Researchers spoke to whānau who lived with death by using tikanga Māori - now they are using digital storytelling to support those who have lost traditional care customs and are neglected by a one-size-fits-all healthcare system
It takes a village to raise a person, but it takes a village to bury them, too.
So says Dr Tess Moeke-Maxwell, one of the researchers behind Te Ipu Aronui, a website and campaign to share ways Māori can use their ancestral tikanga to cope with caring for loved ones at the end of their lives.
As a founding member of Te Ārai Palliative Care and End of Life Research Group, she helped interview more than 60 whānau, Māori healthcare professionals and practitioners of rongoā and tohunga.
The research found Whānau felt the healthcare system was often dominated by Pākehā viewpoints which let the most disadvantaged members of society fall through the cracks - a problem expected to grow with a rapidly ageing population.
Moeke-Maxwell says families often experience a sense of isolation when dealing with death.
“It can be a very lonely time for kaumātua and their whānau,” she said. “Our studies have shown us access to information, knowledge, resources and broader whānau support helps to strengthen whānau who care for kaumātua. So we needed to find a way to gather up information and share it with whānau.”
The campaign’s centrepoint is a website telling the stories of end of life care bolstered by Māori cultural values and customary practices.
Moeke-Maxwell says a standardised approach to palliative care pays lip service these culturally specific practices, such as tikanga Māori.
“Every whānau is different and they have highly personal experiences,” she said. “There’s a lack of understanding from the decision-makers about death, dying and palliative care as it relates to different communities’ cultural customs.”
An uncoordinated system
When she moved to New Zealand from the UK, Merryn Gott was struck by how similar end of life care was between the two countries.
“I was surprised the cultural differences didn’t inform systems here more,” she said.
As director of the Te Ārai Palliative Care and End of Life Research Group, she has heard many stories of disorganised care leaving families unprepared for death.
“People fall between gaps due to uncoordinated systems,” she said. “Health professionals may be doing little bits of care - but nobody is keeping an eye on the bigger picture. A lot of the conversations that need to happen don’t, which leaves whānau unprepared.”
One of the research group’s goals is to uncover the hidden costs of caring for somebody at the end of their life, which can be huge.
“We hear stories about people not eating properly as somebody is dying and they need to save money,” she said.
She says the burden these whānau bear could be eased by caregiver leave and other financial assistance, pointing to Canada’s compassionate care benefit.
She hopes the group will amplify the voices of whānau who wouldn’t normally have a place to speak about this. “As a society, we aren’t good at talking about death and dying in general,” she said. “And people are saying things that aren’t being heard.”
Talking about death
Moeke-Maxwell says that all too often, people look to death as a battle.
“Especially with cancer, there’s often a narrative of fighting a war,” she said.
However, the modern approach to death may be the result of an increasingly secular and medicalised society.
“We’ve been colonised by a biomedical system that says we’ve got to live for as long as we can no matter what, no matter how many pills we are on and no matter whether the quality of our life is lessened,” she said.
“The power of the spirit and the strength gained from Māori spiritual beliefs continues to be marginalised in comparison to a biomedical approach to care.”
Instead, she says - maybe it should be a matter of dying well.
“Of course it’s an oxymoron,” she said. “The body is perishing - but the wellness of the wairua (spirit) is so important at this time. It can feel more settled or rangimarie (peaceful) before death if the care is tika (correct).”
Gott also sees our society as ill-preparing us to handle the end of life.
“None of us are very good at owning up to the fact that it’s going to happen to us and so we are quite unprepared,” she said.
The end of life forces people to reckon with issues our healthcare system cannot necessarily deal with.
“As we approach death, issues of cultural identity and spirituality become more prominent,” she said. “Healthcare can’t provide all the support we need.”
Gott praised the work undertaken by Māori working in healthcare organisations to support whānau at the end of life.
“We heard stories of Māori cleaners supporting whānau,” Gott said. “A lot of Māori palliative care is unpaid and informal.”
She wants the importance of these ad hoc roles to be acknowledged and people to be paid for the work they do beyond their job description.
Moreover, she says we need to start getting better at talking about death.
“We can’t pussyfoot around the corners on the subject,” she said. “These are going to be increasing issues with our ageing population.”
Moeke-Maxwell spoke of the historic importance of kaumātua who provided the role of carer during the end of life.
“It’s not that long ago that kuia would hear when somebody was sick or approaching death and they would come dressed in their black clothes with their travel bags to provide care to the whānau,” she said. “This might involve caring for the children, cooking and caring for the house. They would have a body of knowledge and cultural skills to offer when the person was nearing death and eventually died - they knew how to look after the deceased’s body and how to prepare them for burial afterwards.”
But the end of life carer role hasn’t always been passed down through the generations.
“A lot of our kuia who did the end of life care within whānau have died, and with them has gone a lot of important cultural information.”
Moeke-Maxwell hopes the stories on the new site will help to resurrect that knowledge and inspire whānau carers to love those they care about before - and after - they die.
