Voluntary assisted dying NSW legislation set to pass parliament as terminally ill Siobhan O’Sullivan urges ‘Don’t let me suffer’

0

In mid-July 2020, as Sydneysiders were still adjusting to the first major COVID-19 restrictions, Siobhan O’Sullivan was motivated to shift some weight from around her belly.

At 46, she felt her mid-section was changing, likely from housebound inactivity. She wasn’t used to being idle.

An associate professor of politics at UNSW in Sydney, Siobhan was extremely engaged in research around her twin passions of animal welfare and the alleviation of social issues connected to poverty.

For more Health & Wellbeing related news and videos check out Health & Wellbeing >>

Feeling sluggish and bloated, she took herself off to boot camp, which entailed sit-ups and stomach crunches.

Siobhan O’Sullivan Credit: Supplied

“I thought, ‘Oh, my stomach and lower abdomen feel quite dense’,” she said.

“I remember thinking, ‘This feels different’.”

On 4 August, just three weeks after her strenuous training, Siobhan was diagnosed with stage 3 ovarian cancer.

Within a year, the cancer had spread, and doctors broke the news that her illness was terminal.

Silent killer

As she underwent gruelling treatments for the disease – considered a “silent killer” because of a general lack or vagueness of symptoms – her thoughts turned to advocacy.

Siobhan began working with various ovarian cancer research and support agencies and also focused on voluntary assisted dying legislation in NSW.

She knows the passage of the laws – which are still working their way through the state’s Upper House – will likely come too late for her.

But she says they will make an untold difference to those who come after her.

“If I could tell my story to most people with an open mind, they would think it’s not appropriate that I just suffer, when that suffering can be addressed so easily.”

Diagnosis

Siobhan’s shock cancer news came as her 92-year-old father was close to death after multiple health battles.

“In the week prior to my diagnosis, I was starting to say to people, ‘I’m not feeling right – I think it’s stress because dad’s going to die soon’,” she said.

“The week before dad died, I went to the doctor and said, ‘Something’s not right’.”

Doctors had initially suspected constipation, irritable bowel syndrome and even appendicitis. It fell to an ER doctor to deliver the grim news – ovarian cancer. The silent killer.

Siobhan O’Sullivan with her dad.
Siobhan O’Sullivan with her dad. Credit: Supplied

The first week after Siobhan’s diagnosis was particularly stressful for her, as her father weakened and she was unable to visit him.

Within a week, she felt stable enough to leave hospital, and she and her family went directly to her father’s bedside. He died later that day.

The next day, Siobhan was back in hospital. Her first round of chemo was then held off, to allow her to attend her father’s funeral.

Treatment

The treatments caused unexpected side effects – during the operation to remove the cancer, known as debulking surgery, Siobhan suffered a stroke.

She has since had a second stroke and now walks with a cane after becoming blind on her right side.

Despite extensive treatments, scans in March 2021 showed the cancer had spread.

“That was a huge blow because a lot of women at that point do get some remission time,” she said.

In mid-2021, Siobhan was accepted into a drug trial which “looked promising at the start”. But she was removed as a participant when the cancer continued to spread. It is now in her liver.

She is now classified as “chemo resistant”, which she says effectively means she could have about a year to live.

“I’m now at 19 months, which means I’m on borrowed time,” she said.

Advocacy

Despite living with death, Siobhan maintains her humour and optimism, and is continuing her advocacy.

“Ovarian cancer is very, very terminal – it has something like a 23 per cent survival rate – and it is in desperate need of funds and research,” she said.

She is also busy making plans for after her death – divesting property and funds to her niece, nephew, godson and his sister, and ensuring her podcast is in good hands.

And she is bequeathing $50,000 to the Australasian Animal Studies Association which, with her help and dedication, is setting up a new animal studies scholarship.

Siobhan is busy living life - but also making plans for her death.
Siobhan is busy living life – but also making plans for her death. Credit: Supplied

Will it be called the Siobhan O’Sullivan Prize?

“To be honest, I’m kind of hoping it won’t be but, in my heart, I suspect that the second I drop dead that will change,” she laughs.

At this stage, more than ever, prognosis is important to Siobhan, if only so she can tie up loose ends.

“I do want to know when I’m going to die, because I want to plan,” she said. “Time really matters to me.

“Some days I think I could live another year, some days I think that would be just so unlikely.”

Voluntary assisted dying

Now, towards the end of her life, Siobhan would feel immensely comforted by the thought that she could opt to legally end her life before the final ravages of cancer bring even more suffering.

And she’s urging NSW Upper House MPs to pass the voluntary assisted dying legislation which the Lower House voted for – 52 votes to 32 – in November 2021.

On Thursday, New South Wales is set to become the last Australian state to do so.

Siobhan having treatment for ovarian cancer.
Siobhan having treatment for ovarian cancer. Credit: Supplied

To this point, NSW has been the only Australian state not to have VAD laws, which disappoints Siobhan, who had been living in Melbourne before moving back to Sydney for her work.

“If I were still in Victoria, I would have a suite of options available to me that as a resident of NSW I don’t have.”

“What I feel really aggrieved about is that, for me to stay connected to my friends and family in Sydney, I have to stare down the barrel of dying slowly and uncomfortably.

“It is so disappointing that NSW is behind other places.”

No benefit in suffering

Siobhan says that with VAD laws still not passed in NSW, she feels she hasn’t “even had the opportunity to talk to people about what it would be like to consider an assisted death”.

“My view is that there is no benefit that’s going to come to me, or my family, or this world, for me to suffer the last couple of weeks of a death by ovarian cancer,” she said.

‘There is no benefit for me to suffer the last couple of weeks of a death by ovarian cancer.’
‘There is no benefit for me to suffer the last couple of weeks of a death by ovarian cancer.’ Credit: Supplied

“I’m not going to be cured, I’m not going to dance out of here. I’m heading to one place only – that is the grave.

“That’s not to say that I want to die today – there is still a lot about my life that I really enjoy and there are a lot of things I want to do.

“But there’ll come a time when that won’t be true.”

Options

She says, were VAD laws in place, she may not necessarily take up the option.

“Maybe I wouldn’t. Maybe I would be quite happy to ride out those last few weeks,” she said.

“But it’s about the choice, it’s about the availability, it’s about having a think about what would be most suitable for me.

“I just don’t have that choice available to me and I think that is wrong.”

Too late for her

Siobhan understands assisted dying laws will likely be too late for her.

“But this is for the other people, for the next people – the people in one, two, three years time,” she said.

She also emphasises that the option of VAD is not just for older people.

“It’s also about younger people who have these terrible diseases, who are going in absolutely one direction – the graveyard,” she said.

“How much can we alleviate their suffering before they die?”

‘Act now’

Ahead of the Upper House vote, Siobhan has a simple message to parliamentarians.

“I am terminally ill and I will die soon,” she said.

“So far my suffering has been considerable. I want to die without suffering immensely.

“I want to have options available to me.

“I want to stay close to friends and family.

“NSW needs to make the option of assisted dying available to people in my situation.

“NSW politicians need to act now.”

This piece was originally published by Go Gentle Australia

Read original article here

Denial of responsibility! Verve Times is an automatic aggregator of the all world’s media. In each content, the hyperlink to the primary source is specified. All trademarks belong to their rightful owners, all materials to their authors. If you are the owner of the content and do not want us to publish your materials, please contact us by email – [email protected]. The content will be deleted within 24 hours.

Leave a comment
Hello,