A recent New Zealand palliative care needs assessment concluded that approximately three quarters of people die an expected death from an existing chronic condition and would benefit from palliative care. It also highlighted that, because of health disparities, Māori are more likely to die with palliative care needs than the NZ European population. It is therefore worrying that current research indicates that Māori are less likely to die in a hospice than NZ Europeans.
The need for action is getting more urgent given the projected number of Māori deaths is expected to increase by 48 percent between 2016 and 2038.
This has inspired a study looking into traditional Māori customs around the dying. Pae Herenga: A qualitative investigation of traditional Māori end of life caregiving customs led by Dr Tess Moeke-Maxwell New Zealand’s leading Māori palliative care researcher located at the University of Auckland’s School of Nursing.
The studies aim is to gather evidence about traditional whānau care customs to determine the contribution they make to building whānau resilience during the caregiving and bereavement trajectory. To strengthen Māori whānau awareness and understanding of traditional end of life care customs and to support bereavement. As well as strengthen palliative care services awareness and understanding of traditional care customs.
“Currently there is little research examining how Māori end-of-life care tikanga are contextualised within lived experience and how whānau caregiving responds to the social context,” Dr Moeke-Maxwell says.
“The study will investigate the traditional end-of-life Māori care customs that whānau draw on to strengthen their end-of-life caregiving activities and support palliative care services… We will identify the barriers and facilitators that Māori participants experience to using these care customs within different care settings of the home, hospice, hospital and aged residential care facilities.”
New Zealand palliative care services are informed by a Western understanding of “a good death” which does not always reflect diverse Māori perspectives despite the intention that these services should consider the whole person and whānau.
Integral to the project will be the spiritual guidance of kaumātua including University of Auckland kaumātua, Rawiri Wharemate.
“I’ve felt the influence of the western model of thinking and structures for society which has greatly diminished what I consider tapu korero or tapu statements that have been made by our people that have gradually been falling out of the ears and the memories of us as a people,” Wharemate says.
The project is being funded by the Health Research Council. Face-to-face interviews in te reo and English will be used and recorded and transcribed with 20 Māori rongoā and spiritual practitioners, 20 Māori palliative care providers and 20 whānau (carers and members with a life limiting illnesses) from four key sites or ‘community collaborations’ with local kaumātua in Keri Keri, Hawkes Bay, Wellington and Porirua and Whanganui.
Interviews will focus on each group’s diverse experiences, observations, practice/s and utilisation of tikanga and kawa. How these customs strengthen whānau end-of-life caregiving activities and the potential barriers to their utilisation within different care settings will be investigated. A combined Kaupapa Māori and constructivist analysis will inform a robust thematic analysis of the data.
The community collaborators will invite 20 families in each region to discuss and share their experiences in end-of-life care.
In addition to written publications the study will also develop a DVD of digital stories, commentaries following each story and extracts of participants’ audio narratives, information on cultural care customs, helpful palliative care information and peer reviewed articles. The resource will share information about care customs with diverse Māori whānau, their communities and the palliative care sector.
Dr Moeke-Maxwell says: “It might be a well-worn adage, but I am positive that if we get this right for Māori whānau we will get it right for all families.”