Research Article: 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

Date Published: February 21, 2018

Publisher: Public Library of Science

Author(s): Philip Kinghorn, Joanna Coast, Fiona Harris.

http://doi.org/10.1371/journal.pone.0193181

Abstract

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.

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.

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.

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.

Partial Text

There has been increasing interest since the early 2000s in using Amartya Sen’s capability approach [1, 2] as a framework within which to evaluate health and social care [3, 4]. Much of the motivation for adopting Sen’s framework has been to capture broader (non-health) outcomes. Indeed, in the UK, the National Institute for Health and Care Excellence (NICE) has recently recommended the use of several capability based instruments, including the ICECAP-A, for the assessment of well-being in the general adult population, within its guidelines for the evaluation of social care [5]. However, Sen’s capability approach is not a fully formulated theory of social justice [6] from which measures can be generated directly. Robeyns, for example, has identified three theoretical specifications which can be thought of as decision nodes, determining the direction taken by those operationalising the capability approach: the choice between functionings and capabilities, the selection of relevant capabilities and the weighting of different capabilities (see section I in [7]). Each specification has been the subject of debate, but the most intense debate has concerned the selection of relevant capabilities [6–11].

Semi-structured interviews were conducted with academic stakeholders with views relevant to the topic of economic evaluation and end of life care. Ethical approval was obtained from the Science, Technology, Engineering and Mathematics Ethical Review Committee at the University of Birmingham [ERN_11–1293].

Twenty interviews were conducted from 33 invited individuals (recruitment rate 61%) with: six health economists (HE), two philosophers/ethicists (PE), three health psychologists (HP), six nursing/allied health professionals (NA), and three physicians (DR). Participants are identified by the relevant suffix (as in brackets above) and a number, representing the order in which the interviews were conducted. Table 1 provides a summary of the academic discipline and any relevant clinical experience of those participating in the interviews.

This paper provides a participatory examination of a list of capabilities generated to examine the opportunities that people have for a good death. Following the work of Robeyns [10], the research provided the opportunity for experts from a number of disciplines to suggest important capabilities for those at the end of life and then to comment on an existing list; the ICECAP-SCM was scrutinised in terms of its feasibility (or generality) and scope (whether the list of capabilities is exhaustive). This is the first time such an approach has been used to consider capabilities at the end of life, and one of the first empirical explorations of the use of democratic principles in exploring lists of capabilities. The focus that stakeholders had on patient-centred care justifies the grounding of the measure in a capabilities space (for the same reasons that Entwistle [27] has presented the merits of a capabilities approach to promote patient-centred care). The research also indicated that the experts were broadly in agreement with the capability list, suggesting that it could be taken forward for use in policy evaluation. The broad concepts covered by each of the seven capabilities allow for heterogeneity in terms of personal priorities aligning with the focus on patient-centred care whilst providing a measure that can collect data at the level at which it can be used by policy and decision-makers.

Overall the ICECAP-SCM measure was deemed to be feasible and it appears to be exhaustive in terms of its inclusion of relevant capabilities/concepts. There was some debate around the terminology used; given that terminology was informed by in-depth qualitative work with those at the end of life, this issue reveals a possible conflict in terms of whose views should be given the most weight.

 

Source:

http://doi.org/10.1371/journal.pone.0193181

 

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