Patients and caregivers as ‘regulatory actors’ in healthcare systems: Assisted dying as a case study

• Published in: Medical law international 2024-09, Vol.24 (3), p.164-191
• Main Authors: Jeanneret, Ruthie, Close, Eliana, Willmott, Lindy, White, Ben P
• Format: Article
• Language: English
• Subjects: Assisted suicide; Caregiver burden; Caregivers; Death & dying; Health care industry
• ISSN: 0968-5332; 2047-9441
• DOI: 10.1177/09685332241274972

This article examines the role of patients and caregivers as ‘regulatory actors’ in healthcare. It uses and extends ‘regulatory space theory’ to argue that failing to consider the role of patients and caregivers as ‘regulatory actors’ in healthcare regulatory spaces misses a key piece of the regulatory puzzle. We argue that in assisted dying and other healthcare contexts, evidence shows that some patients and caregivers do behave as regulatory actors, engaging in sustained and focused attempts to alter behaviour. We then suggest a framework which explicitly incorporates notions of why patients and caregivers act in regulatory ways is helpful in understanding what the appropriate response to such actions should be. While the contribution of patients and caregivers to regulation is valuable and should be supported where desired by the person, if patients and caregivers are acting out of necessity to address system issues or ‘regulatory failure’, other regulatory actors (e.g. governments) should proactively respond and address these issues to reduce the burden on patients and caregivers of having to take regulatory action.