- FROM THE PRESIDENT - Hilde Nilsson
- DEMENTIA AND ACCESS TO VOLUNTARY ASSISTED DYING - Robyn Maggs, Vice President
- CONGRATULATIONS ACT - Shirley Haas, Secretary
- HOW I BECAME A DWDTAS COMMITTEE MEMBER - Robyn Maggs
- IMPORTANT LINKS
- PLEASE CONTACT US
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FROM THE PRESIDENT - Hilde Nilsson
Dear Member
Voluntary Assisted Dying has been in operation in Tasmania for well over 18 months now, and the feedback from families of people who have availed themselves of this compassionate option, has been very positive.
How VAD is working in our state, was eloquently presented by Dr Keith McArthur, when he was the guest speaker at our recent AGM last month. Dr McArthur holds the position of Clinical Lead, VAD, in the Tasmanian Health Service. For those who were unable to attend the AGM, and are interested, a recording of his talk can be accessed by clicking the link here. VAD is working well, but the shortage of doctors working in this space is a challenge, particularly in the more isolated areas of our state.
The AGM saw the continuation of our existing Committee and Executive, so no elections were needed. But we were sorry to learn that our former President and longtime VAD campaigner, Margaret Sing, would be temporarily stepping back from active DWDTas participation.
There will be another national VAD conference this year, this time in Brisbane, on October 28 & 29. Information about the conference is available on the Go Gentle website. Tickets for attending the conference remotely can be purchased from the Go Gentle website by clicking here.
We find it most helpful to be able to keep up with national issues and developments through participation in regular zoom meetings with state, territory and NZ DWD organisations. We continue to have a close relationship with Palliative Care Tasmania through membership of their Partners in Palliative Care Stakeholders Reference Group. And we are grateful to the Kingborough Council for their positive and proactive approach to matters of death and dying through events and sponsorship. We would like to hear from you about initiatives in your community that promote – or have the potential to promote - VAD awareness.
The recent media coverage of the plight of “Marion” illustrates the need for scrapping the residency requirements in all Australian VAD legislations. “Marion” had lived in WA for most of her life, resettled in Tasmania for a decade, then went back to WA for a visit while preparing to return to live there again. While there, “Marion” fell so ill that she would qualify for VAD in WA, where she wants to die, except for the residency requirement. She is now too ill to travel back to Tasmania, and fears that VAD won’t be available for her.
Doing away with the residency requirement is one of the issues we will be working towards for the Review of our VAD legislation next year. There are a number of areas where we think the Act can be improved and we will keep you informed via our Newsletters as we develop our Review priorities and positions over the next year.
Hilde Nilsson
President DWDTas
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DEMENTIA AND ACCESS TO VOLUNTARY ASSISTED DYING - Robyn Maggs, Vice President
The most frequently asked questions about voluntary assisted dying relate to the much-feared disease of dementia. I joined the National DWD Dementia Working Group, as the Tasmanian representative, to see if we could find a way for dementia sufferers to access voluntary assisted dying. Our Report concluded that removal of the six and twelve-month prognosis would be the most effective way to allow voluntary assisted dying for a person with dementia.
Surprisingly, we moved away from the Canadian model, as their previously strong proponents of Advance Care Directives and Waivers of Final Consent no longer felt they were helpful in dementia sufferers accessing voluntary assisted dying. The removal of time-to-death (prognosis) restrictions from our Tasmanian legislation (most doctors share our concerns about the difficulties surrounding prognosis) would remove the major barrier, as long as the dementia sufferer still had decision-making capacity. There is often the assumption that when dementia is diagnosed, capacity has been lost. However, “VAD capacity” (not the capacity to dress oneself or even to speak) would still exist at the levels of “mild dementia” and "moderate dementia".
