The End of Life Choice Act 2019 gives people with a terminal illness the option of receiving assisted suicide or euthanasia. The act came into force on 7 November 2021, twelve months after the 2020 euthanasia referendum was declared in favour of the legislation.

257 people had an assisted death in just the first year, and hundreds more used the service.

Dr Jessica Young, from the University’s School of Health—Te Kura Tātai Hauora, has been talking to people with cancer about applying for assisted dying, as well as their families and their doctors.

She says overall, the feedback has been positive from the 20 people she’s interviewed.

“Everyone was impressed and grateful for the quality of both the assisted dying service, and the quality of the people providing that service.

“The preliminary findings show that people were happy that they had a chance to say goodbye to friends and family, to put an end to their suffering, and regain some control over their life and death which they had felt cancer had taken away.”

However, Dr Young says each participant group identified gaps in the service.

“Patients who wanted counselling found that some of the professionals they spoke to were ill-equipped to discuss assisted dying.; providers said they faced a steep learning curve in terms of navigating the eligibility assessment requirements and Ministry of Health portal; and families said that there was a big gap in support after death for them.

“It’s crucial we get this service right for people and their whānau.”

She says it’s important to understand the effects of these gaps on people and is seeking participants for the next phase of her research.

“We’re now looking for people across the assisted dying process, such as those who sought assisted dying but were deemed ineligible, or people who were deemed eligible but decided not to go through with the process.”

The full list of people Dr Young is looking for in her research includes:

• Assisted dying service users (both eligible and ineligible),
• Assisted dying service users living with an impairment, disability, or are Deaf (both eligible and ineligible),
• Family or close friends of eligible and ineligible service users,
• Assisted dying providers,
• Health professionals who have looked after an assisted dying patient,
• Health service leaders and policymakers.

She says the idea behind this next phase of research is to inform the review of the End of Life Choice Act—happening in November 2024.

“We want to hear from people who have been involved in the service in some way to get their views on how the service can be improved.

“Then, our findings will help to advance the aim of enhancing the service to be safe, accessible, and equitably available to all eligible New Zealanders.”

The research is funded by the Health Research Council, which provided a $1.4 million grant.

For more information or to take part in the study, Dr Young can be contacted via email. More information about the study is available on the team’s website.