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“It is not a scientific number it is just a feeling”: Populating a multi‐dimensional end‐of‐life decision framework using deliberative methods

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  • Joanna Coast
  • Cara Bailey
  • Alastair Canaway
  • Philip Kinghorn

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.

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  • Joanna Coast & Cara Bailey & Alastair Canaway & Philip Kinghorn, 2021. "“It is not a scientific number it is just a feeling”: Populating a multi‐dimensional end‐of‐life decision framework using deliberative methods," Health Economics, John Wiley & Sons, Ltd., vol. 30(5), pages 1033-1049, May.
  • Handle: RePEc:wly:hlthec:v:30:y:2021:i:5:p:1033-1049
    DOI: 10.1002/hec.4239
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    References listed on IDEAS

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    2. Amartya Sen, 2005. "Human Rights and Capabilities," Journal of Human Development and Capabilities, Taylor & Francis Journals, vol. 6(2), pages 151-166.
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