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Dementia: Ethical Issues - Justice For Persons With Dementia

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While we can all agree that services for persons with dementia should be better and more plentiful, who should pay for them, and are there limits? The American health care system is oriented to pay for "rescue" medicine that pulls persons in any condition from the jaws of death, but it provides very little to support the expense of chronic and long-term care.

It is easy to reject the notion of categorical age-based rationing of life-extending health care associated with Daniel Callahan (1987), for age alone is never a fair basis for allocating lifesaving. Elderly persons are remarkably heterogeneous, and age is a notoriously poor indicator of outcome in almost all medical circumstances (Binstock and Post, 1991). Yet Callahan succeeded in forcing the question and spurring a moment of debate among intellectuals. On his side of the argument is the reality that overtreatment of older adults is rampant in American medicine, and a source of wide public concern. If the autonomy model cannot solve the problem of overtreatment, then perhaps rationing must. It might be possible for society, by some means of consensus, to arrive at the notion of categorically limiting purposeful efforts to extend the lives of persons in the advanced stage of Alzheimer's disease. This would not be based on age, however, but on the gravity of the condition and its discomforts and burdens to the patient. It would be altogether fitting for policymakers, in dialogue with informed constituencies and through democratic action, to determine that while hospice-oriented long-term care will be paid for with public funds, efforts to rescue a person in advanced and terminal dementia would not be, nor would the protracted expense of long-term care that results from such rescue. In essence, if there were a practical trade-off possible within the health care system, emphasis should be placed on everything but technological rescue efforts for persons beyond the moderate stage of Alzheimer's disease and for whom quality of life, but not quantity of life, should be enhanced.

American society is still not quite at the point of consensus. Yet in the future, policies may be constructed on a majority basis that would in fact limit rescue efforts, at least with respect to dialysis, mechanical ventilators, and cardiopulmonary resuscitation. Perhaps artificial nutrition and hydration in the terminal stage could also be deleted from public funding once the society realizes the burdens this creates (Gillick, 2000).

STEPHEN G. POST

BIBLIOGRAPHY

Alzheimer's Association Public Statement on Tube Feeding (press release). Chicago, 1994.

BINSTOCK, R. H., and POST, S. G., eds. Too Old for Health Care? Controversies in Medicine, Law, Economics, and Ethics. Baltimore: Johns Hopkins University Press, 1991.

CALLAHAN, D. Setting Limits: Medical Goals in an Aging Society. New York: Simon and Schuster, 1987.

GILLICK, M. R. "Rethinking the Role of Tube Feeding in Patients with Advanced Dementia." New England Journal of Medicine 342 (2000): 206–210.

KITWOOD, T. Dementia Reconsidered: The Person Comes First. Buckingham, U.K., and Philadelphia: Open University Press, 1997.

KLEPPER, H., and RORTY, M. "Personal Identity, Advance Directives, and Genetic Testing for Alzheimer Disease." Genetic Testing 3 (1999): 99–106.

LARSON, K. "DeKooning and Alzheimer's." The World & I 12 (1997): 297–299.

MACINTRYE, A. Dependent Rational Animals: Why Human Beings Need the Virtues. Chicago: Open Court Press, 1999.

POST, S. G. The Moral Challenge of Alzheimer Disease. Baltimore: Johns Hopkins University Press, 1995.

POST, S. G. The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying, 2d ed., rev. Baltimore: Johns Hopkins University Press, 2000.

POST, S. G., and WHITEHOUSE, P. J. "Fairhill Guidelines on Ethics of the Care of People with Alzheimer's Disease: A Clinician's Summary." Journal of the American Geriatrics Society 43 (1995): 1423–1429.

ZARIT, S. H., and DOWNS, M. G., eds. Generations: State of the Art for Practice in Dementia (a special issue of Generations) 23, no. 3 (Fall 1999).

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