Patient self-determination: a good idea that needs work.

December marks the third anniversary of the date when the provisions of the Patient Self-Determination Act (PSDA) of 1991 were scheduled to be in force. A quartet of studies presented last month at the Annual Meeting of the American Public Health Association found that the PSDA has helped nursing home patients and family members to play a larger role in their own care decisions. The researchers also found that physicians are rarely involved in PSDA implementation and that nursing homes sometimes can't carry out residents' decisions.

Dr. Terrie T. Wetle, director of the Braceland Center for Mental Health in Hartford, describes the PSDA as "part of a larger social and medical movement to increase patient autonomy." By encouraging patient use of advance directives, such as Living Wills and designation of proxy decision-makers for health care, Wetle says that the Act "allows the extension of patient autonomy into the period in which patients can no longer communicate for themselves." Though the legislation does not define specific roles for health care professionals in this, and does not require any facility to act contrary to its mission or its ethical values, it mandates written statements explaining the facility's position on advance directives. And, to that extent, it seems to have had an impact.

A New York University project surveyed 100 of New York City's 159 nursing homes two years after enactment of the legislation to determine whether the Act's provisions were understood and implemented by staff. Project director Gloria Ramsey reports that "nursing homes are likely to have clear policy statements and a responsible individual, usually a social worker, ensuring compliance." The survey found that most of the policy statements used in nursing homes were based on models provided by AHCA, AAHSA, or the state regulatory agency.

Ramsey reported wide variation, however, in how the PSDA provisions are implemented. Only 30 percent of the social workers, for example, were familiar with the requirement that all residents must be contacted to discuss advanced directives and proxy decision-makers. Further, only one-third of the nursing homes maintained written procedures for determining when a resident is no longer competent to contribute to advanced directives and other care decisions.

The presence of an ethics committee was found to be one of the most important differentiating factors in the New York City study. Ramsey reported that nursing homes that maintained a standing ethics committee were much more likely to have written procedures and systematic staff training on PSDA issues, and to issue PSDA education materials in large-print formats that could be read by visually-impaired patients. Not surprisingly, these nursing homes tended to have a higher percentage of residents signing advanced directives.

A somewhat more elaborate data collection effort among 117 nursing homes in Connecticut generally confirmed Ramsey's findings. According to Leslie Walker of the Braceland Center, over 60% of the Connecticut homes maintained formal institutional policies governing PSDA issues, while 4.3% reported such policies were under development. Social workers again were found to be the usual point of contact for advanced directives, with more than two-thirds documenting information on the directives in the patient medical record.

Walker reported that 65.2% of the nursing homes made inquiries about patient choices at the time of admission. Unfortunately the sheer volume of paperwork involved in an admission meant that patients and family members often may not devote enough attention to such crucial questions as who could serve as proxy decision-makers if the resident cannot communicate. As a result, nearly half of the designated proxy decision-makers were probate courts or financial conservators who are likely to be ignorant of a resident's beliefs and preferences on extraordinary life-prolonging measures.

The Connecticut sample also found that doctors seldom participated in helping patients to make advance directives. This low level of involvement was inconsistent with the residents' wishes to have the individual who makes the key decisions in life-prolonging care, the physician, provide advice and information.

The most frequent problem reported in implementation of the PSDA centered on community education. Ramsey used such terms as "dismal" and "abysmal" to describe community education on PSDA issues in New York City. She pointed out that social workers responsible for implementing the provisions simply do not have the time to conduct outreach on patient rights among the public who will eventually need this information. Rather, family members often are confronted with questions about extraordinary measures for their elderly relative only when a crisis occurs. This may explain why Connecticut researchers found that conflicts with the residents' family members are the single largest problem experienced by nursing homes in implementing advanced directives.

Another important source of conflict over patient rights results from the procedures and directives guiding emergency medical technicians. Regardless of the patient's stated preferences, emergency technicians responding to a 911 call at a nursing home generally apply extraordinary measures due to a perceived lack of time or authority to do otherwise. In effect, the technicians routinely violate the residents' Do Not Resuscitate (DNR) orders. According to a study of acute care procedures in the Hartford metropolitan area, advanced directives are more likely to be followed when nursing homes use a FAX system to transmit copies of advanced directives to medical control. Even in these cases, however, state legislation, fear of regulatory oversight, and hospital refusal to honor DNR orders signed in nursing homes can limit the practical effects of advanced directives.

The results of the Connecticut study already are being used to change state regulations concerning acceptance of advanced directives by emergency medical teams. Meanwhile, according to Leslie Walker, nursing homes are learning "to avoid the reflex of calling 911" when a patient's advance directive limits use of emergency procedures or hospitalization. Both the New York and Connecticut research teams see this process as evidence that PSDA is succeeding in its goal of giving patients greater control over their care.

Ramsey expressed the general sense that, in spite of inconsistent administration, "The PSDA is a worthwhile federal law in nursing homes; it is legislation in which we can meet the spirit and letter of the law."

Details on the New York City data can be obtained from the PSDA Project, New York University, 429 Shimkin, 50 West 4th Street, New York, NY 10013. Information on the Connecticut studies is available from the Braceland Center for Mental Health, 400 Washington Street, Hartford, CT 06106.