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

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.

Methodological challenges and potential solutions for economic evaluations of palliative and end-of-life care: A systematic review

“…The largest group of first authors (41%) was affiliated with institutions in the UK, 15,16,20,22,26,34 –61 followed by the USA (13%). 62 –71 Study types and their focus varied widely, including systematic reviews and meta-analyses, 17,26,41,52 –54,72,73 qualitative studies 35,36,40,44,49,50,51,58,74 and studies describing, for example, the development and/or concept of an outcome measure, testing its validity. The overall quality of the studies included was high and none was excluded based on low quality appraisal scores.…”

“…17,20,24–26,52,53,62,64,73,76,90,94–96 Other methodological challenges identified related to ambiguous and inaccurate patient identification, 15,45,67–70,76,85,94,96 –99 restricted generalisability due to poor geographic transferability of evidence, 16,40,42,43,52,53,60,71,85,96,98 difficulties defining comparators, 15,97 consequences of applied time horizon, 65 challenged outcome measurement 35,45,57,89,97,100 and challenges regarding a reliable preference-based outcome valuation. 37,45,58,59,66,72,84,85,87,101 –105…”

“…Authors' opinions, study outcomes and national costing guidelines are inconclusive on the appropriateness of assigning higher weight to end-of-life health gains. 63,102,103 While new approaches have been introduced and more methodological studies conducted, 58,59,66 overall, empirical support is limited and further research is needed in this field. 101,104 Furthermore, individuals may value aspects of care in a way that contradicts the underlying quality paradigm.…”

A think-aloud study of the feasibility of patients with end-stage organ failure completing the ICECAP-SCM

“…Health, generic capability, and capabilities associated with end-of-life decision making take on varying degrees of relative importance as patients move through the end-of-life course. 50 Using all three measures in an integrated framework may provide a more accurate approach for evaluating the impact of palliative care interventions in end-of-life research for patients on the organ failure trajectory.…”