by Jane Morris
"The dying person must not become the battlefield on which our moral disagreement is fought." Chris Dudfield, VADCON 2026
I attended the recent VADCON26 Melbourne conference accompanied by Board members Dr Nick Carr, Dr Adam Steinberg, Rory Goldberg, our media and communications advisor Eleanor Pallett, and Fiona Antony, a nurse from Portland, whom DWDV had sponsored to attend the conference. The conference was hosted by Go Gentle Australia (GGA) and Voluntary Assisted Dying Australia and New Zealand (VADANZ), an organization founded by previous DWDV Board member, the incredible Dr Cameron McLaren. The theme for this year’s conference was “From Margins to Mainstream”.
The conference was attended in person by more than 350 people from Australia and New Zealand, with many more attending remotely. It was thought to be the largest gathering of VAD providers in the world. The conference was, as expected, a resounding success and we all left with thoughts and ideas swirling around our heads. To sit amongst individuals representing a multitude of health disciplines, all driven by the same fervent desire to lessen suffering at the end of life is truly a privilege.
MC, Dr Andrew Rochford did a fabulous job and contributed many appropriately interspersed moments of humour which are of course mandatory at any VAD meeting.
Day 1 of the conference opened with a very warm and meaningful ‘Welcome to Country’ by Murrundindi, the Ngurungaeta and Elder of the Wurundjeri tribe.
Oncologist and keynote speaker Dr Ranjana Srivastava delivered an extremely sensitive and powerful speech that entirely captivated the attention and emotions of everyone in the room. Ranjana spoke about her perspective on the changing face and future of end-of-life choice and care. She described VAD as being a necessary tool in the toolkit for dying well and referred to the issues of intellectual humility over arrogance, the difficulties in providing a time to death prognosis, suffering, dementia, and respect. She emphasised the fact that disagreements or differing views towards medical provision should never prevent good clinical care and that we can hold healthy and robust discussion about death without compromising life. Ranjana’s speech was a wonderful and beautiful way to set the tone for the conference.
Every speaker provided a valuable contribution and resulted in much thought provocation.
The session covering access to VAD for those suffering from comorbidities and those described as ‘the elderly frail’ received an enormous response. We were asked ‘who owns the elderly frail?’ as frequently they were handballed along the continuum of health care providers eventually ending in Aged Care, the very place many had emphatically stated they did not want to end up in. The late queen’s death certificate cited ‘old age’ a cause of death that Dr Nick was taught was not acceptable. Can we expect to see this happen here? As Professor Ken Hilman, an intensive care specialist stated, “frailty predicts mortality in the elderly with the same certainty as cancer”. In Victoria, for an individual to be deemed eligible for VAD they must suffer from a disease, illness or medical condition. Dr Kerrie Aust questioned why frailty and suffering from multimorbidity were not considered medical conditions and questioned the definition of a medical condition.
It was noted that some jurisdictions, such as Canada, do allow 'frailty' as a reason for assisted dying. On the other hand, New Zealand's legislation specifically excludes advanced age as an acceptable condition.
A wonderful panel discussion, chaired by Dr Clare Fellingham (the newly elected VADANZ President) looked at the integration of VAD, Palliative Care and end-of life care into one end-of-life system. It was extremely heartening to see the CEO of Palliative Care, included in the panel - a scenario that could hardly have been envisaged even up to a few years ago. It was discussed how such a system must work around the individual patient and not be regarded as a challenge to professional identity. This session highlighted significant equity and access challenges within voluntary assisted dying and broader end-of-life care systems.
The CEO of MND Australia used a powerful visual diagram to demonstrate the complex and often fragmented network of services that people living with motor neurone disease (MND) must navigate. It was emphasised that individuals facing a rapidly progressing illness frequently do not have the time, capacity, or support to negotiate systems that are often poorly coordinated and unable to respond quickly to keep pace with the changing needs of individuals.
Several sessions then ran concurrently. I attended one that addressed equitable VAD access and posed the question, for whom does a mainstream system serve? This session highlighted significant equity and access challenges within VAD and broader end-of-life care systems. Discussion around First Nations access to VAD noted that, in Victoria, First Nations communities were not formally consulted about VAD until 2024. This raised important questions about whether communities were being asked to adapt to an established system or were being genuinely invited to help shape it.
