Telehealth ban on assisted dying discussions causes suffering, family says

It's a crisp and bright Canberra autumn day. I am sitting outside at the Queen's Terrace Cafe in Parliament House with local family, Jason and Anthea Smith, and their adult children, Georgia and Brae.

They are here in support of the campaign of Go Gentle, an organisation I founded in 2016, to amend a federal law which threatens doctors with a $300,000 fine and a criminal record if they use electronic communications, such as the internet or phone, to discuss matters relating to voluntary assisted dying (VAD).

Even though telehealth is now an established part of healthcare, and despite calls for change from state health ministers and attorneys-general (along with the Australian Medical Association), the federal government will not budge. The prohibition stands.

With it, the suffering of dying people, forced to travel hundreds, sometimes thousands, of painful kilometres to see a doctor face to face, not once, but multiple times, in order to access their legal right to VAD. Or, alternatively, endure an agonising and fearful wait, hoping a doctor can get to them.

Telehealth ban hits remote communities hardest

Jason is here as a living example of what this ban means. Only he doesn't live thousands, or even hundreds, of kilometres from Parliament House. He lives 20km away, a 25-minute drive at most. But to get here today, took him, and the family, and his full-time-carer, three hours.

Jason has Motor Neurone Disease. The "Beast", as it's known by some. It's the same disease which took down AFL footballer Neale Daniher and which NRL player Jai Arrow has recently being been diagnosed with. Like those two men, Jason was young — just 39 – fit and strong, when he was diagnosed in 2017.

Looking at photos from this time, I see a large man, bearded and smiling with his youngest, Georgia. Perhaps not surprising, her description of him is as "a big teddy bear".

But, today, sitting in the Canberra sunshine, that Jason is scarcely recognisable. MND attacks nerve cells and causes muscles to waste away. It has no known cure and most people do not survive its ravages beyond five years.

To the astonishment of his doctors, Jason has lived with his MND for eight years. He's still at home, and determined to keep going. But the cost is clear to see.

Still a big man, Jason is now difficult to distinguish from the electric wheelchair that carries him everywhere, and which holds his medical equipment, including his NIV (Non-Invasive Ventilation) mask, which helps him breathe.

Rugged up in blanket and beanie by his teenage sweetheart Anthea, he can do nothing for himself, other than communicate with difficulty through long bouts of racking coughs. Every minute requires monitoring and assistance.

As Jason's muscles continue to die, and swallowing becomes more difficult, one of his greatest fears is he will choke to death.

That's why, on the very morning VAD became legal in the ACT last year, he became the first person to apply for it.

He's not alone. It's a remarkable fact that one third of Australians who've died of MND over the last year have made the same choice.

That choice not to suffer is of such importance. It doesn't remove the harsh inevitability, or sadness, of dying. But, by offering people control, it removes the fear of being forced to go through — and forcing your family to witness — the very worst.

The choice the church would deny

There has been no stauncher, or more powerful, opponent of VAD in Australia than the Catholic Church, and its many representatives in the medical profession.

As the fight for its legalisation progressed around Australia (it is now legal everywhere but the NT) they argued that VAD wasn't necessary because doctors had powerful drugs they could deploy at the end of life so people would not die in pain.

It was both true, and a clever sleight of hand. First, because it left all the power in the hands of the treating doctor, and his or her personal beliefs. But also because pain is just one of many things which can degrade a dying person's capacity to endure — let alone enjoy — their life.

When your systems start to collapse, as they had with Jason; when your dignity is stripped away; when there is no hope of something better on the path ahead, only fear and distress (yours, and that of the people who love you), the word to describe this is not 'pain'. It's 'suffering'.

Yet still the church argues, as it is now in the Northern Territory, its last frontier in the fight against VAD, that, rather than being given control of their own destiny, 'more must be done' to help people who are medically helpless. People like Jason.

"I'd like to see what we can do to help people in the dying process so they will not necessarily need to take their own life," says Darwin's Catholic Bishop, Charles Gauci.

What Bishop Gauci isn't saying is that the Vatican describes VAD as an "intrinsically evil act … that no end can justify". No matter your suffering, or how untreatable it may be, it is not up to you to take control. Only God will decide.

And if this means that you have no choice but to endure suffering you do not wish to endure? Well, there's virtue in that. As Sydney's Catholic Archbishop, the Reverend Anthony Fisher told the ABC in 2011:

"The thought is, for Christians, by uniting that suffering with the suffering of Christ, that it's part of building up their own virtue, their own contribution to the world. That it's not completely meaningless."

This is more than just a philosophical thought. Because the Catholic Church is also, by some margin, Australia's largest non-governmental healthcare provider.

Even when the hospitals it runs are funded by public money, it insists its values must prevail. In May, Queensland opened its first new public hospital since 2013, a 186-bed facility south-west of Brisbane, at a cost (including its first four years of operation) to the taxpayer of just over $1billion.

It will be run by Mater Health, part of Catholic Healthcare, which refuses to offer abortion, contraception, or VAD care at the hospital. As the chief executive explains: "We have always been a Catholic healthcare provider… There are alternative hospitals around where patients can access those services."

Had Jason no choice but to spend his last days in a faith-based hospital, he would either have been denied his right to VAD, or been forced to travel, at his most unwell and vulnerable, to another hospital which did support VAD, however far away that may be.

On his own terms

Fortunately, like many who choose VAD, Jason was able to die at home, surrounded by his family and immersed in love.

It's a choice the Catholic Church would have denied him.

He left on his own terms in June, even watching his favourite movie, 'Spaceballs', while waiting for the VAD team to arrive.

He left behind a family, grieving, but also deeply grateful for the peaceful, dignified manner of Jason's passing.

Anthea used one word to describe it: "Beautiful."

It's a moment the NT Parliament should keep in mind when it votes on VAD later this year.