Voluntary assisted dying debate centres on what makes a good death

Reta Round was not afraid to die,but she was very clear that she didn’t want a lingering death and she didn’t want to choke.

But when Round died of throat cancer in 2006,at age 83,her daughter Janet Kelman was powerless to prevent the suffering her mother dreaded the most.

Janet Kelman,who is in cancer remission,is a strong supporter of assisted dying.

Janet Kelman,who is in cancer remission,is a strong supporter of assisted dying.Janie Barrett

Round started choking unexpectedly at home,forcing Kelman and her brothers to scramble to administer an injection left by the palliative care team. This left her comatose and she died three days later.

“Seeing the fear and the desperation in her eyes as she looked at me ... really impacted me,” Kelman says. “It wasn’t supposed to happen,it’s too cruel. My mother was one in a million and she deserved the best possible end.”

Kelman,who lives in Glenmore Park near Penrith,is hoping the voluntary assisted dying legislation introduced to NSW Parliament last week will pass,so people have the choice not to suffer as her mother did.

Kelman,69,also wants the option for herself because in 2020 she was diagnosed with stage 3 bowel cancer,though she is now in remission.

“I’m determined to stay positive and live well for my daughters and their families but if the time comes that the suffering becomes too much,I’d like the peace of mind to know that I don’t have to go to the bitter end,” she says.

NSW is now the only state in Australia without voluntary assisted dying laws,while the two territories remain blocked by Howard-era federal legislation.

It was last dealt with in NSW in 2017,when legislation was introduced by Nationals MP Trevor Khan in the Legislative Council (the upper house). Both major parties allowed a conscience vote and it failed by one vote.

This time it’s a bill brought by Independent Alex Greenwich,with 28 co-sponsors from all sides of politics,and it has started its journey in the Legislative Assembly (the lower house).

Last week Greenwich delivered a petition to State Parliament with more than 100,000 signatures in support of voluntary assisted dying,before tabling his bill on Thursday.

Greenwich says he is motivated by people like Judith Daley,who stood beside him at a press conference on Tuesday and spoke about the horrible death she had in store with terminal lung cancer.

He also says the NSW coronial data showing that one in five suicides of people over the age of 40 are people with a diagnosis of a terminal illness makes the legal reforms urgent.

“Surely,in NSW,our modern health system that has got us through the toughest and darkest days of the pandemic should be able to provide a better option than dying in cruel indignity or a violent and lonely suicide,” Greenwich says. “Voluntary assisted dying provides that option.”

Greenwich says the legislation is modelled on the Western Australian laws with added safeguards,such as the creation of an assisted dying board with ultimate authority to approve requests and new offences to prohibit the ill person coming under any duress.

The broad framework of who is eligible is similar to other states - candidates must be adults with sound decision-making capacity,and suffering a condition that is advanced,progressive and will cause death within six months (or 12 months for a neurodegenerative disease),and which causes intolerable suffering.

Both Premier Dominic Perrottet and Opposition Leader Chris Minns are personally opposed to voluntary assisted dying but each have promised their MPs a conscience vote.

Former premier Gladys Berejiklian had promised disgruntled MPs in the right wing of her party there would be no more conscience votes in this term of Parliament after the bruising abortion debate in 2019.

However,Perrottet is himself from the Right faction and,as a newly minted leader of a minority government,he needs the support of Greenwich and other crossbenchers on confidence and supply issues.

Greenwich says he always intended to release the bill about this time but welcomed the fact that two of the new Premier’s first acts were to promise a conscience vote on the bill and to ask Treasury to look into more funding for palliative care (this was done after the 2017 debate).

Greenwich says he expects the debate to go for some weeks before a vote in the lower house. If successful,the legislation would then proceed to the upper house and could pass by the end of the year.

Sydney MP Alex Greenwich alongside members of Dying with Dignity speaks to the media after introducing his Voluntary Assisted Dying Bill into the Legislative Assembly on Thursday.

Sydney MP Alex Greenwich alongside members of Dying with Dignity speaks to the media after introducing his Voluntary Assisted Dying Bill into the Legislative Assembly on Thursday.Dominic Lorrimer

It’s not a done deal but changes in the make-up of Parliament and a potential shift in position from some MPs mean Greenwich is hopeful. He wants all voices to be heard in the debate,but warns it is not an issue where opponents should “play games,filibuster and treat it as political sport”.

Andrew Denton,who founded Go Gentle to advocate for voluntary assisted dying after his father’s slow and painful death,says the vote will again come down to a handful of MPs,probably in the upper house,but there is also a risk the bill could pass with onerous amendments.

“It’s conservative compared with what’s been legislated elsewhere,such as in Queensland or even South Australia or Tasmania,and that’s for really sound political reasons,” Denton says. “The great danger of the parliamentary debate ahead is that some MPs will attempt to add a lot more barriers to effectively make it a difficult if not impossible last to access.”

