ABSTRACT
Background: Relieving the total pain of patients with cancer and supporting their well-being throughout their lives are important roles of palliative and supportive care. Poverty may inhibit patients from receiving dignified end-of-life care; however, using social welfare services may reduce its impact on patients' end-of-life experiences. Nevertheless, no study has investigated which social welfare service could lead to favorable end-of-life experiences for patients living in poverty. Objective: This study aimed to describe the characteristics of users of palliative care among low-income patients and examine the difference in survival time among patients with cancer on social welfare services in a single center in Kyoto, Japan. Design: We conducted a retrospective cohort study. Setting/Subjects: We included 220 patients using Public Assistance (PA: aid minimum income and medical/long-term care), Free/Low-Cost Medical Care (FLCMC: aid only medical care), and nonwelfare-users who newly received palliative care in 2021. Measurements: We calculated patients' survival time from the initiation of palliative care to death. In addition, we identified patients who experienced home death. Results: Compared with nonusers, FLCMC beneficiaries had shorter survival times (adjusted hazard ratio [aHR] 2.05, 95% confidence interval [CI] 0.80-5.22). No difference was observed among PA beneficiaries (aHR 1.19, 95% CI 0.49-2.87). No home death was observed among welfare service recipients. Conclusions: Social welfare benefits only for medical expenses may not sufficiently support dignified end-of-life care for low-income patients. Further studies are required to examine the robustness of this study considering various bio-psycho-social factors that can influence these findings, to support low-income patients with cancer on social welfare services.
ABSTRACT
COVID-19 pandemic has impacted the families of patients in Palliative Care Units because of the visitor restrictions which were introduced to reduce the risk of infection. This study investigates how the bereaved families of the patients who died in end-of-life care during the pandemic evaluate the visitor restrictions and how the lack of direct communication with the patient affected them. We conducted a quantitative survey using an anonymous self-administered questionnaire. Participants were the bereaved families of patients who died in a Palliative Care Unit from April 2020 to March 2021. Their perspectives on the negative impact of COVID-19 pandemic on visitations, visitor restrictions, the quality of medical care in the month before the death of the patient, and online visitations were recorded in the survey. The results show that most participants experienced a negative impact on visitations. However, most respondents felt that the restrictions were unavoidable. According to visitor permissions in patients' last days, bereaved families were satisfied with the medical care provided for the patient and the amount of time spent with the patient in his/her last days. The importance of direct meetings during the last days of the patients' life for their family members was presented. We suggest further research to find measures which enable visitation in palliative care units, as caregiving from family and friends and maintaining COVID safety regulations are equally significant in end-of-life care.
