“This Condition isn't Going to get any Better so I can't see why we're Prolonging it”: Risks and Benefits of using Empirical Research to Inform Normative Decisions Concerning End-of-Life Care

Abstract

Progressive neurological diseases are often complicated by declining cognitive function (leading to impaired decision-making capacity) in addition to the physical impairments which have significant emotional and social consequences. Options for managing the later stages vary from invasive medical procedures, palliative care, and (in some jurisdictions) assisted suicide or euthanasia. Decisions about the right approach to take may be influenced by facts about the likely effectiveness of treatment. However, moral questions, such as the right balance between preserving life and maximizing quality of life, are an inherent part of the care-planning process. This paper takes nutritional support as an example of one area of decision-making that needs to be addressed during care-planning for people with progressive neurological disease. It describes research into the way in which the values of practitioners, members of the public and people with lived experience of progressive neurological disease may influence their decision-making about the right approach to maintaining nutritional intake during end -of-life care; and discusses some of the challenges of incorporating such findings into normative frameworks.

Keywords:

• Palliative care
• euthanasia
• clinically assisted nutrition
• empirical ethics

Acknowledgments

The authors would like to thank everyone who gave up their time to participate in the Future Care Study; the Dunhill Trust for sponsoring the project; the delegates at the one-day conference at the Von Hügel Institute, at which a first draft of this article was presented and whose comments and questions helped in the development of this article; and the editors and anonymous reviewers whose constructive suggestions greatly improved further drafts.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was funded by The Dunhill Medical Trust [grant number R317/1113]. AH and SB are supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England at Cambridgeshire and Peterborough NHS Foundation Trust. AH is also supported by the Health Foundation. The funders had no role in the design, undertaking or writing of this paper, and no part in the decision to submit for publication. This paper presents independent research partly funded by the National Institute for Health Research (NIHR). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.