Assessing the capability to experience a 'good death': A qualitative study to directly elicit expert views on a new supportive care measure grounded in Sen's capability approach

Background: Sen’s capability approach is underspecified; one decision left to those operationalising the approach is how to identify sets of relevant and important capabilities. Sen has suggested that lists be developed for specific policy or research objectives through a process of public reasoning and discussion. Robeyns offers further guidance in support of Sen’s position, suggesting that lists should be explicit, discussed and defended; methods be openly scrutinised; lists be considered both in terms of what is ideal and what is practical (‘generality’); and that lists be exhaustive. Here, the principles suggested by Robeyns are operationalised to facilitate external scrutiny of a list of capabilities identified for use in the evaluation of supportive end of life care. Methods: This work started with an existing list of seven capabilities (the ICECAP-SCM), identified as being necessary for a person to experience a good death. Semi-structured qualitative interviews were conducted with 20 experts in economics, psychology, ethics and palliative care, to facilitate external scrutiny of the developed list. Interviews were recorded, transcribed and analysed using constant comparison. Results: The seven capabilities were found to encompass concepts identified as important by expert stakeholders (to be exhaustive) and the measure was considered feasible for use with patients receiving care at the end of life. Conclusion: The rigorous development of lists of capabilities using both initial participatory approaches with affected population groups, and subsequent assessment by experts, strengthens their democratic basis and may encourage their use in policy contexts.