Bendigo woman becomes the first Victorian to use Voluntary Assisted Dying law

The daughters of the first Victorian to use the state’s Voluntary Assisted Dying law say their mother’s death was “beautiful and peaceful”.

Kerry Robertson, 61, died in a nursing home in Bendigo on 15 July from metastatic breast cancer. She was the first person to receive a permit under the Voluntary Assisted Dying Act and also the first to see the process through to its end.

Ms Robertson’s daughters Jacqui Hicks and Nicole Robertson, who were at her bedside, said “It was a beautiful, positive experience. It was the empowered death that she wanted.”

“We were there with her; her favourite music was playing in the background and she was surrounded by love,” Jacqui said.

She left this world with courage and grace, knowing how much she is loved.

“That was the greatest part, knowing that we did everything we could to make her happy in life and comfortable in death,” Nicole said.

Ms Robertson was diagnosed with breast cancer in 2010. Despite treatment, the cancer metastasized into her bones, lungs and brain. In March this year, when the disease had also spread to her liver and the side effects from the chemo were no longer manageable, she made the decision to stop all treatment.

Jacqui (pictured on the left) and Nicole (right) said their Mum had always known what she wanted. “Mum already had an appointment booked to see her specialist the day the legislation came into effect, she made her first request that same day,” Nicole said.

“Mum had always been brave, a real ‘Feel the fear then do it anyway’ mentality to life; it’s the legacy she leaves with us.” 

The women said the assisted dying process went smoothly and took 26 days to complete. Ms Robertson took the medication on the same day it was dispensed by the state-wide pharmacy.

“It was quick, she was ready to go. Her body was failing her and she was in incredible pain. She’d been in pain for a long time,” Jacqui said.

Palliative care did their job as well as they could. But it had been a long battle. She was tired, the pain was intolerable and there was no quality of life left for her."

The women said the experience had reinforced their belief that anyone who has a terminal diagnosis, is suffering and in intolerable pain deserves the choice of a voluntary assisted death.

“It is the most compassionate, dignified and logical option for those suffering in the end stages of life,” said Nicole.

Go Gentle Australia’s director Andrew Denton said the story demonstrated how well the law had been designed and implemented.

“The eligibility criteria were met, the safeguards were worked through, and Kerry Robertson and her family were offered the compassionate death Kerry wanted,” Mr Denton said.

“Importantly, too, access to the process was not an issue, even though the family was from regional Victoria. It is a testament to the dedication and compassion of everyone involved.”

Higher res images are available to download

 Media contact: Steve Offner, Go Gentle Australia media@gogentleaustralia.org.au 0426 283 865


Expert panel report reflects experience of WA's best medical minds

Go Gentle Australia congratulates the Ministerial Expert Panel on Voluntary Assisted Dying for its final report handed to the Western Australian government today.

“The findings of the Expert Ministerial Panel, after 5 months of inquiry, are informed by the professional experience of some of the best medical minds in Western Australia,” said Go Gentle Australia’s director, Andrew Denton.

“These minds include: Two former AMA WA Presidents, in Drs Simon Towler and Scott Blackwell; the President of Palliative Care WA, Dr Elissa Campbell; and Associate Professor Kirsten Aurett, a palliative care specialist based at Notre Dame University,” Mr Denton said.

“Along with Sam Jenkinson, who represents People with Disabilities WA, and Kate George, who specialises in human rights, in particular indigenous rights, and under the guidance of the chair, former Governor Malcolm McCusker QC, the panel speaks to the depth of thinking and research that lies behind its recommendations.

The report will now be considered by the WA Government to help guide the drafting of a Voluntary Assisted Dying Bill.

Opponents to this law like to claim that the medical profession does not support it, or that it is being ‘rushed through’. Today’s report is a resounding rebuttal of both those arguments."

“That the report comes after an exhaustive 18-month cross-party parliamentary inquiry shows that Western Australia has done the careful work needed to frame a voluntary assisted dying law which is targeted to offer choice to those most desperately in need,” Mr Denton said.

“An overwhelming majority of Western Australians support assisted dying and clear evidence shows the need for this law to be written,” he said.

“All eyes now turn to the Parliament of Western Australia to do the right thing by passing it and providing better end-of-life care for all.”

