“Another week? Another week! I can’t take another week”: addressing barriers to effective access to legal assisted dying through legislative, regulatory and other means

Abstract

Although assisted dying has been legalised by specific statute in 10 jurisdictions in just over two decades, to date none of those statutes has undergone a rigorous, systematic formative evaluation to identify its strengths and weaknesses, in particular any barriers to access for people seeking legal assisted dying. The research literature suggested that such barriers might arise in part as a result of various ‘safeguards’ built into the statutes to protect against any potential for abuse of people vulnerable to being pressured into seeking assisted dying. Applying an interdisciplinary approach, integrating law and medicine with some aspects of psychology and sociology, this research adopted a ‘utilization-focused’ evaluation research paradigm to identify both barriers to access and attempts across jurisdictions to mitigate such barriers, whether by legislative, regulatory or other means. It then analysed the effectiveness of those mitigation strategies and explored other ways in which access barriers might be avoided or mitigated. Significant barriers were identified not only for people seeking legal assisted dying but also for doctors and other health practitioners who wanted to become involved in undertaking assisted dying functions. An analysis of the underlying causes of the diverse barriers identified revealed a pattern of both purposeful and inadvertent gatekeeping by those opposing or equivocal about legal assisted dying. The research explored current developments across jurisdictions proposing to legislate for assisted dying and identified a process of evolution where new assisted dying Bills are innovating rather than transplanting statutory provisions and frameworks. Specific suggestions have been proposed for ‘critical enablers’ within assisted dying statutes to facilitate fair and reasonable access and provide a balance against gatekeeping. A proposal is made for mainstreaming formative evaluation of new statutes as a standard practice in health and social law reform.