Voluntary assisted dying laws, which allow terminally ill people who meet strict eligibility criteria to end their life, have been operating in Victoria for two years. The laws are underpinned by two central pillars: safety and access.
Safety means the only patients who can access assistance to die are those who meet the eligibility criteria set out in the legislation. This means terminally ill adults who are suffering and expected to die within six months (12 months for neurodegenerative conditions).
Access refers to the ability of patients who meet the eligibility criteria, and want voluntary assisted dying, to actually use the laws. This depends on the process not taking too long or being so challenging that a patient just gives up, or dies before access is granted.
Our research papers, published today in the Medical Journal of Australia and recently in BMJ Supportive and Palliative Care, found doctors involved with the Victorian scheme have concerns about access, but not about safety.
A major barrier to patients’ access is the requirement for the doctor to obtain a permit from the government. This is a key component of the system’s oversight. It involves a formal application to a government official who decides within three business days whether the legislation’s processes have been followed and certain criteria met.
But not all Australian states have followed suit. The Western Australian law, which comes into effect this week, does not include a permit process, nor does Queensland’s bill. We prefer the WA and Queensland model.
Barriers to access
To understand how the Victorian system is operating, we interviewed 32 doctors who had provided voluntary assisted dying services to patients, to hear about their experience of the system in its first year.
When talking about the prior oversight and approval process, most said they were concerned about navigating the system, including the layers of approval required, the “bureaucracy” involved in the process, and challenges with the mandatory online system for submitting forms. This led to delays in patients accessing the system.
The doctors we interviewed also raised concerns about prior oversight and approval being a barrier to very sick patients accessing the scheme. One described “people dying going through this process”. Another said: “if you’re unwell and you really need it, it doesn’t work”.
Another doctor said:
Of the patients that I’ve been working with, only four have been able to get through to the completion of the process. It’s been one of our issues […] it is complicated and because there’s a lot of bureaucracy to encounter and a lot of hurdles to jump […]
Despite concerns about the system, some doctors in our study considered having prior oversight and approval protected them and ensured the system’s safety.
Seeking government approval isn’t the norm
Requiring prior approval of voluntary assisted dying is very unusual. Around the world, only the Victorian and Colombian systems require external prior approval.
However, other places are now considering or implementing this model, such as Tasmania and SA, whose laws which are yet to come into force.
Currently, all other voluntary assisted dying systems internationally use retrospective review of cases to ensure the system remains safe. With retrospective review, doctors can approve access to the scheme, and their decisions are later examined by review committees.
If voluntary assisted dying has been inappropriately granted, the doctor may face possible sanctions or criminal prosecution. But the doctors don’t need to get government permission first.
Access must be a priority too
Parliaments debating new voluntary assisted dying laws and governments implementing existing ones must keep in mind the people who are intended to use it, who by virtue of the eligibility criteria, are terminally ill and suffering.
They must ensure the design and implementation of the system meets these patients’ needs. This includes thinking critically about the potential cost to access of some safeguards.
Given that prior oversight and approval is rare internationally and the difficult Victorian experience with it, we consider this is not desirable, or needed.
However, where laws require such prior approval, system design must ensure this is done efficiently. This includes avoiding bureaucracy that doesn’t directly improve patient safety, and an optimal information technology system. This will help to at least minimise delays that could preclude dying patients accessing the system.
This article was co-written by:
Ben White receives funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian and Western Australian Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. He (with Lindy Willmott) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Ben White is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government.
Lindy Willmott has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian and Western Australian Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. She (with Ben White) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Lindy Willmott is a former member of the board of Palliative Care Australia.