Assisted dying now legal in New Zealand, End of Life Choice Act a 'huge relief' for some
Hannah Martin05:00, Nov 07 2021Stuart Armstrong has given a lot of thought to the end of his life. Now, reassured with the knowledge he may one day be able to access assisted dying when it all “goes south”, he can focus on living.
Last October, two-thirds of New Zealanders voted yes (65.1 per cent) in a referendum to enable the End of Life Choice Act to be passed into law. On November 7 the legislation comes into force, enabling eligible terminally ill Kiwis to choose to end their lives.
The 61-year-old from Lincoln, outside Christchurch, has terminal prostate cancer. The disease has spread to his skeleton, and is incurable.
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Stuart Armstrong with his wife Rebecca and their dog Stellar, pictured in the lead-up to the End of Life Choice Act referendum late last year. Armstrong has terminal cancer, and says the choice the Act affords him is life-changing.
A vocal campaigner for the act, Armstrong is not eligible to access voluntary assisted dying at present, but says having the option when the time comes is a “huge relief”.
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Sunday marks a monumental shift for New Zealand, and puts us among a small but growing number of places to have passed similar laws.
It is not yet clear how many Kiwis may seek assisted dying, but the number is expected to be small.
To be eligible, a person must have a terminal illness likely to end their life within six months. They must have significant and ongoing decline in physical capability, and experience unbearable suffering that cannot be eased in a manner they find tolerable.
For Armstrong, it means he can “park” concerns about dying and get on with living – getting “the most out of the days you’ve got” – knowing assisted dying is there to “fall back on” if he so chooses.
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The End of Life Choice Act comes into force on November 7, enabling eligible terminally ill Kiwis to access assisted dying if they choose.
“I live so much better day-to-day since the [referendum] result, because I know it is all taken care of.”
Armstrong said it was unusual for younger people to live a decade after a terminal prostate cancer diagnosis. He is seven years in, and recent test results show treatment is holding the disease at bay.
“As sad a time as it is, [it] is so much easier with that choice,” he said.
It is “life-changing in terms of how you live your last few years. I’m certainly living it that way now”.
Even with a majority vote, assisted dying remains an emotive and polarising issue.
Those opposed say euthanasia weakens society’s respect for the value and importance of human life and can lead to worse care for the vulnerable, including those with disabilities and the terminally ill. Those in support of assisted dying say it is a person's right to choose when and how they die, and euthanasia affords them the right to die with dignity.
Based on overseas experiences, the Ministry of Health estimates up to 950 people could apply for assisted dying each year, with up to 350 being assisted to die. But there is uncertainty about what the actual demand will be.
In Victoria, Oregon, and Canada, assisted dying accounts for between 0.3 and 2 per cent of all deaths; with 124 confirmed assisted deaths in the first 12 months Victoria offered the service.
As of October 27, 96 doctors across the country have expressed interest in being included on the Support and Consultation for End of Life in New Zealand (SCENZ) group list to act as an attending medical practitioner in the assisted dying process.
Eight nurse practitioners have put their hand up to be on the list; 13 psychiatrists have expressed their interest to perform assessments if requested; and 93 have expressed interest in independent practitioner second assessments.
The lists are enduring, and the numbers will likely change over time.
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People are not eligible for assisted dying under the act if the only reason they give is that they are suffering from a mental disorder or mental illness; have a disability of any kind; or because of their advanced age.
The ministry expects assisted dying services will be provided mainly by general practitioners, in a person's home or other community settings. What impact this will have on an already stretched health workforce is unknown.
More than 6000 health professionals have completed the training module available to health workers, and 129 medical and nurse practitioners have accessed training.
Sixty-four per cent of practicers happy to be involved are in the North Island, and 36 per cent in the South Island.
The ministry said there was “good spread” across the country, but not every location may have a one available. Practitioners who need to travel will be funded to do so.
The assisted dying conversation also shone a light on the underfunding and inequity of palliative care in New Zealand.
