Submissions now open to SA's End of Life inquiry

Public submissions are being sought by South Australia’s parliamentary inquiry into End of Life Choices.

Submissions are not restricted to South Australian residents and must be received by 1 August.

"Go Gentle Australia believes anyone with an interest in end-of-life care and more compassionate choices at the end of life should have their say," CEO Kiki Paul said. 

“It is important that everyone who supports assisted dying for terminally ill South Australians makes a submission by the 1st of August deadline. 

“The committee will be interested in personal testimonies and relevant thoughts on why South Australia should follow Victoria’s lead and introduce a safe and workable assisted dying law," she said.

The inquiry comes almost three years after a Death with Dignity Bill was defeated in the South Australian Parliament by one vote.

The private member's bill was aimed at people suffering from a terminal condition, and included strong, clear safeguards to protect the vulnerable.

It initially passed a second reading stage where a conscience vote was tied at 23 votes for and against. The then speaker Michael Atkinson then used his casting vote to decide against the bill and end the debate.

Frances Coombe, the President of the South Australian Voluntary Euthanasia Society (SAVES) described the Bill’s defeat at the time as “marred by general obstructionism, nitpicking, and fear mongering”.

The current SA joint house committee was appointed in April to inquire into and report on:

(a) The practices currently being utilised within the medical community to assist a person to exercise their preferences for the way they manage their end of life when experiencing chronic and/or terminal illnesses, including the role of palliative care;

(b) The current legal framework, relevant reports and materials in other Australian states and territories and overseas jurisdictions, including the Victorian and Western Australian Parliamentary Inquiries into end-of-life choices, Victoria’s Voluntary Assisted Dying Act (2017) and implementation of the associated reforms;

(c) What legislative changes may be required, including consideration of: The appropriateness of the Parliament of South Australia enacting a Bill in similar terms to Victoria’s Voluntary Assisted Dying Act (2017); and an examination of any federal laws that may impact such legislation.

(d) Any other related matter.

Submissions must be received by Thursday, 1 August 2019. They can be of any format and length and can be emailed to the Secretariat using the following email address jcendoflifechoices@parliament.sa.gov.au

or posted to the Secretary to the Committee, C/- Parliament House, GPO Box 572, Adelaide 5001.

For more information on the makeup of the committee and the inquiry’s terms of reference, go to the SA Govt’s End of Life Choices web page  or view them here.

 


VALE Dorothy Reading

For many years before Victoria’s Voluntary Assisted Dying law became reality, there were committed people working − often in the face of bitter disappointment − to see compassion triumph over dogma in that State.

One of those was Dorothy Reading, whose gentle manner belied her fierceness as a political and social warrior. Dorothy passed away suddenly on Tuesday.

We wish to mark Dorothy's passing and to salute her dedication to reducing needless suffering at the end of life. Suffering created largely by the zealotry and studied ignorance of vested interests claiming to be acting for the good of others.

As the founder of Readings Books and through her service to community health, particularly to people with cancer, Dorothy spoke truth to power. We are so glad that she lived to see that truth be heard.

Our sympathies go to Peter and family.

(photo courtesy Ilana Rose ©)


Go Gentle calls on Catholic Church to show moral leadership and recall misleading advertisement

Go Gentle Australia has been made aware of a grossly misleading advertisement circulating on social media and published by the Catholic Archdiocese in Sydney. 

The video ad, Debate On Euthanasia Laws, misrepresents statistics around euthanasia in Belgium.

It appears on Archbishop Anthony Fisher’s Facebook page and a Vimeo channel run by the Archdiocese of Sydney, and is likely part of a series.

The ad falsely asserts that statistics in a 2010 Belgium study relate to Voluntary Assisted Dying when in fact they relate to palliative sedation, sometimes referred to as non-voluntary terminal sedation, a common practice in palliative care.

The ad fails to mention the study’s conclusions that the introduction of a Voluntary Assisted Dying law in Belgium in 2002 resulted in a fall in the rate of non-voluntary terminal sedation.

