Better Regulation of End‑Of‑Life Care: A Call for a Holistic Approach

Abstract

Existing regulation of end-of-life care is flawed. Problems include poorly-designed laws, policies, ethical codes, training, and funding programs, which often are neither effective nor helpful in guiding decision-making. This leads to adverse outcomes for patients, families, health professionals, and the health system as a whole. A key factor contributing to the harms of current regulation is a siloed approach to regulating end-of-life care. Existing approaches to regulation, and research into how that regulation could be improved, have tended to focus on a single regulatory instrument (e.g., just law or just ethical codes). As a result, there has been a failure to capture holistically the various forces that guide end-of-life care. This article proposes a response to address this, identifying “regulatory space” theory as a candidate to provide the much-needed holistic insight into improving regulation of end-of-life care. The article concludes with practical implications of this approach for regulators and researchers.

Note:
Funding Information: Open Access funding enabled and organized by CAUL and its Member Institutions. Ben White discloses that he is the recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government. Eliana Close’s postdoctoral research appointment is also funded by this grant. The study funder had no role in writing up the research.

Conflict of Interests: None.

Keywords: end-of-life care, medical legislation, government regulation, ethical issues, health law

JEL Classification: I, I1, I19