In the lead-up to the referendum, close to 1600 doctors signed an open letter opposing assisted dying; arguing proper palliative care makes euthanasia unnecessary. The move to fully fund assisted dying but not palliative care has also come under recent criticism.
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Dr Jessica Young, Victoria University of Wellington postdoctoral research fellow and assisted dying academic.
Dr Jessica Young, a postdoctoral research fellow at Victoria University of Wellington, said assisted dying was another tool in the toolbox at the end of a person’s life, not a replacement for palliative care.
The relationship between palliative care and assisted dying will likely be “tricky”. Hospice New Zealand will not support assisted dying services, but individual hospices may take a different position.
Many have both – 2016 data from jurisdictions with assisted dying suggest between 74-87 per cent of those who accessed assisted dying were receiving hospice or palliative care services as well – while others may not want it.
Young acknowledged palliative care funding was limited: “Everyone would advocate for more funding [for palliative care], that’s not up for debate here.”
Palliative care services are “amazing” – but the conversation is also about allowing people to choose what care is and isn't right for them, she said.
Young, a member of Yes for Compassion, said it was too soon to guess who might not benefit from the legislation – but noted there were potential barriers to access.
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Not all those who choose to apply for assisted dying go through with the service, data from overseas jurisdictions with similar laws show.
Gravely unwell people need to know the legislation exists, where to find it, and how to make sense of it. They need to broach the topic with a doctor and then navigate the service.
Data from Oregon suggests those who access assisted dying are often white and educated, despite research signalling support across most ethnicities, age groups and the political divide.
Work has been done to make the service is equitable, including incorporating Te Tiriti o Waitangi obligations to ensure it is culturally safe for Māori.
Young said both her PhD research and overseas experience showed assisted dying was an “option of last resort”.
If people are dying “well” and to plan – insofar as one can – they don’t need assisted dying. But they want the option as a “backstop” if their suffering cannot be relieved, she said.
In Oregon, about 25 per cent of those who go through the process don't take the medication: “the choice in and of itself is empowering”, Young said.
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Royal New Zealand College of General Practitioners president Dr Samantha Murton says its likely some patients will be eligible, and some practitioners will be willing to be involved with assisted dying.
Royal New Zealand College of GPs president Dr Samantha Murton said the number of people who fit the criteria for assisted dying were “quite low”.
In her own practice, she could think of just one patient in the past five years who would be eligible – whether they'd want to access assisted dying was another thing all together.
As a result, the number of GPs who will be approached about assisted dying would also likely be “probably quite low”. Patients across the motu would likely be referred to a handful of practitioners, she assumed.
The college has not polled members to see who is willing to be involved and who will object – but their membership will largely reflect the difference of opinion across the wider population, Murton said.
However, all doctors need to be able to understand the act and their responsibility whether they want to be involved or not.
Palliative care experts want answers on euthanasia, saying the country is woefully unprepared to introduce assisted dying at the end of this year.
Murton said the sector was comfortable there was no “knowledge vacuum”, and training had been rolled out “relatively seamlessly”, despite Covid-19 impacts.
Holly Hedley, Buddle Findlay senior associate said while the act in its entirety was new, from a legal perspective a lot of it wasn't.
How it is determined who is competent to make the choice is something clinicians have long been dealing with. The notions of making choices about what is in someone’s best interests, and determining who is vulnerable to coercion is also not new – that’s “everyday bread-and-butter stuff” for GPs and oncologists.
“But of course, it’s bigger, because it’s life and death.”
Hedley said if people were looking for certainty, they weren’t going to find it yet and much will be made on case-by-case judgement calls.
“Figuring some of that out practically will be testing,” she said.
But Young believed the End of Life Choice Act would open up the conversation about dying, and that was something people shouldn’t be afraid to do.
“We have to remember people who are eligible are already dying, this is just the way that they die – not the fact they will die.”
Assisted dying may be a sensitive topic for some people. People can call or text 1737 for free to speak to a trained counsellor at any time.