“Go Gentle Australia is concerned that the Catholic Church is using its position to spread misleading information about Voluntary Assisted Dying and euthanasia in the lead up to Victoria’s implementation of a landmark Voluntary Assisted Dying law on the 19th of June,” said Go Gentle Australia’s CEO, Kiki Paul.

The ad

The 30-second video graphic opens with the line: “On 19 June, euthanasia and assisted suicide will begin in Victoria, how long will it take for Victoria to look like Belgium?”.

It then grossly misrepresents Belgian statistics on euthanasia, claiming “1 person is euthanised every 3 days without their explicit consent and in more than 75% of the cases, the decision was not discussed with the patient”.

The statistics used in the ad are drawn from a 2010 academic study ‘Physician-assisted deaths under the euthanasia law in Belgium’ (Chambaere K et al.)

Despite the ad’s assertions, this study is NOT about Voluntary Assisted Dying nor Voluntary Euthanasia.

In reality, it investigates terminal sedation (sometimes referred to as palliative sedation or non-voluntary euthanasia), the practice of alleviating refractory suffering in patients by sedating them into a coma from which it is expected they will never awake.

It is a standard practice in palliative care, as AMA (WA) President Dr Omar Khorshid admitted in July 2018, when he told Channel 7 News that doctors routinely hasten death: “We [doctors] shorten patients’ lives regularly if that’s the right thing to do at the very end of life”.

The Victorian Parliamentary Inquiry report (2016) into end-of-life care found terminal sedation to be widely practised in Australia, but it is:

"… not centrally recorded, the extent of its use is unknown, and no guidelines exist to regulate it."

This lack of transparency around terminal sedation is one of the reasons why Go Gentle Australia and others argue that a Voluntary Assisted Dying law is needed, so that the practice is brought out of the shadows.

GGA’s Ms Paul said: “The ad is completely misleading and highly inappropriate in the lead up to the implementation of Victoria’s assisted dying law and a coming debate in the Western Australian parliament about proposed Voluntary Assisted Dying legislation.

“These issues were extensively canvassed and found to be untrue in the both the Victorian and WA inquiries into voluntary assisted dying and in debates in the Victorian parliament which resulted in Victoria supporting the law.

“Terminally ill Australians in the final weeks of life deserve better from the Catholic Church.

“Go Gentle calls on Archbishop Fisher and the Sydney Archdiocese to show some moral leadership and immediately remove the misleading ad from circulation on their sites,” Ms Paul said.

More information: A forensic analysis of the deception at the centre of the Belgium study claims, written by assisted dying advocate Neil Francis, can be found here.

And a comprehensive explanation of assisted dying in Belgium, 'Separating fact from fiction about euthanasia in Belgium' by the author of the 2010 study himself, Professor Kenneth Chambaere, can be found on The Conversation website. 

Media Contact: Steve Offner 0426 283 865 media@gogentleaustralia.org.au

Facts from the 2010 study

1. The study’s authors concluded that rates of Non-Voluntary Euthanasia fell after Voluntary Assisted Dying was legalised in in Belgium in 2002.

“[Non-Voluntary Euthanasia’s] occurrence has not risen since the legalisation of euthanasia in Belgium”.

“On the contrary, the rate dropped from 3.2% in 1998 to 1.8% in 2007. In [neighbouring] the Netherlands, the rate dropped slightly after legalization, from 0.7% to 0.4%”.

2. The authors also found that the cases of Non-Voluntary Euthanasia in the study “in reality resemble[d] more intensified pain alleviation … and death in many cases was not hastened”.

 


Go Gentle urges truthful debate on voluntary assisted dying

Go Gentle Australia has called for a more reasoned and evidence-based debate around voluntary assisted dying laws in the wake of inaccurate news reports of the death of Dutch teenager Noa Pothoven and inflammatory comments from the WA Australian Medical Association (AMA WA). 

The AMA described Noa Pothoven’s death in the Netherlands as evidence of a “slippery slope” and falsely claimed the girl died as a result of euthanasia. 

