OPINION: New Zealand’s End of Life Choice Act is currently being reviewed. Both sides of the assisted dying debate share their thoughts on what should happen.
Warning: This article contains content that could be upsetting for some people.
New Zealand’s assisted dying law, the End of Life Choice Act, is reaching its third anniversary.
Since the Act took effect in November 2021, terminally ill adults that meet certain criteria have been able to request medical assistance to end their lives.
By law, the Act must be reviewed by the Ministry of Health within three years of coming into force and then every five years after that.
That first review is currently underway and is due to wrap up by November. It includes a review of the Act’s operations by the Ministry, and an online process of gathering public opinion about any changes that could be made to it.
1News asked bioethicist Dr John Kleinsman and CEO of Social Justice Aotearoa Jackie Foster what they thought about the review.
Dr John Kleinsman, bioethicist
Dr John Kleinsman is a bioethicist and kaitohu/director of the Nathaniel Centre for Bioethics and former chair of the Care Alliance.
What is your stance on the End of Life Choice Act as it currently stands? What evidence or experience has shaped your views on this?
Our Act, as it stands, is deficient in a number of areas.
There is: a lack of a formal assessment for coercion; no requirement for an independent witness during the assessment phase; inadequate screening for depression and other mental health issues; and no cooling off period once a request is made.
I understand well the individual case that is made for assisted death (AD), and I know it is motivated by a desire to be merciful to those who are suffering.
Individual cases can always appear to be justified without immediate harm. What we need to be concerned about is the impact of the accumulation of cases – the growth of habits and attitudes of mind which gradually reshape public perceptions of what is happening and what it means.
As the Act comes up for its first statutory review, we can learn from the trajectory of similar laws overseas which reveal significant shifts in public perceptions, followed by worrying expansions.
The Netherlands, Belgium, Luxembourg, Spain and Belgium all allow AD for mental illness, and many of the same jurisdictions allow it for minors/infants as well as persons with dementia. These changes have undermined the criterion that AD only ever be a voluntary choice by competent persons because they ultimately require someone else to decide who will die.
Shockingly, a 2023 Canadian poll showed that 28% of people were fine with AD for those experiencing homelessness and 27% for those in poverty.
In Canada, stories abound of eligible patients choosing AD only because of a lack of social support and adequate healthcare.
These changes provide us with a glimpse into our own future should we decide to loosen our eligibility criteria. The price of any change will come with severe unintended consequences.
Assisted dying remains contentious as review looms
Three years after End of Life legislation was passed, Nicole Bremner looks at how the law is working in practice.
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Assisted dying remains contentious as review looms3:46
Three years after End of Life legislation was passed, Nicole Bremner looks at how the law is working in practice. (Source: 1News)
What should New Zealanders take away from the first three years of the End of Life Choice Act – what have we learned so far?
In New Zealand, a majority of doctors and all but one hospice choose not to be involved in facilitating AD under the present regime. This is as it should be.
At the same time, access to AD is happening in a way most proponents of AD describe as “working well”. For patients on a pathway to AD, palliative care staff continue to provide quality holistic care within both in-patient units and community settings, despite the considerable challenges introducing AD has created.
This situation respects the significant philosophical, ethical and medical distinctions between palliative care and AD. It shows that they can co-exist while remaining separate and distinct, both able to stay true to their very different underlying worldviews and philosophies.
There is no need to try and force these two worlds together, and to do so would only damage palliative care. We must continue to protect the integrity of palliative care as well as having AD-free spaces – it’s something many people want and it’s essential for upholding real choice.
What changes, if any, do you think should be considered in this review of the Act?
For this review, the changes that should not be made are just as important as those that should be made.
On balance, it would be a grave error to remove the requirement that death be within six months and replace it with an undefinable, ambiguous clause such as “grievous and irremediable suffering”.
Such a move would open up AD for reasons related solely to existential suffering and mental illness. It would also degrade the lives of tens of thousands of sick, disabled and dying people by sending a negative message that their lives are “objectively” no longer worth living.
Perhaps the strongest reason for not broadening the eligibility criteria is the crisis state of our health and aged care systems, something that creates an intolerable and unethical limitation of choice. Added to that, palliative care remains grossly underfunded, and equitable access to quality palliative care for all New Zealanders simply does not exist.
True autonomy requires more than one real choice. A far greater number of people will benefit from higher-quality, more accessible palliative care because they will be able to lead quality lives up to death and spend more quality time with family and whānau while eliminating the uncontrollable risks to so many that loosening the eligibility criteria would bring.
Calls for more patient-centred approach to end-of-life care
There’s concerns some dying patients and whānau aren’t getting the support they need.
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Calls for more patient-centred approach to end-of-life care5:58
There’s concerns some dying patients and whānau aren’t getting the support they need. (Source: 1News)
Finally, we must not allow doctors to raise the option of AD with a patient. This is currently prohibited, something thoroughly debated at the time the End of Life Choice Act came into force and touted as an indispensable protection for patients.
The rationale then and now remains the same: during a time of significant personal upheaval, demoralisation, fear, and likely temporary reactive depression – and given the power imbalance between doctor and patient – any doctor raising the option of AD creates a risk that it will be interpreted by their vulnerable patient as a “suggestion” that AD is the most desirable way forward.
Because why else would the doctor raise it?
We must first fix what is broken with the current Act, and know we have fixed it, before even considering experimenting with altered criteria which, in the current health context and socio-economic environment, is simply too risky.
Jackie Foster, CEO of Social Justice Aotearoa
What is your stance on the End of Life Choice Act as it currently stands? What evidence or experience has shaped your views on this?
When the End of Life Choice Act initially went to referendum, I voted no, having not really had anything to do with whānau or people that needed to consider euthanasia.
But in 2020 I lost my mother to cancer and became aware of a close friend of mine who suffers from a degenerative disease known as Ehlers-Danlos Syndrome.
Nicole is 51 and has been suffering from this disease since the age of 30. She is now permanently bedridden, unable to sit up unaided, and has no quality of life whatsoever.
Nicole wishes to use the End of Life Choice Act so she can die with dignity and end her suffering. It’s a right every citizen should have but because a doctor cannot certify that her illness will cause her death within six months, she is not able to choose to die with the dignity she deserves.
This is wrong and we must change the Act accordingly.
What should New Zealanders take away from the first three years of the End of Life Choice Act – what have we learned so far?
I believe that that the first three years of this legislation has brought the country together more on the issue.
There was a 65% “yes” vote in favour of the legislation in 2020. I would suggest today that number would be higher.
What changes, if any, do you think should be considered in this review of the Act?
That a consequential amendment be made to the End of Life Choice Act 2019, removing the words “within 6 months” from section 5(1)(c) and also inserting a new sub section 5(1)(g) into the Act that says “suffers from a degenerative disease that will ultimately end their life”.
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This week, Social Justice Aotearoa delivered a petition to Parliament, calling for those amendments to the End of Life Choice Act. The amendments would mean people with a degenerative disease could also become eligible for assisted dying.
ACT’s health spokesperson Todd Stephenson accepted the petition. He said he agreed with what it called for and would prepare a member’s bill to try and make that change to the End of Life Choice Act.
Public consultation for the review of the End of Life Choice Act is open until September 26.
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The public’s feedback will be collated into a report that will eventually be tabled in Parliament by the Minister of Health, Dr Shane Reti.
Any changes to the End of Life Choice Act would need to be proposed through members’ bills, like the one Stephenson plans to prepare. That means any changes would be subject to the full parliamentary process.