Advance care planning: Stability and provider perceptions

Abstract

20734 Background: Previously we reported that 43% of women with female-defined cancer named more than one person to the advance care planning roles of emergency contact (EC) and health care proxy (HCP), and to primary support (PS). However, the stability of these roles and providers’ understanding of them remains a critical question. We conducted a follow-up study to (1) determine how stable patients’ EC, PS, and HCP were over time and (2) assess concordance between whom healthcare providers recognize and whom patients name to these roles. Methods: Following Institutional Review Board approval, patients who originally participated in the first survey were re-contacted and a telephone survey used to re-identify their EC, PS, and HCP. Patients also named providers who played important roles in their care. We then approached providers named by each individual patient and asked them to list who they recognized as the patient’s EC, PS, and HCP. Results: Of 215 original participants, 113 (53%) took part in this study, of whom 81% were in remission. Thirty-one (14%) declined to participate, 44 (20%) were deceased, and 27 (13%) were not reachable. Median time between surveys was 23 months. At re-survey, 84 patients (74%) named one person for all 3 roles. This includes 65/83 (78%) women with partners and 19/30 (63%) single women. The choice for EC, PS, and HCP was stable over time for 73%, 76%, and 88% of women respectively (Table). However, if more than one person was named, significant instability was observed for each role. Comparing provider responses (n=194) to those from patients, concordance was 68% for EC, 59% for PS, and only 51% for HCP. Conclusion: In this follow-up study, 26% named more than one person to the roles of EC, PS, and HCP, likely related to the changing composition of our sample where the majority of respondents were in remission. We found that naming more than one person was associated with increased instability in responses over the interval between studies. This may explain the poor concordance between patient and provider responses for EC, PS, and HCP. Stability (S) over time in women naming one vs. more than one person for EC, PS, and HCP EC S (%) PS S (%) HCP S (%) Total (n=113) 82 (73) 86 (76) 99 (88) One person named (n=84) 86 (81) 76 (91) 79 (94) More than one person named (n=29) 14 (48) 10 (35) 20 (69) p-value 0.001 < 0.001 0.001 No significant financial relationships to disclose.