Andrew Denton: The right to die is not enough

Ten years after launching his campaign for voluntary assisted dying, Andrew Denton says some Australians are still being denied the choice the law was designed to protect. His concerns about aged care deserve particular attention.

I took the time this week to watch the replay of Andrew Denton’s National Press Club address on ABC iview.

His speech had been making headlines for several days, particularly his announcement of a new research fund and his determination to keep pushing for changes to Australia’s voluntary assisted dying laws.

One part of the address was compelling. Denton described people who had reached the end of their lives, made a considered decision about how they wanted to die and then discovered that the hospital or aged care home looking after them would not allow the process to take place.

Some were required to leave the place they had come to regard as home, despite being desperately ill. Their families were left trying to make alternative arrangements while time was running out.

And the problem, according to research cited by Denton, extends well beyond a handful of cases. Of 70 major aged care providers contacted by his organisation, Go Gentle Australia, just seven offered residents comprehensive information and full access to voluntary assisted dying.

It’s a striking finding, and one that raises serious questions about what families are told when choosing residential aged care.

A legal right, but not always a practical one

Denton first addressed the National Press Club on this issue in August 2016, when voluntary assisted dying remained illegal across Australia. He had established Go Gentle Australia following years of investigating the suffering experienced by terminally ill people, including his own father.

A decade later, every Australian state and territory has passed voluntary assisted dying legislation, although the Northern Territory’s scheme is not yet operating.

Denton told the Press Club that at least 10,000 Australians had used voluntary assisted dying since the first modern state laws came into operation. Their median age was 75.

He said four in five people who chose it had also received palliative care, an important reminder that the two approaches are not necessarily mutually exclusive. Yet legalisation has exposed another problem: some people who qualify for voluntary assisted dying are finding it extraordinarily difficult to access.

For residents of aged care facilities, the consequences can be particularly distressing.

Denton described instances where permanent residents were required to leave their facilities for assessments, even when moving them caused significant suffering.

He also recounted the experience of Robert, a man dying from motor neurone disease whose aged care provider refused to facilitate voluntary assisted dying. Robert died before another arrangement could be made.

His daughter Renee’s words were difficult to hear.

“How could they say no to someone in their greatest time of need, physically, mentally and emotionally? This was the wrong thing for Dad. You can’t kick someone out on their deathbed.”

Hospitals and aged care providers may have religious or moral objections to voluntary assisted dying, and the laws recognise conscientious objection in various ways. However, the obligations of institutions differ between jurisdictions, as do the protections available to patients and residents.

Denton argues that an institution’s right to object should not prevent a legally eligible person from accessing care through an independent practitioner.

When a hospital says no

Two other accounts in Denton’s address illustrated the difficulties families can encounter.

Robbie was only 31 when she was diagnosed with terminal cancer, and she received treatment at a publicly funded, faith-based hospital, where she trusted her medical team.

But when she requested voluntary assisted dying, she was told the assessments, and administration could not take place on the premises.

Her mother, Gina, described the ordeal of transporting her seriously ill daughter for assessments, including difficulties moving her medical equipment and managing her pain. Robbie eventually died at her father’s home, where she was able to access voluntary assisted dying.

Gina said the experience had robbed the family of precious peace and time.

Then there was Tricia, a woman in her 50s with advanced cancer who had begun the assessment process before becoming too unwell to leave hospital. According to Denton’s account, the hospital’s policy prevented her from completing the process there. She died without receiving voluntary assisted dying.

These are accounts presented by an advocate for reform and should be understood in that context. The hospitals involved were not identified in the address, and their responses were not provided.

Nevertheless, the experiences raise questions about how institutions communicate their policies, how they support patients seeking outside services, and what happens when transferring someone is medically dangerous.

During the question-and-answer session, Denton made clear that he respects the right of healthcare professionals to conscientiously object.

“I strongly support — and all VAD advocates do — the right to conscientiously object,” he said. “However, how people feel and what they believe should be separated from how they choose to act.”

