It’s now legal for terminally ill patients to die on their own terms, in their own home. What happens when that home objects?
Loosely worded laws mean that Victorian hospitals and aged care homes can object to any part of the voluntary assisted dying process happening on site, and their responsibility to assist that patient ends there.
Now, researchers believe they have the data to make that change.
Victoria was the first Australian state to pass laws allowing voluntary assisted dying, and it has been an option for certain patients with terminal illness since 2019.
All other states have since passed similar laws, most of which have not yet come into effect.
Given that it was the first state to allow the procedure, Victoria’s laws are considered to be among the safest in the world and are something of an outlier even within Australia.
The way the law is worded in South Australia, Queensland and New South Wales, practitioner objection and institutional objection to voluntary dying are handled in a similar way, where regulation exists to strike a balance between patient access and institutional positions.
The Victorian, West Australian and Tasmanian laws, though, have left out reference to institutional objection entirely.
In effect, this means each hospital and aged care home in those three states is able to set its own policy on whether to allow voluntary assisted dying to happen on site.
In practice, this means that one institution may allow the full process of assisted dying to happen on premises from initial consult to medicine administration; another may allow the consultation to happen on site but oblige the patient to go elsewhere for medicine administration; another may prohibit any part of the process from taking place on its grounds.
Queensland University of Technology end-of-life law researcher Professor Ben White helped lead a study on how institutional objection – separate from practitioner objection – affected the Victorian patients trying to access voluntary dying.
He told The Medical Republic that he had heard from family and caregivers that their loved ones’ applications had been stalled while they were in a hospital or other setting that did not permit it.
“And these are delays for a cohort of people where time is not really a luxury that they have – by definition, to be eligible for voluntary assisted dying [you must be] expected die within six months, or within 12 months if you’ve got a neurological condition.”
Of the 17 in-depth interviews with family and caregivers who discussed institutional objection, most of the instances occurred in either Catholic-run facilities or palliative care settings.
Another of the study’s key findings, published in BMC Medical Ethics, was that patients ended up caught between either progressing the assisted death process or being admitted to an objecting hospital to manage their pain and symptoms.
“Participants described transfers or patients getting ‘shipped to a completely different hospital’ or facility, including away from staff who had been caring for the patient,” Professor White and colleagues wrote.
“This often meant waiting until a bed was available in the transferring facility, resulting in delays accessing [assisted dying].
“Sometimes a transfer was needed back to a patient’s or family’s home to take the medication, which was not the patient’s preferred place to die.”
One participant quoted in the study described the scene that unfolded when their father, who had terminal cancer, was met with an institutional objection at one of the final stages.
He was asked whether he wanted to go back to his hometown or if there was “somewhere else” he wanted to go for the procedure.
“Dad said, ‘No, I will just do it here,’” the family member told researchers.
“At that point they said ‘Well, actually we can’t do it on hospital grounds.’
“So Dad [said], ‘Well, okay, push me out to the carpark and I’ll do it there.’”
In many cases, according to Professor White, individual doctors would go to great lengths to help patients avoid institutional barriers.
Some doctors, for instance, would go out of their way to visit patients the night before they were admitted to a facility that was likely to make an objection.
“One of the things that helped patients and families manage institutional objection was if they had an assertive or capable caregiver … and thinking about primary practice, GPs would fit within that circle,” Professor White said.
“And if they were informed about, for example, when institutional objection was an issue, they would be able to help and support the patient to navigate that.”
Professor White hopes that the new research, which is one of the first studies to investigate the impact of institutional objections, will help create a more patient-focused system.
Part of addressing that, he said, would include the state taking a firmer regulatory stance.
