I call it a big, crazy idea.
And it is.
I’m walking across Australia to honour my mum and draw attention to the urgent need for Voluntary Assisted Dying laws in Western Australia.
I am leaving Melbourne on Tuesday 28 May and will journey 4,500 kilometres to Perth.
My aim is to mobilise support along the way from the 90% of Australians who are in favour of assisted dying − and most importantly to encourage Western Australians to contact their local MPs to urge them to act.
To succeed I need your support. If you’re in Melbourne or nearby, I’d love you to be at Parliament House to see me off. If not, I can also meet you along the way to hear your stories and share my experiences.
Click here to register and find out when I will be in your area.
For my mum
My mum Mareia was a patient with terminal breast cancer in Perth in 2016. She twice requested help to die on her own terms, but was refused.
Her request was denied because this kind of medical assistance is illegal in Western Australia. She went on to die in a way that she did not want to: devoid of dignity.
It was a horrific death that even the best of modern medicine and caring specialists could not save her from. I don’t want her suffering to be in vain.
Roses were Mum’s favourite flower. I will complete the walk holding a white rose. It’s my way of taking mum with me on the journey.
A big issue requires a big response
I need your help. Nothing is going to change in Western Australia regarding assisted dying unless people like you and me communicate to our politicians, emphatically, that we won’t stand for the status quo any longer.
I’m setting off from Melbourne because Victoria is the only state where assisted dying is soon to be legal (the state’s Voluntary Assisted Dying law comes into effect on 19 June this year).
I will arrive in Perth ahead of a vote in the Western Australian parliament on an assisted dying bill.
I hope my walk inspires people in Western Australia to take action and let their MPs know there is huge community support for this change.
I’ll keep you updated on my progress. If you want to know if I’ll be in your local area, please update your details with your postcode.
Your backing will help convince MPs that terminally ill Western Australians want access to a safe and workable Voluntary Assisted Dying law.
- Belinda Teh
The Western Australian Government's $206 million commitment to palliative care services in today's 2019/20 Budget shows it is possible to support palliative care and also commit to a Voluntary Assisted Dying (VAD) law.
The funding includes a record $47.2 million spend in 2019/20 and $41 million towards an end-of-life choices and palliative care package across the State. An extra $5 million will go towards a purpose-built 38-bed residential aged and palliative care facility in Carnarvon and there is a 74 per cent boost to palliative care in the regions.
"Today's announcement is a smart and compassionate one for supporting people in palliative care," said Go Gentle Australia's CEO, Kiki Paul.
"Go Gentle Australia welcomes the funding that will take Western Australia a step closer to best-practice care for people at the end of their life.
"But not all suffering can be relieved by palliative care at the end of life," said Ms Paul. "So best practice can only be achieved when terminally ill people who are suffering intolerably are also given the option of Voluntary Assisted Dying − to die on their own terms when their suffering has become too much."
Go Gentle Australia has long advocated for a funding boost for palliative care services in conjunction with the legalisation of VAD. Comprehensive and rigorous international research shows the two are complementary.
A 2018 Palliative Care Australia report by Aspex Consulting on the international experience of the impact of VAD laws found "no evidence to suggest that the palliative care sectors were adversely impacted by the introduction of the legislation. If anything, in jurisdictions where assisted dying is available, the palliative care sector has further advanced". (p5)
Ms Paul said today's commitment from the WA government proved that fears of an adverse impact on the Australian palliative care sector from VAD were unwarranted.
"This is a significant step in the right direction. We hope it will be mirrored by Members of Parliament later this year when they are asked to vote on legislation that allows terminally ill people with a limited life expectancy to die on their own terms and at the time of their choosing," she said.
A ministerial expert panel helping to shape voluntary assisted dying legislation in Western Australia has released a discussion paper and called for public comment.
The 13-member panel will hold public consultation sessions in Perth and regional centres during April and May 2019. Those who cannot attend can submit written comments up until 24 May.
“Go Gentle urges anyone with an interest in this legislation to submit their comments. 88% of Western Australians support a voluntary assisted dying law, and it’s essential they have their say on what the future law will look like,” said Go Gentle WA Campaign Manager, Joey Armenti.
