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.

Practitioners’ experiences with 2021 amendments to Canada’s medical assistance in dying law: a qualitative analysis

“…External validity is also demonstrated by strong coherence with previous anticipatory/early studies on Bill C-7 18–20 and on the calibration required post-Bill C-14. 27–29…”

“…This qualitative interview study is part of a broader international project that aims to develop an optimal holistic model of end-of-life regulation. 21 This paper reports on data collected through semi-structured interviews with MAiD assessors and providers, namely physicians and nurse practitioners who assess patient eligibility for MAiD and/or administer the medication. The method is reported in accordance with the consolidated criteria for reporting qualitative studies (COREQ) ( Supplemental Material 1 ).…”

Voluntary assisted dying: peak bodies must provide practical guidance

“…Implementation of VAD is ongoing and continues after laws commence as the system is evaluated and refined. 23 A shift to a position of neutrality (which has occurred for other Australian medical bodies including the RACP, the RACGP and the RANZCP) could enhance the AMA's ability to guide policy and practice in this complex arena.…”

Registered Nurses' beliefs about end‐of‐life care: A mixed method study

“…More specifically, it refers to the individual's beliefs that individuals or groups think they should or should not perform the behaviour, such as the RN's colleagues, patients or family members (Xu et al, 2023 ). Third, control beliefs encompass an individual's skills and abilities, as well as the facilitators and barriers to actual performance which when taken together, are important determinants of the behaviour (White et al, 2022 ). All of these beliefs are important in exploring RNs' beliefs about end‐of‐life care from their personal behavioural beliefs, social normative beliefs and in the context in which they work such as control beliefs (Scherrens et al, 2018 ).…”