Patient and family perceptions of palliative care units in Japan

ABSTRACT

<b>Objectives</b>: The purpose of this study was to examine common experiences among patients and primary family caregivers as they transition to hospice and palliative care units (PCU), with focus on the perspectives of cancer patients and their primary family caregivers. <b>Methods</b>: We conducted semi-structured interviews using a questionnaire with a purposive sample of 5 terminal cancer patients and 9 primary family members of patients who were admitted to the PCU from November 2005 to December 2006. The questionnaires consisted of questions about the PCU, and semi-structured interviews inquired about perceptions of the PCU. We analyzed interview contents from 14 participants (mean age ±SD; patients, 77.2±4.0 years; family members, 53.7±14.6) by summarizing content analysis. The Aiwa Hospital Institutional Review Board approved the present study. <b>Results</b>: Content analysis identified common perceptions about the PCU. Perceptions prior to the transition were summarized into 2 categories for patients and 5 categories for families, including general impressions of the PCU, PCU environment and equipment, treatment, cost, and other patients. After being admitted to the PCU, perceptions were summarized into 3 categories for patients and 7 categories for families, including general impressions of the PCU, PCU environment and equipment, treatment, staff, cost, other patients, and religion. <b>Conclusion</b>: Identification of these themes from patient and family perspectives suggested that patients transitioned to hospice with no particular impressions about the PCU, while families perceived the PCU as both “a place to relax” and “a place where one only waits to die” before entering the PCU. These results may aid in designing interventions that consider patient and family needs and desires during the transition to the PCU.