Part of my research looks at kaumātua and whānau caregiving experiences and cultural needs at the end of life, and tangihanga.
Why is it important to study the period leading up to a kaumātua’s death and following death?
The end of life is often one of the most difficult parts of the life-cycle to move through due to the many physical and emotional demands placed on kaumātua and their whānau. Yet, it is arguably one of the most important times in our lives as this is when the kaumātua’s wairua is preparing to transition through the ārai, the veil, between the physical realm and the wairua (spiritual) realm.
When things go well, kaumātua and whānau feel deeply spiritually connected to each other, and kaumātua can transition peacefully across the ārai; their families’ wairua support system also helps them through their grieving process before, during and following death.
My research is guided by the Te Ārai Kāhui Kaumātua advisory group, formerly led by the late Rawiri Wharemate. I work alongside Professor Merryn Gott and a large team of multi-disciplined researchers. My research team gathers and shares information on the best way whānau can care for kaumātua at the end of life.
We share this information with Māori whānau who may have lost this caregiving knowledge and health professionals who need to understand Māori culture and end of life caregiving tikanga as they can be great allies for Māori on the end of life journey.
When there is poor clinical or medical care, or an absence of whānau to provide care, as well as major stressors such as financial worries (how to cover the costs of tangihanga, for example), housing concerns, or coping with the usual whānau problems we all have, the end of life can be extremely challenging, and the impact can be very heavy to carry after a kaumātua has died.
Planning can be helpful, especially for whānau, as they are the ones who are likely to care for kaumātua when the sun starts to go down.
Why are Māori so wiriwiri (anxious) about talking about dying and death?
Many people are afraid because they believe that talking about dying will somehow hasten it – that it will somehow attract death to us more quickly.
In reality, talking about ‘dying’ and ‘when my time comes, I want XYZ to happen’ can be very helpful, as clear instructions can be given to whānau, highlighting what kaumātua want and need, where they would like to be cared for, where they would like to die, who they would ideally like to care for them, where they would like to lie in state and what they want to happen to their things after they die (whenua, taonga, personal items).
It can also be very helpful when kaumātua tell their whānau where they want to be buried or cremated.
They may also be considering an assisted death as this has become an option for someone in the last six months of life who has an incurable illness, so discussing this with whānau can be very helpful.
This level of detailed information gives whānau a head start.
Kaumātua and their whānau can begin to plan and prepare to provide the type of care the kaumātua wants which is helpful for them and for everyone else, including health professionals who may need to provide end of life support.
My team won the Health Research Council’s Te Tohu Rapuora research excellence medal at an award ceremony held by the Royal Society - Te Apārangi last week in Hamilton for contributions to improving palliative care and end of life care for Māori kaumātua and whānau.
They help to increase health professionals’ knowledge of Māori tikanga associated with end of life care on their website https://www.teipuaronui.co.nz
The team are currently touring New Zealand presenting whānau stories and photographs about end of life care and dying during Covid-19 Lockdown and conducting tangihanga in an exhibition titled, Rapua te Mārama – Whānau reflections on life and death during Covid-19 Lockdown in eight research sites including Aotea Great Barrier Island, Kaikohe, South Auckland, Tauranga, Hastings, Wellington, Motueka and Invercargill. The study also interviewed 17 funeral directors and 21 health professionals.
Twenty-three whānau elected to share their pūrākau (story) and whānau portraits in a public online virtual exhibition. These whānau stories and photographs can be viewed in an interactive online exhibition; https://www.teipuaronui.co.nz/virtual-exhibition
Dr Tess Moeke-Maxwell (Ngāi Tai & Ngāti Porou) is a research fellow and co-director of the Te Ārai Palliative Care and End of Life Research Group in the School of Nursing at the University of Auckland.