Background

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].

Whilst supporting a democratic process for making these choices, Sen gives little indication of what this would entail, other than “public reasoning and discussion” (see page 77 in [11]), and there is little understanding more generally of what characterises a sufficiently democratic process [8]. Robeyns suggests a detailed procedural criteria for the selection of capabilities [7] involving four steps. First, the list should be explicit, discussed and defended. The methods used to generate the list should be clarified and scrutinized [7]. The list should be explored and discussed in terms of what is ideal and what is pragmatic, referred to by Robeyns as ‘generality’ (see “Quality criteria for selecting capabilities in [10]). Finally, the list should be exhaustive, but equally there should be no scope for reduction. Robeyns does not stipulate who should be involved at each stage.

Whilst the capabilities included in some measures of self-reported wellbeing (developed in the contexts of health, disability and social care) have been derived from Nussbaum’s list of central capabilities [12, 13] (Nussbaum’s list being the best known example of an expert led approach), they have still tended to include participatory steps, in terms of involving potential or actual service users in refining the questions. Other measures, however, have relied on in-depth qualitative work with actual or potential service users from the outset to identify those capabilities of importance [14–16] but have not been subject to the sort of expert scrutiny recommended by Robeyns.

Our contribution here relates to the examination by experts of an existing list of seven capabilities focused on the opportunity for a good death. Care at the end of life is a policy priority in most high income countries, with concerns around the increasing medicalization of death [17], commonly within a hospital setting [18, 19], with insufficient focus on care, compassion and communication [20]. Care at the end of life also represents one context in which the limitations of common health economic frameworks such as cost-utility analysis are particularly stark. The opportunity for a good death has recently been advocated as an important outcome in evaluating end of life care [21]. The list of capabilities examined was developed through in-depth qualitative work with those at various points on the end of life trajectory [22]. It has been interpreted in the form of a measure, the ICECAP-SCM (supportive care measure), grounded in Sen’s work on capability.

ICECAP-SCM was developed for use in economic evaluation. Economic evaluation can be defined as “the comparative analysis of alternative courses of action in terms of their costs and consequences” (see page 9 in [23]). In countries with a defined and centralised process for appraising potential healthcare interventions, a one-off decision tends to be made about whether an intervention should be made available within a healthcare system, based (at least in part) upon evidence from economic evaluation. Interventions approved for use in the healthcare system can then be considered as options for the treatment of individual patients, with individual treatment decisions being made on the basis of clinical judgement/guidelines and patient choice. Hence, instruments designed for capturing consequences for inclusion within economic evaluation are not typically used to inform care at the patient level, and indeed their succinct and genetic nature limits their suitability for this purpose.

The ICECAP-SCM was designed to be used alongside existing capability-based measures (such as the ICECAP-A) to capture consequences that are relevant to the specific context of supportive end of life care. Whilst the ICECAP-A collects data on general well-being (in terms of attachment, stability, achievement, enjoyment, and autonomy) [14], ICECAP-SCM can be used to collect supplementary information that is contextually relevant. There was an explicit desire to develop a concise list of capabilities because of both the vulnerable service user group who will complete the measure and the desire to weight the capabilities (a task complicated greatly if the list of capabilities is extensive). The seven capabilities included in the ICECAP-SCM relate to: choice/having a say in decision-making; love and affection/being with people who care; freedom from physical suffering; freedom from emotional suffering; dignity and self-respect; support; and preparation. Weighting provides evidence on the relative desirability of the different capabilities and avoids the need to make (unrealistic) assumptions about the linearity of the response levels for each capability. Weights for the ICECAP-SCM have been elicited through best-worst scaling [24]. There is some evidence as to the feasibility of using ICECAP-SCM with hospice patients [25], but also a need to assess feasibility in patients with distinct dying trajectories as the hospice study referred to here included mainly cancer patients. As results relating to feasibility in hospice patients were published after the interviews reported in sections two and three below, there is no chance that it will have influenced the thinking of the stakeholders that we interviewed.

