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. 2021 May;30(5):1033-1049.
doi: 10.1002/hec.4239. Epub 2021 Mar 1.

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

Joanna Coast  1 , Cara Bailey  2 , Alastair Canaway  3 , Philip Kinghorn  4
Affiliations

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

Joanna Coast et al. Health Econ. 2021 May.

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.

Keywords: capabilities; deaths; externalities; health; normative criteria.

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Conflict of interest statement

Joanna Coast is one of the developers of the ICECAP suite of capability wellbeing measures.

Figures

FIGURE 1
FIGURE 1
An integrated framework for decision making at the end of life as a person moves toward death: the period prior to entry represents increasing functional decline; “Entry” refers to the point at which end of life care becomes appropriate for the person, varying in time between individuals and causes of death; the light area represents the focus on health gain (or generic capabilities), the dark area the focus on a good death. The darkest area reflects the period of active dying, and the dark but fading (left to right) triangle, a period of bereavement of reducing intensity
FIGURE 2
FIGURE 2
Task A—Taking account of impacts to family and friends
FIGURE 3
FIGURE 3
Task B—Taking account of “a good death” at 12 months before death
FIGURE 4
FIGURE 4
Task B —all included trajectories
FIGURE 5
FIGURE 5
An integrated framework for end of life, populated with relevant weights based on deliberative data collection and a stylized entry to end of life care at 12 months prior to death. The numbers between the light and dark sections represent the relative weights given to health gain versus a good death, while the numbers attached to the ICECAP‐SCM (for those at the end of life) and ICECAP‐CPM (for close persons) represent the approximate relative weights given to the person at the end of life and their families and friends
See this image and copyright information in PMC

References

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