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Measuring and Valuing Outcomes for Care at the End of Life: The Capability Approach

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Abstract

The capability approach is concerned with evaluating interventions in terms of their impact on a person’s well-being assessed as their ability to do and be things in life – their ‘capability’. It is increasingly being adopted to evaluate health and social care interventions in cases where the QALY would provide a partial assessment of outcomes. It is argued here that the case for incorporating broader outcomes is even more compelling in the context of care at the end of life. This chapter advocates a new framework for evaluating end-of-life care. It starts with the normative base of Amartya Sen’s capability approach and is influenced by evidence from the health and psychology literatures, as well as more intuitive ‘human’ experience from pioneers such as Cecily Saunders. It includes elements relating to both a good life and a good death and is unique in incorporating outcomes for persons close to the patient, acknowledging the emotional and physical demands and distress experienced both in the dying stage and through bereavement. This integrated capability-based framework aims to cope with the complexity of outcomes associated with health care, social care and supportive care. The result is a broad and pragmatic solution for evaluation, which can claim conceptual and ethical legitimacy.

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Notes

  1. 1.

    Although a small number of economists see the possibility of re-shaping the QALY as a measure of capability [25, 29], a key concern is that reducing the scope of the capability approach to just health is to essentially undermine one of its key strengths and principles, which is the multi-dimensional assessment of wellbeing.

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Funding Acknowledgements

This work was supported by the European Research Council [261098 ECONENDLIFE].

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Authors and Affiliations

  1. School of Social and Community Medicine, University of Bristol, Bristol, UK

    Joanna Coast

  2. Health Economics Unit, Institute of Applied Health Research, University of Birmingham, Birmingham, UK

    Cara Bailey

  3. Nursing, Institute of Clinical Sciences, University of Birmingham, Birmingham, UK

    Cara Bailey

  4. Warwick Clinical Trials Unit, Warwick Medical School, University of Warwick, Coventry, UK

    Alastair Canaway

  5. Health Economics Unit, Institute of Applied Health Research, University of Birmingham, Birmingham, UK

    Philip Kinghorn

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  1. Joanna Coast
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  2. Cara Bailey
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  4. Philip Kinghorn
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Correspondence to Joanna Coast .

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Editors and Affiliations

  1. UCL Comprehensive Clinical Trials Unit, Principal Research Associate, London, United Kingdom

    Jeff Round

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Coast, J., Bailey, C., Canaway, A., Kinghorn, P. (2016). Measuring and Valuing Outcomes for Care at the End of Life: The Capability Approach. In: Round, J. (eds) Care at the End of Life. Adis, Cham. https://doi.org/10.1007/978-3-319-28267-1_7

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