'No choice in remote areas if terminally ill have no high-quality care'

In response to the passage of the Voluntary Assisted Dying Bill through the NSW Legislative Assembly, a palliative care specialist has warned that its provisions are likely to reduce rather than increase choice for people in remote areas who are approaching the end of life.

After three days of emotional debate, the contentious bill to legalise VAD in NSW was passed 53 to 36 on Thursday, 24 November, in the face of opposition from Premier Dominic Perrottet and Opposition Leader Chris Minns.

But Christian bioethicist Megan Best, who has offered critical submissions to inquiries by the Senate and the Victorian parliament, called out the NSW bill as “extremely dangerous”.

“It is actually written into the bill that everyone in NSW has a right to VAD regardless of where they live, but they are not given the same right to palliative care, wherever they live,” she said.

“So the bill prioritises the provision of VAD above care for people at the end of life. I mean, everyone’s talking about choice, but do you really have a choice if you can’t get high-quality medical care? Some people, particularly in remote areas of the state, might feel that they don’t have a choice [but to opt for VAD].”

With the bill’s backers pushing for a speedy resolution of 167 suggested amendments, parliament will sit past 10 pm on Thursday 2 December in a push to send the bill to the Legislative Council before the end of the year. Meanwhile, the Legislative Council will hold hearings into the provisions of the bill in December, before reporting back by the first sitting day in 2022, next February.

“It has less safeguards than the one that was rejected by parliament in 2017 … I think a lot of people have just given up fighting.” – Megan Best

As a research assistant for the Institute of Ethics and Society at the University of Notre Dame, Sydney, Dr Best said NSW would have had a better bill if there had been a “proper inquiry” before the parliamentary debate, as had happened in every other state that has legalised VAD.

“But this one was made without wide consultation and ignores important aspects of medical care of people at the end of life,” she said.

“At the moment, it’s an extremely dangerous bill. It has less safeguards than the one that was rejected by parliament in 2017. It’s extremely worrying. It’s a terrible bill. And I think a lot of people have just given up fighting and think that VAD is inevitable. However, it is the minority position – most parliaments around the world have rejected this kind of legislation.”

Catholic Health Australia also expressed alarm at the impact of the bill after MPs vote down a raft of amendments designed to protect the vulnerable such as the need for a specialist to give a diagnosis, stronger protections around decision-making capacity, the detection of coercion, and preventing health workers from initiating a discussion around VAD.

“We are disappointed the Lower House voted through the Bill, but what’s especially regrettable is it is shorn of all potential protections for the vulnerable,” Catholic Health Australia John Watkins said.

“Members of Parliament put forward a number of amendments designed to ensure that whatever Bill goes forward actually has safeguards to protect the vulnerable from coercion and ensure people who are ineligible do not get pushed towards voluntary assisted dying. This Bill was weak when it went into the chamber, but what has emerged is alarming.”

“This Bill was weak when it went into the chamber, but what has emerged is alarming.” – John Watkins

Mr Watkins said, for example, that the NSW Bill has no requirement for VAD doctors to have relevant expertise and experience in the disease, illness or medical condition expected to cause the death of the person being assessed. “

“That is contained in the Victorian VAD legislation and is a necessary safeguard to ensure that at least one of the two participating doctors has expertise and experience in relation to the relevant disease, illness or medical condition and treatment options.”

Dr Best believes that when someone expresses a desire for a hastened death, it is actually a cry for help. However, doctors who conscientiously object to administering VAD will have to immediately tell the patient they won’t support their request, which means they are no longer free to respond to the patient’s call for help in a way they normally would.

“VAD is very bad for people’s spiritual journey because we know that towards the end of life, existential questions come up and people start talking about spirituality more than they have previously,” Dr Best said.

“But if healthcare workers can’t pursue those questions, those areas of disquiet, and support the patient in that space, the patient may opt for VAD rather than exploring those what can be difficult issues.”

“VAD is very bad for people’s spiritual journey.” – Megan Best

Dr Best pointed out that doctors as a group have the highest level of opposition in the community to VAD, but had been too caught up in COVID-19 care to mount a campaign against it.

“But we have been completely sidelined. And the politicians haven’t taken the care to understand the way end-of-life care is practised in quality palliative care units,” she said.

She said the Institute for Ethics and Society had written to the Premier early in the legislative process saying it was the wrong time to debate something that “would so radically change the way medicine is practised, when healthcare workers are exhausted from the COVID pandemic, but nobody has really listened to the medical voice in this whole process.”