It’s not a scientific number it is just a feeling”: populating a multi-dimensional end-of-life decision framework using deliberative methods

Joanna Coast, Cara Bailey, Alastair Canaway, Philip Kinghorn

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Abstract

The capability approach is potentially valuable for economic evaluation at the end of life because of its conceptualisation 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’, 7 hospice volunteers); budget pie tasks were completed to generate weights. Constant comparison was used to analyse 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 (versus 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.

Original languageEnglish
Pages (from-to)1033-1049
JournalHealth Economics
Volume30
Issue number5
Early online date1 Mar 2021
DOIs
Publication statusE-pub ahead of print - 1 Mar 2021

Keywords

  • capabilities
  • deaths
  • externalities
  • health
  • normative criteria

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