The Surrogate's Experience During Treatment Decision-Making

MedSurg Nursing, Dec, 1998 by Brenda Recchia Jeffers

Interviews with older adults who had served as surrogate decision-makers provided insights into their unique experiences and the nursing practices that were supportive during decision-making.

Since the late 1980s public interest in ensuring patient autonomy and family authority in medical treatment decision-making has influenced the passage of related federal and state legislation. The federal Patient Self-Determination Act of 1991, mandates that all institutions and agencies receiving Medicare or Medicaid funding must inform patients of their rights under state law to compose health care advance directives, such as a living will or durable power of attorney for health care (National Health Lawyers Association, 1991). In addition, 24 states and the District of Columbia have legal statutes giving authority for decision-making to family members when advance directives are not present (Choice in Dying, 1995).

Past research in the area of surrogate decision-making has focused on the usefulness of advance directives in directing treatment decisions and the ability of the designated surrogate to accurately predict a family member's treatment preferences. A series of articles generated from the Robert Woods Johnson Foundation funded SUPPORT (the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) and HELP (Hospitalized Elderly Longitudinal Project) has provided additional insight into the process and outcomes of treatment decision-making for seriously ill and hospitalized patients (Lynn et al. 1997). However, little is known about the surrogate's perspective during treatment decision-making and what nursing practices are supportive to surrogates during decision-making. Reported in this article are the findings from the semi-structured interviews conducted with 11 older adults, aged 58-72, who had served as surrogate decision-makers for a hospitalized incapacitated family member. The findings reported here were part of a larger study that included additional qualitative data sources (a video documentary and a published anecdotal essay).

Background

Nurses' and surrogates' involvement in decision-making for the seriously ill has been studied by several investigators. Recently, Reckling (1997) examined treatment decision-making during the withholding or withdrawing of life-sustaining treatment. Reckling identified roles assumed by family members and nurses. Both surrogate and nurse assumed the role categories described as advocate (strong to moderate intensity), neutral, or resister (strong to moderate intensity). Reckling noted, however, that no nurse was identified as assuming the resister role. Kennard and colleagues (1996) also examined nurses' involvement in decision-making for seriously ill patients. Data obtained in their study were part of the larger multi-site SUPPORT study. The researchers found that while over 40% of patients and surrogates felt nurses' treatment preferences had an influence in deciding treatment decisions, the majority of nurses reported having limited knowledge of their patients' actual preferences.

Decision-making is stressful for lay and professional caregivers. Bedell, Pelle, Maher, and Cleary (1986) reported that prior conversations with patients were helpful in alleviating guilt when surrogates made decisions to forgo resuscitation. Mirr (1991) reported that the altered sleep and eating patterns of families, as well as visiting restrictions during the first week of the patient's hospitalization, contributed to family stress which in turn decreased the ability of families to make decisions. Bedell et al. (1986) noted that reassurance from physicians and nurses and assurance that their relative would continue to receive medical care and comfort assisted in decision-making to forgo cardiopulmonary resuscitation.

Despite a number of studies examining the end of life, the perspective of the surrogate during treatment decision-making and supportive nursing practices have not been extensively explored. Research that explores the surrogate's experience is needed to increase our understanding of treatment decision-making and nursing practices that support surrogates during this stressful time. The purpose of this study was to gain a greater understanding of the surrogate's experience during decision-making for an incapacitated family member and to provide a detailed description and interpretation of the experience.

Method

The research design of this study was qualitative in nature, using an interpretative phenomenologic research method (van Manen, 1990; Watson, 1988). One of the major assumptions of phenomenology is that human beings are subjective and reflective in nature, and the reality of a phenomenon cannot be known apart from the person experiencing and interpreting it (van Manen, 1990). Selecting this method provided the participants an opportunity to inform the researcher of their decision-making experiences in their own words, and allowed the researcher the freedom to explore the phenomenon from the surrogate's perspective.