![Anthony Virgona, 55, in his room at Cyril Jewell House in Keilor East. Photo: Pat Scala Anthony Virgona, 55, in his room at Cyril Jewell House in Keilor East. Photo: Pat Scala](/images/transform/v1/crop/frm/silverstone-feed-data/fde13af1-4473-46ec-8252-d8bd696b1fad.jpg/r0_0_729_410_w1200_h678_fmax.jpg)
On Monday, a nurse will wake Anthony Virgona at 5.30am to travel to the Royal Melbourne hospital for the kidney dialysis that has kept him alive for the past three years. This time he will not be going.
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Instead, he'll pack what's left of his belongings into cardboard boxes. Last to go will be the framed photos of his Mum and sister and the red-and-black Bombers memorabilia – posters, stickers, a cap, clock and blanket – scattered around the small room at the end of the corridor.
Then, some time later in the day, Mr Virgona's one remaining kidney will start to fail and his body will begin to shut down. His death might be quick, it could take weeks. The staff at Cyril Jewell House, the suburban nursing home he was moved to more than a decade ago, will do their best to keep him comfortable.
"It's not the coward's way out," Mr Virgona says, softly. "I've spoken to a lot of medical staff including psychiatrists and they all think I'm in the right frame of mind. Most have been quite moved and tell me I've been so brave."
![Anthony shortly after he was married in late 1981.](http://www.smh.com.au/content/dam/images/g/m/m/c/l/x/image.imgtype.articleLeadwide.620x349.png/1454628405897.png)
Anthony Virgona shortly after he was married in late 1981.
Mr Virgona has multiple sclerosis. At 55, he has spent more than a third of his adult life in residential care. He can no longer walk and his organs are failing. His short-term memory is gone. A team of carers wash, dress, feed and toilet him.
Mr Virgona does not want to die the way those around him have. Mute, unable to eat or swallow. Crippled by muscle spasms. Mind and mobility lost for good. If all goes to plan, he will be dead within three weeks. He'd like it to be much sooner.
Mr Virgona is telling his story because he believes people who are suffering from a degenerative condition, extreme disability or terminal illness should be able to choose when and how they die. He would prefer to take a pill and go to sleep, rather than die slowly from renal failure.
"My bones are starting to buckle. My spine hurts. I'm in too much pain for too many hours of the day," Mr Virgona says. "I've been fighting this disease for 20 years and I've just had enough.
"People who are in a position like me, people with cancer, people who are dying or deteriorating, we should have the right to make a choice whether we go on and we should be able to go peacefully."
![Anthony as a toddler (left) and in primary school in Melbourne's western suburbs.](http://www.smh.com.au/content/dam/images/g/m/m/j/9/q/image.imgtype.articleLeadwide.620x349.png/1454636134777.png)
Anthony Virgona as a toddler (left) and in primary school in Melbourne's western suburbs.
Unlike with assisted suicide or euthanasia, Mr Virgona's decision to refuse life-sustaining medical treatment is legal. He says his doctor and nursing staff understand why he made the choice. The effects of the disease – and the treatment – are too much for him to bear any longer. A heart condition means a kidney transplant is not an option.
While advances in medical technology are keeping patients alive for longer, an increasing number of people are deciding they do not want life-prolonging care such as dialysis, pacemakers and artificial feeding.
Associate Professor Bill Silvester says this trend does not reflect more patients wanting to die, but a desire not to continue living the way they are.
"Frequently, when people come to us for advanced care planning they want to make these decisions and have the capacity to take action while they're still able to do so," he says. "It's a very courageous decision."
Dr Silvester, who chairs end-of-life committees at the Royal Australasian College of Physicians and the Australian and New Zealand Intensive Care Society, says patients are becoming more aware of their rights around end-of-life treatment.
The effect, he says, is a growing number of people turning down or refusing to start treatments such as dialysis. Dr Silvester expects this trend will increase.
![Anthony with his two sons, Michael, 3, and baby Paul in June 1987.](http://www.smh.com.au/content/dam/images/g/m/m/e/3/c/image.imgtype.articleLeadwide.620x349.png/1454633435454.png)
Anthony Virgona with his two sons, Michael, 3, and baby Paul in June 1987.
But stopping medical treatment throws up dilemmas for health professionals, with research showing some are more knowledgeable about patients' rights than others.
