This article was first published in Open Society Journal Volume 96, Number 2, July 2024
The End of Life Choice Act 2019 came into force on 7 November 2021. It provides a legal framework for New Zealanders to access assisted death under specific circumstances. A government review of the legislation is now on the operating table and both supporters and critics of the Act are prepped to take a scalpel to the legislation.
David Seymour, the Minister who led the Bill and is a strong advocate for assisted dying, has come out saying the law is too strict and should be relaxed.1 Doctors have also criticised the law, frustrated that changes to the Bill’s original wording, removing the phrase “grievous and irremediable medical condition”, have made the rules too stringent, limiting access to an assisted death only to those within 6-months of dying.2 The Act also gags doctors from discussing it as an option for their patients, meaning only people who know it’s an option in the first place know to seek it out. Researchers from Te Herenga Waka, Victoria University of Wellington state that this ban means those who can access resources and who have higher literacy are more likely to access assisted dying, raising questions about whether assisted dying is equally accessible to everyone.3
Humanist organisations have long campaigned for laws to allow for assisted dying as part of a comprehensive, patient-centred approach to end of life care. Being able to die, with dignity, in a manner of our choosing must be understood to be a fundamental human right. However, even in countries like New Zealand, where it is permitted by law, the policy instruments designed to control for undesirable outcomes like coercion, and allow for conscientious objection, can lead to perverse outcomes that prolong suffering and deny access to a lawful assisted death.
Data from Te Whatu Ora on assisted deaths in New Zealand indicate that the legislation is largely working as intended. In the first year of the Act taking effect, Manatū Hauora received 661 formal applications, of which 399 were eligible and 257 assisted deaths occurred.4 However, the stats tell an important story. In the last financial year ending 30 June 2023, 807 applications were received. Over 80% were from people who identified as NZ European/Pākehā, even though this group only make 70% of the population, and only 5% were from Māori, who make up 16% of New Zealand’s population. While this may indicate a cultural difference in views about assisted dying, it might also indicate a lack of appropriate communication about it for eligible people, alongside a lack of trust in the health system.
Equally concerning is the number of people whose applications do not progress to an assisted death. In the 2023 financial year, 25% of applicants died during the application process,5 and 48 lost competence and were unable to access an assisted death due to not being able to give their final consent. While the policy settings may act as safeguards to protect vulnerable people, they also create barriers for people who are actively seeking out a safe, compassionate death at the time of their choosing.
Research on New Zealand’s assisted dying legislation from Te Herenga Waka, Victoria University of Wellington provides insight into some of the experiences people have of the implementation of the safeguards:
“During our interviews, one family member of someone who lost competency during the process described the need for final consent as “ridiculous”: “When she is unable to respond to be affirmative, if she’s already given the consent to the process, why can’t the process just proceed? Otherwise, you have to say I want to die earlier than I want to die just to meet your ridiculous regulation.”6
In looking at how the eligibility criteria can be improved, there are national and international cases that can provide insight into how the End of Life Choices Act 2019 can better meet the needs of New Zealanders.
Age Criteria – To be eligible for an assisted death, a person must be aged 18 years or over
In New Zealand, children cannot choose an assisted death. However, in other countries, a more permissive approach has been taken. For example, in 2014 Belgium lifted assisted dying age restrictions, and the Netherlands allows minors over the age of 12 to seek an assisted death under certain circumstances. Te Whatu Ora assisted dying data and reporting shows less than 2% of applications in New Zealand are for adults aged 18 – 44. The likelihood of children seeking out an assisted death is very low, but the age restriction of 18 removes a young person’s autonomy. New Zealand’s assisted dying process is more than able to cope with the number of potential applications from young people with the current safeguards in place.
Some argue that children and adolescents are considered to lack the full cognitive and emotional maturity required to make such a profound and irreversible decision. Others argue that there are significant ethical concerns about the capacity of young people to consent to an assisted death.
However, the purpose of our lengthy process, requiring the involvement of doctors and psychiatrists (if required), is to ensure that anyone seeking an assisted death comprehends the implications of assisted dying, weighs the long-term consequences, and makes an informed, autonomous choice. The legislation sets out several protections against the risk of coercion, which can be adapted for those who might be more susceptible to external pressures from family, caregivers, or medical professionals.
