Telehealth ban for voluntary assisted dying makes life, and death, difficult for the terminally ill in the country – ABC News

Carol Onley, 66, is dying.

She's leaving behind unfinished paintings in her "she-shed", a loving extended family, and a supportive partner.

"More than 10 years ago now, I had my first diagnosis of lung cancer which was amazingly shocking," she said.

After a successful surgery and course of immunotherapy, Carol got back to living.

"But in 2019 I had some symptoms which seemed quite unusual, so I went and had a CT scan, and yes, those little nodules had now absolutely exploded."

After a lifetime as a mental health nurse and a smoker, Carol knew what was ahead of her.

"Through my nursing career I was quite aware of voluntary assisted dying (VAD), that it had become available to people in my position," she said.

"[At the] beginning of this year, I've embarked on that program."

ABC Gippsland: Rio Davis

Under Victoria's VAD program, two doctors need to independently verifythe patient is of sound mind and has less than six months to live for a physical illness and 12 months for a neurological condition.

But living in regional Victoria has made the process more difficult.

"I was actually shocked to find in Gippsland there were only two doctors available who could make that assessment," Carol said.

There are just 76 doctors in regional Victoria trained to help terminally ill people access the VAD program.

"I have family, I have good supports who've helped me all through this and they can take me to wherever I've needed to go," Carol said.

"I've just wondered about people who live further afield from Orbost or Bairnsdale, if you don't have quite so much good access to supports, how do they access the program?

"There just seemto be some barriers that are a little too difficult for people to overcome."

Victoria's VADprogram, which came into force in 2019, was the first state-based program in Australia.

In a statement, a Victoriangovernment spokesperson said the legislation was leading Australia.

"Our voluntary assisted dying laws are giving Victorians with an incurable illness at the end of their lives a compassionate choice," they said.

"This service has been expanded through regional Victoria and we continue to encourage more medical practitioners to become involved to allow greater access across the state."

But the board charged with reviewing the program found there were "limited numbers" of GPs trained to consult on euthanasia in far east and west Victoria.

Supplied: Voluntary Assisted Dying Review Board

A former Justice of the Supreme Court of Victoria, Betty King, is the chair of that board.

Supplied: Betty King

"[We've recommended the government] encourage more specialists to do the training and sign up for the program,it's a busy practice andthere is so much for most specialists in regional Victoria to do, without this additional time," Justice King said.

"It does take time.This is not an easy and quick process.

"It's certainly been one that's designed to be safe, and when you have a lot of safeguards built in it does take time, so it's very difficult for them to take that time out of their practice."

Victoria's Voluntary Assisted Dying board is set to table its final report onthe program in Parliament in August.

But as other states bring in VAD programs of their own, there isanother problem facing regional Australians trying to access euthanasia.

"So much now in medicine, particularly regionally, depends upon telehealth; unfortunately telehealth is not permitted for VAD, because federally some legislation was introduced to prevent [euthanasia advocate] Dr [Philip] Nitschke from sharing methods of suicide online," Justice King said.

Breaking these laws could incur fines of up to $222,000 for individuals or $1,110,000 for businesses.

"It potentially prevents our doctors in Victoria from being able to use telehealth to discuss things and talk to patients and that really is a major inhibitor," Justice King said.

"We have called on the Commonwealth to just exempt voluntary assisted dying from it, because we are a government, organised, legal process, but so far they have not been willing to do so."

In a statement, the federal government said people should have access to quality palliative care.

"The government has no plans to amend the suicide-related material offences in the Criminal Code."

ABC News: Jacqueline Breen

DrNitschke, once investigated for testing the purity of a drug usedin a terminally ill man's suicide, said the introduction of the amendment in 2005 was targeted.

"It's often a piece of legislation that I think people aren't aware of, and it was an insidious introduction that came in under the Howard government with Philip Ruddock as Attorney General, that I think the public were never really aware they were having a pretty basic and fundamental freedom eroded," he said.

As more states begin their VAD programs, Dr Nitschke said the federal government neededto change the code to ease the burden on regional Australians.

"It's certainly something that needs addressing if we're to see uniform legislation and equal access to what's available in these new end of life pieces of legislation sweeping across Australia," he said.

In geographically vast Western Australia, the tyranny of distance will rule regional access when its voluntary assisted dying program begins in June.

Western Australia's Australian Medical Association president,Andrew Miller, said more resources would be needed to compensate for the ban on telehealth.

"It's the same situation that there is in Victoria, things have to be put in place to enable face-to-face consultation, they're going to have to put some resources into that," Dr Miller said.

The Australian Capital Territory, Northern Territory and Norfolk Island have not been able to make laws on euthanasia since the federal government quashed the NT's program in 1997.

Two weeks ago, the ACT's health minister and oppositionleader passed amotion of "profound disappointment" that the federal government was continuing to block euthanasialaw.

A statement made by the federal government in response said:

"The government currently has no plans to repeal the Euthanasia Laws Act 1997."

ACT Health Minister Tara Cheyne said the federal government's ban on territories making euthanasia laws was a human rights issue.

"There is a separate issue here from voluntary assisted dying it is about democratic rights and we'd like to see the call coming from right across federal parliament," she said.

Supplied: Carol Onley

Carol does not know when she is going to take the drugs that will end her life.

It is a delicate balance.

"You've gotta be with it enough to do it, so I can't let the situation roll on too far, I've got to have enough dexterity to take the medication," Carol said.

"It's very confronting.

"I've been with family members who've passed away my sister had Motor NeuroneDisease, she had to go right to the end of that disease because there were no other options for her."

After a life of adventure, service and love, Carol admits she's a little bit of a "control freak".

"I am so grateful to have the opportunity to die with dignity," she said.

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Telehealth ban for voluntary assisted dying makes life, and death, difficult for the terminally ill in the country - ABC News