Concluded projects

Past projects include early experiences of the assisted dying service, navigating assisted dying, and a stakeholder survey.

Navigating assisted dying

November 2021, this study aimed to explore the experiences of New Zealanders who are seeking assisted dying, supporting someone seeking assisted dying, and providing assisted dying. We also set out to widely disseminate the insights and findings that we have reported in academic publications and to stakeholders through meetings and reports, i.e., participants, government, medical and community organisations, to improve assisted dying services.

The data collection began in February 2022 and is now complete. There were 23 participants in the study. This included seven people with cancer seeking assisted dying, ten family members, and six assisted dying providers. The interviews took place over time, with many participants taking part in more than one interview (before and after the assisted (or natural) death). In total, Jessica did 44 interviews.

One of the main findings from this study is insight into how patients, families and providers make decisions together about when to schedule the date for assisted dying. Many participants told us how challenging it was to choose a time and date for their assisted death for a range of reasons, including uncertainty of prognosis, pain and quality of life going forwards, the requirement to choose a specific date early on, and the views of family and friends. This aspect of decision-making has not been written about in the published NZ research to date and there is very little international evidence about it, so we focussed on it for our first article.

In jurisdictions where assisted dying is legal, time is a central part of the process because some jurisdictions have a time-limited prognosis, such as six months as an eligibility criterion, and a date for the assisted death is set in advance. We identified four phases in the process of choosing a date: deciding how and when to draw a line in the sand; the final countdown; a date with death; and the right time. Deciding on a date is a decision made by people to consider their own and others’ needs and wishes, in responses to the evolving situation, and is informed by their intuition about when the right time will be.

The date can be changed, and three of ten people did not end up dying by assisted dying; one person is still alive having outlived their prognosis significantly, one person chose to pursue an experimental trial instead of assisted dying, and another chose to die in a hospice where they knew assisted dying was not going to be able to be administered.

Team: Dr Jessica Young, Professor Antonia Lyons, Associate Professor Richard Egan, Professor Kevin Dew.

Funder: Cancer Society NZ

  1. Young, J.E., Lyons, A., Dew, K. & Egan, R. Is There a Right Time to Die? How Patients, Families and Assisted Dying Providers Decide on and Anticipate a Date with Death. Death Studies, 1–13. https://doi.org/10.1080/07481187.2024.2414277
  2. Young, J. Winters, J., Snelling, J., White, Gavaghan, C., Geddis, A. Egan, R. The End of Life Choice Act: A Proposed Implementation and Research Agenda (2021). NZMJ, Vol 134 (1544), 145-158. https://nzmj.org.nz/media/pages/journal/vol-134-no-1544/the-end-of-life-choice-act-a-proposed-implementation-and-research-agenda/2a2977f6a9-1696478283/the-end-of-life-choice-act-a-proposed-implementation-and-research-agenda.pdf

Assisted dying stakeholder survey and interview study

This was the first research project undertaken by the Assisted Dying Research Network. We invited health practitioner stakeholders from across the health system to take part in a survey to identify the highest priority research areas.

Stakeholder involvement is an indispensable part of the process of research prioritisation. We conducted follow-up interviews with stakeholders who expressed an interest discussing the issues further.

Team: Led by Dr Jessica Young, Dr Jeanne Snelling, Sophie Beaumont and the Assisted Dying Research Network members.

Funders: Health Research Council, Research Activation Grant and Science, Health, Engineering, Architecture and Design Innovation (SHEADI) Division, Faculty Research Establishment Grant.

  1. Snelling, J. Young, J. et al., (2023). Health Care Practitioners’ Early Experiences of Assisted Dying in Aotearoa New Zealand: An Evolving Clinical Service. BMC Palliative Care, 22:101.https://doi.org/10.1186/s12904-023-01222-4
  2. Young, J., Snelling, J., et al. (2023). What do health care professionals want to know about assisted dying? Setting the research agenda in New Zealand. BMC Palliative Care 22, 40. https://doi.org/10.1186/s12904-023-01159-8

Experiences of the End of Life Choice 2019 Act amongst health practitioners, whānau, and bereaved families

The first aim of this two-year project (2022 – 2024) was to explore the experiences of health practitioners directly involved in providing assisted dying under the Act, as well as health professionals indirectly involved. This study provided an opportunity for these health practitioners and professionals to reflect on their novel experiences of assisted dying under the Act.

The second aim of this study was to explore the perspectives of Māori and non-Māori whānau of individuals who used the Act, considered using the Act but ultimately did not, or did not use the Act.

This project resulted in five publications, with two additional manuscripts currently under development.

Team: Led by Dr Gary Cheung and Dr Rosemary Frey

Funder: Auckland Medical Research Foundation

Contact g.cheung@auckland.ac.nz if further information is needed.

List of publications:

  1. Dehkhoda, A., Frey, R., Carey, M., Jing, X., Robinson, J., Sundram, F., ... & Cheung, G. (2023). Exploring the impact of e-learning modules and webinars on health professionals' understanding of the End of Life Choice Act 2019: a secondary analysis of Manatū Hauora–Ministry of Health workforce survey. The New Zealand Medical Journal (Online), 136(1582), 52-6. https://nzmj.org.nz/journal/vol-136-no-1582
  2. Dehkhoda, A., Frey, R., Carey, M., Jing, X., Bull, S., Sundram, F., ... & Cheung, G. (2023). Health professionals' understanding and attitude towards the End of Life Choice Act 2019: a secondary analysis of Manatū Hauora-Ministry of Health workforce surveys. The New Zealand Medical Journal (Online), 136(1576), 11-31. https://nzmj.org.nz/journal/vol-136-no-1576
  3. Dehkhoda, A., Frey, R., Carey, M., Robinson, J., … & Cheung, G. (2025). Early experiences of the End of Life Choice Act 2019 amongst assisted dying practitioners in Aotearoa New Zealand. BMP Palliative Care (forthcoming).
  4. Zhou, E., Dehkhoda, A., Bull, S., Carey, M., Frey, R., … &, Cheung, G. (2025). Practitioners’ attitudes and approaches to assessing comorbid depression among patients seeking assisted dying in New Zealand. Psychiatry, Psychology, and Law (forthcoming).
  5. Arshad, W., Dehkhoda, A., Carey, M., Menkes, D. B., Hoeh, Sundram, F., Frey, R., & Cheung, G. (2025). The first year of assisted dying in New Zealand through the lens of healthcare professionals not directly involved in the process. BMP Palliative Care (forthcoming).