Parliament is expected to begin debate on the bill in the second half of this year.
Minister for Health Roger Cook said the aim of the discussion paper was to assist the development of workable legislation, not to argue for or against voluntary assisted dying.
He described the consultation as a vital step in the progress of a law that would “help ensure the legislation [has] appropriate safeguards for all involved and is world’s best practice.”
If enacted, WA would become the first Australian state to pass an assisted dying law following Victoria’s landmark Voluntary Assisted Dying Act in 2017. The Victorian law takes effect in June this year.
Attending the discussion paper’s release was southern Perth resident Margo Beilby, whose husband Michael chose to end his life in 2013 by swallowing an illegal lethal drug he had ordered online.
The 73-year-old had been suffering from Chronic Obstructive Pulmonary Disease (COPD), a serious lung condition, and from Parkinson’s disease. “I might as well die peacefully and I don’t want to be hospitalised again,” the grandfather said in a final video message.
“His doctors had told him there was nothing they could do to cure him. In fact, his specialist … said that ‘if he was lucky’ he would get pneumonia and die relatively quickly,” Margo said.
"He was worried about me being charged with being there − he wanted me to go off shopping and come home and find him dead," she told reporters.
"I said after 51 years of marriage I wasn't going to let him die on his own.”
Among the issues canvassed in the discussion paper are eligibility criteria, safeguards and the logistics surrounding the request and provision of assistance to die.
Under the proposed eligibility criteria, access to voluntary assisted dying would be limited to:
- Australian citizens aged 18 years or over who are ordinarily resident in WA
- Those who have the capacity to make an informed decision, free from coercion
- Are diagnosed with an illness or disease that is terminal, chronic or neurodegenerative, and that will cause death in the reasonably foreseeable future
- Are experiencing grievous, ongoing and irremediable suffering.
Led by Queen’s Counsel and former WA Governor, Mr Malcolm McCusker AC, the Expert Panel comprises leaders from key sectors of the WA community including medicine, palliative care, aged care, law, disabilities, human rights and indigenous affairs.
“Throughout the consultation period, the panel will listen carefully, and always respectfully, to differing views, comments and suggestions,” Mr McCusker said.
The call for public comment follows a year-long parliamentary inquiry that received 730 submissions and held 81 public hearings.
In its final report My Life, My Choice, the inquiry committee said voluntary assisted dying should be an option for people experiencing "grievous and irremediable suffering" from a progressive, terminal, chronic or neurodegenerative condition.
View the discussion paper here.
Find information on public consultation sessions here.
Comments on the discussion paper can be lodged via:
Welcome to our first Newsletter for 2019. You’ll notice some changes in the way we communicate over the coming months as we gear up for a crucial – and promising – year ahead for better end-of-life choices, including voluntary assisted dying (VAD).
We’ve changed our schedule to send the newsletter quarterly rather than monthly. If major news breaks, or if we need your help urgently, we will be in touch with shorter emails and calls to action.
The WA campaign
Much of our focus is on Western Australia. Last year, a cross-party parliamentary committee recommended WA follow Victoria’s lead and legalise VAD for patients suffering from a terminal illness.
An expert panel of health professionals, health consumers and legal experts, led by Queens Council and former Governor Malcolm McCusker AC, is now helping to draft a Bill to create a safe and compassionate framework for voluntary assisted dying in Western Australia.
The Bill will be tabled later this year. Like Victoria's law, we anticipate it will provide strong safeguards and a sensible, workable system to help limit suffering at the end of life. Our friends at Dying with Dignity WA are doing an excellent job getting the word out.
Of course, we know that no matter how well the legislation is drafted (and how many safeguards are put in place) opponents will mount the same kind of dishonest fear campaign they ran in Victoria and elsewhere. Their aim will be to plant doubt in the minds of Members of Parliament and the community. We must combat these tactics and not let their noise drown out the voices of the overwhelming majority of Australians who support this reform.
We are planning a major public event in Perth this year and, as in Victoria, success is going to require a community to step forward. We need as many Western Australians as possible to join us.
