Indigenous tools help whānau understand assisted dying

Aotearoa’s first dedicated Māori resources on assisted dying have been launched, offering whānau culturally grounded tools to understand the End of Life Choice Act (2019) and the realities of assisted dying in Aotearoa, New Zealand.

Developed by Senior Research Fellow Dr Tess Moeke-Maxwell (Ngāi Tai ki Tāmaki, Ngāti Porou), research advisors and the Te Ārai Palliative Care and End of Life Research Group’s Kāhui, the suite includes two graphic novels informed by whānau experiences, 18 short films, detailed information, and a new website - Pou Kāpura. The name referring to the flame held by whānau as they navigate a darkened pathway.

A blessing and launch for the resources took place last Monday 2 March at Waipapa marae at the University of Auckland, led by Dr Moeke-Maxwell and Professor Linda Nikora (Tūhoe, Te Aitanga-a-Hauiti) supported by the Te Ārai Kāhui. For many attending, it was their first introduction to the process of assisted dying.

A tapu kaupapa, and a research journey guided by whānau

Dr Moeke-Maxwell says the research project began from a place of deep personal and cultural responsibility. She was supported by Te Ārai colleagues Associate Professor Jackie Robinson, Professor Merryn Gott and New Zealand’s leading assisted dying academic, Dr Jessica Young.

“Our whānau have always assisted each other in dying, but the End of Life Choice Act (2019) introduces an entirely different, legally regulated way to die. Even though I didn't vote for the Act, once it became law I realised some of our whānau would want to use this or consider choosing it, and they needed clear, culturally safe information to make a genuinely informed decision.”

Motivated by whānau members navigating terminal illness, she felt compelled to understand assisted dying from a Māori perspective. Recruitment for the research was challenging due to the topic’s tapu nature, with some kaumātua choosing not to engage.

“This kaupapa is tino tapu (very sacred). I have so much gratitude for the whānau and Māori communities who trusted us with their stories,” she says.

The project exceeded its recruitment goals, Moeke-Maxwell completing over 60 interviews involving more than 100 participants, including:

• Māori whānau whose loved one completed the assisted dying process.
• Whānau who considered it but chose not to use the Act.
• Individuals who applied and were declined.
• Support workers including hospice staff, kaumātua, tohunga, palliative care specialists, chaplains, funeral directors and assisted dying attending medical practitioners.

Moeke-Maxwell also interviewed 11 participants who did not want an assisted death, she says it was important to understand the cultural and spiritual reasons whānau chose not to use the Act.

What whānau need to know

Many participants were navigating the End of Life Choice Act in its earliest years. The research highlights a range of complexities, including:

• The requirement that applicants be within six months of life expectancy
• The need to be experiencing unbearable suffering
• The strict assessment process involving two independent doctors
• The inability of health workers to initiate conversations - the patient must ask first
• The need for privacy, and differing tribal, religious and familial views
• The emotional burden and complicated grief placed on whānau supporting  someone through the process.

A new framework

Moeke-Maxwell's conceptualised new assisted dying framework - Kaitiakitanga Assisted Dying Pathway - reflects the role whānau step into as protectors, guardians and carriers of emotional and spiritual responsibilities at the end of life.

“Whānau want to uphold the mana of their loved one and to ensure their mana motuhake (autonomy) to live and die on their own terms is realised. Whānau often put their own feelings aside to walk alongside their relative and support them. It’s complex, highly emotional and new territory to navigate.”

Creative, accessible tools for Māori communities

To ensure the research does not remain “locked in academic spaces,” the team created resources designed specifically for whānau.

These include:

• Two graphic books written by Dr Moeke-Maxwell and illustrated by award winning graphic artist Dr Tatiana Tavares with support from Dr Lisa Williams and the Te Ārai Kāhui, depicting real life scenarios and whānau journeys about assisted dying and palliative care.
• Eighteen short films by filmmaker Eddie Mariott, featuring interviews with hospice workers, palliative care doctors, assisted dying experts and people with experience of bereavement, healing, tikanga organ donation.
• Te Oro Ngākau Nui, a discussion-based mind-level tool allowing individuals and whānau to explore their comfort levels and views about assisted dying.
• The bilingual, whānau-centred website Pou Kāpura, providing the “good, the bad, and the ugly” full transparency for informed decision-making.

Professor Linda Nikora, named investigator on the project, emphasised the value of culturally resonant information:

“These resources offer whānau a safe way to engage with a very sensitive kaupapa. They allow Māori to consider assisted dying within our own values and wairua.”

A new beginning for open, safe kōrero

For many at the Waipapa marae launch, it was their first exposure to the realities of assisted dying. Dr Moeke Maxwell says the moment affirmed the need for these tools:

“Our whānau are very private about assisted dying. Many are hearing about it properly for the first time. My hope is that these resources will help whānau have friendly, safe conversations - so they can weigh up the pros and cons and support one another, whatever decisions they make.”

The Pou Kāpura website and resources are now available to support whānau, communities, and health practitioners across Aotearoa.