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The economic evaluation of end of life care

Final Report Summary - ECONENDLIFE (The economic evaluation of end of life care)

The application of economic evaluation to end of life care is challenging and poses very real methodological difficulties. There are issues around how to: define the ‘end of life’ period; measure the outcome of end of life care; quantitatively value end of life care; value the benefits of good end of life care to families; combine across measures; and choose decision-rules for end of life care. The overall aim of this research programme was to address each of these methodological issues and so advance the state-of-the-art to a point where economic evaluation of end of life care is feasible. This was achieved by exploiting interdisciplinary methods drawing upon the human development literature, economics, health services research and palliative care, and by building on the application of Sen’s capability approach to measurement within economic evaluation to develop a new and comprehensive framework for the economic evaluation of end of life care.

The key focus of this new framework is to incorporate the opportunity for a good death as an element in the evaluative space for economic evaluation of end of life interventions, alongside measures focusing on the capability for a good life (or even the more standard Quality-Adjusted Life-Year). Two measures are proposed for measuring the opportunity for a good death, one focusing on the individual at the end of life and the other on family and friends of this individual (‘close persons’).

The initial focus of the research was on determining the support for such a framework amongst key stakeholders, as well as exploring the appropriate time period for a new framework and the measures that might be included in it. Stakeholder support for an alternative framework was strong, although there was a small number of informants who felt that the existing framework should suffice, particularly amongst health economists. The challenges of developing a new framework were acknowledged by stakeholders.

The first of the measures within the framework (focusing on the individual at end of life) was finalised during the early stages of EconEndLife. The ICECAP-SCM has seven attributes: Choice, Love and affection, Physical suffering, Emotional suffering, Dignity, Being supported and Preparation. Initial assessments of the validity of the ICECAP-Supportive Care Measure (ICECAP-SCM) were generated using thinkaloud methods and ongoing assessments have been facilitated by incorporating it in a number of ongoing studies. Values for this measure were generated from the general public using a combination of discrete choice experiment and best-worst scaling, and the feasibility of obtaining values directly from those at the end of life was also tested. A novel experimental design was used that will, down the line, enable direct comparison of the more complex information obtained from the general public, with a smaller and simpler set of information that can be obtained from those at end of life.

The second measure within the framework was developed during EconEndLife using in-depth interviews with those either currently close to a person at the end of life or recently bereaved. The findings suggested that the measure, the ICECAP-Close Person Measure (ICECAP-CPM) should have six attributes, focusing on Communication, Practical support, Privacy and space, Emotional support, Preparing and coping, and Emotional distress. Hierarchical mapping was also used within these interviews to generate information about the size of the social network of the individual at end of life, and thus from how many people such information should be generated. Deliberative methods were used to generate a preliminary value set for the measure.

An important element of the framework is to consider both how the different elements should be combined and how the framework should be used in policy making. Information about both these issues was generated through discussion with members of the general public and policy makers, in focus groups and in-depth interviews. Policy makers and members of the public gave weight to both those at the end of life and close persons, suggesting that both ICECAP-SCM and ICECAP-CPM should be included in the final evaluative framework, although in differing proportions. Further, policy makers were asked to allocate relative weights to health gain and end of life outcomes in the final year of life, and there was a clear decline in the weight given to health gain and an increase in the weight given to end of life outcomes as the trajectory towards death progressed.