The exclusion of children from the End of Life Choice Act is based on a combination of developmental, legal, ethical, and societal factors. This approach aims to ensure that only those who can fully understand and consent to the implications of assisted dying are allowed to make such a choice. However, it is possible for the legislation to protect the well-being and rights of minors while enabling them to make informed choices about their care and treatment.
Belgium is one of the few countries that permits assisted dying for minors under specific conditions. Since the law was amended to include children, there have been a few notable cases where minors have opted for an assisted death. The first case of euthanasia for a minor in Belgium took place two years after the law was amended. The young person was a 17-year-old suffering from Duchenne muscular dystrophy and experiencing unbearable physical pain. The decision was made after careful consideration and the involvement of the minor’s family, medical team, and a child psychiatrist. Following this landmark case, a nine-year-old with a terminal brain tumour, and an 11-year-old suffering from cystic fibrosis, a congenital respiratory disease that is incurable and fatal, were both granted the right to die. Supporters of Belgium’s more permissive stance believe that children can possess the same decisional capacity as some adults. They argue that it is discriminatory to deny them the freedom to choose an assisted death based on an arbitrary age limit. Critics say that it is wrong to abandon hope so early in life, and that medical autonomy should not be extended to young people, regardless of their medical situation and level of suffering.
In Belgium, there are protections in place that are largely similar to those in New Zealand. For minors, their request must be evaluated by a multidisciplinary team, including a child psychiatrist or psychologist, to ensure the minor’s decision-making capacity and to confirm that the request is voluntary and well-considered. They must also be suffering from a terminal illness with no prospect of improvement, and the suffering must be constant and unbearable with no relief possible. Our system in New Zealand is already robust enough to consider lowering or removing the age for eligibility.
Health conditions criteria – must have a terminal illness that is likely to end the person’s life within six months
New Zealand’s law is deliberately narrow in its criteria for who is eligible for an assisted death. They must be suffering from a terminal illness that is likely to end their life within six months. They must be in an advanced state of irreversible decline in physical capability, and their sole underlying condition cannot be a mental illness, disability, or advanced age.
These limitations mean that people who are incurably suffering but not terminally ill are not able to access an assisted death.
In the United Kingdom, where assisted dying is not legal, Tony Nicklinson, a right-to-die campaigner with locked-in syndrome after suffering a stroke, died by refusing food after losing his High Court battle to allow doctors to end his life. In an article he wrote for the BBC, Nicklinson said: “What I find impossible to live with is the knowledge that… I have no way out – suicide – when this life gets too much to bear. It cannot be acceptable in 21st Century Britain. I am denied the right to take my own life just because I am physically handicapped.”7
Under the existing New Zealand Law, Tony Nicklinson would still not be eligible for an assisted death.
Earlier this year, in The Netherlands, Zoraya ter Beek received conditional approval for the right to an assisted death. Although physically healthy, the 28 year old has severe mental health struggles and autism. The case has raised questions about whether depression and other mental health conditions are treatable illnesses, and what should be the limitations for our own legislation.
Regardless of the individual circumstances, the exclusions seem arbitrary and fail to take account of the unpredictable nature of many different diseases and illnesses, or people’s wishes.
The review of the End of Life Choices Act is going to encourage religious organisations opposed to the legislation to voice their views that the only good death is a natural death. It is important for us all to use this as an opportunity to ensure other voices are also heard.
1 Euthanasia laws too strict and should be relaxed, Act leader David Seymour says – NZ Herald
2 Doctors sound alarm over Kiwis missing out on ‘right to die’ – NZ Herald
3 Is assisted dying available equally to all in New Zealand? | News | Te Herenga Waka—Victoria University of Wellington (wgtn.ac.nz)
4 Health New Zealand. (2023). Te Whatu Ora, Assisted Dying Service yearly report 2021/2022. https://www.tewhatuora.govt.nz/health-services-and-programmes/assisted-dying-service/assisted-dying-service-data-and-reporting/assisted-dying-service-yearly-report-20212022/
5 Manatū Hauora. (2023). Registrar (assisted dying) Annual Report – June 2023. https://www.health.govt.nz/publication/registrar-assisted-dying-annual-report-june-2023
6 Young, Dehkhoda & Snelling. (2023). Is assisted dying available equally to all in New Zealand? | News | Te Herenga Waka—Victoria University of Wellington (wgtn.ac.nz))
7 Tony Nicklinson: Decade since death of right-to-die campaigner (bbc.com)
Sara Passmore 