Massey University psychology doctoral student Diane Koti (Ngāti Porou, Ngāti Mainapoto, and Te Whānau ā Apanui) is investigating how current end of life care models can better incorporate the needs of Māori patients and whanau.
“For many Māori, palliative care and hospice are new terms and phenomena,” she says. “Many Māori have not heard of, or encountered, or had any need to access palliative care and hospice services.”
Ms Koti was recently awarded the Rose Hellaby 2014 Postgraduate Scholarship at a ceremony at the Auckland Art Gallery – Te Toi o Tamaki for her research on end of life and palliative care for Māori. The Manawatü campus-based researcher aims to build on her Masters research, in which she talked to terminally ill Māori patients and their whānau about their end of life care experiences. Her research suggested a need for further understanding of the process of end of life and palliative care, particularly from a historical perspective.
Until her grandmother passed away five years ago from terminal cancer, she says her whānau had never encountered hospice care and were unfamiliar with what it was. In this sense, having a stranger tend to their dying relative – albeit a kindlly professional – was at times disconcerting, she says.
Her observations sparked her interest in palliative care, and this deepened when she went to work for the hospice where her grandmother had been a community outpatient.
While full of praise for the service and support Hospice New Zealand offers patients and families, she observed gaps in its understanding of Māori beliefs, protocols and experiences of death and dying. These can include the involvement of a large number of family members providing physical care, karakia (prayers), waiata (song) and tangi planning when a person is nearing the end of their life.
She envisages her study will contribute to future planning. “The Māori population is growing, is youthful although getting older, so it can be assumed that Māori will be potential high future users of New Zealand’s palliative care services,” she says. “We need to ensure that palliative care and hospice services, facilities, and health professionals are competent in meeting the needs of Māori. Health professionals should be educated in the unique cultural needs and considerations when working with, and caring for, Māori.”
In rural areas, particularly, a lack of resources has been identified as hampering palliative care delivery, and for urban areas palliative care is frequently detached from the appropriate cultural needs of indigenous peoples, she says. “There’s a current lack of Māori staff in both clinical and non-clinical advisory roles,” she says.
Ms Koti hopes her research will lead to the development of a Māori model for end-of-life care based on kaupapa Māori principles. Her ultimate dream is to establish a kaupapa Māori end of life care facility on the East Coast near Gisborne, in honour of her grandmother, that caters for Māori and non-Māori and provides training in culturally sensitive end of life care.
Ms Koti is supported by her supervisors Associate Professor Ross Flett, Dr Natasha Tassell-Matamua, and Dr Hukarere Valentine.
This article was first published by Massey University. Read Diane’s research on the university’s website.