VAD can make death easier for a patient and their family. But 'individual acts of heroism’ by doctors do not make for a sustainable scheme.
Telehealth restrictions and insufficient remuneration are the top two roadblocks to voluntary assisted dying services in Australia, according to attendees at the inaugural VAD Conference in Sydney.
As jurisdictions across Australia navigate the various stages of the roll out of VAD services, the gathering organised by the newly formed peak representative body VAD Australia & New Zealand brought together medical professionals, policy makers and administrators.
Day two of the conference commenced with a deeply moving and personal account from Pauline McGrath of her husband David’s journey through the VAD system in Queensland.
David was a director of paediatric medicine and dermatology and the sole paediatrician for refugee health in Queensland.
“When he was at work, people at work would say how much he told them he loved his family. When he was at home, we knew he loved being a doctor,” said Ms McGrath.
As soon as he received a diagnosis of glioblastoma multiforme in May last year, it was clear VAD would be a consideration for David.
“He said to me, ‘I have a brain tumour. And voluntary assisted dying starts on the first of January’,” Ms McGrath told the room.
“It was the second thing he told me after he told me he had a brain tumour.”
David pushed through with the “futile” treatments offered to him, with the aim of being at his daughter Claire’s wedding. He made the wedding, but his condition began quickly deteriorating.
From beginning to end, Ms McGrath said Metro South Health’s VAD team “made the process incredibly easy for us”, following through on commitments and visiting David in his own home.
“David decided in the early hours of the morning, when he could no longer get to the bathroom himself, and get into bed himself and roll over himself, to use his voluntary assisted dying medication.
“We had one more day together as a family.”
David passed away in the company of his wife and his two daughters.
“[It] was as gentle as you could imagine.
“But it wasn’t only gentle for David. It was gentle for us. And we’re the ones who have to actually move through life now, having had this experience.”
Pauline spoke of her gratitude that the experience was not only gentle, but controlled and without physical pain for David.
But the process wasn’t entirely without roadblocks.
David was zoned to a faith-based palliative care service in West End Brisbane. They were told that VAD was “not something they did within their organisation”.
After this disheartening response, David “disengaged completely from healthcare services”, leaving Ms McGrath and her family to source beds, chairs, walkers and more from her community.
Although she never asked him the question, Ms McGrath wondered whether this experience spurred her husband to use his VAD medication early.
Institutional objection is one of the many roadblocks in the way of VAD’s incorporation into Australian healthcare.
On day one of the VAD conference, medical professionals voted on the most significant barriers to VAD services.
Telehealth constraints were number one.
Currently, the Criminal Code Act – sections 474.29A and 474.29B – prohibits the discussion of any “suicide-related” discourse using a “carriage service”.
While many jurisdictions have clarified that VAD is not suicide, many health professionals shy away from using telehealth for any aspect of VAD services for fear of prosecution and a hefty fine.
Professor Michael Dooley, director of pharmacy at Alfred Health, told the conference that while this barrier particularly affected rural and regional Australia, if providers were having to spend additional hours visiting remote areas, the time available for all patients as well as the sustainability of the service were affected.
Speaking to a panel on building a sustainable VAD service at the conference, senior staff specialist at Southern Adelaide Palliative Services Dr Peter Allcroft called on leadership to “have our backs” by pushing for better remuneration, which was voted as the second most significant barrier to VAD at the conference.
According to Casey Haining, a research fellow at the Australian Centre for Health Law at Queensland University of Technology, who spoke to Dermatology Republic in August, many doctors are providing many hours of VAD services pro bono as the MBS billing system “doesn’t the time commitment … required by a practitioner”.
“It is really important to note that individual acts of heroism by clinicians is not a sustainable model of care,” Dr Allcroft told the conference.
He emphasised the importance of educating and mentoring GP trainees, as most of Victoria’s VAD practitioners are GPs.
“Most of the [VAD] practitioners are general practitioners, not local hospital network or hospital and health services staff members,” he said.
“So we actually need to get to the GP trainees, and that’s including rural doctors.”
Dr Allcroft added that many providers were acting on their own, as individual clinicians, without the support of larger institutions, making the need for support even greater.
Touching on what she learnt from her recent Churchill Fellowship, Meg Plaster from the VAD Statewide Care Navigator Service WA said we should look to New Zealand, which over time has developed a “fabulous” funding structure.
“We need to be really clear and careful about developing funding systems and models so that we don’t end up with a predominantly fee-for-service model,” she said.
“I think in Western Australia, anecdotally, we have seen a breadth of our population access assisted dying. A really diverse population of people [including those] who are homeless, and with difficult socioeconomic circumstances – the whole gamut.
“I really worry that we will lose that if we don’t look at how we publicly support practitioners to stay in this work.”
Beyond support for health professionals, the need to boost public awareness is evident, according to Professor of Health Law at Queensland University of Technology Lindy Willmott.
In a number of jurisdictions, medical practitioners are not allowed to raise VAD with patients.
Research performed by Professor Willmott’s team showed this was one of the main barriers to VAD access.
But Professor Willmott said there were “relatively easy-fix solutions”, namely more public education about VAD as a legal end-of-life option, or repealing the legal prohibition on initiation of conversations.
Structural or systemic changes are a less easy fix.
“Clinicians have been reporting workplace tension as a result of their participation. So workplace culture in some places needs to improve,” said Professor Willmott.
“This requires health service leadership and clinical leadership.
“There’s a lot of paperwork, there’s a lot of bureaucracy that is required in a system, which is as highly regulated as the Australian and New Zealand model.
“Can we do better? Are the information management services as good as they can be? Other forms as good as they can be? Can they be improved?”
Professor Willmott said it may be time to consider which safeguards are warranted, and which do more to obstruct patient access than to protect their safety.
She hoped that future reviews of each states VAD systems, which are mandated by the legislation, will offer a comprehensive review of innovative methods of improvement.
Go Gentle Australia is running the National Voluntary Assisted Dying (VAD) Survey, to assess experiences of services across the country.
