Perceptions of Specialized Inpatient Palliative Care: A Population-Based Survey in Japan

Abstract This study aimed to clarify and compare the awareness and perceptions of the specialized inpatient palliative care service. A cross-sectional questionnaire survey was performed on the general population selected by stratified two-stage random sampling ( n = 2,548) and bereaved families who actually received specialized inpatient palliative care at 12 palliative care units (PCUs) in Japan ( n = 513). The respondents reported their awareness and perceptions of PCUs. Thirty-eight percent of the general population answered that they had “considerable” or “moderate” knowledge of PCUs, but 24% answered that they had “no” knowledge. Bereaved families who received PCU care (PCU-bereaved families) were likely to have better perceptions of PCUs than the general population: “alleviates pain” (68% of the general population and 87% of PCU-bereaved families agreed), “provides care for families” (67% and 86%, respectively), and “provides compassionate care” (67% and 87%, respectively). Both groups, however, expressed concerns about PCUs: “a place where people only wait to die” (30% and 40%, respectively) and “shortens the patient's life” (8% and 17%, respectively). These perceptions were associated with overall satisfaction with received care, and differed among the 12 PCUs. In conclusion, public awareness of PCUs was insufficient in Japan. Although PCU-bereaved families were generally likely to have better perceptions of PCUs than the general population, both groups shared concerns that a PCU was a place where people only wait to die. To facilitate appropriate use of specialized palliative care services, more efforts to inform the general population about the actual palliative care system are needed. In addition, the role of PCUs might be reconsidered in terms of the continuum of cancer care.