Are Advance Directives Becoming an Endangered Species?

Abstract

Advance directives (ADs) get a lot of attention these days. Federal law, special interest groups, the ill, medical ethics literature, and even the popular media trumpet ADs as a convenient, effective way for competent patients to express their wishes about medical care in case of future incompetence. Yet, while many Americans say they like the idea of ADs, only 8 to 15% have signed one. The question arises, Are unidentified obstacles to signing ADs endangering their survival? Recent studies, including the one by Heffner et al in this issue of CHEST (see page 373), try to address this question. Of 218 pulmonary rehabilitation programs responding to Heffner's questionnaire, 169 (77%) said education about ADs is appropriate in such programs, but only 73 (33%) give explicit instruction about ADs. The implication is that more education delivered at the proper times—such as during pulmonary rehabilitation—would convince more patients to sign ADs. I disagree. Despite 5 years of intense publicity about ADs, completion rates remain low. We must identify obstacles other than inadequate education. Below I suggest some. Obstacles from patients: ADs may create anxieties in patients. Some patients may worry about interrupting their busy physicians to discuss ADs when no immediately life-threatening illness exists. Other patients may suffer more substantial anxieties. Some patients, especially those poorly educated about ADs, may confuse ADs with testamentary wills and fear that ADs may take away their decision-making rights and even their property. Still other patients may not be able to face their own deaths. Attendant, deeply disturbing anxieties may prevent these patients from even considering ADs. Obstacles from physicians: Certain characteristics of physicians—especially time urgency, concern for patients' mental health, and the wish for certainty—may also create obstacles for ADs. Overwhelmed by other demands of patient care, many physicians will not bring up ADs during outpatient visits. Furthermore, despite contrary empirical evidence, many physicians believe talk about ADs upsets patients. Finally, some physicians expect too much of ADs: that they be recipes for treatment. ADs do not eliminate all prior uncertainties and may create some of their own. Thus, the uncertainties of using ADs—especially the legal liability1Perkins HS Bauer RL Hazuda HP et al.The impact of legal liability, family wishes, and other “external factors” on physicians' life support decisions.Am J Med. 1990; 89: 185-194Abstract Full Text PDF PubMed Scopus (39) Google Scholar—may discourage physicians from promoting ADs. Obstacles from hospitals: Pressures for hospitals to contain costs and to join ever-larger chains also create obstacles for ADs. Layoffs resulting from such pressures may leave the remaining professional staff overburdened. They may ignore their legal duty to educate patients about ADs. Or the professional staff may reassign that duty to nonprofessional staff who may not grasp the importance of ADs and, thus, perform the duty in a perfunctory way. In addition, the ever-larger hospital chains may have difficulty providing the personal attention ADs require. Institutional priorities may reduce education about ADs to merely a brochure about ADs in the patient's admission papers. I believe ADs are a good idea that should not be allowed to die. With ADs, patients can be partners in decision-making about treatment even during their incompetence. But obstacles other than inadequate education may be making ADs an endangered species among clinical innovations. Clinicians and researchers must identify and remove those obstacles. Otherwise, ADs may become as extinct as dinosaurs or woolly mammoths.