Advance Care Planning Decisions of Women with Cancer: Provider Recognition and Stability of Choices

Abstract

Our prior research found that 43% of women with cancer relied on more than one person for advance care planning (ACP) and support. We conducted this follow-up study to address the stability of patient choices around ACP and providers’ knowledge of patients’ named supports. Living participants from the original survey were recontacted and asked to participate in this study. Of the original 215 participants, 113 (66%) participated. The median time between surveys was 23 months. At resurvey, 33 (26%) patients did not name the same person to all three roles. Controlling for age, race, partner status, tumor type, and remission status, naming one person for all three roles was associated with higher concordance at follow-up for primary support (PS) and health care proxy (HCP). Comparing patients’ and providers’ responses (N = 162), concordance was 71% for emergency contact (EC), 60% for PS, but only 51% for HCP. In this follow-up study, a smaller percentage of women named more than one person to the roles of EC, PS, and HCP compared to the original survey. Of concern, concordance between patient and provider was low, particularly for HCP. This was notable especially when responses changed over the interval time, and when ACP and PS roles were split between multiple people. Understanding the network of people who serve ACP and support roles may be important as we seek to improve the process of ACP and surrogate decision making.

KEYWORDS:

• advance care planning (ACP)
• cancer
• women

This work was funded in part by the Betty Lea Stone fellowship of the American Cancer Society.