A further presentation examined disability and access to VAD. It highlighted that disability data is not routinely collected for people seeking VAD, despite the UN Convention on the Rights of Persons with Disabilities affirming the right to the highest attainable standard of health, including end-of-life care. Given that one in five Australians lives with a disability, and that disability becomes more prevalent with age, and 90% of VAD users are over the age of 60, concerns were raised that disability can create additional barriers to navigating the VAD process and may contribute to delays, even barriers to access.
The final presentation in this session addressed the challenges faced by people living near state borders. Many Victorian residents living on the Murray River border receive palliative care or other medical treatment in neighbouring New South Wales. Differences between state and territory VAD legislation can create practical barriers for both patients and practitioners. For example, a person may be unable to transport a VAD substance across a border to return home to die surrounded by family. Health professionals working across border health services must also navigate complex legislative and administrative requirements arising from these jurisdictional differences.
Next up was a session on VAD in residential aged care homes (RACH), an issue that is extremely concerning. Staff working in RACHs are often from diverse religious backgrounds and have limited VAD knowledge and are reluctant to become engaged in VAD conversation. In the Sydney Local Health District, an educative program is being delivered to staff to increase VAD awareness, clarify legal obligations and ensure that staff felt more comfortable when the topic was raised. In a post-program survey a significant number of respondents felt more at ease and equipped to engage in VAD conversation. We were reminded how every individual has a legal right to die at home and a person living in Aged Care, their home, has a right to access VAD.
Increasing demand for witnesses, coupled with the absence of a formalised witnessing process, particularly within hospital settings has prompted the development of a supported VAD witness program led by the VAD Care Navigator Service. Many patients have limited social supports, concerns about privacy, or face practical barriers in identifying suitable witnesses. There were also concerns regarding legislative requirements and, most critically, the lack of reliable access to witnesses in hospital environments, difficulties faced with interpreter and timing coordination, and the availability of debriefing groups. The witnessing program established by DWDV following the commencement of VAD operation in Victoria was widely praised for addressing a significant gap in patient support, and particularly thanks were given to Natalie King, our General Manager, who manages this incredibly valuable service.
We were reminded how every individual has a legal right to die at home and that a person living in Aged Care is thought to be living in their own home. This right is guaranteed under Federal law and can override state and territory VAD laws. Residents must be provided with VAD information upon request, must be allowed to store their VAD substance to use at a chosen time and date and most importantly must be able to access all stages of the VAD process, including the final administration of the VAD substance. Individuals navigating VAD need personal care and meeting the dying needs and preferences means setting your own needs and preferences aside. Problems arise when values collide and people instead of judging another’s choice need to accompany a person on their end-of-life journey.
Several sessions initiated great interest and discussion. One addressed the impact of stigma on VAD care and was most elucidating! Stigma was defined by the UN Secretary 2008 as ‘The most important barrier to public action.” The categories of stigma and numerous examples provided were mind boggling. All examples of stigma result from an underlying assumption of power by the stigmatiser. Stigmatization of a medical condition is most prevalent in conditions that often can’t be concealed, of origin unknown, perceived to pose danger, can invoke disgust and prevent social interaction. Oncological conversation is laden with military language such as fighting or battling a condition and of course at the end whether the battle was won or lost. Those associated with VAD are often labelled ‘different’, they are perceived as separate from the general community with the loss of status and discriminated against. Of course, this all leads one to ask how we can shift these stigmas and it is here the media can play an integral role.
And that was the end of an incredible Day 1. That evening we attended a dinner at which 2026 VAD Awards were announced (see below).
Day 2 commenced with a speech from the VADANZ President discussing the challenges facing VAD in the next 5 years and VADANZ’s role in addressing them. Following, the much anticipated and challenging issue of the ineligibility of those diagnosed with dementia, arose. There is no doubt that people don’t want to hear about the medical, legal, ethical and societal complexities of this issue. They demand ACTION and a RESOLUTION. One third of people applying for VAD in Australia are aged 80 and over. At present there are 2 possible pathways to navigate. One is a concurrent request when the person suffering dementia accesses VAD whilst they have decision-making capacity. The other, preferred option, is a request for VAD in an Advance Care Directive, in which the exact circumstances in which the VAD should be enacted are documented. There are 2 broad groups of individuals with dementia seeking VAD eligibility in Australia. Those living with dementia who have a co-existing terminal illness and those applying for VAD solely based on a diagnosis of dementia. The issue is incredibly complex and challenging but as we were continually reminded that is no reason for it to be thrown in to the ‘too hard basket’. Evidence from overseas only affirms a VAD provider’s reluctance to help an individual who has lost capacity to an assisted death.
