Main findings
Most patient experiences of seeking AD were reported by participants to involve institutional objection (17/28 patient cases). These objections are mainly rooted in the Catholic religion and/or moral opposition based on the philosophy of palliative care. Participants identified three key processes affected: eligibility assessments, medication access, and medication administration/administration. Institutional objections arose in health care settings, leading to delays, transfers, choices between progressing an AD application and receiving palliative or other care, and adverse emotional and relationship experiences.
Six mediating influences on institutional objections were identified. Some compound the effect on patients, such as having a particular disease cared for primarily in an institution that objects. Others mitigate the impact, such as support staff at the institution. The schematic relationship between these topics is shown below (Fig. 1).
A thematic diagram of participants’ perspectives on institutional objections in the Victorian assisted dying system
Implications of institutional objection as a barrier
Barriers to access to AD caused by institutional objections can compromise the quality of the patient’s end-of-life experience [9, 32]. Key factors for a “good death” include choice and control in the dying process and receiving integrated care at the end of life, including pain-free status, dignity and emotional well-being [33]. Yet these findings suggest that institutional objection may reduce patient options, require a choice between progressive AD and receiving palliative care, and cause emotional imbalance and stress in the patient’s final days.
Additionally, the impact of institutional objections on patient access to AD may compound existing access challenges. For example, the time lag in the AD approval process can be problematic as patients ‘race’ to access AD before they die [34]. This is particularly so in systems where eligibility criteria require a time period until death, as in Victoria (6 months or 12 months for neurodegenerative conditions) [16]. Delays from institutional objections, even relatively short ones, can jeopardize access overall.
Institutional objections have also exacerbated the challenges facing patients with neurological diseases. At the time of this research, there were already fewer AD practitioners trained in this specialty in Victoria [35], but it was reported that patient access was further hindered because a nationwide neurology facility was an objecting institution. Given that patients with neurological disorders are a recognized cohort seeking AD [35, 36]this institutional objection is problematic for access.
A related observation, replicating Wiebe et al [13] findings from Canada is that these findings reveal something of a “lottery,” with some patients better able to cope with institutional objections if the right constellation of mediating factors is present. This creates disparities in care based on inappropriate considerations such as geographic location, illness, practitioners encountered, and family and other support available.
Challenged Admissibility and Scope of Institutional Objection
These findings inform debates about the permissibility of institutional objections and, if allowed, their justifiable limits. Given the paucity of empirical research on institutional objections, the adverse impacts on patients (and carers) in Victoria’s AD system identified in this study support at least some limits to institutional power. Moreover, findings of variability in staff views about AD within objecting institutions may undermine the case for allowing such objections. If the defense of institutional “conscience” is based on a defense of broad staff consensus, those arguments are undermined by this finding, mirroring studies in other settings [37, 38].
These findings also raise questions about how best to address the identified patient harms of institutional objection. Should this be regulated by the state or left to practice, and if formally regulated, what model should be chosen (eg absolutism of conscience, intolerance or some form of reasonable accommodation) [3, 10]? There are also questions about how such regulation should be implemented (if this path is chosen), for example through law, policy and/or funding mechanisms. Any regulatory response will also need to address issues such as whether the intended length of care provided by the institution affects its obligations and whether all stages of the AD process should be treated equally. To illustrate, legislation in the Australian state of Queensland imposes higher obligations on long-term care facilities such as nursing homes (which are considered a person’s home) than on short-term care settings such as hospitals, and treats access to AD information differently. from taking or administering the drug [39].
Our observations are that the current Victorian approach based on state-issued (non-binding) policy guidelines is not effective in achieving the objectives of respecting institutional positions while promoting patient access. This ‘soft regulation’ approach appears to have allowed the existing asymmetry of power, resources and information to prioritize institutional positions over patient choice. Such an outcome is at odds with the broader policy objectives of Voluntary Assisted Dying Act 2017.[16]
Another concern was the considerable variation in the way institutional objections were expressed. Some institutions objected explicitly, but other participants learned about objections indirectly, through progressive interactions with staff and sometimes only after a period of time in care. Uncertainty about institutional positions echoes the existing literature [40] and is problematic because it makes informed choices about care more difficult for patients and caregivers. Regardless of views on the permissibility of institutional objections to AD, transparency and clear communication of positions are desirable.
Limitations of the study
This is one of very few empirical studies on an international scale that examines institutional objections to AD. Importantly, it provides evidence of the adverse impact that institutional objection can have on patients (albeit as reported by family carers). However, a limitation of this study is that the perception of carers may differ from that of patients, as carers may be affected by grief, bereavement and their relationship with the patient they have supported [25, 26]. However, proxies have been found to be a reliable source of information about the quality of end-of-life services, demonstrating high concordance with patient opinions [41].
Another limitation is that our participants’ perceptions reported in this study are based on their experiences of interacting with specific health care professionals and institutions. Other perspectives are needed and further research is needed with a wide range of key stakeholders, including to address broader systemic issues such as the role of institutional policies and protocols in managing objections.
Our sample may also be more AD-biased given our recruitment methods, which included through patient interest groups. Furthermore, only three patients in this study missed AD. More research is needed with this cohort, including whether institutional objections contribute to lack of access and the equity issues this raises. Moreover, given that many patients still had access to AD although institutional objections, further investigation into the reasons for this is needed, including the mediating factors identified in this study (eg, a capable and confident patient and/or family caregiver).
Finally, further research is needed on the intersection between individual conscientious objection and institutional objection, including how one may shape the other. The findings here are that staff positions are mediators of institutional objections, but more research is needed.