Polls consistently show high community support for voluntary assisted dying and it is backed by organisations such as the Older Persons Advocacy Network,the Council on the Ageing,the Health Services Union,the NSW Nurses&Midwives’ Association and the Police Association. The Australian Federation of Disability Organisations also supports the reform,saying all Australian states have good checks and balances in place to protect people with disabilities and it has no concern with how the law has operated in Victoria since 2019.

Yet there is also deep-seated opposition,particularly from religious institutions,and this will influence the views of many MPs.

Anglican Archbishop of Sydney,Kanishka Raffel,describes the proposed law as the “final abandonment of one of the cornerstones of Western civilisation:the sanctity of life”.

Raffel argues that the experience of other jurisdictions has shown that euthanasia - his preferred term along with “physician-assisted suicide” - has been extended over time to include mental illness,physical disability or simply a sense of having completed life. He points out many vulnerable people could be motivated by the desire not to be a burden since death was easier and less expensive than palliative care. He says the new bill contains fewer safeguards than the one rejected in 2017.

Catholic Archbishop of Sydney Anthony Fisher has warned that in a “euthanasia culture” those that die are the “sick,frail,handicapped,depressed,poor,powerless and abandoned”.

Catholic Health Australia,the nation’s largest Catholic health and aged care organisation led by former deputy Labor premier John Watkins,islobbying NSW MPs to oppose voluntary assisted dying,and consider medical advances in palliative care instead.

Meanwhile,former premier Mike Baird,the chief executive of HammondCare,also argues that good palliative care provides an alternative path. Informed by the death of his mother earlier this year,Baird wrote in an opinion piece last week that “every life matters until the last breath”.

Louise Hungerford at her home. Her husband Bernie died of motor neurone disease in 2009,17 years after he was diagnosed.

Louise Hungerford at her home. Her husband Bernie died of motor neurone disease in 2009,17 years after he was diagnosed.Louise Kennerley

Louise Hungerford from Turramurra saw her husband Bernie die in 2009,17 years after he was diagnosed with motor neurone disease in 1992. She says they were good years despite the progression of the disease;he worked until he couldn’t,he watched his children play sport and read the drafts of their essays,and was a valued and loved member of the family.

For the last two years of his life,Bernie Hungerford would have qualified for voluntary assisted dying had the laws proposed by Greenwich been in place at the time,but his widow says he would not have chosen this option because of his Christian faith.

“That would not have been our philosophy because we knew that God was in control of everything,” Hungerford says. “He wanted to promote life,not to cut it short.”

Hungerford says the house had been renovated to keep Bernie at home and comfortable,he had a wheelchair-accessible car,and he underwent medical procedures such as the insertion of a gastric tube to extend his life. When the time came,he had a good death,surrounded by friends and family,a team of caring nurses and a patch on his skin for pain relief. While some of this was government funded or subsidised,the extended Hungerford family also contributed.

The experience has made Hungerford believe that the government needs to put a lot more funding into palliative care and support for carers. She fears voluntary assisted dying - which she describes as the “short-term,easy,convenient way” - will remove the political pressure and undermine the value of human life.

Maryanne Platt from Coogee has seen both the success and failure of palliative care.

When her brother died at age 53 from pancreatic cancer,he had nurses care for him at home and died over three days in “a beautiful,peaceful manner”. But when her mother Philomena Platt died earlier this year at 86,it was anything but.

Maryanne Platt at Mahon Pool in Maroubra,where her mother asked to have her ashes scattered.

Maryanne Platt at Mahon Pool in Maroubra,where her mother asked to have her ashes scattered.Louise Kennerley

Philomena Platt went into hospital in June with dysphasia,which prevented her eating because of a swollen throat. When it was no longer possible to feed her via intravenous drip and a feeding tube to the stomach also failed,she decided to cease treatment and go into palliative care. But Platt says the 17 days that followed were brutal,with her mother “anxious and distressed”,in constant pain,and slowly starving to death.

Platt says her mother was a devout Catholic and although they had discussions about death and the fact she wanted her ashes scattered at Mahon Pool in Maroubra,she never said anything definitive about voluntary assisted dying. However,Platt believes she should have had the choice.

“I can confidently say that she would not see that she needs to die in a long,traumatic,prolonged way just because she’s a Catholic,” she says.

Dying with Dignity vice-president Shayne Higson says voluntary assisted dying is not an alternative to palliative care but an option for when it no longer works.

“The reality is that for between 10 and 20 per cent of people,their symptoms cannot be adequately relieved,” Higson says. “These laws are needed to give people the choice to die peacefully at a time and place of their choosing usually surrounded by loved ones.”

Before watching her mother die and then later her mother-in-law,Kelman worked as a registered nurse in palliative care for many years and treated nearly 100 patients at the end of their lives.

“Palliative care is excellent but it can only do so much,” she says. “I would like to dare each politician voting to go and visit a palliative care ward and ask the patient and carer how they would like them to vote!”

For support contact Lifeline on 131114.

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Caitlin Fitzsimmons was the former deputy editor of BRW and a writer on entrepreneurship for The Australian Financial Review.

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