Telehealth Ban Meant Sue Died Before Accessing Assisted Dying

ABC Gippsland

Topic: Euthanasia

Sue Collins died within nine weeks of being diagnosed with motor neurone disease.

In short:

Patients and families are calling for changes to laws that prevent telehealth from being used in the voluntary assisted dying process.

VAD is legal in Victoria, but federal legislation prevents doctors from using telehealth.

What's next?

A bill has been reintroduced into parliament calling for an amendment to the legislation.

When Susan Collins got sick in 2023, it started with back pain, slurred speech and reflux.

Soon she was struggling to eat.

And when a neurologist confirmed Sue's diagnosis, her husband of 52 years, Ken, said she knew exactly how she wanted her life to end.

She knew that straight away.

But as regional Victorians, that process was going to be more difficult than they anticipated.

Sue with two of her children, Kristin and Matthew, in happier times.

Preparing for the end

Voluntary assisted dying has been legal in Victoria for eligible adults since June 2019.

Under the legislation, a patient needs to have two face-to-face consultations with a trained medical practitioner and make a written request for VAD.

Sue with Kristin at her wedding.

Sue and her husband were able to see their local GP, who was trained in VAD, but struggled to get in to see a specialist.

Sue and Ken Collins were married for 52 years.

It took five weeks to get that appointment with a specialist in Melbourne, a 1.5-hour drive from their home in San Remo in the state's south-east.

And by then, Sue's condition had deteriorated to the point where she could no longer eat, speak clearly or walk.

On the way home from the specialists, we received a phone call from VAD advisers and we were informed as Sue couldn't swallow, it was going to have to be administered by a GP.

As her full-time carer, Ken believes the extra delays and obstacles as regional residents prevented his wife from having the choice she deserved.

'Takes away your dignity'

Sue had only nine weeks from the time of her diagnosis to her death.

Mr Collins believes they were robbed of time together due to the challenges of trying to get appointments to access VAD.

Ken and Sue Collins at their wedding on September 2, 1972.

We couldn't make plans, she lost her voice. We couldn't communicate.

When I was having trouble getting the appointment for the neurologist, it's supposed to be regarding dignity.

Telehealth ban

Despite VAD being lawful in all Australian states and the ACT, federal criminal law prevents any form of telehealth as part of the process.

Doctors are prevented from giving consultations via telephone or video call and prescriptions for medication cannot be sent digitally or even faxed.

Nick Carr was one of the first doctors in Victoria to be VAD-trained.

Retired Victorian GP Nick Carr was one of the state's first VAD-trained doctors and is a board member with advocacy group Dying with Dignity.

Dr Carr said he regularly met with regional patients who had trouble accessing VAD.

By definition if you are having voluntary assisted dying you are often very unwell and people in regional areas often struggle to find doctors who are qualified in voluntary assisted dying care.

In 2023, Dr Carr and Dying with Dignity took legal action against the then attorney-general in the Federal Court over the telehealth prohibition.

The court found against him.

Under the criminal code, the Federal Court found that using telehealth for VAD would be interpreted as encouraging suicide, a criminal offence.

The finding was that VAD was a form of suicide and to me this was completely appalling.

I felt very disappointed because the court hearing turned out to be a battle of dictionaries; it was all about semantics.

'Significant barriers'

VAD charity Go Gentle Australia's chief executive Linda Swan said cases like Sue's were common.

Linda Swan says regional Australians face unfair barriers to accessing VAD.

The charity recently presented its State of the VAD report to federal parliament, outlining the regulation and uptake of VAD across the country.

Dr Swan said there remained significant barriers to VAD for patients, particularly those from regional areas.

There's limited access to specialists. You often have to travel long distances to receive the care because it's not available in your home town.

The latest report shows 63 per cent of registered VAD practitioners are based in Melbourne.

Calls for change

Independent federal MP Kate Chaney reintroduced a bill to federal parliament to change the criminal code, to make it clear that VAD is not suicide.

Kate Chaney wants regional patients to be able to use telehealth to plan their voluntary assisted death.

Telehealth is an essential part of modern health care. In rural and remote Australia it's often the only way to access specialist care.

For people who are seriously ill or frail, telehealth can prevent unnecessary suffering.

Ms Chaney has called on the government to consider the bill and amend the legislation.

A spokesperson for Attorney-General Michelle Rowland says the federal government is continuing to consider the issues around VAD legislation with the states.

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Telehealth Ban Meant Sue Died Before Accessing Assisted Dying

ABC Gippsland

Topic: Euthanasia

Sue Collins died within nine weeks of being diagnosed with motor neurone disease.

