Hospice and palliative care development in India: a multi-method review of services and experiences

Palliative care has been developing in India for the last twenty years, but there is a dearth of evidence about provision on which to base national policy and practice. The aim of this study was to assess the current state of palliative care in India, mapping the existence of services state by state and documenting the perspectives and experiences of those involved. A multi-method review was utilised which included: synthesis of evidence from published and grey literature; ethnographic field visits; qualitative interviews with 87 individuals from 12 states; collation of existing public health data. The review identified 138 hospice and palliative care services in 16 states. These are usually concentrated in large cities, with the exception of Kerala, where they are much more widespread. Non-government organisations, public and private hospitals and hospices are the predominant sources of provision. We were unable to identify palliative care services in 19 states/ union territories. Development of services is uneven, with greater provision evident in the south than the north but for the majority of states coverage is poor. Barriers to the development of palliative care include: poverty; population density; geographic distances; opioid availability; workforce development and limited national palliative care policy. Successful models exist for the development of affordable, sustainable community-based palliative care services. These have arisen from adapting western models of hospice and palliative care for implementation in the India cultural context. Further work is required to ensure that the growing interest in hospice and palliative care in India is utilised to increase the momentum of progress