There will be much discussion to come, but as a first step, this is the Summary of the National Dementia Working Group Report, with a link to the very informative full Report immediately below:
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VOLUNTARY ASSISTED DYING AND DEMENTIA - REPORT SUMMARY
The national network of Voluntary Assisted Dying (VAD) groups tasked a subgroup to provide advice on the preferred way forward to achieve the choice of VAD for people with dementia. Dementia is the leading cause of death for women in Australia, second overall.
The working group met from January to May 2024.
The legislation in each Australian state and New Zealand has variations, however in each jurisdiction:
- the person must have decision-making capacity in relation to VAD (capacity) at every stage, including when the VAD substance is administered or delivered by the pharmacists;
- the person must have a prognosis of less than twelve months (six in NZ) to live.
These two eligibility criteria combine to mean that a person with dementia is unlikely to be eligible for VAD: by the time a person with dementia is assessed as having less than twelve months (or 6) to live they have usually lost capacity.
The legislation in overseas jurisdictions which permit VAD for a person with dementia was reviewed. Particular emphasis was placed on provisions in the Canadian legislation which, since commencement in June 2016, have always allowed a person with dementia to access Medical Assistance in Dying (MAiD). In addition, amendments in 2021 provide for a ‘waiver of final consent’ which allows a person who has been assessed as eligible for MAiD to set a date with their MAiD provider for the procedure. If the person loses capacity, MAiD can proceed on that date. Canada was chosen because it has a similar choice of self or practitioner administration, and a comparable social, cultural and political environment.
In most public forums, people assume that VAD can be requested through an Advance Care Directive (or similar). This is incorrect. The ACD comes into effect only when the person loses capacity; and the person requesting VAD must have capacity at every stage of the process. Only the person themselves can request VAD and undertake the assessment process.
The working group’s research on the operation of VAD in Canada and the Netherlands revealed that there is a reluctance on the part of VAD-trained doctors or nurse practitioners to proceed with VAD once a person loses capacity. After more than two decades in the Netherlands, 2.5% of VAD deaths are by a person with dementia, and perhaps two or three VAD deaths a year are by a person who has lost capacity. In 2020, 170 people in the Netherlands with dementia used VAD (1.2% of dementia deaths). Numbers in Canada are similar. Discussion with VAD providers in Australia confirmed a similar anticipated outcome. The working group concluded that advocacy for VAD to proceed after a person has lost capacity, even if successful, would have a limited benefit given the clear reluctance of VAD practitioners to proceed.
As VAD practitioners become more familiar with the operation of the VAD legislation, it is anticipated that clinician attitudes may change in relation to their willingness to proceed with VAD when a person has lost capacity. Longer-term campaigns should continue in relation to ACDs and the waiver to broaden the access to VAD for a person with dementia.
The six-month prognosis emerged in Oregon as part of the first medically assisted death legislation in the USA. It was included as a criterion because a person became eligible for hospice care funding once they had a prognosis of six months or less. The six-month prognosis was adopted in Australia’s first VAD Act in Victoria, and listed as one of the safeguards. All other states have followed the Victorian model, which added an additional criterion of twelve months for a neurodegenerative disease. Queensland adopted twelve months for all diseases and medical conditions and the New Zealand Parliament chose six months for all diseases and medical conditions.
The working group’s research showed that the six and twelve-month prognosis is the least evidence-based of any of the VAD eligibility criteria. VAD practitioners and Care Navigators refer to the inaccuracy, with different doctors providing different advice on the same person’s prognosis, or no advice at all. The prognosis is seen to have improved accuracy for a person with weeks or years to live; a prognosis between weeks and years is consistently shown to be unreliable, and an unreliable safeguard.
VAD legislation has other more reliable and medically-based criteria which allow an assessing VAD practitioner to confidently assess that the person has a disease, illness or medical condition which will cause their death. Three states include the provision that the disease is incurable.
All states and New Zealand exclude VAD on the grounds of mental illness or disability. New South Wales also excludes VAD for a person with dementia.
The working group is aware that the two states currently reviewing their legislation – Victoria and WA – have shown a reluctance to amend their legislation. A concerted lobbying campaign will be required to achieve any change in VAD legislation at this early stage of VAD implementation.