If the measure is to shape policy and deliver improvements in the quality, efficiency and equity of end of life care then it must be accepted by researchers and decision-makers as feasible (pragmatic), relevant and exhaustive. Hence this paper reports work which sought to elicit the views of palliative care experts, philosophers, psychologists and economists on the list of capabilities included in the ICECAP-SCM, broadly in relation to Robeyns’ criteria of ‘generality’ and ‘exhaustion and non-reduction’. The methods used to generate the list and its content are reported elsewhere [22]. Based upon the reaction, reflections and insight of experts, the conceptual relevance and appropriateness of grounding such an instrument in the space of capability was also assessed.

The qualitative methods used to assess generality, exhaustion and non-reduction, and to give some indication of the appropriateness of the conceptual framework, are outlined in the methods section below. Exhaustion and non-reduction (whether the list truly captures what is important without attributes encompassing overlapping concepts) are reported, in turn, in the results section, followed by discussion of generality (the practical acceptability of the measure and any trade-off here with respect to the ‘ideal’), and then conceptual issues around the capability approach.

Methods

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].

Relevant stakeholders (clinical and non-clinical), currently working in or visiting the UK or Republic of Ireland were identified through: searches of conference programmes; searches of public websites of key research institutions; known contacts of the research team and project advisory group; publicly listed membership of NICE Technology Appraisal Committees; as well as snowball sampling. Stakeholders were sent an invitation letter and information sheet via email; one email reminder was sent.

Semi-structured one-to-one interviews were conducted during 2012/3. Interviews lasted 45–80 minutes. Participants were presented with the list of capabilities that comprises the ICECAP-SCM in the latter part of the interview, after questioning about the purpose and current provision of end of life care and outcomes important for inclusion within economic evaluation and/or to the patient. Interviews were audio recorded and transcribed verbatim.

Interviews were conducted by PK (a health economist with previous qualitative research experience), using a topic guide developed by both authors.

Transcripts were analysed in batches of between three and six, using constant comparison [26]. For analysis, the batches of transcripts were grouped according to the academic discipline of the participant. Transcripts were read and key themes and topics identified and documented. For early interviews, two researchers (PK, JC) independently coded the transcripts, before discussing and comparing the two independent coding matrices. Themes were refined and modified as analysis progressed and descriptive accounts were formed, compared and refined.

Results

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.

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Table 1. Summary of participant professional discipline & experience.

https://doi.org/10.1371/journal.pone.0193181.t001

Of those 13 individuals who were invited to participate but did not participate, a positive response was initially received from two (one clinician and one philosophy), but it was not possible to arrange an interview date due to their workloads. One further invitee (from an independent health policy organisation) responded to inform us that they would be spending time outside of the UK. No response was received from the remaining 10 invitees.

Because participants were asked about the purpose and provision of end of life care and outcomes of importance before being shown the ICECAP-SCM, responses from the first part of the interview are presented as suggestions of what should be included. In this way the adequacy of the final list can be assessed both through considering capabilities that experts initially listed as important and their views on the list actually incorporated within ICECAP-SCM.

Comparing expert views on important concepts with capabilities in the ICECAP-SCM

Table 2 compares the themes identified from expert’s accounts with the attributes from the ICECAP-SCM. Acknowledgement is the only theme identified that does not directly link to an ICECAP-SCM attribute, although without some awareness and acceptance there would be limited capability in terms of some ICECAP-SCM attributes, particularly Preparation and Emotional suffering.

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Table 2. Matching participants’ themes to capabilities listed in ICECAP-SCM.

https://doi.org/10.1371/journal.pone.0193181.t002

Table 3summarises the invited critique by these experts of the capabilities expressed in ICECAP-SCM.