Support for those accessing VAD and for loved ones supporting them, before and after, was discussed. The grief associated with VAD is unique and it was noted that contributing factors included an individual’s nomination of a date to die, which sometimes led to a distressing countdown for all involved and ‘a parade of lasts’. Is VAD grief impacted because of the method of delivery of the VAD substance and is grief impacted if one has had a problematic VAD journey (eg. conscientious objection from health practitioners)? We heard about the VAD grief and bereavement support group that has been jointly run by Griefline and DWDV for the past few years. This group has provided free online group sessions that run for 6 weeks, 2 hours a week, for those who have supported a loved one through the VAD process. Drop-in support sessions are also available for those accessing VAD.
Then began discussion centred on conscientious objection where we pondered the questions ‘Have assisted dying laws got the balance right in protecting patients, clinicians and facilities?’. This is obviously a subject of great frustration and distress to all involved in the VAD field. Where does conscientious objection end and where does obstruction begin? Those that impede, delay or discourage access to VAD are clearly obstructors yet we must remain mindful that conscientious objection doesn’t necessarily lead to obstruction, unlike situations in which a deliberate non-participatory choice is made. It was emphasised and unanimously agreed to that obstruction must be clearly defined and identified before we can address it. Obstruction, like bullying, takes on so many forms, many of which can be subtle and often unrecognized but can be just as destructive and harmful as those that are overt. Most distressing is the fact that most VAD obstruction occurs in faith-based hospitals, particularly Catholic institutions. Andrew Denton pointed out that, out of all religions, Catholicism is the only one that does not necessarily accept the local legal system, as the Pope stated ‘canon law overrides the law of the land’. Australian jurisdictions were said to lack a clear and simple pathway for complaints.
Too often we hear fears expressed about the sustainability of the VAD workforce. It is imperative that VAD providers at the coal face be supported. With our rapidly increasing ageing society there is a rising demand for VAD and general health care. The answer is not simply recruiting more staff. Shortages are real, but equally important is the fragmentation and poor deployment of resources. ‘Reform is about redesign, not just more clinicians’. Interestingly the lack of remuneration for VAD providers is not, as previously considered, a major deterrent for doctors entering the VAD space, as evidenced in Western Australia. Introducing nurse practitioners and registered nurses to assume the Administering Practitioner role, and in the ACT either the consulting or co-ordinating role, will add to the VAD workforce but the numbers are small, and it is often the case that a small number of VAD providers who carry the load and are at risk of burnout. Some of the ways we can address the depleted workforce issue in the future are shifting care out of the hospital to communities, creating a system of multidisciplinary care, looking at productivity in terms of outcomes and not activity, viewing wellbeing as a system issue and using technology enabled care. ‘VAD is not fundamentally a legislative challenge anymore. It is increasingly a workforce, coordination and service-design challenge,’
The day finished with a reflection by Linda Swan of the last 10 years of VAD in Australia. It has been an incredible road to success but there is still work to be done, and the work achieved by so many individuals from differing disciplines has proved invaluable.
AWARDS:
Congratulations to all the finalists and winners, presented at a gala dinner during the VADCON26 in Melbourne.
The winners were recognised for outstanding contributions of researchers, health professionals and community advocates. They were:
VADANZ Innovation Award for Emerging Research in Voluntary Assisted Dying
Winner: Casey Haining
Casey was recognised for her significant contribution to voluntary assisted dying research, particularly in VAD and dementia. Through her academic appointments and doctoral research, she has produced an influential body of work that has shaped policy, law reform and clinical practice. The judges praised her dedication, resilience and outstanding impact, noting her exceptional achievements as an emerging researcher.
Go Gentle Australia Community Champion Award – Organisation or Group
Winner: Northern Territory Campaign Team
The team included Judy Dent, Marshall Perron, Lindsay Marshall, Frankie Bennett and Suzanne James, alongside family advocates including the Bayliss family, Sharon Cramp Oliver, Lori Martin, Gavin Perry and the late Steve 'SteveO' O'Grady.
Go Gentle Australia Community Champion Award – Individual
Winner: Dr Scott Blackwell
Dr Scott Blackwell was honoured for his outstanding leadership in developing and implementing voluntary assisted dying in Western Australia. From shaping the legislation and leading implementation to serving as inaugural Chair of the WA VAD Board, he played a pivotal role in establishing a compassionate, high-quality service. The judges recognised his lasting contribution to building a strong VAD system and fostering a culture of mentorship, generosity and collaboration.