The working group concluded that removal of the six and twelve-month prognosis would be the most effective way to allow voluntary assisted dying for a person with dementia.
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Dementia: Legislative Barriers to Eligibility for Voluntary Assisted Dying in Australia
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CONGRATULATIONS ACT - Shirley Haas
On 5 June 2024 the ACT Legislative Council (a unicameral system) passed the ACT Voluntary Assisted Dying bill, with a 20 / 5 vote. This was a much smoother passage for the bill than anticipated. Ironically, the Northern Territory (the first place in the world to legalise 'euthanasia' in1995 - subsequently repealed) is now the only Australian jurisdiction not to have a VAD Act).
The ACT VAD scheme will commence after 18 months, on 3 November 2025. To be eligible for VAD, a person must:
- have a medical condition expected to cause death, though no time frame is required
- must be suffering intolerably from the condition (but not if solely from disability or mental illness)
- must have decision-making capacity
- must be resident in ACT or have an exemption
- must have declining quality of life, with treatments not helpful, and be approaching end of life
The removal of the 6-12 month prognosis requirements, which feature in all of the states’ legislation, is a significant achievement - one to be emulated by Tasmania.
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HOW I BECAME A DWDTas COMMITTEE MEMBER - Robyn Maggs
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My work as a clinical psychologist had the feeling of never enough hours in the day. Yet joining a friend for a voluntary assisted dying film in Hobart, led to my becoming, firstly a committee member and then Vice-President, of Dying with Dignity Tasmania.
This was the first time the option of legislation became a reality for me. During my decades of clinical work, when I sometimes supported people with a terminal illness or their families, I only thought of their dreadful suffering in terms of palliative care. The voluntary assisted dying world opened my eyes to an option I wish some of them could have chosen.
In 2019, three years after joining the DWDTas committee, it was with a certain irony that I heard my own news about an aggressive breast cancer. It is a comfort today to know that, if I should get to a stage when I would need it, this option will be available. Even closer to home was the shock of my younger son, Ashton's, dreadful death at a stage when the NSW voluntary assisted dying legislation hadn't been implemented.
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Robyn bonding with an adorable Husky pup!
However, this year brought two very special experiences: a mother/son cruise through Alaska with my elder son, Jason, and joining some remarkable women from other States to work our way through to a potential pathway that would allow dementia sufferers to access voluntary assisted dying.
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IMPORTANT LINKS
AGM GUEST SPEAKER DR KEITH MCARTHUR
Click here to watch the talk
Dr McArthur's talk gives a frank account of VAD progress in Tasmania.
GO GENTLE WEBSITE
Voluntary Assisted Dying Conference 2024
DEMENTIA: LEGISLATIVE BARRIERS TO ELIGIBILITY FOR VOLUNTARY ASSISTED DYING IN AUSTRALIA
Click here to access the full Report
(as noted above)
ACCESSING VAD IN TASMANIA
VAD Flowchart Link
This flowchart is a simplified reference for DWDTas Members to understand the steps required to access the Tasmanian End of Life Choices (Voluntary Assisted Dying) Act 2021.
TASMANIAN DEPARTMENT OF HEALTH NAVIGATION SERVICE
Navigation Service for Voluntary Assisted Dying | Tasmanian Department of Health
This service provides a central point of contact for information and support about voluntary assisted dying, and is available to patients, families and carers, health practitioners and healthcare workers. The VAD Navigator Hotline is 1800 568 956 (Mon-Fri 9-5)
DWD VICTORIA'S GRIEFLINE
Griefline Get Help Link
DWDV has agreed to provide this service to people at different stages of the VAD journey
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PLEASE CONTACT US
Please contact us via our phone number (0409 992 665) or email dwdtas@outlook.com
- for more information
- to provide feedback on our Newsletter
- with suggestions for Newsletter content
- or with any other relevant matter.
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