Exploring the early experiences of the assisted dying service in Aotearoa

Learn more about 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.

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, cultural 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

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

Read the latest edition of our project newsletter.

You can also read editions from:

• May 2024
• September 2023.

News

• Assisted dying, three years on: What you need to know, RNZ.
• Assisted dying two years on: is access equal for everyone? RNZ.
• Is assisted dying available equally to all? The Post.
• 'Cathartic' conversations on choice. NZ Doctor. [paywall].
• Is assisted dying available equally to all in NZ? Questions next year’s review of the law must answer. The Conversation.
• Two years of assisted dying in Aotearoa. Te Herenga Waka.
• The Bulletin: Two years on from the enactment of the End of Life Act. The Spinoff.
• Two years on, End of Life Act brings bittersweet relief for patients and the families they leave behind. Stuff.

Publications

We have published our research protocol in the BMJ Open. It describes the careful design and methods of our research. It’s free to access.

Submission to the End of Life Choice Act Review

Review of the End of Life Choice Act 2019 Submission

Authors: Dr Jessica Young (Principal Investigator), Dr Jeanne Snelling, Dr Aida Dehkhoda, Associate Professor Te Hurinui Karaka-Clarke, Associate Professor Jackie Robinson, Professor Ben White, Professor Kate Diesfeld, Dr Tess Moeke-Maxwell, Dr Janine Winters, Associate Professor Annabel Ahuriri-Driscoll, Associate Professor Gary Cheung.

Advisors: Dr Jo Scott-Jones; Mr Philip Patston.

Based on the interviews with 96 participants as part of the Health Research Council-funded ‘Exploring Early Experiences of the Assisted Dying Service in Aotearoa’, the top ten (of 77) recommendations we made were:

Key recommendations

1. Permit health practitioners to raise assisted dying (AD) with patients in the context of a discussion about available end-of-life options.
2. Provide follow-up care to families whose relatives sought or as a minimum died by AD and for ineligible applicants.
3. Revise the statutory roles of the Registrar AD, AD Review Committee, and Support and Consultation for End of Life in New Zealand (SCENZ) Group.
4. Improve data collection and reporting processes about ethnicity and other factors.
5. Provide further mandatory training and optional support and develop cultural guidelines, competency standards and practice assessment processes for all ADPs.
6. Develop mandatory training for all relevant health professionals regarding AD law and policy including their roles under the Act and AD referral process, and handling AD requests.
7. Improve the communication with the AD service, in particular the accessibility for people with impairments, the clarity of the call-back service, and the usability and discoverability of the website.
8. Establish rules within the Act, or in policy, regarding institutional objection. We broadly favour the approach to regulating institutional objection in the Queensland Voluntary Assisted Dying Act.
9. Utilise attending nurse practitioners as an AD provider workforce and as team members for administering AD removing the requirement that NPs work “under the instruction” of an AMP in the AD process.
10. Create a best practice model that promotes the integration of AD into the health care system.

We also received support from the Cancer Society NZ for these recommendations in their submission.