Sense of Control in End-of-Life Decision-Making.

ABSTRACT

OBJECTIVES: To explore how older adults in the community with a limited life expectancy make healthcare decisions and the processes used when they are not in an acute crisis. DESIGN: Grounded theory. SETTING: Medical programs and geriatrics clinics at the University of California, San Francisco, and the San Francisco Veterans Affairs Medical Center. PARTICIPANTS: Community-dwelling adults aged 67 to 98 with a life expectancy of less than 1 year (N = 20). MEASUREMENTS In-depth semistructured interviews in participants' homes. Constant comparative analysis was used to develop codes and identify themes. RESULTS: Participants generally delegated decisions to others, expressing their wishes by describing desired end-of-life outcomes and highlighting meaningful aspects of their lives. They did this in the belief that the delegate would make appropriate decisions on their behalf. In this way, participants were able to achieve a sense of control without being in control of decisions. Four themes emerged from the analysis that reflect the various approaches participants used to articulate their goals and maintain a sense of control direct communication, third-party analogies, adaptive denial, and engaged avoidance. CONCLUSION: These findings challenge the prevailing view of personal autonomy. These older adults suggest a path to decision-making that focuses on priorities and goals, allowing them to take a more-passive approach to decision-making while still maintaining a sense of control.