Knowledge and perceptions of advance directives among patients with advanced cancer

Background: Most individuals express a desire to die at home and avoid aggressive care near the end of life. However, roughly half of Americans die while hospitalized and many after burdensome interventions. Advance directives (ADs) offer the opportunity for patients to express preferences about end of life care, but rates of AD completion remain low. Whether completion rates relate to knowledge of ADs or perceptions of their utility among advanced cancer patients is unknown.

Objective: To explore and describe advanced cancer patients' understanding of ADs and perceptions of their utility.

Design: We conducted semi-structured interviews with 20 end-stage cancer patients during out-patient chemotherapy infusion visits at an academic medical center. Eligible participants were >18 year, fluent in English, and diagnosed with a terminal oncologic disease such as multiple myeloma, acute myeloid leukemia, or stage IV lung cancer. Interviews were audio recorded, transcribed, and analyzed using modified grounded theory.

Results: Ten of 20 patients had completed ADs. Per self report, all individuals without ADs lacked sufficient knowledge about them. Eighty percent of individuals with an AD completed it in consultation with a lawyer as part of estate planning. No participant mentioned a physician as a source for discussing or obtaining ADs. After clarifying the purpose of ADs to all individuals who had not completed one, the majority (80%) believed ADs were useful for medical decision-making. However, 40% felt an AD was currently inappropriate for them, despite their terminal prognoses. When all participants were asked about the utility of ADs, the two major themes were personal control (75%) and aiding family with decision-making (45%) near the end of life. Among individuals who cited personal control, the majority (73%) expressed a preference for limiting medical therapy. Many participants (89%) who valued aiding the family with decision-making wanted to reduce family burden.

Conclusions: Understanding and knowledge of ADs was poor among seriously ill patients who had not completed an AD, potentially contributing to lack of completion. The belief of some patients that they were not sick enough to benefit from an AD also may contribute to low completion rates. Among patients with ADs, physicians were not considered key to patients' education and experiences with ADs. Lawyers acted as significant contributors in EOL planning, suggesting future potential for collaboration. Discussion and education about ADs by providers, with emphasis on the themes of personal control and family aid, should be explored in interventions targeting AD completion.