Palliative care management committees: a model of collaborative governance for primary health care.

Abstract

The community-based primary palliative care programme in Kerala, India, has received international acclaim. Programme functioning is supported through Palliative Care Management Committees (PMCs) at the local government (LG) level. To study the functioning of the PMCs within the decentralised governance space to identify achievements, gaps and notable innovations. This qualitative study included seven key informant interviews (KIIs), 28 in-depth interviews and a review of relevant publicly available policies and documents. Major themes were recognised from the KII transcripts. Codes emerging from the document review and in-depth interview transcripts were mapped into the identified thematic areas. Successful PMCs raised resources like money, human resource, equipment, had good skilled care options for symptom relief and facilitated reduced out-of-pocket expenditure by providing home care and free medicines, and improved access to interventions that addressed the social determinants of suffering like poverty. PMCs had varying managerial and technical capacities. In some LGs, the programme was weak and mostly limited to the supply of medicines, basic aids and appliances to patients' homes. Despite varied implementation patterns, PMCs in Kerala are examples of state-supported, community-owned care initiatives, that can potentially address medical and social determinants of suffering.