Where are the values in evaluating palliative care? Learning from community-based palliative care provision.

Background: The World Health Organization Astana Declaration of 2018 sees primary healthcare as key to universal health coverage and gives further support to the goal of building sustainable models of community palliative care. Yet evaluating the benefits of such models continues to pose methodological and conceptual challenges. Objective: To explore evaluation issues associated with a community-based palliative care approach in Kerala, India. Design: An illuminative case study using a rapid evaluation methodology. Methodology: Qualitative interviews, documentary analysis and observations of home care and community organising. Results: We appraise a community palliative care programme in Kerala, India, using three linked 'canvases' of enquiry: (1) 'complex' multi-factorial community-based interventions and implications for evaluation; (2) 'axiological' orientations that foreground values in any evaluation process and (3) the status of evaluative evidence in postcolonial contexts. Three values underpinning the care process were significant: heterogeneity, voice and decentralisation. We identify 'objects of interest' related to first-, second- and third-order outcomes: (1) individuals and organisations; (2) unintended targets outside the core domain and (3) indirect, distal effects within and outside the domain. Conclusion: We show how evaluation of palliative care in complex community circumstances can be successfully accomplished when attending to the significance of community care values. Plain language summary: Where are the values in evaluating palliative care? Learning from community-based palliative care provision The evaluation of any intervention or service will inevitably involve a series of decisions on what we measure, what criteria we use to judge whether the intervention has been successful (or not), what type of data we actually collect and what methods we use to do this. When evaluating a range of palliative care interventions, we suggest that these decisions have often been taken in a concealed way and tend to favour relatively narrow quantitative measures linked to end outcomes. Our paper reports on the evaluation of a community-based palliative care intervention on Kerala, India. In it, we suggest that such complex work requires a broader approach to evaluation that: makes the values being used to assess success explicit; draws on a range of data types; is interested in delivery processes; and places the voices of participants at the heart of the assessment. The paper concludes with some broader observations on how these principles might be applied more widely within palliative care. [ABSTRACT FROM AUTHOR]