Australian and international news outlets published inaccurate reports of the death of Ms Pothoven, apparently based on a story by the newswire Central European News, which has a history of supplying unconfirmed articles.

“There is no evidence the Dutch teenager’s death involved either euthanasia or assisted dying – in fact she was refused assisted dying,” Ms Paul said.

“It is ironic that the way Noa Pothoven died − refusing food and drink and being placed in an induced coma − has so outraged groups such as the AMA given it is the very activity of palliative sedation that happens in WA right now.”

Ms Paul also criticised the language used by AMA WA president Omar Khorshid.

The West Australian newspaper quoted Dr Khorshid as saying. “The AMA has been very concerned about the potential for a slippery slope. The Netherlands shows this is a very dangerous step for society to take.” 

Ms Paul said Dr Khorshid’s use of the term ‘slippery slope’ is a tactic intended to create fear and doubt.

“As reported by both the Parliamentary Inquiries into End of Life Choices in Victoria and Western Australia, there is absolutely no credible evidence from any jurisdiction in the world with voluntary assisted dying laws of a slippery slope of unintended consequences.

“As an evidence-based professional body, the AMA should know better than to perpetuate a thoroughly debunked myth,” Ms Paul said.

Media contacts:

Steve Offner 0426283 865 media@gogentleaustralia.org.au

Joey Armenti GGA WA Campaign Manager 0438 948 172


I started walking a week ago and was scared. I shouldn't have been

I have a confession to make: I was wrong. 

And I'm so glad I was.

One week ago when I started walking, I was scared that people would judge my mum, and judge me.

I expected criticism, scepticism and negative mail. To be booed off the steps of Parliament House and told to sit in a corner where I belong.

Instead, the opposite has happened.

In the past 7 days, Australians from around the country have left me speechless with their support and solidarity.

The encouraging letters, emails and messages have become so numerous that I'm struggling to reply to them all. Complete strangers have shown up along my route to cheer me on, to give me hugs, and buy me hot chocolate. 

In Victoria, the Premier, Attorney General, Health Minister and other community leaders stood with me and stated that they, and the people they represent, are with me every step of the way. 

Most importantly, people are now sharing their own stories of how family members have died in a way that they find unacceptable due to the lack of an assisted dying law, and they want things to change.

I've never been so heartbroken, yet so determined at the same time.

When you look at what's happening in our community, it's so easy to say it's too hard to change the law, and to give up. 

But the bravest thing of all is to hope.

That's what my mum did, and it's her message of hope that I will continue to share as I travel across the country over the next few months. 

We can change the law, but we have to be brave enough to believe it. 

If you haven't already, you can follow my progress at Belinda's Brave Walk, or on FacebookTwitter and Instagram.

Thank you all who have joined me on this journey so far. I couldn't do this without you. 

I hope to see you soon!

Belinda

 

 


Belinda's Brave Walk

Belinda & Mareia

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.

Also, follow me on FacebookTwitter and Instagram to help spread the word.

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.

Read her full story here

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. Belinda with shoes

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.  

One of the best ways to track how I’m going is to follow me on FacebookTwitter and Instagram.

Your backing will help convince MPs that terminally ill Western Australians want access to a safe and workable Voluntary Assisted Dying law.

 

- Belinda Teh

 


Go Gentle welcomes WA funding boost to palliative care

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.

 


Comment sought on framework for WA assisted dying law

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. Higson_Rally_3.jpg

“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:


News update Autumn 2019: A big year ahead

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.

There is a lot happening around the country on voluntary assisted dying. If you haven't already, connect with us on Facebook, Twitter, LinkedIn and Instagram to get all the news as it happens.

The WA campaign

DWD WA RallyMuch 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.

 Please click the envelope to spread the word to your friends and family. 

 

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 BarnesJenny 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.

Kiki Paul
CEO


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Go Gentle Australia is a registered charity. All donations over $2 are tax deductible.


Make your submission to QLD's inquiry into assisted dying: Deadline 15 April

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. 

MAKE A SUBMISSION

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.”


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