Assessing Awareness and Palliative Care Needs in Rural Haryana, North India: A Community-Based Study

Background Community-based palliative care offers a solution to ensure continuity of treatment for patients with life illnesses or life-threatening conditions. Hence, to advocate for community-based palliative care services, it is imperative to generate evidence for palliative care needs in the community. This study aimed to assess the need for and awareness of palliative care in rural Haryana, North India. Methods This was a community-based cross-sectional study conducted in six villages of Haryana. A trained investigator conducted house-to-house visits to screen the population for those who require palliative care. The screening was done using three questions, i.e., (1) the presence of a bedridden patient, (2) a person in need of help in activities of daily living, or (3) not able to go to work due to any physical chronic illness. If the answer to any of these questions was positive, a list of patients was prepared, and a community physician trained in palliative care contacted them. Patients and their caregivers were evaluated for their awareness of palliative care through the following question: 'Have you heard about the term palliative care/end-of-life care/home care for bedridden people/community-based care/supportive care?'. Data collection was done using Epicollect5 mobile application, and a descriptive analysis was conducted using the R software. Results A total of 1,983 households were visited, and 152 households were excluded as they were found locked during two separate visits. Therefore, a total of 1,831 households, comprising 9,727 individuals, were screened. The need for palliative care was found to be 3.7 per 1,000 population (95% CI: 2.5 - 4.9) and 18.6 per 1000 households (12.4 - 24.8). The most common diseases requiring palliative care were stroke with a focal neurological deficit (27.8%) and cancer (22.2%). One patient with cancer was receiving palliative care. None of the patients or their caregivers was aware of the terms palliative care/end-of-life care/home care for bedridden people/community-based care/supportive care. Conclusion The need for palliative care in rural Haryana (North India) was found to be 3.7 per 1000 population. Neither the patients nor their caregivers had an awareness of palliative care.