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The spirit of the PSDA.

The challenge that confronted Senator Danforth and others who crafted the Patient SelfDetermination Act was to provide a clear directive to states and health care institutions while allowing flexibility and innovation in its implementation. Those charged with implementing the act would do well to capture its spirit by going beyond the mere letter of the law and the anticipated minimal standards to be set by the Health Care Financing Administration.

The intent of the Patient Self-Determination Act is clearly to promote widespread knowledge of advance directives, not only among Medicare and Medicaid beneficiaries but throughout the entire population. Thus the law applies to all adult patients who receive care at a health care facility receiving Medicare or Medicaid dollars. The Health Care Financing Administration, which is responsible for writing regulations for this law, will undoubtedly require that all adult patients be given information.

But the law itself is silent on the responsibilities of the health care institution with respect to incompetent patients and their guardians, as well as patients below the age of maturity who may possess certain rights under state law. Should they be told about patients' rights as the law applies to them? And what about those people who are being treated on an outpatient basis? The law explicitly cites inpatient admission procedures, but not outpatient.

These questions, some of which have been raised by the California Consortium on Patient Self-Determination, exemplify the sort of issue where it is best for those affected by the law's requirements to adhere to the spirit rather than get hung up on complying with the letter of the law.

The Patient Self-Determination Act was intentionally drafted in a manner that would allow HCFA's monitoring to be straightforward and nonintrusive. Thus, while the law establishes a minimal level of activity, its legislative background clearly frees, and encourages, institutions to go as far beyond the mere letter of the law as possible. In other words, it does not much matter if the law or the regulations do not require notification of outpatients, or guardians, or those under eighteen; institutions can and should do these things anyway.

Who should tell patients, when? Institutional initiative should also be an operative principle in terms of who should provide information to patients. During the course of the legislative debate, physicians (speaking through the American Medical Association) felt strongly that the law should not specify who within an institution should have primary responsibility for informing patients. Although the AMA's interest was to avoid being the subject of yet another federal requirement, the point was well made that different institutions could tap the most appropriate human resource to bear this responsibility.

The only specification found in the act is that written information be provided at the time of admission. This requirement at least ensures that patients will receive something uniformly as a part of the admissions process. Nothing precludes an institution, however, from providing the written information at admission, having an admitting or attending physician ask the patient whether she has an advance directive, and having a social worker, nurse, or chaplain talk to the patient or the family at greater length either before discharge or sometime during the hospital stay if it is appropriate.

Is a piece of paper enough? Giving the patients a piece of paper is not enough to guarantee thoughtful discussion about end-of-life care, of course. The act, and the upcoming regulations, only set the minimum standard of educational activity; anything more would have hindered flexibility and innovation. Requiring good sense and good conversation could well have stifled such things, and regulating conversation would have been overly intrusive. But that does not mean that health care institutions should stop short of fully complying with the spirit of the law, which is that advance directives be more routinely discussed and utilized. Some argued during the making of the PSDA that it was unnecessary because institutions could initiate, and were initiating, this type of educational activity on a voluntary basis. The act, however, provides the impetus for institutions to focus on their educational responsibility while not being too detailed in its requirements. Institutional initiative remains critically important to ensure that the law has an effect.

The PSDA presents a challenge to states and health care providers throughout the country: will they let the law lie there flat, demanding compliance, resulting in perfunctory implementation? Or will they seize the opportunity for the law to be the impetus to promote, responsibly and sensitively, greater knowledge of advance directives?

The impact of the PSDA hinges much less on its statutory language or on HCFA's written regulations that on personalized, nonregulated activity. The flurry of activity that has occurred at the state level, and particularly at the institutional level, suggests that the act has already had a positive impact and will continue to do so. Elizabeth Leibold McCloskey is a Legislative assistant to Sen. John C. Danforth of Missouri.

"While providers of services should respect

the wishes of patients even in the absence of

advance directives, increased knowledge and

use of advance directives as a vehicle of

patient decisionmaking would enhance

patient participation in health care

decisions."-In the U.S. Senate, by Sen.

John C. Danforth
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Title Annotation:Practicing the PSDA; Patient Self-Determination Act
Author:McCloskey, Elizabeth Leibold
Publication:The Hastings Center Report
Date:Sep 1, 1991
Words:865
Previous Article:Institutional quandaries.
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