Planning a Last Flight to Rarotonga From a Ward in Ōkalani

In 3 focus groups, 18 Cook Islands Māori community members told researchers about palliative care for their families in Aotearoa (long white cloud). The team met 2 groups at community facilities in Auckland and the third on Microsoft Teams. Sessions lasted between 60 and 90 minutes and opened with prayer. Advisory group members attended the Auckland sessions to interpret and to give cultural guidance. The researchers used the Tīvaevae methodology, named after the Cook Islands quilts sewn by groups of women.

The team tested a model of care drawn from earlier research by the lead author. The lead author's interviews with 28 participants had produced te vaerua kōpū tangata ora, a Cook Islands Māori model of palliative care. That earlier study treated the kōpū tangata (the family, ancestors included) as a party to palliative care with its own life-course transition. The focus groups aimed to locate the best times and settings in palliative care for the model.

Under free association with New Zealand, the Cook Islands governs itself and shares the New Zealand Crown with Niue and Tokelau. Cook Islands Māori are New Zealand citizens and use the NZ health system as of right. The 2023 Census counted 94,176 Cook Islands Māori in Aotearoa. Of those with a recorded answer, 84.4% were Kiwi-born and 8.2% could speak Cook Islands Māori.

The Ministry for Pacific Peoples calls the language te reo Māori Kūki ʻAirani, a name distinguishing it from the te reo Māori of tangata whenua. The ministry's orthography guidelines use the Rarotonga dialect as their model, because Rarotongan is the most spoken dialect and the standard for writing. The guidelines draw many of their examples from the Cook Islands Maori Dictionary compiled by Buse and colleagues in 1995. Those guidelines also record more Cook Islanders in the diaspora than in the Cook Islands.

A literature review on Pacific palliative care cited by the researchers found NZ services modelled on Western care. The review found service design and organisational habit at odds with the participation of the extended family and with the spiritual needs of families. The review also linked gaps in care to misunderstandings between clinicians and families. The reviewers found those gaps widest in families with limited English or low health literacy.

The researchers identified 2 moments of heavy need for plain health information, prognostic disclosure and the transfer of care to the family. Participants described doctors using unfamiliar clinical vocabulary at disclosure and giving thin explanations of the care plan. Some families left consultations unsure of the cancer type. A participant told the researchers that doctors explain an illness in their own terms instead of the family's terms. Earlier studies cited in the paper found prognostic conversations rarer when patient and clinician differ in ethnicity. Those studies also recorded more frequent misunderstandings about prognosis between minority patients and their clinicians.

Some participants wanted a dying relative home in the Cook Islands, among the language and the people of the islands. Participants described early planning as the condition of that return, because a patient judged unfit to fly stays in Aotearoa. Other participants weighed the obstacles. They named limited specialist services in the islands and the need for stable medical support. The researchers tied plain prognostic information directly to the choice between a return to the Cook Islands and end-of-life care at home in New Zealand.

When information was scarce, participants supplied their own assumptions. The researchers cited participants' fear of the English word Hospice as an example. Participants with good hospice experience revised that view. Some said they would choose a hospice if their cancer returned. Tōtara Hospice has a 12-bed inpatient unit in Manurewa, South Auckland. Its Healthpoint listing names Cook Islands Māori among its languages. Healthify, a New Zealand health information site, links a hospice care leaflet in Cook Islands Māori with English.

At the second moment, the hospital hands care to the family. Participants said the services expected families to give comfort care at home on thin instruction. Families learned the tasks under stress and on a short timetable. Several participants were unsure of the scope of the service between staff visits. Participants also voiced a wish to care for dying relatives at home, a wish tied to family and cultural identity. Some said they hesitated to leave a relative with outsiders and defined trust as confidence in safe care.

Families giving comfort care at home follow written instructions, including instructions for medicine. A wrong dose interval in those instructions makes a dose unsafe. A clinic in Brisbane instructed Huri translators on a screening booklet for Tongan-speaking patients. The instruction set 2 rules for the English name of a blood test. The translators placed a bracketed Tongan gloss after the English test name and its initials. The booklet then gave the test by its English initials alone. A first-language reviewer checked the bracketed gloss against the source.

Participants counted church groups and cultural networks among the carers of a dying relative. Pastors gave guidance and eased the emotional load on patients and kin. Faith and prayer recurred in the 3 groups. The researchers reported a change of emphasis from a good death to good relationships as the central concern of community members.

Speaking of relatives referred from the Cook Islands for cancer treatment, participants described trouble with the NZ system. They reported difficulty with accommodation and money after referral and described patients lost between the 2 health systems. Participants described transnational health care shaped by mobility and dispersed kin.

In a 2024 randomised trial, Temel and colleagues tested a stepped model of palliative care. Clinicians in the trial introduced palliative care at diagnosis and then at points set by a patient's quality-of-life needs. The stepped model produced quality-of-life outcomes similar to those of early palliative care. The World Health Organization urged in 2018 that palliative care services include all people. The researchers argued that clinicians can assign preparation and time to the 2 moments.

The authors limit their findings to the lived experience of 18 participants in a qualitative study. A published protocol for the next phase lists interviews with 25 to 35 community members and 10 palliative care clinicians. The protocol applies the Tīvaevae methodology again. It tests te vaerua kōpū tangata ora in clinical practice on 3 criteria, effectiveness, cultural appropriateness and feasibility.