Media contacts: Joey Armenti, GGA WA Campaign Manager, 0438 948 172 media@gogentleaustralia.org.au

Steve Offner, Go Gentle Australia 0426 283 865 media@gogentleaustralia.org.au

 


Nurse, GP positions on Voluntary Assisted Dying are game changing

Go Gentle Australia welcomes the strong support from Western Australia's nurses and GPs for a proposed Voluntary Assisted Dying law.

“Today's statements of broad support from the state's nurses and GPs send a powerful message in the lead up to the vote on an assisted dying law, and WA’s parliamentarians need to take note,” said Go Gentle Australia’s director Andrew Denton.

The Australian Nursing Federation WA released the results of a survey of its membership and said in a statement that “Terminally ill patients who are suffering terribly should have the legal right to ask for medical help to end their life – with the protections and safeguards of Voluntary Assisted Dying (VAD) laws”.

Mr Denton described the backing for assisted dying from close to 80% of WA’s nurses as "game changing". 

“It tells us that the medical professionals at the frontline of patient care know all too well what’s at stake,” he said.

“It’s no coincidence that nurses are the most trusted profession in Australia. They’ve won this trust because of their care for their patients. It would be a brave person who chooses to ignore their experiences of caring for people at the end of life.”

In a separate announcement, the Royal Australian College of General Practitioners adopted a neutral stance on the issue of an assisted dying law, but said it “supports patient-centred decisions in end-of-life care and respects that this may include palliative care and requests for voluntary assisted dying”.

“The RACGP represents more doctors than any other professional organisation in Australia. Their positive stance on assisted dying disproves what some would have politicians believe − that doctors do not support this law,” Mr Denton said.

Go Gentle’s WA Campaign Manager Joey Armenti said nurses' experiences would be crucial in informing the upcoming parliamentary debate on assisted dying.

“More than any other medical professional, nurses spend the most time with a dying patient and their families. They see the struggles. They see the pain and suffering. They see when medicine cannot alleviate these things and they understand that despite the best medical care at the end of life, some people need another option,” Mr Armenti said.

“Today, yet again, they’ve stood up for the person who is most important in this debate – the person lying in the hospital bed,” he said.

WA's nurses and the RACGP join the federal Australian Nursing and Midwifery Federation, the Royal Australian College of Physicians, and the Australian Medical Students Association in adopting a positive or neutral stance toward VAD.

Media contacts: Joey Armenti, GGA WA Campaign Manager, 0438 948 172 media@gogentleaustralia.org.au

Steve Offner, Go Gentle Australia 0426 283 865 media@gogentleaustralia.org.au


Author of Belgium study hits back at Catholic Church over ‘appalling’ assisted dying video

The author of a study co-opted by the Catholic Church to paint a negative picture of assisted dying in Belgium and Australia has described a video published by the Sydney Archdiocese as “appalling” and a “blatant misrepresentation”.

“I was appalled at the video's blatant misrepresentation of the robust and honest research that we have been conducting in Belgium,” said Assistant Professor Kenneth Chambaere, from Ghent University’s End-of-Life Care Research Group.

A/Prof Chambaere confirmed via email that the video, which is circulating on the Archdiocese of Sydney’s Vimeo channel and on Archbishop Anthony Fisher’s Facebook page, had misused statistics from his 2010 study.

The video claims that in Belgium “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”.

“On 19 June, euthanasia and assisted suicide will begin in Victoria, how long will it take for Victoria to look like Belgium?” says the video, which has been circulated widely in Catholic media.

“The video has cherry-picked results from our studies to the effect of scaremongering among the public in the lead up to the implementation of Victoria’s Voluntary Assisted Dying law,” A/Prof Chambaere wrote.

It is, quite frankly, an insult to us as researchers who, day in day out, work to generate reliable and trustworthy insights into end-of-life practice in Belgium.”

A/Prof Chambaere confirmed the study in question was not about euthanasia, but an investigation of the incidence of terminal sedation before and after Belgium legalised assisted dying in 2002.

Terminal sedation, sometimes called non-voluntary euthanasia (NVE), is a problematic practice that occurs routinely in palliative care. It has been found to occur in every jurisdiction that’s been studied, regardless of whether an assisted dying law is in place, including Australia and New Zealand

A/Prof Chambaere said the most egregious aspect of the video was that it failed to report his study’s conclusion, which was that rates of NVE had fallen in Belgium since VAD laws came into effect.  

