Abstract
The capability approach is potentially valuable for economic evaluation at the end of life because of its conceptualization of wellbeing as freedom and the potential for capturing outcomes for those at end of life and those close to persons at the end of life. For decision making, however, this information needs to be integrated into current evaluation paradigms. This research explored weights for an integrated economic evaluation framework using a deliberative approach. Twelve focus groups were held (38 members of the public, 29 “policy makers,” seven hospice volunteers); budget pie tasks were completed to generate weights. Constant comparison was used to analyze qualitative data, exploring principles behind individuals' weightings. Average weights elicited from members of the general population and policy makers for the importance that should be given to close persons (vs. patients) were very similar, at around 30%. A “sliding scale” of weights between health gain and the capability for a good death resulted from the policy maker and volunteer groups, with increasing weight given to the capability for a good death as the trajectory got closer to death. These weights can be used in developing a more comprehensive framework for economic evaluation at end of life.
Highlights
Evaluating the cost‐effectiveness of interventions at the end of life poses problems for health economists
The context explored, focused on the possibilities for integrating the capability for a good death into the health‐gain focused decision making framework used by National Institute for Health and Care Excellence (NICE) in the UK
The almost universal support within this study for trading between health gain and a good death, and trading between benefits to the recipient of end of life care and close persons, suggests that economic evaluation in this area should be more aligned with the policy objectives advocated within strategic approaches to end of life care (National Institute for Health and Care Excellence, 2015; National Palliative and End of Life Care Partnership, 2015; NHS England, 2014) and less aligned with standard NICE methods guidance (National Institute for Health and Care Excellence, 2013)
Summary
Evaluating the cost‐effectiveness of interventions at the end of life poses problems for health economists. There is a conflict between the purposes that are advocated for end of life care, and the approach to assessing outcomes for cost‐effectiveness analysis This conflict exists among the views of experts, some of whom argue for the standard approach of focusing on health gain, but many of whom suggest it should not be the sole focus of analysis (Kinghorn & Coast, 2019). In the end of life setting, for example, this may mean the provision of opportunities for involvement in decision making, or the ability to spend time with friends and family, even if the person at the end of life does not choose to take up these freedoms Such an integrated capability‐based framework is inevitably more complex than the standard “health maximization” approach to economic evaluation. This paper outlines the conduct of such a deliberative exercise and the findings obtained in relation to these weights for the integrated capability framework for end of life care
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