the literature but testimony to the prodigious scholarly effort that this book represents.

Long Term Health Care, written by two physicians, a social worker, and an urban planner involved in community medicine, attempts a systematic compilation and evaluation of information about older persons' long term care needs and how they might best be met." The present state of affairs, they lightly contend, is uncoordinated and incoherent, a point the Kanes also make forcefully. Brickner et al. go on to claim that present long-term care policies in the United States are "wasteful, costly, and cruel," largely as a consequence of the powerful institutional bias of those policies. The result is a "paucity of options for care of the elderly." The authors share an advocacy agenda with the Kanes, although more overtly. Their interest in clinical concerns-the impact of disease on functional ability, dementia, and alcoholism-and their many detailed references to the actual experiences of a few selected programs that they view as working well distinguish Iong Term Health Care

As expected in any study of health care policy, both books take costeffectiveness and cost-benefit considerations very seriously. To their credit, however, both insist on other ethically relevant considerations. Invoking the familiar language of patient autonomy and rights, the Kanes claim that the overriding goal of any long-term care program is to provide the necessary care in a humane fashion, respecting the rights and dignity of the recipients. The ultimate test of such care is whether it is indeed decent." Brickner et al. similarly insist on respect for the rights of elderly persons and pointedly criticize paternalism in long-term care decisionmaking. However, neither book presents a coherent theory of ethics and longterm care, which presents two main problems for each. Firs% neither set of authors seems to appreciate sufficiently the potential contradiction between such macro-level considerations as cost-benefit and cost-effectiveness and-at both the macro and micro-levels-the ethical principles of respect for autonomy and justice. Both books fail to recognize that neither of these fundamental value considerations in health care policy is ethically self-justifying. Indeed, it may well turn out on further ethical analysis that cost-benefit and cost-effectiveness should be lexically ordered lower than respect for autonomy and justice or, at best, treated as prima facie considerations on a par with them.

Second, the universe of ethical considerations that both books invite us to consider as relevant to long-term care decisionmaking is too restricted. This is ironic, inasmuch as each insists repeatedly on the complexity of that decisionmaking. Nevertheless, both books overlook limits that family members may justifiably place on their responsibility to the elderly with long-term care needs. Brickner et al., for example, claim the following: "That children should help their aged and frail parents seems only right. That spouses should provide each other emotional and physical support also seems right." Well, why do these seem right? Both books acknowledge that most of the burden of so-called informal care falls on women-daughters, step-daughters, daughtersin-law, etc. The pattern seems clearly sexist. In a society struggling to reverse generations of gender inequity, it is theoretically insufficient to claim in such an opaque way that family responsibility should be willingly shouldered by (female) spouses, children, step-children, etc. There are two main reasons for holding that a principle of family responsibility is not absolute. First, spouses and children have obligations to individuals other than their frail elderly family (taken most broadly) members, which they have freely undertaken, and from which they cannot excuse themselves. Moreover, they might reasonably judge in particular circumstances that such obligations are weightier than those owed to a frail elderly family member. Second, spouses and children do have legitimate self-interests that they are not in all cases morally obligated to sacrifice to meet the long-term care needs of a family member (adult or child). Consider wanting to continue to derive satisfaction in a career; wanting to be left alone to rest, to think, to dream; wanting the stress of one's home environment brought below personally destructive levels-these and like considerations do not constitute mere self interest In light of these two considerations, Brickner's et d approach is inadequate: the task is to develop more complete and coherent accounts of the ethics of long-term care, a direction in which both books only point I turn next to the uncritical advocacy posture of both books regarding the positive rights of the elderly to public resources, a problem endemic, in my view, to most of the gerontology literature. It is one thing to be critical of paternalism, in defense of negative autonomy-based fights. It is quite another to assert rights to the resources of others. Both books seem unaware of this crucial distinction. Too, oddly, both largely ignore the implications of the changes wrought at the federal and state levels in public policy in this decade. Our recently retired President, with the cooperation of several Congresses, engineered matters so that no new public policy initiatives will succeed unless a revenue base can be found for them-either in cuts to other programs, cuts in tax expenditures, or in new taxes. And they have shifted the burden of social programs in significant ways to the states. The problem in this context is that changes in long-term care policy, especially to reverse its institutional bias and to increase home care services, may result only in a net increase of cost at both federal and state levels. How is this to be justified to citizens as an obligation we should willingly shoulder in the form of the loss of other valued services or expenditures, or in the form of higher taxes?

No convincing answer is forthcoming from either book, in pall because of the above-mentioned lack of a well-developed ethical theory for long-term care, on the basis of which judgments could be reliably made about the relative weight of the positive rights of the elderly vis-a-vis other matters such as limits on family responsibility and reciprocal justice. Moreover, neither book defends why long-term care for the elderly (and not for children with chronic diseases and developmental problems, for example) should receive the priority both sets of authors believe it deserves. The result is a kind of pleading that will be dismissed with the derogatory charge of special interest lobbying in the absence of a convincing, ethically well-founded argument to the contrary. In short, gerontology needs to bite the bullet that ethics puts in its mouth-that uncritical advocacy is not only bad ethics, it is potentially self-destructive advocacy for the elderly.

Finally, these two books provide a thorough account of the American experience. But in this rapidly internationalizing field it is necessary to go beyond "American" bioethics and place the discussion of ethics and aging in a multicultural and international perspective. We are not, after all, the only country in the post-industrial sector confronting the "demographic imperative" and the need to develop consensus, humane public policy in the context of other public policy challenges we face as citizens, for example, caring for those with HIV-related diseases, maintaining an adequate defense, and preventing the destruction of research sites for those of us who share an interest in piscatory metaphysics. Those with an interest in ethics and aging need to incorporate the perspectives, methodologies, and critical insights of our colleagues elsewhere in the world. These books-when read in light of the shortcomings noted above-constitute a valuable starting point for the future development of an ethics of aging that will cast a more jaundiced eye on American preoccupations and open itself to the questions and criticisms of our colleagues in other countries.
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Author:McCullough, Laurence B.
Publication:The Hastings Center Report
Article Type:Book Review
Date:Sep 1, 1989
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