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 80 years. 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.

This is a preview of subscription content, access via your institution.

Fig. 1

Notes

  1. 1.

    Non-indigenous people discussed in this paper are the white descendants of settler colonists in New Zealand. They are also referred to as non-Māori.

References

  1. Arlidge, B., Abel, S., Asiasiga, L., Milne, S., Crengle, S., & Ameratunga, S. (2009). Experiences of whānau/families when injured children are admitted to hospital: A multi-ethnic qualitative study from Aotearoa/New Zealand. Ethnicity & Health, 14(2), 169–183.

    Article  Google Scholar 

  2. Bishop, R. (1999). Kaupapa Māori research: An indigenous approach to creating knowledge. In L. Nikora & N. Robertson (Eds.), Maori psychology: Research and practice. The proceedings of a symposium (pp. 1–6). Hamilton, NZ: Department of Psychology, University of Waikato.

    Google Scholar 

  3. Blakely, T., Tobias, M., Robson, B., Ajwani, S., Bonne, M., & Woodward, A. (2005). Widening ethnic mortality disparities in New Zealand 1981-99. Social Science & Medicine, 61(10), 2233–2251.

    Article  Google Scholar 

  4. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.

    Article  Google Scholar 

  5. Creswell, J. W. (2013). Qualitative inquiry and research design: Choosing among five approaches (3rd ed.). Los Angeles, LA: SAGE.

    Google Scholar 

  6. Dein, S. (2006). Culture and Cancer care: Anthropological insights in oncology. Maidenhead, England: Open University Press.

    Google Scholar 

  7. Duggleby, W., Kuchera, S., MacLeod, R., Holyoke, P., Scott, T., Holtslander, L., Letendre, A., Moeke-Maxwell, T., Burhansstipanov, L., & Chambers, T. (2015). Indigenous peoples’ experiences at the end of life. Palliative and Supportive Care, 13, 1721–1733.

    Article  Google Scholar 

  8. Durie, M. (1994). Whaiora: Maori health development. Auckland: Oxford University Press.

    Google Scholar 

  9. Durie, M. (2005). Nga tai Matatu: Tides of Maori endurance. Auckland, NZ: Oxford University Press.

    Google Scholar 

  10. Durie, M. (2006). Measuring Māori wellbeing. Wellington: New Zealand Treasury.

    Google Scholar 

  11. Dutta, M. J. (2008). Communicating health: A culture-centered approach. Cambridge: Polity Press.

    Google Scholar 

  12. Dyall, L., Kepa, M., Hayman, K., Teh, R., Moyes, S., Broad, J. B., & Kerse, N. (2013). Engagement and recruitment of Māori and non-Māori people of advanced age to LiLACS NZ. Australian and New Zealand Journal of Public Health, 37(2), 124–131.

    Article  Google Scholar 

  13. Eketone, A. (2008). Theoretical underpinning of kaupapa Māori directed practice. MAI Review, 1, 1–3.

    Google Scholar 

  14. Fleming, J., Zhao, J., Farquhar, M., Brayne, C., & Barclay, S. (2010). Place of death for the 'oldest old': ≥ 85-year-olds in the CC75C population-based cohort. The British Journal of General Practice, 60(573), 171–179.

    Article  Google Scholar 

  15. Gardiner, C., Allen, R., Moeke-Maxwell, T., Robinson, J., & Gott, M. (2016). Methodological considerations for researching the financial costs of family caregiving within a palliative care context. BMJ Supportive & Palliative Care, 6(4), 445.

    Article  Google Scholar 

  16. Gomes, B., Cohen, J., Deliens, L., & Higginson, I. (2011). Living with ageing and dying. International trends in circumstances of death and dying amongst older people. In M. Gott & C. Ingleton (Eds.), Living with ageing and dying (pp. 3–18). New York: Oxford.

    Google Scholar 

  17. Gott, M., & Ingleton, C. (Eds.). (2011). Living with ageing and dying. Palliative and end of life care for older people. Oxford: New York.

    Google Scholar 

  18. Gott, M., Moeke-Maxwell, T., Williams, L., Black, S., Trussardi, G., Wiles, J., & Kerse, N. (2015). Te Pākeketanga: Living and dying in advanced age: A study protocol. BMC Palliative Care, 14, 74.

    Article  Google Scholar 

  19. Gott, M., Moeke-Maxwell, T., Morgan, T., Black, S., Williams, L., Boyd, M., Frey, R., Robinson, J., Slark, J., Trussardi, G., Waterworth, S., Wharemate, R., Hansen, W., Smith, E., Kaka, K., Henare, K., Henare, E., Poto, M., Tipene-Carter, E., & Hall, D. (2017). Working bi-culturally within a palliative care research context: The development of the Te Ārai palliative care and end of life research group. Mortality, 22(4), 291–307. https://doi.org/10.1080/13576275.2016.1216955.

    Article  Google Scholar 

  20. Harris, R., Tobias, M., Jeffreys, M., Waldegrave, K., Karlsen, S., & Nazroo, J. (2006). Racism and health: The relationship between experience of racial discrimination and health in New Zealand. Social Science and Medicine, 63(6), 1428–1441.

