Challenges and suffering of people with advanced illness in rural Nepal: a mixed method multiple case study in four municipalities

Nepal is experiencing increasing need for palliative care through the rising prevalence of non-communicable disease and an aging population. Most people live in rural areas where access to healthcare is limited. This study explores experiences of suffering and health seeking behaviour amongst people with palliative care needs (PWPCN) and their unpaid family caregivers in rural Nepal. A constructivist multiple case study design was employed across four rural municipalities (cases) in two districts. Cases included communities of varied ethnicity and human development indices served by a community hospital and village health posts. A house-to-house survey using the Supportive and Palliative Care Indicators Tool for Low Income Settings (SPICT-LIS) identified PWPCN. Following completion of a structured questionnaire, a purposive sample of PWPCN was constructed (unit of analysis). They, their carers and key informants completed semi structured interviews. Quantitative data were analysed using descriptive statistics and qualitative data were analysed thematically both within and across case. Among 587 households surveyed, 58 PWPCN were identified. 20 units of analysis were formed with interviews from 17 PWPCN and 17 caregivers and 16 key informants. None of the PWPCN had access to palliative care services. Three themes emerged: (1) Everyone suffers: reflecting high levels of physical, emotional, spiritual and social pain. (2) Paying for healthcare: high out-of-pocket expenditure, debt, and financial vulnerability mitigated partially for some by health insurance. (3) Decision-making - no right answer: exposed difficulties choosing between limited local services and distant, costly tertiary care. Decisions were affected by distance to and location of health facility (particularly those offering health insurance), transportation, cost/family resources, and a strong belief that “better care is found in the city.” Bypassing nearby facilities for distant tertiary hospitals was common. High level of suffering and unmet need led to a feeling of lack of control. Older people particularly did not access health care because of cost and were resigned to their fate. PWPCN in rural Nepal endure substantial suffering through unmet holistic needs and limited access to appropriate care. Financial hardship, geographical barriers, and perceived low-quality local services drive people toward distant facilities thus increasing costs.