Most Pacific Peoples wish to die at home, surrounded by aiga (family), a pioneering Ageing Well study has found. Yet, despite these wishes, and despite successive governments calling for palliative care to shift into communities, Pacific Peoples remain the “disadvantaged dying”, according to Dr Ofa Dewes, the study’s Principal Investigator.
Death is one of the most significant moments in a person’s life. Receiving compassionate, culturally appropriate end-of-life care is fundamental for the individual, their family, and the wider community. Such care should not be a privilege but a right.
For Dr Dewes, who is a research fellow at the University of Auckland’s School of Nursing, “ageing well must also include dying well”. But sadly, most Pacific Peoples in Aotearoa New Zealand are not receiving the appropriate end-of-life care that they need, and many rely on aiga to fill the gap.
“Pacific older adults have high levels of unmet need and poor access to palliative care while dying,” said Dr Dewes. “Little is known about their preferences for care at the end-of-life or those of their aiga carers. That is why this study is so timely and relevant.”
About the research
The aim of this research was simple but vitally important: improve end-of-life care for Pacific Peoples, and for aiga supporting them. Findings would help inform government policy, and provide information to the Pacific community.
Dr Dewes embarked on a two-year study examining how, through the eyes of their bereaved aiga, 33 terminally ill Pacific people experienced death in Aotearoa New Zealand. The aiga participants were a map of the Pacific itself: Samoan, Tongan, Cook Islands Māori, Niuean, Tuvaluan, Tokelauan, iKiribati and Māori. Seventy-nine percent were female, and their average age was 48.
Dr Dewes’ team conducted individual and focus group interviews with the aiga carers and key stakeholders. The interviews allowed for policymakers in the public sector (through the medium of Dr Dewes’ advocacy) to hear directly from the minority voices seldom heard in Aotearoa New Zealand.
So what did the researchers discover?
Pacific older adults overwhelmingly favour dying at home. As one woman explained, “we want to be with our family at this time.” Most aiga carers want it that way too, even though “at times it wasn’t easy”, says study participant Reverend Suamalie Iosefa Naisali, who cared for his late wife.
Children sometimes had to quit school to look after parents and grandparents. One participant dropped out of school at 17 because “mum was struggling”. She felt she “didn’t have a choice” as her mum “needed me”. Most don’t regret this choice but concede it is very disruptive to their lives. Such a choice can also be “financially challenging” and “relentless”, observed Dr Dewes.
Spirituality plays a central role in supporting both the carer and loved ones through illness and age-related conditions. Some carers made a “promise to God” to look after their beloved and dropped everything in their own lives to honour that promise. Other carers would lift the spirit of an ailing relative, and themselves, by dancing, a key aspect of Pacific spirituality, and something outside the traditional spectrum of Western palliative care provision.
Flowers and gardening also provided great comfort to loved ones nearing end-of-life. Often the “Church community” stepped in to provide “informal support” so that carers can look after a loved one, Dr Dewes explains. Pacific families often ‘engage’ and ’draw strength’ from their Church family.
For Pacific Peoples, music is almost spiritual in its power and study participants helped create a music video, I’ll Care For You, to spread their message into the community.
Understanding more about Pacific caregiving
Extensive caring tasks in the Pacific community are carried out by family members. Looking after someone with a terminal illness is a challenge, and significant support is required. Mobilising the entire family – including younger members – is essential, as aiga carers will need support whilst they care for their dying loved ones.
The physical and emotional demands, financial burdens, and need for support all mount up and can easily overwhelm carers. Yet in the face of these challenges, Dr Dewes said that families find ways to “cope”.
Dr Dewes also noted that through the study, the team learned that Pacific Peoples are suffering from metabolic diseases. Indeed, many of the dying loved ones had type2 diabetes, and cancer.
Study findings were presented at workshops for the Ministry of Social Development to inform the Pacific content of “Mahi Aroha: Carers’ Strategy Action Plan 2019-2023”, a strategic, cross-governmental action plan to support family carers. In addition to this, fonos (conferences) were held at the community, regional, national, and international levels to spread the study findings.
Giving a voice to younger Pacific carers
This project was also about giving a face and voice to Pacific Peoples who are seldom seen and heard in Aotearoa New Zealand on issues directly concerning them. Fittingly, a music video, I’ll Care For You, was created at the suggestion of the study participants, who felt it would be the most appropriate medium to spread their message into the community.
For Pacific Peoples, music is almost spiritual in its power. Aiga carers wanted to convey the importance of supporting people in the community who care for their older relatives, especially at the end-of-life — two carers themselves appeared in the video.
Five ‘digital stories’, short videos narrated by aiga carers, were also created to give voice to caregiver experiences. Each participant developed their story and spoke about the experience of caring for a dying loved one. Reverend Naisali was one of the participants who agreed to make a digital story to voice his experience of caring for his ailing wife at the end.
The powerful and poignant stories have been released across social media platforms and on Dr Dewes’ website to share with the community at large the experience of aiga carers. Reverend Naisali’s video has been viewed over three thousand times on Facebook alone by people here in Aotearoa New Zealand, the Pacific, and around the world.
Designed as educational resources, these stories raise awareness about the challenges facing aiga carers. The music video and digital stories also tap into Dr Dewes’ wider mission: making health research and advice accessible to the Pacific community. Two key recommendations emerged from the study findings.
Malia Hamani, an investigator on the study and the Chief Executive at social services agency Treasuring Older Adults (TOA Pacific Inc.), argued the government should allow funding for family carers to support them. Dr Dewes also proposed developing a pathway for aiga carers to ‘transition’ into the aged care workforce.
“They have learnt the skills and coping with all the different responsibilities that a carer provides at end-of-life. This is a workforce that is yet untapped,” she said.
Dr Dewes’ study provides urgently-needed information on Pacific peoples’ experiences at end-of-life. It also brings into sharp relief the challenges faced by aiga who carry out the bulk of their dying relative’s care.
“Carers need help”. That’s the message Dr Dewes believes needs to be truly heard. And hopefully as a result of this unique and poignant study, help — from the wider Pacific community and from government agencies at large — is on the way.
Co-investigator Malia Hamani from TOA Pacific Inc, Reverend Suamalie Iosefa Naisali, and Dr Ofa Dewes.
This project was also about giving a face and voice to Pacific Peoples who are seldom seen and heard in Aotearoa New Zealand on issues directly concerning them.
As part of the Tāpinga ‘a Maama: Pacific life and death in advanced age study, Pacific family carers interviewed told us they wanted a music video to convey their messages about the importance of supporting people in the community who care for their older relatives, including at the end of life.
‘I’ll Care For You’ was written and performed by the Valiant Boys feature in the first video. The second video features commentary about the music video as well as the lyrics.
The research team wishes to thank Malia Hamani and Lata Fale of Treasuring Older Adults Inc. who were instrumental in the creation of this video. Additionally, the team wishes to recognise two caregivers, Suitupe Sorensen and Ana Johansson (and members of their families), who appeared in the video.
These 5 digital stories were created as part of the “Tāpinga ‘a Maama: Pacific life and death in advanced age” research project carried out by Dr Ofa Dewes in the School of Nursing at the University of Auckland.
Following the interviews, family carers were invited to participate in the digital storytelling workshop. Each participant developed their own story about their experience of end-of-life care.
These stories will be included in the study’s educational resources to give meaning and context to the combined key informant interviews.