Sara Wright, 54, was a nurse for 33 years before she was diagnosed with motor neuron disease (MND).
With just months left to live, the NSW mother is now “virtually paralysed” and waiting for next week’s decision in the NSW upper house to determine how she will die.
Watch the video to see the VAD laws pass through the NSW lower house
Wright was diagnosed with amyotrophic lateral sclerosis (ALS) – a subtype of MND – just two years ago, and she is already dependent on a carer 24 hours a day.
“The disease started as weakness in my right foot, travelled up my right leg, then my left foot and leg,” Wright told 7NEWS.com.au.
“Then it travelled up my torso affecting my upper body, firstly my abdominal muscles, and now it affects both of my arms and hands, my lungs and my swallowing and speaking muscles.”
Wright shared her story with 7NEWS.com.au using dictation, as it’s difficult and painful for her to speak.
If voluntary assisted dying (VAD) laws are not passed in time, Wright says she will likely “have to deal with suffocating or choking to death”.
ALS/MND is diagnosed in 384 people each day worldwide. That’s 140,000 new cases each year.
Wright’s prognosis is all but certain. “It’s a terminal illness and the average life expectancy is three to five years,” Wright said.
“Given I have already been living with the disease for three years, and the progression has been faster than I ever could have expected, I don’t know how long I will live.
“I don’t think that I will live for more than another six to eight months, as my breathing capacity is reducing very fast and I do not wish to have a tracheostomy.”
A tracheostomy is a breathing hole cut into the front of the neck and windpipe by surgeons.
“When I was first diagnosed my initial thought was: ‘When should I book my ticket to Switzerland?’,” Wright said.
She was aware of the “limitations of palliative care in the final stages of terminal illness”, having worked for several decades as a registered nurse.
Her plan was to book into Dignitas, a Swiss non-profit organisation that offers a range of end-of-life services, from advance health care planning to assisted dying.
Then COVID hit, and crossing the international border was no longer an option.
She next looked at moving interstate, where VAD is legal, but with most of their family based in the UK, Wright worried about the impact of uprooting her daughter from her home and friends.
“(Ester) is now 15 and she needs to have her community around her for support when I die,” Wright said.
“Obviously this is an incredibly difficult conversation to have with your own child.
“We have not specifically spoken about what could happen to me if the laws aren’t passed … but I have tried to assure her that family in the UK will fly out to be with her as soon as they can if I die unexpectedly.”
Their family members are not in the position to spend more than a few weeks in Australia, which makes planning for her death – which could be drawn out without VAD laws – even harder.
Wright would like to say goodbye to her parents and siblings while she still can, but also wants them to be available to support her daughter.
Wright may need to make the impossible decision between these final wishes if she cannot determine the date of her death.
“If it is a long and drawn out decline it will be difficult and distressing for her to watch,” she said.
“If I die unexpectedly then she won’t have my family there to support her and neither will I have the opportunity to say goodbye.”
A different life
Wright says that in the space of three years, her life has become a shadow of what it once was – that of a passionate horse rider and lover of running, cycling, swimming and socialising.
She has ridden horses her whole life, only stopping seven months ago when her new specialised equipment could no longer hide her instability from the horse with which she has “a very special bond”.
“My horse was becoming anxious … (It) was one of the hardest decisions I have ever had to make, and I still feel bereft of the joy that I got horse riding.”
She now finds enjoyment in subtle pleasures – meditating on her balcony, sitting by the ocean, visiting her horse and watching Ester ride her.
“My life has shrunk almost incomprehensibly,” Wright said.
“I have become slowly accustomed to my daily life as it is now, but there will come a time when my quality of life has been lost.”
Her career as a registered nurse often brought her close to the death of others and Wright says she has always been passionate about the need for VAD laws.
“I have seen far too many people, elderly people, in the middle of the night in a ward without anyone there to hold their hand because nobody knew that was going to be their time to die,” Wright said.
“I think that most people don’t think enough about death because we are all frightened of it.
“And this could be the reason that some people are refusing to consider VAD laws, because it’s a topic that is deeply uncomfortable and taboo.
“If we as a society were more mindfully aware and thoughtful about death, as it is the only certain outcome of life, then perhaps people would develop more compassion.”
Waiting for a parliamentary decision
The voluntary assisted dying bill has already passed through the NSW parliament’s lower house last year.
Premier Dominic Perrottet was one of the 11 MPs who stood in NSW parliament to oppose the bill, a week after visiting his grandmother dying in hospital with pancreatic cancer. Twenty other politicians spoke in favour of the bill.
The premier said at the time that the issue was not “abstract” to him. “I sat next to her, holding her hand. I could tell that she was in great pain and that she wanted it to be over,” he said.
“I got a sense, as much as anyone can have, why those in such pain would want to end it quickly.”
Perrottet said the state should instead improve the quality of palliative care.
The premier’s perspective differs from what Wright expected of those debating the bill, saying she felt “pretty certain that most of the members debating the bill would not have experienced seeing people die a very drawn-out, uncomfortable death”.
“If they had,” she said, “they most likely would be in support of this bill.”
Health Minister Brad Hazzard, who hadn’t supported euthanasia for the first 29 years of his three-decade career in parliament, said this bill was different.
Mr Hazzard said that voluntary assisted dying did not “remove the importance of the value of palliative care”.
He also said he couldn’t withhold a right from NSW residents that Australians in all other states had.
The bill last entered the state’s upper house in March with members from the government, the opposition, crossbenchers and the Greens passionately debating the laws.
The upper house passed legislation at the second reading stage in a 20 to 17 vote last Wednesday night.
Upper house MPs will debate amendments to the bill this Wednesday, with a final vote due after that, Independent MP for Sydney Alex Greenwich said.
Greenwich said the bill is one of the most conservative models on the issue in the country, with 46 amendments already passed.
“It’s my call to the upper house to not create any barriers and let’s work to seek to achieve voluntary assisted dying in NSW by the end of next week,” he said.
An unknown fate
Wright and her family are in agreement about her end-of-life wishes, but aren’t able to take the risks currently involved to help her achieve them.
“I know that all my family, my parents, my brothers, my ex-husband are all in support of voluntary assisted dying and helping me to relieve my suffering,” Wright said.
“But none of us want to break the law or risk anyone being imprisoned if they helped me.”
Whether Wright lives through the most agonising stages of her disease, or dies holding the hands of her family, will come down to the decisions made in parliament.
“If the legislation is passed in NSW too late I will not be able to take advantage of it,” Wright said.
“This will not only cause suffering to me but also to all of my family.
“I wonder how many people have really stopped to think about what they would like, if they were in a position where they were going to die of unpleasant and drawn-out death.”
If you need help in a crisis, call Lifeline on 13 11 14.
For further information about depression contact beyondblue on 1300 224 636 or talk to your GP, local health professional or someone you trust.
– With AAP