Photo: RNZ
Correction: There were 41 participants in the interview study by Professor Sinead Donnelly and colleagues, not 21 as previously reported.
Nearly 2500 New Zealanders have applied for a physician-assisted death since the End of Life Choice Act came into effect in November, 2021. As at 24 September, 970 had died this way.
The legislation requires the Ministry of Health to review the Act within three years of it becoming law, and every five years after that. The review has two parts, a ministry review and an online process to gather public opinion, and will finish in November. Public submissions closed on 26 September.
Some advocates of assisted dying wanted to broaden the eligibility criteria. Others cautioned against that, saying better access to palliative care was needed, instead.
The six-month rule
To be eligible, a person must meet all of six criteria. One of the most controversial requires that a person is suffering from a terminal illness likely to end their life in six months.
"The six-month rule was never my original intention," ACT Party leader David Seymour, who campaigned on the issue and successfully passed the law through Parliament, told RNZ. "It was introduced as a necessary political compromise to secure the votes needed to pass legislation."
He had heard "powerful stories of patients who've been empowered to choose a time and place to spend their last moments surrounded by people they love". "But the political compromise has also seen cases where terminally ill [New Zealanders] in immense pain continue to suffer, just because they can't prove a six-month prognosis."
The End of Life Choice Society told Nine to Noon while the law was working well for some, in its current form it excluded some of those who needed it most.
"The people who suffer the longest are the ones with the slow-killing diseases ... and they can't qualify because of the [six-month clause]," national president Ann David said. She would prefer wording along the lines of Seymour's original draft: "Grievous and irremediable."
Advanced directives
Health psychology researcher Aida Dehkhoda, who has a PhD in assisted dying in the context of dementia, told RNZ since its implementation, the assisted dying service has become "increasingly integrated into the health and social care system".
Two of her recent research projects, with colleagues at Auckland University and Victoria University of Wellington, have focused on the early experience of assisted dying in Aotearoa.
Some of the findings are yet to be published, but suggested eligible patients and their families "primarily expressed gratitude for having the choice to die on their own terms".
The most common challenge expressed about the eligibility criteria related to the six-month prognosis: "With regards to the provision of assisted dying services for people with dementia, some participants thought dementia should be included in the Act via advance directives," Dehkhoda said.
Her PhD findings on the subject showed safeguards were possible. "However, the ethical, legal, and practical challenges and implications of introducing such directives and how to safeguard its provision in the New Zealand context requires further research."
So-called 'gag clause'
Palliative care specialist and senior lecturer at Otago University's bioethics centre Dr Janine Winters told RNZ it was "really difficult" to predict "what you'll be like with dementia".
In some cases - and she stressed it was only some - people with dementia let go of previously "crippling" anxiety or obsessive-compulsive disorders. "They have friendships, relationships, and every day is a new and happy day."
One case in the Netherlands made headlines, years ago, after an elderly dementia patient had to be held down as she was given a lethal injection.
"When things do go wrong, the amount of trust you have with the public can disappear so quickly."
There were also calls to review the rules that stopped doctors from being able to raise assisted dying with their patients.
"Very reluctantly, I came to the consensus I'd probably allow [practitioners] to bring it up spontaneously but under very constrained circumstances. In a full, sit-down conversation, with written materials," she said.
"I have spent my professional life telling people from minority groups we won't kill them if they come into hospice. There's still this idea, they know they've been treated poorly, historically, by the medical system. And they wonder: 'What if my life isn't valued?'."
Ongoing concerns
Professor Sinead Donnelly, a specialist in palliative medicine and advocate against legalising assisted dying, said she expected to see safeguards "gradually be changed".
"I think it would be unwise, but that's what's happening in Canada."
Canada has one of the most liberal assisted dying systems and one of the highest rates of euthanasia in the world, with just over 4 percent of deaths aided by doctors. (That figure is below 1 percent in New Zealand.)
"[Removing the six-month clause] is an unfortunate but logical progression, if you say a person should be eligible if they have intolerable suffering," Donnelly said.
As part of a research project, Donnelly and colleagues at the end of 2022 interviewed 41 doctors, nurses, and social workers in four hospices in New Zealand about their experience of the Act.