Progress in Queensland
The other big news is from Queensland, where we have another historic opportunity to have a say on VAD law reform. In February, the Palaszczuk government released an Issues Paper as part of Queensland’s first ever Parliamentary Inquiry into voluntary assisted dying. The Inquiry is seeking public submissions, which must be lodged by 15 April, so get cracking! Anyone can have their say – as long as you are an Australian citizen. Go to our website for tips on how to put a submission together. Or if you prefer, go directly to the Queensland parliament website.
NSW goes to the polls
The NSW election is on Saturday 23 March and that means a new parliament and a potential opportunity to introduce a new voluntary assisted dying Bill, perhaps by the end of the year. We are cautiously confident that the new parliament will be more supportive of VAD but to make sure it's critical for voters to find out which political candidates' views on end-of-life care align with yours. Do they support voluntary assisted dying laws? Each election campaign, Dying with Dignity NSW canvasses candidates about VAD and publishes their responses. Keep an eye on their website for updates.
Go Gentle is growing!
More exciting news is that Go Gentle is expanding. We have moved into new offices and tripled our staff (from 1 to 3!). We also have a new team in place on the ground in WA to coordinate campaign efforts as that state moves closer to introducing a Bill to legalise voluntary assisted dying.
Save the date
|23 March||NSW election|
|1−5 April||National Advance Care Planning Week|
|15 April||Deadline for public submissions to Qld inquiry|
Vale Jenny Barnes
Finally, many of you will have seen the news that Jenny Barnes, a nurse who campaigned tirelessly for Victoria’s voluntary assisted dying law, died in early January.
Although seriously ill with a brain tumour, Jen (accompanied by husband Ken) sat through many hours of the parliamentary debates, a silent reminder to MPs of who these laws were for. Her tenacity and compassion for others were inspirational. She died in no pain and with the best of care. All of us at Go Gentle are grateful to have known her. We send our love to Ken and family.
She will be greatly missed.
Go Gentle Australia is a registered charity. All donations over $2 are tax deductible.
Public submissions are open to the Queensland parliamentary inquiry into the delivery of aged care, end of life and palliative care.
The inquiry is seeking submissions from Queenslanders and other Australians. The deadline for written contributions is 15 April, while oral submissions at public hearings will commence in late March.
Aaron Harper, Chair of the Parliament’s Health Committee, urged Queenslanders and other interested Australians to have their say.
“We want to hear from everyone who has concerns about the adequacy and dignity of aged care provided now to our most vulnerable older citizens," Mr Harper said.
“We are looking at three of the biggest issues that will affect the lives of all Queenslanders – care when we age, care if we become terminally ill, and having a choice in how and when we die.”
For the first time in Queensland, the Committee will canvass the need for a voluntary assisted dying law. The process is similar to the Victorian Inquiry into End of Life Choices that resulted in the passing of the Voluntary Assisted Dying Act in 2017.
Go Gentle Australia welcomes the process and urges anyone with an interest in end-of-life care – and particularly voluntary assisted dying – to make a submission.
The Committee has published an issues paper to explain the inquiry's scope and how to get involved.
Writing a submission is easier than you think
We have put together some prompts to help you gather your thoughts. We don't want to tell you what to write – 'copy and paste' submissions carry less weight. It is important to write an individual submission, use your own words and speak from the heart. Below are some tips that may help.
Tell the committee:
- Why you feel strongly about Voluntary Assisted Dying laws;
- Why you should be able to make your own decisions about health care at the end of life;
- You would like the government to draft and put forward a Bill.
“We urge you to share this message with your friends and networks and ask them to consider making a submission," says Go Gentle CEO Kiki Paul.
“We need as many voices as possible to speak up. We need to make sure supporters of assisted dying are the loud majority when the committee comes to collate the responses.
“Make no mistake, opponents of these laws will be writing multiple submissions. Don’t let them drown out the voices of the overwhelming majority of Australians who support these reforms.”
Go Gentle Australia strongly supports Western Australian Senator Jordon Steele-John’s call for a royal commission into the mistreatment of people with disabilities.
Just as Victoria’s voluntary assisted dying law will shine a light on practices in treating vulnerable people, so a royal commission will do the same for Australians living with a disability.
As a compassionate and caring society, it is time to properly investigate allegations of abuse in this sector and move towards ending the pain, suffering and fear of those facing abuse instead of care.
