We need to rethink how end-of-life care is regulated
An article written by Professor Ben White, Professor Lindy Willmott and Dr Eliana Close
In a recent article, 'Better Regulation of End‑Of‑Life Care: A Call For A Holistic Approach', we argue that existing regulation is flawed and leads to suboptimal end-of-life care. [1] To address this, we call for thinking differently about regulation in the field.
People’s initial reaction to “regulation” is often that it is just about law. But our approach to regulation is broader and we would also include factors such as policy, ethical guidelines, clinical training, funding models, and even system design. Adopting this wider approach, we see regulation to be intentional efforts to guide people’s behaviour to bring about desired outcomes.
Current regulation of end-of-life care is flawed because it is uncertain, complex, fragmented, and at times conflicting. This has an adverse impact on the quality of end-of-life care: patients receiving non-beneficial treatment; insufficient participation in decision-making by patients and substitute decision-makers; inadequate pain relief; and conflict within families and with treating teams. For health professionals, poor regulation can give rise to moral distress (including from witnessing the above harms to patients), exposure to legal and ethical risk, and the burden of navigating unnecessary and unhelpful bureaucracy. And all of the above leads to inefficiency and cost for the health system as a whole.
Our diagnosis is that there are three linked problems. The first is that some regulation is poorly designed so cannot achieve its intended outcomes, instead leading to the adverse outcomes noted above. Here, think complex, bureaucratic law that can stifle good clinical practice.
The second problem is that even if regulation is properly designed and could be effective, it is sometimes ignored or not even known. Here, think hospital policies or clinical guidelines that remain unread on websites or institutional intranets.
The third problem is existing approaches to regulation are siloed and not holistic; it is this issue that our recent research focused on. [1]
As mentioned, we think regulation should be understood broadly to include all the factors that guide clinical behaviour: not just law but also factors such as policy, guidelines, clinical training, funding models and system design. But the issue is that existing approaches to regulation have tended to focus on one of these, e.g. just law or just policy or just training. This means we lose sight of how all of these factors work together. Or worse still, those factors don’t work together. This leads to complex, conflicting, and fragmented guidance for patients, families and health professionals – what do you do when the law says one thing and a hospital policy says another?
To address this, we advocate for a holistic approach to designing regulation of end-of-life care. Such an approach recognises that there are multiple sources of regulation that can guide behaviour and aims to align them to best support optimal care of patients.
To put this theory into practice, we are undertaking a four-year Australian Research Council-funded Future Fellowship project entitled 'Optimal Regulation of Voluntary Assisted Dying'. In this project, we map all the sources of regulation in this field and try and understand how they intersect. In other words, it is not possible to know how voluntary assisted dying works in practice by looking at the legislation in isolation. The law here is supported by state government policies, medication protocols, mandatory and optional clinical training, an oversight system, and local level hospital and care facility policies. It is only once that complex web of regulation is understood that effective improvements can be proposed.
We conclude this blog piece as we did our article:
We should be clear that we do not consider that this approach will be a panacea for addressing suboptimal regulation of end-of-life care. Regulation is always imperfect and end-of-life care is a challenging and complex area of clinical practice to govern. Nevertheless, we consider a holistic approach will help advance our understanding of regulation and its design and evaluation, which will in turn improve the quality of end-of-life care.
References
- White, B.P., Willmott, L. & Close, E. Better Regulation of End-Of-Life Care: A Call For A Holistic Approach. Bioethical Inquiry 19, 683–693 (2022). https://doi.org/10.1007/s11673-022-10213-8
Ben P White
Professor of End-of-Life Law and Regulation
Australian Centre for Health Law Research, QUT
Lindy Willmott
Professor of Law
Australian Centre for Health Law Research, QUT
Eliana Close
Senior Research Fellow
Australian Centre for Health Law Research, QUT