Assessing Patient Readiness to Engage in End-of-life Discussions: Development and Pilot Testing of the End-of-Life Readiness Assessment (ERA) Survey (GP719)

Abstract

•Identify and explain specific factors associated with patient readiness that should be considered when preparing to engage in an end-of-life discussion.•Report on clinician perceptions of patient readiness in light of using a tool to assess readiness. An emerging theoretical framework on the relationship between sensitive end-of-life (EOL) discussions and patient hope points to the mediating role that patient readiness may play. Additional research has also found that among some patients, engaging in and EOL conversation before they are ready may actually cause harm. Presently, health professionals do not have a way to measure patient readiness to engage in EOL discussions. The purpose of this study was to develop a survey assessment tool to measure patient readiness to engage in an EOL discussion. The 16-item survey was developed and pilot tested among 168 patients attending their regularly scheduled, outpatient oncology appointments. On average, most participants identified as Caucasian (74%), female (61%), partnered (58%), and having a cancer diagnosis (64%). Analyses revealed that older age (60+, p=0.008), Caucasian race (p=0.04), and self-reported greater knowledge of community/supportive services (p=0.049) was significantly associated with greater readiness to engage in an EOL discussion. Additionally, a higher score on the Advance Care Planning Engagement Survey was significantly associated with greater readiness (p<0.001). Eleven clinicians participated by completing a brief questionnaire before and after viewing their patient's responses to the ERA survey. Most indicated that they had not had a prior EOL discussion with the patient (83.3%) and that they felt the patient was not ready (44.7%) to engage in one. However, an important subset reported feeling “confused” (3.1%), “concerned” (1.4%), and “surprised” (13.0%) by patient responses. Similarly, some felt patient responses were “uniformed” (6.1%) or “unrealistic” (9.9%). Findings reveal patient groups that might be more appropriate targets for interventions, education, and resources related to EOL care and subsequent discussions. Importantly, these results also highlight the opportunity for interprofessionals in outpatient health settings to assess patient readiness and “prime the pump” for discussions based on actual patient readiness and not assumptions.