Go Gentle Australia urges the Parliament not just to vote for a royal commission but to bring it into existence.
Andrew Denton, Director, Go Gentle Australia
Media contact: Steve Offner, 0468 464 360
Nurse Jenny Barnes, who campaigned tirelessly for Victoria’s voluntary assisted dying law, died on Sunday. Although seriously ill with a brain tumour, Jen (accompanied by Ken) sat through many hours of the parliamentary debates, a silent reminder to MPs of who these laws were for. Her tenacity, and compassion for others, was inspirational. She died in no pain and with the best of care. All of us at Go Gentle are grateful to have known her. We send our love to her husband Ken and her family.
2018 has been a busy year. We want to thank you for your ongoing efforts to help create better conversations around end of life choices.
Your voting in Victoria helped safeguard the Voluntary Assisted Dying Act 2017 and this law will come into effect on 19 June 2019.
Your continuous pressure on the Queensland government resulted in an Inquiry into Aged Care, End-of-Life and Palliative Care, which is due to report on 30 November 2019. The committee will be calling for submissions early next year. If you are interested, you can register as a stakeholder here and receive regular updates.
You also generously supported our work financially, for which we are deeply grateful. A special thank you goes out to our regular donors whose monthly contributions make a significant difference.
Our focus for next year will be on Western Australia, where the Government has appointed an expert panel to help draft a Voluntary Assisted Dying Bill. Former WA governor Malcolm McCusker QC will chair the team of eleven experts in the areas of aged care, medicine and law. A bill is expected around the middle of the year.
While the support for a better end of life choice for the most vulnerable in our society, the terminally ill, continues to grow, this does not mean a Voluntary Assisted Dying bill will easily pass. 2019 will be an opportunity to create some real momentum if a bill passes in Western Australia, but we need your help.
Help change the mind of a legislator by sharing your story. Personal testimonies, like the one from Sian Briggs about her father's death, clearly illustrate the need for legislation. If you would like to speak to someone who can help you write or tell your story, please contact us via firstname.lastname@example.org or 0468 464 360 (Mon-Fri 9-5 AEST). You can also reach us via Facebook Messenger, WhatsApp or send an SMS. You can also share it via our secure website.
Ask a friend to sign up to our newsletter and help spread the word.
We do not receive any government funding and entirely rely on donations. Any amount over $2 is tax deductible.
Last but not least, we wish you a holiday season filled with love, family and friends and best wishes for the new year.
Thank you for your ongoing support.
PS Our office will reopen on Monday 7 January.
Go Gentle Australia is a registered charity. All donations over $2 are tax deductible.
Saturday's massive endorsement of the Andrews’ Government progressive social policies could not have been more significant for VAD reform in Australia.
It shattered, once and for all, the myth propagated by Right to Life and others, that VAD is electoral poison. The fact that some of the largest swings to Labor occurred in the four seats targeted by DWD Vic in their ‘nomoredebate’ campaign suggests the opposite.
The Victorian law will now operate - as intended - for 4 years. In so doing, it will show our opponents' fear campaign up for what it is: Misinformation deliberately designed to derail political support for a compassionate law supported by 80% of Australians.
The eventual effect on the rest of Australia will, I believe, be significant as long as there is a determination from principled politicians to pursue evidence-based policy-making.
I do believe (as the US has shown) that we will always have to remain vigilant against threat of repeal. That is why a win in WA is so important. It spreads the risk and reinforces the need.
I hope the growing army of VAD supporters around Australia take great heart from Saturday’s result. I urge you all to renew your efforts within your community. In particular, by approaching your local MP and raising the subject within the medical profession whenever the opportunity arises.
Victoria’s law happened because enough people of principle stood up for those too ill to stand up for themselves.
Today we stand taller.
Please, invite someone to join you.
With just over a week to go, here's a quick overview of how the Victorian MPs voted on the matter of the Voluntary Assisted Dying Bill 2017.
In November 2017, Victoria was the first state to pass Voluntary Assisted Dying legislation, which was the result of a year long enquiry, followed by an Expert Ministerial Advisory Panel and more than 100 hours of parliamentary debate.
