Bridging Disciplinary Boundaries (January 11 - 14, 2007)

PURPOSE: Terri Schiavo's life and death placed an urgent focus on understanding and serving health care surrogates and proxies acting on behalf of incapacitated medical patients. Their responsibilities are enormous, their decisions irrevocable, and their need for clear communication and support profound. Given recent intrusion of governmental entities into such highly personalized issues, these decision-makers often struggle to reconcile increasingly difficult ethical and moral abstractions with the very literal desire to honor loved one's final wishes. This study applied principles from the health belief model (HBM) to gain a better understanding of the factors impacting surrogates' willingness and capacity to act, and to predict their resulting satisfaction with end of life treatment decisions. METHODS: Collaborating with social work and nursing staffs in central Florida hospitals, hospices, and service organizations, the investigator approached surrogates in vivo, immediately following surrogate decisions to start, stop, or take no action on CPR, tube-feedings, dialysis, or mechanical ventilation as patients continued receiving care and treatment. Using a combination of researcher-constructed and standardized measures in a self-report survey, instruments captured written/verbal communications (with physicians and patients), emotional closeness, religiosity/spirituality, and select demographic variables. A newly constructed measure, Perceived Benefits of Treatment Choice (PBTC) was validated, and existing standardized measures were used to assess surrogate self-efficacy (HSPS, Buckey & Abell, 2004) and social support (MSPSS, Zimet et al., 1988). Hierarchical MR assessed the conceptual surrogate decision-making model. RESULTS: Surrogates reported feeling helpless, isolated, and fatigued coping with physical and emotional stressors associated with patients' critical illness and ensuing treatment. Unlike prior research results, this sample (N = 132) expressed satisfaction in having followed patient treatment directives. Standardized measures reported alpha coefficients of .94 (MSPSS) and .88 (HSPS). Surrogates perceiving higher levels of self-efficacy expressed greater decision acceptance (rē = .10, p <. 01), as did those perceiving greater benefits associated with treatment decisions (rē = .165, p < .01); more highly educated surrogates reported greater decision acceptance (rē = .10, p < .01). Isolating the importance of relying on advanced communication with loved ones, respondents (89%) felt they made the best decision possible. IMPLICATIONS: Social workers must design and implement creative, innovative services to support surrogates and proxies during end of life decision-making for incapacitated loved ones. These findings underscore the potential importance of social workers facilitating communications among doctors, patients, and surrogates, and supporting surrogates' beliefs that they are capable of making critical decisions and communicating them effectively to providers. Implications for interdisciplinary health care teams are discussed, with an emphasis on social work contributions in individual and group communications, group mediation, problem resolution and education. Buckey, J. W. & Abell, N. (2004). Validation of the Health Care Surrogate Preferences Scale. Social Work, (49)3, 432-439. Zimet, G.D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1988). The Multidimensional Scale of Perceived Social Support. Journal of Personality Assessment, 52, 30-41.