Maldon grandmother Joan Panos, 72, died in a hospice – rather than at home at a time of her choosing – after months of desperately seeking a specialist to sign off on her request.
Days after euthanasia laws came into effect in Victoria last June, a cancer-stricken Ms Panos visited her GP, telling him she was in so much pain she wanted to die that day. He assessed her and deemed her eligible for euthanasia.
She travelled to nearby Bendigo to visit an oncologist. He was compassionate, but conscientiously objected to helping her die.
Ms Panos and her daughter Narelle McNaughton spent weeks contacting every hospital in surrounding areas to find trained specialists signed up to the euthanasia scheme.
“There didn’t seem to be a clear pathway of where we could go from there,” Ms McNaughton said. “From this point on, mum told every palliative nurse or medical professional she saw she had no quality of life and asked them if they supported euthanasia.”
Her GP called voluntary assisted dying care navigators at the Peter MacCallum Cancer Centre, who connect trained doctors with dying patients wanting to access euthanasia laws. But there were more delays.
Ms Panos deteriorated quickly. She was admitted to a hospice in mid August and died two weeks later.
“There was nothing mum could do about the fact she had a terminal illness, but she had a very strong preference to make the choice to do it when she wanted and where she wanted,” Ms McNaughton said. “Watching her fade away in hospital and knowing it wasn’t what she wanted was devastating. She wanted to die at home, but we feel she was robbed of that.”
Mornington Peninsula GP Jack Knobel has also helped three terminally ill Victorians seeking permission to end their lives since the landmark laws came into effect in June.
Each fit the strict criteria, but the GP was forced to refer them all to specialists in Melbourne.
“To my knowledge, there are no neurologists or cancer specialists on the Mornington Peninsula able to help,” Dr Knobel said. “The issue is there’s a real lack of specialists at the moment outside of Melbourne and it’s been a major stumbling block.”
Two of Dr Knobel’s patients, who were in the advanced stages motor neurone disease, were transported to Melbourne by family to see neurologists, before being granted a permit for a lethal cocktail of drugs.
Dr Knobel contacted oncologists in Melbourne for another terminally ill cancer patient, when she suffered a stroke and died before being assessed by a second doctor.
“What it means is that the entire process might take an extra three or four weeks,” he said. “These are really sick people who are suffering terribly and they’re having to go all the way to Melbourne for a second opinion. As it stands, it’s just not fair.”
Victoria is the only jurisdiction with laws stipulating one doctor must be a specialist in the person’s disease.
“It is a bureaucratic roadblock that is inhibiting the way the laws were meant to work in Victoria,” euthanasia advocate Dr Rodney Syme said. “No other place in the world, including Western Australia, has laws which are so restrictive.”
Some doctors are pushing for a change to the Victorian legislation allowing for experienced GPs, who have relevant expertise in a person’s disease or condition, to step in as a secondary consulting doctor in exceptional circumstances when a person is on the verge of death and unable to find a specialist.
Dr Syme said he had been contacted by terminally ill people in Geelong and Warrnambool who had difficulty finding specialists signed up to the scheme.
Another man from Omeo in Victoria’s north-east had a rare neurological condition that caused him severe muscle and joint pain. He was deemed eligible for euthanasia by a GP, but was too gravely ill to travel the 390 kilometres to Melbourne to see a neurologist.
“He tried going to Wangaratta and couldn’t find a specialist,” Dr Syme said. “It all become too much and he simply gave up in frustration. He ended up in a nursing home. It was a tragic outcome because it was exactly what he didn’t want.”
The number of people who have died using the new laws is not yet known, but it is estimated more than a dozen people have taken their own lives since they came into effect.
Brunswick GP John Stanton, who has helped two patients obtain a lethal substance, said in his experience the laws were working effectively in Melbourne.
He conceded the laws were still in their infancy and teething issues were to be expected, but argued an amendment should be made allowing the secondary doctor to be an experienced GP.
“The role of the second doctor is simply to confirm the person actually meets the criteria,” he said. “This could equally be done by an experienced GP, particularly someone who has experience in the person’s condition.”
To date, 371 doctors have registered or completed the training including GPs, cancer specialists and palliative care clinicians, up from 120 in June.
A government spokeswoman insisted the scheme was working well and all 68 safeguards, including the requirement of a specialist doctor, were paramount.
She said processes were in place for those struggling to find a specialist and urged them to contact care navigators.
“Our support packages are for both patients and medical practitioners and have been used to facilitate specialist medical practitioners to travel into remote areas,” she said.
Melissa Cunningham is The Age’s health reporter.