Legislative Assembly - YES
|Jacinta Allen||Australian Labor Party||Bendigo East|
|Daniel Andrews||Australian Labor Party||Mulgrave|
|Louise Asher||Liberal Party||Brighton|
|Roma Britnell||Liberal Party||South-West Coast|
|Joshua Bull||Australian Labor Party||Sunbury|
|Benjamin Carroll||Australian Labor Party||Niddrie|
|Christine Couzens||Australian Labor Party||Geelong|
|Liliana D'Ambrosio||Australian Labor Party||Mill Park|
|Stephen Dimopoulos||Australian Labor Party||Oakleigh|
|Luke Donnellan||Australian Labor Party||Narre Warren North|
|Paul Edbrooke||Australian Labor Party||Frankston|
|Janice (Maree) Edwards||Australian Labor Party||Bendigo West|
|Martin Foley||Australian Labor Party||Albert Park|
|Jane Garrett||Australian Labor Party||Brunswick|
|Judith Graley||Australian Labor Party||Narre Warren South|
|Danielle Green||Australian Labor Party||Yan Yean|
|Bronwyn Halfpenny||Australian Labor Party||Thomastown|
|Jill Hennessy||Australian Labor Party||Altona|
|Samuel Hibbins||Victorian Greens||Prahran|
|Geoffrey Howard||Australian Labor Party||Buninyong|
|Natalie Hutchins||Australian Labor Party||Sydenham|
|Emma Kealy||The Nationals||Lowan|
|Sonya Kilkenny||Australian Labor Party||Carrum|
|Sharon Knight||Australian Labor Party||Wendouree|
|Telmo Languiller||Australian Labor Party||Tarneit|
|Hong Lim||Australian Labor Party||Clarinda|
|Frank McGuire||Australian Labor Party||Broadmeadows|
|David Morris||Liberal Party||Mornington|
|Donato Nardella||Australian Labor Party||Melton|
|Lisa Neville||Australian Labor Party||Bellarine|
|Wade Noonan||Australian Labor Party||Williamstown|
|Martin Pakula||Australian Labor Party||Keysborough|
|Timothy Pallas||Australian Labor Party||Werribee|
|Brian Paynter||Liberal Party||Bass|
|Daniel Pearson||Australian Labor Party||Essendon|
|Jude Perera||Australian Labor Party||Cranbourne|
|Ellen Sandell||Victorian Greens||Melbourne|
|Robin Scott||Australian Labor Party||Preston|
|Rosalind Spence||Australian Labor Party||Yuroke|
|Nick Staikos||Australian Labor Party||Bentleigh|
|Louise Staley||Liberal Party||Ripon|
|Mary-Anne Thomas||Australian Labor Party||Macedon|
|Marsha Thomson||Australian Labor Party||Footscray|
|Vicki Ward||Australian Labor Party||Eltham|
|Gabrielle Williams||Australian Labor Party||Dandenong|
|Richard Wynne||Australian Labor Party||Richmond|
Legislative Assembly - NO
|Neil Angus||Liberal Party||Forest Hill|
|Bradley Battin||Liberal Party||Gembrook|
|Gary Blackwood||Liberal Party||Narracan|
|Elizabeth Blandthorn||Australian Labor Party||Pascoe Vale|
|Timothy Bull||The Nationals||Gippsland East|
|Neale Burgess||Liberal Party||Hastings|
|Anthony Carbines||Australian Labor Party||Ivanhoe|
|Robert Clark||Liberal Party||Box Hill|
|Peter Crisp||The Nationals||Mildura|
|Martin Dixon||Liberal Party||Nepean|
|John Eren||Australian Labor Party||Lara|
|Christine Fyffe||Liberal Party||Evelyn|
|Michael Gidley||Liberal Party||Mount Waverley|
|Matthew Guy||Liberal Party||Bulleen|
|David Hodgett||Liberal Party||Croydon|
|Marlene Kairouz||Australian Labor Party||Kororoit|
|Andrew Katos||Liberal Party||South Barwon|
|Timothy McCurdy||The Nationals||Ovens Valley|
|Lucinda McLeish||Liberal Party||Eildon|
|James Merlino||Australian Labor Party||Monbulk|
