Academic journal article The Hastings Center Report

Surely the Wizard Will Help Us, Toto? Implementing the Patient Self-Determination Act

Academic journal article The Hastings Center Report

Surely the Wizard Will Help Us, Toto? Implementing the Patient Self-Determination Act

Article excerpt

Implementing the Patient Self-Determination Act

Hospitals, nursing homes, home health agencies, and HMOs recently reached the one-year mark in attempting to implement the Patient Self-Determination Act.[1] Considerably less time has passed since the Health Care Financing Administration (HCFA) published its belated "interim final rule" on the PSDA in March 1992.[2] Since the rule does little more than parrot the language of the act, its significance may be slight. However, the more provocative feature of HCFA's interim rule is the long preamble generated considerable reaction in four score or so written comments received by HCFA, predominantly from providers, but also from consumers, states and other analysts.

Looked at as a whole, providers' comments to the rule suggest a classic conundrum, evocative of the story of Dorothy and her conflicted companions who sought the great and powerful Oz. On the one hand, providers rightfully insist that flexibility is essential to promoting meaningful patient autonomy. After all, the heart, brains, and courage to make good health care decisions cannot be created by decree or by smoke and fire from on high. In short, the federal government should not tell providers what to do in matters of this sort. Yet, paradoxically, comments from providers repeatedly urge HCFA, the always suspect sage of statutory construction, to tell them exactly what to do. They beseech HCFA to be more specific--more specific about who must receive information about health care decisionmaking rights, when they must receive it, how and when to document advance directives, and how providers can or cannot follow their consciences in complying or not complying with patient directives. In short, give us a brain, a heart, and courage, and transport us to the simplicity and certainly of Kansas.

On none of these points was Congress very specific, and that was so by design. Congress essentially proclaimed, "Thou shalt inform, ask, and educate," and took the wilful leap of faith that providers and the public were best equipped with the brain, the heart, and the courage to navigate their way through this relatively new land of health decisions. Whether the leap of faith will prove beneficial still remains to be seen. Right now, it appears that providers and provider organizations need reminding, like Dorothy, that the power lies within.

In fairness, providers' jitters about the specifics of implementation are not so surprising when the mind-set of provider organizations is appreciated. Most providers do the best job they can, but they feel regularly horse-whipped by regulations that require ever-increasing administrative minutiae to achieve compliance. The following discussion reviews some key concerns expressed by providers and consumer advocacy groups regarding implementation of the PSDA, as reflected in their comments on the interim final fule submitted to HCFA. For brevity, concerns unique to health maintenance organizations or other managed care organizations are not covered.

Documenting Advance Directives: Beginning at the Beginning

The interim rule itself, like the statute, requires providers to begin at the logical beginning--by asking patients at admission if they have an advance directive. Providers must "document in the individual's medical record whether or not the individual has executed an advance directive."[3] HCFA expressly asked in the preamble to the rule for comments on acceptable methods for documenting advance directives.

The primary tension evident in the comments received arises over the advisability of requiring face-to-face dialogue with patients versus using written questionnaires in admission or preadmission materials to ascertain the existence of an advance directive. Consumer groups emphasize the importance of face-to-face dialogue, but provider groups fall almost equally on both sides of the fence. Direct dialogue is labor intensive, but it provides a better starting point--a better opportunity for ensuring understanding, accuracy, and referral when individuals or family members want additional information. …

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