Intensive care specialist Peter Saul, of John Hunter Hospital and Newcastle Private, says there is a wide variation in how doctors deal with these requests, including strong opposition from some.
"There are loads of doctors who find it morally repugnant to not artificially feed somebody because they cannot feed themselves, plenty of nephrologists who refuse to let people take themselves off dialysis because they feel they are abetting suicide," he says.
Dr Saul says patients making choices about their medical care was a relatively new concept that the healthcare system was struggling to adapt to. With an ageing population, more chronic disease and better technology this is likely to become a major issue in the future.
"The idea that you would choose not to have dialysis wouldn't have happened even 10 years ago," he says. "It was seen as something that once you started you were obliged to continue until you died of something else."
![Anthony at his sister-in-law's house in the 1980's.](http://www.smh.com.au/content/dam/images/g/m/m/c/s/n/image.imgtype.articleLeadwide.620x349.png/1454633368651.png)
Anthony Virgona at his sister-in-law's house in the 1980s.
Mr Virgona points to a photograph of a fellow resident in the TV room at Cyril Jewell House. The elderly man's arms rest limp in his lap, his head is cocked forward, supported by a chin rest attached to the wheelchair he's sitting in.
"I don't want to go like that," says Mr Virgona, who was a woodworker but now can't grip a knife and fork.
"There's some residents here who can't move their arms, can hardly talk. Some don't even know you're there. People don't die from MS, they die from complications from MS. I know at least six people who deteriorated ... they suffered."
Mr Virgona had barely been sick a day in his life before his 36th birthday. He ran a successful fencing business and in his spare time made wood carvings of tulips to sell at markets. Then strange things started happening. He tripped over all the time. Had car accidents after mistaking the accelerator for the brake.
Before he was diagnosed with multiple sclerosis in January 1999 he hadn't heard of the disease, but it wasn't long before he was moved into the nursing home with a specialised neurological unit north-west of the city. That was 12 years ago.
![Anthony in 2000 receiving an award from The MS society.](http://www.smh.com.au/content/dam/images/g/m/m/b/9/5/image.imgtype.articleLeadwide.620x349.png/1454626868793.png)
Anthony Virgona in 2000 receiving an award from the MS Society.
For the past few years Mr Virgona has spent most of his time in his room on the computer. Or being shuttled to hospital three times a week so his blood can be pumped and purified. When it's not too hot, he sits in the back patio, where the planes pulling into Melbourne Airport rumble overhead. On Saturdays his sister and her children visit. On Sundays he goes to his Mum's for lunch.
He's bigger now than when he first arrived. His wide smile is gone and the olive skin betraying his Sicilian heritage in younger photographs seems to have faded. His face only lights up now when he talks about his family.
His Mum and auntie, he says, have accepted his decision, but his sister is struggling to cope. He's already phoned his ex-wife and two grown-up sons in Western Australia to say goodbye. They will fly in for the pre-arranged funeral and back in a day.
Mr Virgona gave away most of his belongings last week: his clothes to St Vincent de Paul; the butterfly posters that hung in his bedroom to Diane, who lives two doors down; his computer to the MS community group he served as vice-president on. His last woodwork project – "Anthony", engraved on pine with a soldering iron – is still fixed to his bedroom door like a headstone.
![Anthony at home in Keilor East last week.](http://www.smh.com.au/content/dam/images/g/m/m/b/b/7/image.imgtype.articleLeadwide.620x349.png/1454633627475.png)
Anthony Virgona at home in Keilor East last week. Photo: Pat Scala
On Friday he had his last dialysis. His two favourite nurses were rostered on and other staff made a special trip into the hospital to see him.
As the end of his life approaches, and as he shares a meal with his family for the last time today, Anthony says his overwhelming feeling is one of relief and being at peace. "I feel good about my decision," he says. "I'm not ashamed, I'm not really afraid. This last week has been smooth sailing.
"I'm proud of my achievements. I've always been an easy person to talk to, always listened to what people think. I was quite a shy kid but I've turned out to be outspoken. I'm not afraid to put my point of view forward. That's my legacy."
For help or information, call Lifeline 131 114 and beyondblue 1300 224 636.
- Beau Donelly
beau.donelly@fairfaxmedia.com.au
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