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PSDA in the nursing home.

As long-term care providers comply with the Patient Self-Determination Act they will confront the substantial differences that exist between nursing homes and hospitals in relation to health care decisionmaking. These differences arise first from the notion that nursing home care is less trustworthy than hospital care and requires more public oversight. Second, the regulatory system applicable to nursing homes is quite different from that applicable to hospitals and other caregivers and has a significant impact on treatment decisionmaking. A third difference between nursing homes and hospitals lies in the structures of caregiving and governance in most nursing homes. Finally, the informed consent model of health care decisionmaking bas not found a precise fit in nursing home care.

In Conroy (486 A.2d 1209 [N.J. 1985]), the New Jersey Supreme Court established a special regime for discontinuation of treatment in nursing homes which required, among other things, that a state Nursing Home Ombudsman be notified prior to any discontinuation of treatment. The ombudsman was directed by the court to consider every notification of withdrawal of life-sustaining treatment as a possible abuse and, in consequence, to conduct an investigation. The contrasts between this approach and that of the same court in Quinlan are quite obvious and relate to the court's view that nursing homes require more public scrutiny than do hospitals. More recently, in Greenspan (558 N.E.2d 1194 [Ill. 19901) it was argued that withdrawal of a feeding tube from an incompetent patient would always violate Illinois law requiring nursing homes to provide shelter and assistance with meals and prohibited neglect of nursing home residents. Although the court ultimately rejected this claim, these two cases provide some glimpse of a deeply held assumption concerning nursing home care: that withdrawal of treatment is abusive and illegal. Whether nursing home residents as a group should be treated differently from other individuals in regard to treatment decisions is a public policy question that remains unresolved.

Regulations governing quality of care in nursing homes are quite different from those applicable to hospitals, and that too has had an impact on how refusals of treatment are handled. Unlike the regulation of hospitals, nursing home regulation does not initially defer to the judgment of the individual health care providers or to the internal quality assurance mechanisms of the facility. Rather, enforcement is a high priority, capturing the lion's share of the budget for enforcing health care regulations in most states.

The emphasis on enforcement and supervision by public agencies makes administrators risk averse to any action that would attract investigation. Substantively, the regulatory emphasis on treatment, which tends to view nontreatment as an abuse or violation of standards unless proven otherwise, makes discontinuation of treatments risky. Despite changes that allow withdrawal and withholding of treatment, in practice institutional policies on advance directives may still reflect a fear of nontreatment.

Thus in complying with the Patient Self-Determination Act, facilities may communicate a de facto requirement of a written advance directive prior to decisions to discontinue or forgo treatment. In addition, the written material given to residents concerning their rights under state law might overemphasize the regulatory policies of the state agency over the rights created for patients under other state statutes or case law.

Nursing homes typically, though not always, will be less prepared to develop institutional policies as mandated under the PSDA. Most nursing homes do not have institutional ethics committees in place and so lack the experience and the structure for policy making and education in ethics that is ordinarily available in hospitals.

Finally, both the Cruzan case and the Patient Self-Determination Act elevate advance directives among the several bases and methods for health care decisionmaking for incompetent patients. Advance directives rely on an informed consent model of decisionmaking and usually require that a patient be categorized as either competent or incompetent. This bright line assumed to exist between capacity and incapacity is not reflected in the experience of nursing home providers. More frequently, the capacity or incapacity of an individual wavers over some period of time.

In the context of long-term nursing home care, the content and form of the advance directive is important. Most "living wills" will be inadequate to the task because they tend to be limited to situations in which the individual is near death or is permanently unconscious and do not extend to the majority of incompetent nursing home residents. The directive must take into account decisions that do not arise or at least arise differently in a hospital, including the decision to transfer to a hospital. Documents designating a proxy will require updating as friends and family die or otherwise become unavailable. Although the act appears to treat health care institutions as self-contained, this is not the reality for long-term care. There must be coordination of policies among the several providers likely to deliver care to a long-term care patient-including the hospital that might receive the patient for surgery; the home health agency to which the patient might be discharged or from which the patient might be admitted to the nursing home; and the hospice program in which the nursing home patient might be enrolled.

Long-term care providers can respond to the requirements of the Patient Self-Determination Act. Whether compliance with the act will have the salutary effect of shifting the emphasis from regulatory requirements toward patient-directed decisionmaking or simply solidify assumptions already in place remains to be seen. Sandra Johnson is interim dean, St. Louts University School of Law, St. Louis, Mo.

To provide written information to each such individual concerning* an individual's rights under State law

(whether statutory or as recognized by the

courts of the State.) to make decisions

concerning such medical care, including the

right to accept or refuse medical or surgical

treatment and the right to formulate

advance directives ...
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Title Annotation:Practicing the PSDA; Patient Self-Determination Act
Author:Johnson, Sandra
Publication:The Hastings Center Report
Date:Sep 1, 1991
Previous Article:Patients, providers, and the PSDA.
Next Article:Trumping advance directives.

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