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Patients, providers, and the PSDA.

There is little doubt that the Patient Self-Determination Act (passed as part of the Omnibus Reconciliation Act of 1990 and effective 1 December 1991) was given impetus by the Supreme Court decision in Cruzan and the publicity that surrounded the case. The Cruzan family were eloquent spokespeople for the plight of incompetent and helpless people who could be given medical treatment they might not want. The Cruzans also brought home the reality of contemporary medicine's capabilities.

Although work began on the bill long before the Supreme Court issued its decision, press reports that (erroneously) described the case as requiring clear and convincing evidence before treatment could be stopped, fueled the public interest in advance directives and increased public understanding of what an advance directive is.

Introduced by Senators John C. Danforth (RMo.) and Daniel Patrick Moynihan (D-N.Y) in October 1989, the PSDA was intended to empower people to take part in the decisions that affect the duration and condition of their lives. Its sponsors intended to correct the balance of the relationship between health care consumers and providers, which in Danforth's perception had tilted toward "neglecting the caring component of medicine and trampling on the rights of patients" (Elizabeth McCloskey, "The Patient Self-Determination Act" Kennedy Institute of Ethics Journal 1, no. 2 [1991]): 163-69). Danforth believed the public would greatly benefit by being given information about state laws governing health care decisionmaking.

The act's sponsors originally hoped to mandate passage of natural death or health care proxy legislation in every state. Constitutionally suspect, this was also strenuously opposed by groups such as the U.S. Catholic Conference who disfavored federal intervention and federal standards. Some groups representing institutional providers also challenged a federal role in requiring that information be provided to patients. Hospitals thought it would be inappropriate for them to give legal rather than medical advice to their patients-a concern that was addressed in the final act by requiring the states themselves to develop the information institutions would hand out. To those who preferred that information be given to patients by physicians rather than institutions, the Health Care Financing Administration argued that the administrative burden of monitoring individual physicians for compliance would be enormous and practically impossible.

The act as passed does not answer every question and did not intend to. Its underlying assumption is that if informed of their rights many more people will take advantage of them, and that if actively involved in the decisions made about medical care, more people will get care that is responsive to their needs. Such care will by definition be better, and given the perception of uncontrolled, unwanted, costly care, it was thought, may even be cheaper too. As a social experiment in involving people in advance planning for medical care, implementing the act will provide valuable information.

As enacted, the law applies to all health care institutions (hospitals, nursing facilities, hospices, home care programs, and HMOs) receiving Medicare or Medicaid. It requires that all individuals receiving medical care be given written information about their rights under state law to make decisions about that care, including the right to accept or refuse medical or surgical treatment. They must also be given information about their rights to formulate advance directives such as living wills and durable powers of attorney for health care. Institutions must prepare policies consistent with state law that allow individuals to exercise these rights and will be responsible for documenting in each individual's medical record whether he or she has executed an advance directive.

The states must develop a written description of their own laws (whether statutory or case law) to be given to patients. The actual substance of the law concerning our rights to make our own decisions about medical care remains largely a matter for the states to determine. Information about state law approaches to continuing or withdrawing treatment from decisionally incapable patients who have not executed advance directives should be included in the state descriptions of law. The PSDA does not, of course, provide new answers, but where states have already acknowledged families' roles, the PSDA will assist in making that information more widely known.

The written information required by the law must be given out by hospitals at the time of the individual's admission as an inpatient; by nursing facilities when the individual is admitted as a resident; by home health agencies and HMOs when the individual enrolls; and by hospices when care is first given. In addition, institutions are required, either on their own or with others, to undertake public education programs for staff and the community on issues concerning our rights to choose our own care.

The law does not require individuals to complete advance directives. It specifically states that facilities may not condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive. Nor does the federal law override any state law that would allow a health care provider to object on the basis of conscience to implementing an advance directive.

The federal role in implementing the new law is mostly informational: the Secretary of Health and Human Services is required to develop a national education campaign to inform the public of the option to execute advance directives and of a patient's right to participate in and direct health care decisions. The secretary is also required to develop or approve national information that would be distributed by providers to inform the public and medical and legal professions of each person's rights in this area. Thirdly, the secretary is required to assist the states in developing the state-specific written information required by the act and in disseminating that material to the providers for them to distribute to patients. Finally, the secretary is required to mail information to Social Security recipients and add a page to the Medicare handbook describing the new law. Fenella Rouse is executive director, Concern for Dying/Society for the Right to Die, New York, N Y

The requirement . . .is that a provider of services or prepaid or eligible organization (as the case may be) maintain written policies and procedures with respect to all adult individuals receiving medical care by or through the provider or organization
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Title Annotation:Practicing the PSDA; Patient Self-Determination Act
Author:Rouse, Fenella
Publication:The Hastings Center Report
Date:Sep 1, 1991
Previous Article:For experts only? Access to hospital committees.
Next Article:PSDA in the nursing home.

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