Mapping end-of-life care in India: a scoping review to identify gaps in policy, practice, and psychosocial support

Background

Little about access to palliative and end-of-life care in India is known.

Aim

To map various facets of end-of-life care in India, from perceptions of stakeholders to capacity and quality of care, training, and education, and to identify the current gaps in end-of-life care delivery.

Design

A scoping literature review was conducted, with the protocol registered on the Open Science Framework, on November 29, 2023 (https://osf.io/twc9j).

Data sources

Between January 1, 1990, and May 31, 2024, an electronic literature search was conducted using the MEDLINE, SCOPUS, CINAHL, EMBASE, and PSYCHINFO databases, as well as citations and grey literature.

Results

The availability and accessibility of end-of-life care are limited to a few geographical regions, primarily urban areas. While some states have community-based programs, most end-of-life care practices are concentrated in hospitals, especially intensive care units. Patients frequently lack access to essential medications, such as morphine, as well as appropriately trained medical professionals and adequate infrastructure. Financial difficulties, limited knowledge, social stigma toward the terminally ill and dying, and the psychological and physical burdens of care add to the challenges faced by stakeholders.

Conclusion

The availability and accessibility of end-of-life care in India are fragmented. A comprehensive strategy that includes policy and legislative reforms, education, and expanded palliative services is crucial for improving the quality of end-of-life care across the country.