On November 28, many NSW residents will have felt relieved. But not for a reason that would immediately come to mind.
The Voluntary Assisted Dying Act for NSW has come into effect, meaning eligible people in the state will be able to request medical assistance to end their life. The criteria is extensive – the person must be in the late stages of an advanced disease, illness or medical condition, along with other factors.
Janet Cohen plans to use the services once her condition worsens.
For years she feared she wouldn't have the choice available to her.
"I had seen the months and months of suffering my mother in particular had been through in the lead up to her death, and I knew right from the very word go that voluntary assisted dying was the option I wanted," says Cohen.
Watch: The moment the VAD laws were passed in NSW. Post continues below.
In 2013 shortly before her 60th birthday, Cohen was first diagnosed with lung cancer. It was a shock and chance diagnosis, Cohen going to the doctor after feeling a bit run down by what she thought was the flu. Tests confirmed otherwise.
After a successful surgery, she was cancer-free for two years. Then in 2015, it unfortunately returned. The cancer had mutated and her diagnosis became terminal.
"Pretty much straight away after hearing that I knew I wanted control over my end of life experience," she says.
There was one big problem at the time, however.
Voluntary assisted dying (VAD) laws were scarce in Australia. Cohen's only option was to apply to become a member of the euthanasia group Dignitas in Switzerland.
"Going to Switzerland was my only option, if I wanted to be sure of a peaceful and dignified death. It was a very expensive, and very arduous option. But having the peace of mind that I could go to Switzerland brought me a lot of comfort as I watched on desperately for Australian states to offer the same," she says.
"Having this option has made a huge difference to my quality of life. The reassurance that if things get really bad – the pain, psychological, emotional and physical suffering – I would have the option to exit the stage was a relief."
Shayne Higson is the CEO and Spokesperson of Dying with Dignity NSW.
For over 10 years now she has been an advocate for VAD laws, after seeing the pain her mother went through with an aggressive brain cancer.
"I made a decision to do everything I could to change the law so that people who are in my mother's situation – that is, someone who is terminally ill, with no hope of recovery and who is experiencing unbearable suffering, despite the best efforts of palliative care – will have a more compassionate option. A choice to die on their own terms, at a time and place of their choosing, surrounded by their loved ones," says Higson.
In May 2022, the NSW VAD legislation passed through parliament. Higson still remembers that moment vividly.
She felt relieved that many now would be able to use the laws if applicable. But she also felt devastated that a lot of people hadn't made it in time – the option taken away from them.
On November 28, the laws will come into place in the state. It's a bittersweet moment, Higson tells Mamamia.
"In some ways the past 12 months has been the most challenging period for me because although the law had passed, dying individuals in NSW have still had to wait until November 28. Now that we are just weeks away from this compassionate law, I feel proud that I played a part in this law reform and I am relieved that people will now have a choice that my mother was denied."
Cohen felt the same.
"I was incredibly relieved, it had been a long time coming. But there were so many incredible people that took part in the campaigns – and for them it was too late," she notes.
"Nearly every part of Australia will have VAD as of this date in November. And that's something to celebrate."
Right now Cohen says she's in "decent health". She's still living with a terminal diagnosis, and she doesn't know how long she has. But she knows that when the time comes, the services are available to her. And she plans to use them.
It's regaining a sense of autonomy that has had the largest impact on her sense of self.
"With cancer you lose a lot. You lose control, you lose agency of your life. There's life before cancer and then there's life after cancer. Having this option has given me back some feeling of agency. And now instead of going to Switzerland, I can die in Australia, and have my loved ones around me."
During this time, Cohen says her long-term partner has been one of her biggest supporters.
"My partner and I feel the same about voluntary assisted dying. We see it as a choice of empowerment and quality of life," she explains.
"I don't want to feel like a victim to cancer, nor suffer unnecessarily. And he respects my wishes. I also don't want to leave that legacy – all those dreadfully traumatising memories of my pain and suffering at the very end of life to be front of mind for my loved ones."
Shayne Higson wants people to know this – VAD laws aren't for everyone. Most dying people can still achieve a 'comfortable' death supported by caring palliative care professionals.
However, having the choice gives autonomy to the individual. And these laws across the country work safely and effectively.
Cohen agrees, adding there are legimate end of life options amongst a suite of other options. The imperative word being options.
"Voluntary assisted dying isn't suicide. On your death certificate it won't be written as 'died of suicide', instead the illness will be named. There's one certainty in life and it's that we're all going to die. Many people feel uncomfortable about having these conversations – but it's very possible to have a healthy discussion about it."
For more on this topic, you can visit Dying with Dignity NSW's website.
If this has raised any issues for you or if you would like to speak with someone, please contact Lifeline on 13 11 14 or beyondblue on 1300 22 4636.
Feature Image: Supplied.
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