“Acts of hastening death without explicit request are not a by-product of euthanasia legislation, and if anything, euthanasia legislation seems to decrease the occurrence of these practices. This conclusion features prominently in the paper.

“It is very difficult to see how our research could be misrepresented in the way it has been,” he wrote.

“The authors of the video ask whether Victoria will become like Belgium? If it means diminishing rates of these questionable practices, then surely becoming more like Belgium is a good thing."

Go Gentle Australia last week called on the Sydney Archdiocese and Archbishop Fisher to show moral leadership and remove the misleading video from circulation.

In response, the Archdiocese doubled down on its claims, saying it would continue “to provide Australians with accurate information about the practice of euthanasia and assisted suicide occurring overseas”.

It has since released a second video that similarly cherry-picks statistics from the US state of Oregon to paint a distorted picture of the reasons why dying people elect an assisted death.

Go Gentle Australia Director Andrew Denton said the inherent dishonesty in the videos and the Church’s response signalled a wider campaign of misinformation on assisted dying.

“The Church’s credibility is already in tatters after their cover ups and denials about child sexual abuse; now they are seeking to sow misinformation about voluntary assisted dying in an effort to overturn a law in Victoria supported by 90% of Australians and a clear majority of Catholics,” he said.

“Yet again, while claiming to protect the vulnerable, the Church hierarchy is doing the opposite by trying to block laws that will ease the suffering of terminally ill people when medicine no longer can.

“It seems they’ve learnt little about treating Australians with respect.”

More information: To read A/Prof Chambaere's response in full and to see a blog and short video exposing the misrepresentation, go to Neil Francis' DyingForChoice website.

Media contact: Steve Offner, Communications Manager, Go Gentle Australia 0426 283 865 media@gogentleaustralia.org.au

(image: St Mary's Cathedral Sydney, Ben Askins, Flickr Creative Commons CC BY-SA 2.0)


It is time to follow Victoria's compassionate lead on assisted dying 

Go Gentle Australia congratulates the people of Victoria for achieving what no other Australian state has been willing to do – implement a safe and workable assisted dying law.

Victoria has established itself as a true leader in social reform, said Go Gentle's Director Andrew Denton.

"Not only is this law long-desired and long-supported by an overwhelming majority of Victorians, it is also one of Australia's most outstanding examples of evidence-based policy making,” Mr Denton said

“That is not just my assessment but the consensus view of the right-leaning Institute of Public Affairs and the left-leaning Per Capita Australia,” he said.

“The Victorian Voluntary Assisted Dying law has set the benchmark for how public policy should be designed and implemented in this country. The question now is not if, but when other States will follow Victoria's compassionate lead," Mr Denton said.

Go Gentle worked closely with all stakeholders in Victoria to ensure debate was framed around facts and an evidence base, and not scare campaigns designed to sow uncertainty and doubt in the minds of politicians.

Go Gentle’s CEO Kiki Paul said the community consultation and resulting law were examples of democracy working at its best.

“From the comprehensive year-long parliamentary inquiry process and consultations to the debates in parliament and the 18-month implementation period, this is one of the most debated, and most prepared-for, reforms the country has seen,” Ms Paul said.

“The Government’s leadership of the parliamentary inquiry process and its sponsorship of the resulting Bill were crucial factors in its success, as was the Opposition’s commitment to allow a conscience vote,” she said.

“Special mention must also go to Victorian MLC’s Fiona Patten and Colleen Hartland for their courage and determination in pushing for the parliamentary inquiry that initiated the process.”

Ms Paul said other Australian states and territories – and indeed jurisdictions around the world – are closely watching Victoria as the law is implemented.

“We are confident the law will be rolled out in a safe and consistent way that will give terminally ill Victorians real choice at the end of their lives and an option not to suffer unnecessarily,” Ms Paul said.

“Yet three quarters of Australians still have no access to an assisted dying law. The Rule of Law requires that law must apply equally to all. Clearly this is not the case in this field in Australia.

“Victoria has given us a principled road map on how these laws can be rolled out – now it is up to parliaments and individual politicians to not stand in the way of more compassionate end-of-life choices for all Australians.”

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


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 2 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 2nd 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 Friday, 2 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.

*Updated to amend submission deadline to 2 August (not 1 August as previously) 


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

 

 


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