Meaning of Hospice Care: Perceptions of Patients and Families

Background: About half of hospice-eligible adults die without hospice each year. Misconceptions about hospice are frequently identified as barriers to utilization, but hospice perceptions are not well documented. Objectives and Setting/Subjects: To examine perceptions of hospice (initial and post-enrollment) among 90 U.S. patients/families actively enrolled in a large, metropolitan hospice in Texas, and to identify factors associated with participant perceptions. Design and Measurement: Concurrent mixed methods and cross-sectional design collecting data via research questionnaire with Likert scales and open-ended questions. Wilcoxon signed-rank test determined differences between recall of initial hospice perceptions at time of referral and perceptions while actively receiving services; Fisher's exact and Kruskal-Wallis tests were used to examine bivariate relationships between perceptions of hospice and satisfaction with physician communication and demographic variables. Qualitative statements were analyzed using an inductive, content analysis approach. Results: There was a significant difference between participants' perceptions of hospice recalled from initial conversations compared with current perceptions following hospice enrollment (z = -6.44, P < .01). Initial perceptions of hospice were significantly related to satisfaction with physician communication (P = .011) and diagnosis (P = .019). Qualitative themes range from negative (ie hospice = death) to positive (ie comfort, support, loving staff) with 65.6% of participants demonstrating positive increases in understanding. Conclusion: Participants' perceptions of hospice were positively associated with satisfaction with physician communication prior to hospice enrollment, and potentially impacted by the experience of care itself. During hospice discussions, clinicians should elicit patient and family perceptions in addition to providing descriptions of eligibility and services.