Assisted Dying Research Network

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Exploring the early experiences of the assisted dying service in Aotearoa

Read participant information and register for the study.

Project overview

This project was developed through stakeholder engagement funded by a Health Research Council Activation Grant in 2022 (Young et al., 2023). With this new project, also funded by the Health Research Council, we will explore the experiences of 100 people from key groups involved across the assisted dying process. We are also pleased to partner with Taranaki Iwi to follow their responses to assisted dying over the next three years. Findings from these qualitative data will advance our aim of enhancing the assisted dying service to be safe, accessible, and equitably available to all eligible New Zealanders. Project outcomes will contribute to monitoring assisted dying, regulatory review, and guidance for providers, patients, and families.

We are seeking participants

Thank you for your interest in our study. We would like to hear from people who:

  • formally applied with Health New Zealand | Te Whatu Ora who were assessed as eligible, ineligible, or changed your mind
  • formally applied with Health New Zealand | Te Whatu Ora who were assessed as eligible, ineligible, or changed your mind and are living with an impairment, disability, or who are Deaf
  • asked for assisted dying from a health professional but were told that you couldn’t or shouldn’t apply for some reason
  • family or close friends of service users (both eligible and ineligible) living with an impairment, disability, or who are Deaf.

The study would involve an interview on Microsoft Teams (or by phone if you don’t have access to the internet) with two researchers for up to 90 minutes.

We have completed data collection for the following groups:

  • family or close friends of service users (both eligible and ineligible)
  • assisted dying providers
  • health professionals who have looked after an assisted dying patient
  • health service leaders and policy-makers.

Register your interest in participating

If you are interested in participating in our study, please fill out the survey to help us assess if you are eligible for the study.

Fill out the survey

Participant information sheets

For assisted dying service users (both eligible and ineligible)

For assisted dying service users living with an impairment, disability, or who are Deaf (both eligible and ineligible)

The participant information sheet and consent form in HTML format or plain text only format are available on request (email AssistedDyingResearch@vuw.ac.nz)

For family or close friends of service users (both eligible and ineligible)

The ethical aspects of this study have been approved by an independent group of people called the Health and Disability Ethics Committee. It checks that studies meet ethical standards. The Northern A Health and Disability Ethics Committee has approved this study through the full review pathway [ref 2023 EXP 18493].

Study aims and objectives

The overarching aim of this research is to inform the Assisted Dying (AD) service so that it is safe, people-centred, mana-enhancing, accessible, and available equitably to all eligible people.

We will work towards this aim by:

  • Exploring the experiences of 100 people who are involved in the AD process:
    • including people who are receiving AD
    • family providing support for an AD patient
    • people assessed as ineligible for AD
    • practitioners providing AD
    • practitioners who are non-providers but have cared for someone receiving AD
    • Taranaki Iwi representatives contemplating how to respond if members wish to access AD.
  • Producing resources in consultation with the above stakeholders to support the provision of AD in NZ.
  • Producing a comprehensive, evidence-based submission for the Ministry of Health’s mandated review of the End of Life Choice Act, focusing on safety, equity, and access.
  • Disseminating the findings and resulting resources widely to stakeholders, including participants, government, health services, community organisations, and the public in both academic and non-academic publications.
  • Identifying key areas of AD that require further research to advance the stated goals of the AD system such as safety, accessibility, people-centredness, culturally safety, effectiveness, and equitable service provision.

This research project will generate tangible benefits for New Zealanders. The following areas of impact together will contribute to reducing inequities and improving health outcomes for people accessing AD:

  • communicate participants’ experiences to other stakeholders
  • develop workforce expertise in caring for people using and providing AD
  • inform evidence-based decision-making
  • build research capacity and capability
  • identify further research needs.

The project has been generously funded by the Health Research Council.

Our team

The research team who are exploring the early experiences of the assisted dying service in Aotearoa posing for a photo together.
Left to Right: Gary Cheung, Tess Moeke-Maxwell, Kate Diesfeld, Aida Dehkhoda, Kate Reid, Te Hurinui Karaka-Clarke, Jessica Young (Principal Investigator), Jeanne Snelling, Annabel Ahuriri-Driscoll, Richard Egan, Jackie Robinson, Ben White, Ellan Baker, Janine Winters (not pictured).

We are also fortunate to have the following advisers guide us.

Māori advisers: Whaea Maata Wharehoka on behalf of Taranaki Iwi, Clive Aspin, Leanne Manson. Clinical: James Jap, Jo Scott-Jones.

Disability adviser: Pip Patston.

Academic advisers: Lindy Willmott, Antonia Lyons.

Our values

  • Manaakitanga—we show care, inclusion, respect, support, trust and kindness to each other. We are committed to the health and wellbeing of all people.
  • Ōritetanga—we commit to equity and we will ensure that there are no unintended consequences of the research, such as increasing health inequities in any way.
  • Whakapono—we have trust and faith in each other to work with integrity.
  • Kōkiri ngātahi—we connect and work together collectively towards a common purpose.

Project news

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