    Article  Google Scholar 

  21. Hayman, K., Kerse, N., Dyall, L., Kepa, M., Teh, R., Wham, C., & Jatrana, S. (2012). Life and living in advanced age: A cohort study in New Zealand, Te Pūawaitanga O Ngā Tapuwae Kia Ora Tonu LiLACS NZ: Study protocol. BMC Geriatrics, 12, 1–13.

    Article  Google Scholar 

  22. Heyland, D. K., Dodek, P., Rocker, G., Groll, D., Gafni, A., Pichora, D., et al. (2006). What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. Cmaj, 174(5), 627–633.

    Article  Google Scholar 

  23. Hospice New Zealand. (2012). Hospice New Zealand standards for palliative care: Quality review programme and guide. Wellington: Hospice New Zealand.

    Google Scholar 

  24. Hudson, M., Milne, M., Reynolds, P., Russell, K., & Smith, B. (2010). Te Ara Tika: Guidelines for Māori research ethics: A framework for researchers and ethics committee members. Auckland, NZ: Health Research Council of New Zealand.

    Google Scholar 

  25. Kellehear, A. (2005). Compassionate cities: Public health and end-of-life care. London: Routledge.

    Google Scholar 

  26. McCreanor, T., & Nairn, R. (2002). Tauiwi general Practitioners' explanations of Maori health: Colonial relations in primary healthcare in Aotearoa/New Zealand? Journal of Health Psychology, 7(5), 509–518.

    Article  Google Scholar 

  27. McNamara, B., & Rosenwax, L. (2010). Which carers of family members at the end of life need more support from health services and why? Social Science & Medicine, 70(7), 1035–1041.

    Article  Google Scholar 

  28. Ministry of Health. (2010). Kōrero Mārama: Health literacy and Māori results from the 2006 adult literacy and life skills survey. Wellington: Ministry of Health.

    Google Scholar 

  29. Mino, J., & Lert, F. (2005). Beyond the biomedical model: Palliative care and its holistic model. HEC Forum, 2005(17), 227–236.

    Google Scholar 

  30. Moeke-Maxwell, T., Nikora, L. W., & Te Awekotuku, N. (2013). Manaakitanga: Ethical research with Māori who are dying. In M. N. Agee, T. McIntosh, & P. Culbertson (Eds.), Pacific identities and well-being: Cross-cultural perspectives (pp. 188–203). New York: Routledge.

    Google Scholar 

  31. Nikora, L., & Robertson, N. (Eds.). (1999). Maori psychology: Research and practice. Hamilton: Department of Psychology, University of Waikato.

    Google Scholar 

  32. Reid, P., Paine, S. J., Curtis, E., Jones, R., Anderson, A., Willing, E., & Harwood, M. (2017). Achieving health equity in Aotearoa: Strengthening responsiveness to Māori in health research. New Zealand Medical Journal, 130(1465), 96–103.

    Google Scholar 

  33. Reissman, C. K. (2008). Narrative methods for the human sciences. Thousand Oaks, CA: Sage.

    Google Scholar 

  34. Rosenberg, J. P., Mills, J., & Rumbold, B. (2016). Putting the public into public health: Community engagement in palliative and end of life care. Progress in Palliative Care, 24(1), 1–3.

    Article  Google Scholar 

  35. Roulston, K. (2010). Considering quality in qualitative interviewing. Qualitative Research, 10(2), 199–228.

    Article  Google Scholar 

  36. Rowland, C., Hanratty, B., Pilling, M., van den Berg, B., & Grande, G. (2017). The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures. Palliative Medicine, 31(4), 346–355.

    Article  Google Scholar 

  37. Schwass, M. (Ed.). (2005). Last Words: Approaches to Death in New Zealand's Cultures and Faiths. Wellington. NZ: Bridget Williams Books.

    Google Scholar 

  38. Smith, L. T. (1999). Decolonizing methodologies: Research and indigenous peoples. Dunedin, NZ: University of Otago Press.

    Google Scholar 

  39. Wepa, D. (Ed.). (2005). Cultural safety in Aotearoa New Zealand. Auckland: Pearson Education.

    Google Scholar 

  40. Wiles, J. (2003). Informal caregivers' experiences of formal support in a changing context. Health and Social Care in the Community, 11, 189–207.

    Article  Google Scholar 

Download references

Funding

This work was supported by the Health Research Council (HRC) New Zealand, as part of Te Pākeketanga (HRC 13/293).

Author information

Affiliations

Authors

Corresponding author

Correspondence to Tess Moeke-Maxwell.

Ethics declarations

Ethics Approval

Ethics approval was granted by The University of Auckland Human Participants Ethics Committee on 17 June 2013 (UAHPEC: 9686).

Conflict of Interest

The authors declare that they have no conflict of interest.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Moeke-Maxwell, T., Collier, A., Wiles, J. et al. Bereaved Families’ Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Whā Older person’s Palliative Care Model. J Cross Cult Gerontol 35, 177–193 (2020). https://doi.org/10.1007/s10823-020-09397-6

Download citation

Keywords

  •  Aging
  • End-of-life
  • Indigenous
  • Palliative care