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Table 3. Expert reaction to attributes on ICECAP-SCM.

https://doi.org/10.1371/journal.pone.0193181.t003

Two main themes emerged from this section of the interview: use of the term “suffering” for attributes three and four; and the explicitness of the capabilities in focusing on end of life. Four participants expressed reservations about the term “suffering” (see Table 3).

There was mixed opinion about the explicitness of the instrument’s focus on end of life, with some participants expressing doubt over whether it would be appropriate to phrase attributes more explicitly.

…this is not necessarily about end of life care, it’s about something very broad, but of course they are the domains of palliative care in its broadest sense. (08NA)

Quite a lot of patients have quite a bit of denial, so it’s not right to have a very prescriptive policy where we must make everybody start talking about dying. (20DR)

There’s nothing here measuring awareness or acknowledgement about being at the end of [life] … you might risk distress I suppose (06DR)

I guess one thing it doesn’t do is face …the issue of death. I’m not sure if you’d want it to (18HE)

Discussion

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.

One issue raised by a minority of participants was the terminology of “suffering”. Choice of the term suffering was based upon analysis of qualitative evidence from the public [22]. Sutton and Coast [22] note that at the point of determining wording for the measure, “suffering was easily understood by participants, who related this to experiencing pain, discomfort or fatigue” (p4). There is therefore, potentially, a conflict between the public and the experts here in relation to this terminology. A think-aloud study with patients, clinicians and close persons, conducted in a UK hospice setting, did not reveal concerns about use of the term “suffering” [25], but this should be closely monitored in future work exploring the feasibility and validity of the ICECAP-SCM measure.

A similar approach (seeking expert feedback) has been used in relation to one other capability measure [28], although a less comprehensive group of experts was included in the Keeley et al study. There was greater agreement amongst the experts in this end of life study about the list of capabilities generated than in the Keeley et al study, possibly because end of life is a more tightly defined period in life, where the capabilities of importance to people may be more homogeneous. We are not aware of other studies in which a direct and rigorous effort to obtain feedback on a list of capabilities has been adopted.

There are some limitations to the work. Inevitably, decisions about who to involve in the participatory process were made by the research team [8]. Participants were recruited for their expertise relating to health and social care decision making (particularly resource allocation) and care at the end of life. None had a specific research interest in the capability approach, and so there was a tendency to compare the measure and capabilities to the more generic Quality-Adjusted Life-Year (QALY) or dimensions included within condition-specific palliative care tools as a reference. Nevertheless, it was deemed important to gather evidence from those with an in-depth understanding of the particular context in which the capability list will be used, so this can also be seen as a strength of the study.

An area where further research may be required relates to the issue of agency, and given that experts have highlighted the importance of agency in terms of the patient’s consideration of others, this issue should be given attention as the ICECAP-SCM is piloted with the target population group, in terms of whether they feel that the attributes adequately express their concern for others. It may also be important to assess the capabilities of friends and relations at the end of life [21, 29].

Conclusion

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.

The adoption of evaluative frameworks grounded in Sen’s capability approach represents a significant departure from the dominant healthcare decision making frameworks used in countries such as the UK and Australia. There is potential for capability-based approaches to be accepted in the context of end of life care because of the distinct characteristics of this particular context; just as policy organisations such as NICE in the UK have recently allowed the use of capability measures for the evaluation of social care [5, 30]. The rigorous development of lists of capabilities using both initial participatory approaches with relevant groups, and subsequent assessment of these lists of capabilities by relevant experts, strengthens the democratic basis for these lists, and enhances the likelihood of the approach influencing decision making in practice.

Further evidence on feasibility and validity of the ICECAP-SCM in particular is needed (particularly across varying trajectories towards death and in varying care settings), but there is certainly cause for optimism that the measure can appropriately be used to inform the distribution of scarce health and care resources in the area of supportive end of life care.

Acknowledgments

We would like to thank all of the participants for generously giving their time, as well as for sharing their experience and honest feedback.

We would also like to thank members of the EconEndLife Advisory Group for their valuable suggestions and feedback during the project.