His proposed solution is to require hospitals to permit external voluntary assisted dying practitioners to provide services, with arrangements that respect the institution’s position.

For religious healthcare organisations, participation in assisted dying can conflict with deeply held beliefs about the sanctity of life and the responsibilities of medical care. Those concerns deserve consideration, alongside the wishes and circumstances of patients who are legally eligible for voluntary assisted dying.

The extraordinary journeys of the terminally ill

Denton also highlighted the difficulty of accessing voluntary assisted dying outside major population centres.

Under the current interpretation of federal criminal law, doctors face restrictions on using telephone and internet services for parts of the voluntary assisted dying process. That means seriously ill people may need to travel long distances for consultations that could otherwise be conducted by video.

Denton spoke about Shane Lewis, a 65-year-old Melbourne man diagnosed with aggressive motor neurone disease. Shane lived about 90 minutes from his nearest participating doctor. During one journey, he lost control of his bowels. His wife Marlene, already exhausted by the demands of caring for him, had to clean him up in a public toilet on a day when the temperature reached 37 degrees.

Their daughter Nicole described the toll on the family.

“Terminally ill people do not have time to waste. They should be at home making memories with their families, not being dragged across the state by exhausted carers for appointments that could be done by video call.”

Denton also described a Queensland case in which doctors travelled a combined 8,500 kilometres to help a terminally ill man. The necessary medication did not arrive before he died.

The Australian Medical Association and other organisations have supported removing the federal barriers to telehealth for voluntary assisted dying. There are genuine questions about safeguards, patient capacity and ensuring that decisions are voluntary. Any legislative change needs to address them.

Denton’s argument is that allowing doctors to use telehealth where clinically appropriate would not mean removing the face-to-face requirements and independent assessments already built into the system.

The questions families need answered

Towards the end of his address, Denton turned to an issue familiar to many older Australians, particularly those who have watched a loved one live with advanced dementia.

He said dementia was, by a considerable margin, the subject his organisation was asked about most often. Current Australian voluntary assisted dying laws require a person to have decision-making capacity at key stages of the process. An advance care directive cannot simply authorise someone else to arrange voluntary assisted dying after that capacity has been lost.

Denton acknowledged the enormous ethical difficulty involved.

“The disease is complex, and asking a doctor to end the life of someone who cannot look them in the eye and say, ‘Yes, this is what I want,’ is an enormous challenge.”

Go Gentle Australia’s new research fund will begin by examining the views and experiences of voluntary assisted dying practitioners concerning dementia. It is a sensitive area, particularly when considering the rights and protection of people who can no longer express their wishes. Research into the issue should not be confused with any immediate proposal to remove existing safeguards.

For families considering aged care, however, there is a more immediate question.

During the National Press Club discussion, Denton was asked whether hospitals and aged care homes made their voluntary assisted dying policies clear before people entered their care.

“Not always, no,” he replied.

“Particularly in aged care, what we discovered was very poor communication of providers’ positions.”

Families may wish to ask prospective aged care facilities whether they permit voluntary assisted dying assessments on site, whether external practitioners can visit, and what arrangements exist if the provider itself does not participate.

Discussions about palliative care, pain management, advance care planning and support for residents and families are equally important.

Denton ended his address by recalling some of the people he had encountered during his decade of advocacy. There was a man who wanted to wear his football colours, another who wanted a final swim, and one who simply wanted to stop for a soft-serve ice cream and show his wife how to put air in the car tyres.

They were ordinary moments, made particularly precious by the knowledge that time was running out.

Not every Australian will agree with Denton’s position on voluntary assisted dying. Some have profound religious or ethical objections. Others regard the laws as an essential protection against suffering.

But after watching his address, I kept returning to the families who discovered the limits of their loved ones’ options when there was so little time left. Whatever our views on voluntary assisted dying, people approaching the end of their lives deserve to know what care is available, what choices they have and whether the institution looking after them will respect those choices.

It is a conversation worth having long before a family finds itself facing the worst possible circumstances.