In short:

Patients and families are calling for changes to laws that prevent telehealth from being used in the voluntary assisted dying process.

VAD is legal in Victoria, but federal legislation prevents doctors from using telehealth.

What's next?

A bill has been reintroduced into parliament calling for an amendment to the legislation.

When Susan Collins got sick in 2023, it started with back pain, slurred speech and reflux.

Soon she was struggling to eat.

And when a neurologist confirmed Sue's diagnosis, her husband of 52 years, Ken, said she knew exactly how she wanted her life to end.

She knew that straight away.

But as regional Victorians, that process was going to be more difficult than they anticipated.

Sue with two of her children, Kristin and Matthew, in happier times.

Preparing for the end

Voluntary assisted dying has been legal in Victoria for eligible adults since June 2019.

Under the legislation, a patient needs to have two face-to-face consultations with a trained medical practitioner and make a written request for VAD.

Sue with Kristin at her wedding.

Sue and her husband were able to see their local GP, who was trained in VAD, but struggled to get in to see a specialist.

Sue and Ken Collins were married for 52 years.

It took five weeks to get that appointment with a specialist in Melbourne, a 1.5-hour drive from their home in San Remo in the state's south-east.

And by then, Sue's condition had deteriorated to the point where she could no longer eat, speak clearly or walk.

On the way home from the specialists, we received a phone call from VAD advisers and we were informed as Sue couldn't swallow, it was going to have to be administered by a GP.

As her full-time carer, Ken believes the extra delays and obstacles as regional residents prevented his wife from having the choice she deserved.

'Takes away your dignity'

Sue had only nine weeks from the time of her diagnosis to her death.

Mr Collins believes they were robbed of time together due to the challenges of trying to get appointments to access VAD.

Ken and Sue Collins at their wedding on September 2, 1972.

We couldn't make plans, she lost her voice. We couldn't communicate.

When I was having trouble getting the appointment for the neurologist, it's supposed to be regarding dignity.

Telehealth ban

Despite VAD being lawful in all Australian states and the ACT, federal criminal law prevents any form of telehealth as part of the process.

Doctors are prevented from giving consultations via telephone or video call and prescriptions for medication cannot be sent digitally or even faxed.

Nick Carr was one of the first doctors in Victoria to be VAD-trained.

Retired Victorian GP Nick Carr was one of the state's first VAD-trained doctors and is a board member with advocacy group Dying with Dignity.

Dr Carr said he regularly met with regional patients who had trouble accessing VAD.

By definition if you are having voluntary assisted dying you are often very unwell and people in regional areas often struggle to find doctors who are qualified in voluntary assisted dying care.

In 2023, Dr Carr and Dying with Dignity took legal action against the then attorney-general in the Federal Court over the telehealth prohibition.

The court found against him.

Under the criminal code, the Federal Court found that using telehealth for VAD would be interpreted as encouraging suicide, a criminal offence.

The finding was that VAD was a form of suicide and to me this was completely appalling.

I felt very disappointed because the court hearing turned out to be a battle of dictionaries; it was all about semantics.

'Significant barriers'

VAD charity Go Gentle Australia's chief executive Linda Swan said cases like Sue's were common.

Linda Swan says regional Australians face unfair barriers to accessing VAD.

The charity recently presented its State of the VAD report to federal parliament, outlining the regulation and uptake of VAD across the country.

Dr Swan said there remained significant barriers to VAD for patients, particularly those from regional areas.

There's limited access to specialists. You often have to travel long distances to receive the care because it's not available in your home town.

The latest report shows 63 per cent of registered VAD practitioners are based in Melbourne.

Calls for change

Independent federal MP Kate Chaney reintroduced a bill to federal parliament to change the criminal code, to make it clear that VAD is not suicide.

Kate Chaney wants regional patients to be able to use telehealth to plan their voluntary assisted death.

Telehealth is an essential part of modern health care. In rural and remote Australia it's often the only way to access specialist care.

For people who are seriously ill or frail, telehealth can prevent unnecessary suffering.

Ms Chaney has called on the government to consider the bill and amend the legislation.

A spokesperson for Attorney-General Michelle Rowland says the federal government is continuing to consider the issues around VAD legislation with the states.

ABC Gippsland — local news in your inbox

Promotion

Top Stories

Topic: Missing Person

LIVE

Topic: World Politics

LIVE

Top Stories

Topic: Missing Person

LIVE

Topic: World Politics

LIVE

Just In

Topic: Animals

Topic: Drownings

Perspective by Skye Cusack

Topic: Transport Industry