Perceptions of specialized inpatient palliative care: a population-based survey in Japan.

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.

Knowledge and beliefs about end-of-life care and the effects of specialized palliative care: a population-based survey in Japan.

To clarify the knowledge and beliefs of the Japanese general population related to legal options, pain medications, communication with physicians, and hydration/nutrition in end-of-life care, and to explore the associations between end-of-life care they had experienced and these beliefs, a questionnaire survey was conducted on two target populations: 5000 general population subjects and 866 bereaved family members of cancer patents who died in 12 palliative care units in Japan. The respondents were requested to report the legal knowledge about end-of-life options, pain-related beliefs, communication-related beliefs, and hydration/nutrition-related beliefs, and their experiences with end-of-life care. A total of 3061 responses were analyzed (effective response rate, 54%). The respondents were classified into six groups: no bereavement experience (n = 949), those who had lost family members within the past 10 years from noncancer diseases at institutions (n = 673), those who lost family members from noncancer disease at home (n = 264), those who lost family members from cancer at institutions other than palliative care units (n = 525), those who lost family members from cancer at home (n = 86), and those who lost family members from cancer at palliative care units (n = 548). Across groups, 32-45% and 50-63% of the respondents stated that treatment withdrawal and double effect act were legal, respectively. Between 34% and 44% believed that cancer pain is not sufficiently relieved, 27-38% believed that opioids shorten life, and 24-33% believed that opioids cause addiction. Communication-related beliefs potentially resulting in barriers to satisfactory end-of-life discussion were identified in 31-40% ("physicians are generally poor at communicating bad news") and in 14-25% ("physicians are not comfortable discussing death"). The bereaved family members of the patients who died in palliative care units were significantly more likely than the other groups to believe that cancer pain is sufficiently relieved, and significantly less likely to believe that opioids shorten life, that opioids cause addiction, that physicians are generally poor at communicating bad news, and that physicians are uncomfortable discussing death. Between 33% and 50% of the respondents, including families from palliative care units, believed "artificial hydration should be continued as the minimum standard until death," while 15-31% agreed that "artificial hydration relieves patient symptoms." A significant proportion of the Japanese general population has beliefs about legal options, pain medications, and communication with physicians that potentially result in barriers to quality end-of-life care. As their experiences in specialized palliative care significantly influenced their belief, systematic efforts to spread quality palliative care activity are of value to lessen these barriers and achieve quality end-of-life care.