The participants highlighted tension between their role, to relieve suffering, and the Act's eligibility requirement of "experiencing unbearable suffering that cannot be relieved in a manner that the person considers tolerable".
"It's not surprising someone experiences distress as they're facing dying. In the past, palliative care would engage with that. But if someone says they're signing up for assisted dying, that's the end of the conversation. That's what the [research] participants have described."
The research found patients were requesting assisted dying not just because of physical pain but for "existential distress" - in some cases, related to "feeling a burden".
"Their focus moves towards the [assisted dying] assessment and setting a date," Donnelly said. "The natural growth and healing that would occur - it's a common phrase in the world of palliative care, 'to die healed' - is prematurely ended. And that's a great sadness to the specialists."
In its submission to the review, the Australian and New Zealand Society of Palliative Medicine (ANZSPM) recommended the legislation be amended to mandate specialised training for medical practitioners in how to detect coercion.
While the Act states that "no further action be taken if pressure is suspected", the society said assessing for signs of coercion wasn't commonly part of medical training, and the attending and independent medical practitioners involved in the assisted dying assessment may have only met the patient once before.
The society also recommended adding a two-week "cool off" period between requesting assisted dying and going through with it, as well as removing the need to book a date.
"Currently the only full-funded pathway to die is the assisted dying pathway," the submission said. "Such inequity can create undue and often unspoken pressure on individuals to seek assisted dying because of the feeling of being a burden to their family and the financial cost involved with natural dying."
Who's using it?
Otago University's department of primary health care and general practice associate professor Ben Gray has long been concerned about assisted dying increasing inequities in the health system.
In 2020, Gray wrote: "There has been little discussion about whether, if we accept this is ethical, introducing a regimen to enable this is a sufficient current health priority to justify the funding required to operationalise the Act."
It was likely the Act would benefit "a small but increasing number of people over time likely from a group who can afford the costs and who already got significant benefit from our health system".
Indeed, Seymour in April told RNZ assisted dying had always been utilised by "the more educated, the more assertive, and more wealthy people".
More than 80 percent of assisted dying applications were from New Zealand European / Pākehā people, according to Te Whatu Ora. More than three-quarters of them were receiving palliative care at the time.
"I'm not suggesting those who've accessed [assisted dying] aren't deserving," Gray told RNZ in an interview this month.
He didn't have a problem with the Act, he said. But he didn't agree with it being funded from the public purse.
"We could have made it legal without funding it," he said. "[Health] funding is scarce and if you pay for one thing, you don't pay for another thing. A sum of money has been spent on [the Act] that could have gone to after-hours GP services, or funding another doctor in Northland."
Hospice New Zealand chief executive Wayne Naylor told RNZ he wanted to shift the focus away from assisted dying, and put more attention "on the need for better access to palliative care across the country".
While assisted dying remained controversial, "what is not under debate on both sides [...] is that every person with a terminal illness has a right to high-quality palliative care as an essential part of our national health system".
The sector was plagued by the lack of a national strategy, lack of stable, sustainable funding from government, and workforce challenges, he said.
Around half of the total cost of providing hospice care comes from Te Whatu Ora contracts. The rest was raised through second-hand shops, fundraising, and donations.
"Access to palliative care, particularly in the community throughout hospices, is not guaranteed."
What's next?
While the review was required to happen this year, it could be many more years before any changes to the legislation were made, if at all.
The ACT-National coalition agreement stipulated "any potential future changes [are] progressed by way of a member's bill, recognising this is a conscience issue".
Earlier this month, ACT's Todd Stephenson introduced a member's bill that would remove the six-month rule.
Dr Jeanne Snelling, a senior law lecturer at Otago University and part of a team at Victoria University of Wellington researching the experiences of people across the assisted dying process, led by Dr Jessica Young, said a lot of changes could be made at a policy level, and didn't need to involve a law change.
The researchers heard from patients who didn't want others - health professionals included - to know they were opting for assisted dying, "because they're scared they'll be judged" or even dissuaded, Snelling said. A lack of communication and understanding from health professionals also contributed.
Here, policy changes could drive social changes, she said: Better workforce training could help reduce stigma and provide more options for patients, even if they were in the care of a provider who conscientiously objected to assisted dying.