Validation of the Health Care Surrogate Preferences Scale

Advancing medical technology and increasing numbers of incapacitated patients in hospitals and nursing homes have augmented cultural demands to use technology to extend the lives of dying patients (Fletcher, Lombardo, Marshall, & Miller, 1997). In the United States, end-of-life treatment decisions have been examined through the lens of individual patient autonomy (American College of Obstetricians and Gynecologists, 1996; Hardwig, 1993; Keigher, 1994). In today's health care environment, a dual emphasis on cost containment and patient's rights fuels speculation on the types of medical care and treatment available to patients and their surrogates (Kapp, 2001). Although patients prefer family members as surrogates (Hines et al., 2001), they are reluctant to discuss treatment preferences in advance, as evidenced by relatively low rates of advance directive completion (from 10 percent to 25 percent; Dubler, 1995). Although elderly people without family may choose professionals as surrogates (High, 1990), when physician-family member surrogacy was compared, physicians made decisions consistent with their formal medical roles, not as surrogates ethically bound to follow ex pressed patient wishes; family members typically felt greater burdens when making decisions, yet identified more with patient preferences (Silberfeld, Grundstein, Stephens, & Deber, 1996). To date, research interest has focused on decisions of medical patients rather than on those of health care surrogates responsible for making from 60 percent to 90 percent of intensive care treatment decisions (Hines et al.; Swigart, Lidz, Butterworth, & Arnold, 1996). No single decision theory completely addresses the issues facing health care surrogates. Social problem-solving theory characterizes decision making as "a complex, cognitive-affective-behavioral process ... of different components ... and skills" (D'Zurilla & Nezu, 1990, p. 156). In developing the Social Problem-Solving Inventory (SPSI), D'Zurilla and Nezu assessed individual strengths and deficiencies across varying problem-solving contexts. The SPSI's decision-making subscale measures social decision making in daily living but does not capture the essential moral and ethical nuances of decisions made in health care environments. Focused on individual uniqueness and a need for clear communication among clinicians, patients, and families, the clinical pragmatism model adapts clinical bioethics theory to the clinician-patient context, viewing end-of-life health care decisions as moral problems with moral considerations (Fins, Bacchetta, & Miller, 1997). Criticized for overemphasizing medical facts (Jansen, 1998; Tong, 1997), it prompted inclusion of conveyance As a current scale component. In general, health care surrogates should exercise choices reflecting those of patients based on intimate knowledge of another's preferences. Statutes further imply that health care surrogates honor ethical and moral obligations to patients based on previously established relationships and personal, reciprocal bonds of trust developed over time (Fletcher et al., 1997). Yet, state statutes vary in their attempts to define and clarify responsibilities of patients and surrogates, so that resulting ambiguity or conflict can frequently place decisions back in the hands of physicians (Keigher, 1994). Nonetheless, state statutes governing health care surrogate duties and responsibilities (for example, Florida Health Care Surrogate Act, 2002) offer some direction in specifying tasks for scale inclusion and identifying the "interrelationships suitable for the development of a new instrument" (Nunnally & Bernstein, 1994, p. 107). Based on these observations and concerns, this study reports the development of the Health Care Surrogate Preferences Scale (HSPS), a rapid assessment instrument designed to measure the willingness of surrogates to perform their required duties and to convey the wishes and needs of an incapacitated friend or family member to others. …