|Russell Northe||The Nationals||Morwell|
|Daniel O'Brien||The Nationals||Gippsland South|
|Michael O'Brien||Liberal Party||Malvern|
|John Pesutto||Liberal Party||Hawthorn|
|Timothy Richardson||Australian Labor Party||Mordialloc|
|Richard Riordan||Liberal Party||Polwarth|
|Deanne Ryall||Liberal Party||Ringwood|
|Stephanie Ryan||The Nationals||Euroa|
|Ryan Smith||Liberal Party||Warrandyte|
|Timothy Smith||Liberal Party||Kew|
|David Southwick||Liberal Party||Caulfield|
|Natalie Suleyman||Australian Labor Party||St Albans|
|Murray Thompson||Liberal Party||Sandringham|
|William Tilley||Liberal Party||Benambra|
|Heidi Victoria||Liberal Party||Bayswater|
|Nicholas Wakeling||Liberal Party||Ferntree Gully|
|Peter Walsh||The Nationals||Murray Plains|
|Graham Watt||Liberal Party||Burwood|
|Kim Wells||Liberal Party||Rowville|
Legislative Council - YES
|Bruce Atkinson||Liberal Party||Eastern Metropolitan|
|Philip Dalidakis||Australian Labor Party||Southern Metropolitan|
|Samantha Dunn||Victorian Greens||Eastern Metropolitan|
|Khalil Eideh||Australian Labor Party||Western Metropolitan|
|Mark Gepp||Australian Labor Party||Northern Victoria Regon|
|Colleen Hartland||Victorian Greens||Western Metropolitan|
|Gavin Jennings||Australian Labor Party||South-Eastern Metropolitan|
|Shaun Leane||Australian Labor Party||Eastern Metropolitan|
|Cesar Melham||Australian Labor Party||Western Metropolitan|
|Jenny Mikakos||Australian Labor Party||Northern Metropolitan|
|Edward O'Donohue||Liberal Party||Eastern Victoria|
|Fiona Patten||Australian Sex Party||Northern Metropolitan|
|Susan Pennicuik||Victorian Greens||Southern Metropolitan|
|Jaala Pulford||Australian Labor Party||Western Victoria|
|James Purcell||Vote 1 Local Jobs||Western Victoria|
|Simon Ramsay||Liberal Party||Western Victoria|
|Samantha Ratnam||Victorian Greens||Northern Metropolitan|
|Harriet Shing||Australian Labor Party||Eastern Victoria|
|Nina Springle||Victorian Greens||South-Eastern Metropolitan|
|Jaclyn Symes||Australian Labor Party||Northern Victoria|
|Gayle Tierney||Australian Labor Party||Western Victoria|
|Mary-Anne Wooldridge||Liberal Party||Eastern Metropolitan|
Legislative Council - NO
|Melina Bath||The Nationals||Eastern Victoria|
|Jeffrey Bourman||Shooters &Fishers Party||Eastern Victoria|
|Rachel Carling-Jenkins||Democratic Labour Party||Western Metropolitan|
|Georgina Crozier||Liberal Party||Southern Metropolitan|
|Richard Dalla-Riva||Liberal Party||Eastern Metropolitan|
|David Davis||Liberal Party||Southern Metropolitan|
|Nazih Elasmar||Australian Labor Party||Northern Metropolitan|
|Bernard Finn||Liberal Party||Western Metropolitan|
|Margaret Fitzherbert||Liberal Party||Southern Metropolitan|
|Wendy Lovell||Liberal Party||Northern Victoria|
|Joshua Morris||Liberal Party||Western Victoria|
|Daniel Mulino||Australian Labor Party||Eastern Victoria|
|Craig Ondarchie||Liberal Party||Northern Metropolitan|
|Luke O'Sullivan||The Nationals||Northern Victoria|
|Inga Peulich||Liberal Party||South-Eastern Metropolitan|
|Gordon Rich-Phillips||Liberal Party||South-Eastern Metropolitan|
|Adem Somyurek||Australian Labor Party||South-Eastern Metropolitan|
|Daniel Young||Shooters & Fishers Party||Northern Victoria|