Strategies for the economic evaluation of end-of-life care: making a case for the capability approach

Abstract

Economic evaluation of end of life care is increasingly expected from both research funders and those making decisions about the use of health and social care resources. There are, however, difficulties in applying the currently established evaluative methods to end of life. These are partly associated with the sensitivity of the topic and the feasibility of data collection but also, more fundamentally, a lack of agreement about the terms in which such care should be evaluated. This paper examines different theoretical perspectives from which economic evaluation of end of life care could be conducted, and argues for the application of a capability approach focusing on the opportunity for a good death. It then examines challenges with taking forward such an approach, including defining, measuring and valuing appropriate outcomes. It concludes that such an approach is viable, and explores how it might be taken forward to assist with resource allocation decisions.

Keywords::

• capability approach
• close persons
• decision making
• economic evaluation
• end of life care
• ICECAP-SCM
• valuation

Acknowledgements

Thanks are due to Kathy Armour, Alastair Canaway, Terry Flynn, Louise Jones, Phil Kinghorn, Sarita Lavender, Rosanna Orlando, Cara Bailey, Hareth Al-Janabi, Jeff Round and Eileen Sutton with whom discussions have helped in the development and clarification of my own views, and to Phil Kinghorn, Hareth Al-Janabi and Paul Mitchell who read an earlier draft of the paper. Aspects of this paper have benefited from previous discussions in the Health Economists’ Study Group and the Human Development and Capability Association conference, and the paper as a whole benefits from the comments of three anonymous reviewers. Any remaining errors are my own.

Financial & competing interests disclosure

An EU funded ERC Starting Grant (261098 EconEndLife) funds J Coast to conduct research into the allocation of resources in end-of-life care using a capability framework. The author has no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Key issues

• Economic evaluation can be conducted from three main philosophical perspectives: welfarism; narrow extra-welfarism using the cost/quality-adjusted life-year approach; a broader extra-welfarism often associated with Amartya Sen’s capability approach.

• There are many methodological challenges associated with the evaluation of end-of-life care, associated with defining, measuring and valuing appropriate outcomes.

• The perception of the methodological challenges differs according to the philosophical perspective, and the paper argues that such perspectives should be made clear in critiques of methodology.

• The paper argues for a philosophical perspective based on the capability approach, with the opportunity for a good death for both the dying person and the persons close to them as an appropriate outcome.

• The ICECAP Supportive Care Measure is the first outcome measure to define the outcome for the dying person in line with this philosophical approach and offers a way forward, but evidence about its validity is still required; work is also required on the important outcomes for the dying person’s family and friends.

• One challenge in measuring capability at the end of life is to determine who should complete measures and better understanding the benefits and disbenefits of completion by different stakeholders.

• Another challenge is to establish how to value capability measures, whose values are appropriate and how feasible and meaningful such valuations are.

• A final challenge is to incorporate such measures in decision making.