Too much safety? Safeguards and equal access in the context of voluntary assisted dying legislation

Abstract

Background: In June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation. Main text: In this paper, we analyse the ethical relationship between legislative "safeguards" and equal access. Drawing primarily on Ruger's model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, patient agency, high quality care, and supportive social norms. We argue that some provisions framed as safeguards in the legislation create significant barriers to equal access for eligible patients. Conclusions: While safety is undoubtedly ethically important, we caution against an overemphasis on safeguarding in voluntary assisted dying legislation given the implications for equal access.

Voluntary assisted dying in the Australian state of Victoria: an overview of challenges for clinical implementation

“…Ahead of the legislation coming into effect, White, Willmott, and Close, contended that "the principal implementation challenge is ensuring that this complexity functions protectively, as intended, and does not unfairly prevent eligible people from accessing VAD" (50). In considering the tension between these goals, McDougall and Pratt comprehensively examined the "discourse of safety" (54) in relation to the VAD legislation, alongside the underlying premise that "access to VAD for eligible patients is both a goal of policymakers and a community expectation" (54). Analyzing the ethical relationship between the legislated 'safety' provisions and 'equal access' to VAD (in terms of horizontal equity, patient agency, high quality of care, and supportive social norms), McDougall and Pratt conclude that, "while safety is undoubtedly ethically important… a legislative focus on maximizing safety comes at the expense of equal access" (54).…”

“…In considering the tension between these goals, McDougall and Pratt comprehensively examined the "discourse of safety" (54) in relation to the VAD legislation, alongside the underlying premise that "access to VAD for eligible patients is both a goal of policymakers and a community expectation" (54). Analyzing the ethical relationship between the legislated 'safety' provisions and 'equal access' to VAD (in terms of horizontal equity, patient agency, high quality of care, and supportive social norms), McDougall and Pratt conclude that, "while safety is undoubtedly ethically important… a legislative focus on maximizing safety comes at the expense of equal access" (54). There is a potential chasm between the legislated safeguards, and the perceived obligation or expectation that health services, perhaps particularly those that are state-funded, provide patients with access to options that are lawfully permissible.…”

“…Notably however, each survey also demonstrated that support for the legalization of VAD in Victoria was comparatively lower amongst medical specialists with responsibilities for caring for patients at the end of life (e.g., palliative care physicians and geriatricians), and amongst medical specialists with responsibilities for caring for other patients most likely to be eligible and potentially request access to VAD (i.e., patients diagnosed with cancers, or advanced cardiac, neurological, or respiratory diseases, illnesses, or conditions) (Fuscaldo, Gwini, Larsen et al, manuscript under review, Ko, Sellars, Tacey et al manuscript under review). As summarized by McDougall and Pratt, the limited number of eligible medical practitioners willing to participate in providing VAD services, in particular to act as either the coordinating or consulting medical practitioner, is reported as a key barrier to patient access to VAD (54).…”

“…The state-funded VAD 'Care Navigator' service established in Victoria may also offer a somewhat 'internally-facing' and centralized approach, in particular to balance the tension between maintaining 'safeguards' for practitioners (i.e., to protect their right not to participate in any way) and patient access to VAD. Indeed, in the published 'information for people considering VAD', patients are referred to the Care Navigator service (3,54); McDougall and Pratt highlight that this information for patients "repeatedly presents the VAD care navigators as enabling access when a patient's doctor is not participating or referring" (54). However, as widely reported by media in the days after the legislation came into effect, the intended 'state-wide' service to be provided by the care navigators is curtailed by the federal Criminal Code 1995 (Cth).…”

“…material" (56), in effect, making use of the phone or internet to discuss VAD potentially legally problematic, so all consultations need to occur in-person (57,58)-an obvious challenge for the initial two care navigators to effectively service the entire state. Thus, while the care navigators may assist navigate the tension between protecting practitioners and facilitating patient access to VAD, McDougall and Pratt note it is "unclear whether navigators will be effective at facilitating access and whether they will be able to do so equitably" (54).…”