Bereaved Families' Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Whā Older person's Palliative Care Model.

Abstract

The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Māori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Māori and 39 non-Māori), who cared for 52 family members who died aged over 80years. A Kaupapa Māori thematic analysis of family/whānau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Whā Older Person's Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person's mana (authority, status, spiritual power) across four critical health domains: Whānau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The "indigenous" model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.