Utilising literature and systems theory to explore the intersections between policy, practice and equity of access to palliative care for older adults in Aotearoa New Zealand
Keywords:Older adults, equity, palliative care, systems theory, social work
Older adults are the ‘disadvantaged dying’ within palliative care (Gott, Ibrahim, & Binstock, 2011). International and national research indicates those older in age are negatively impacted when accessing inpatient and outpatient palliative care services. As a Palliative Care Social Worker within a hospice multidisciplinary team, I primarily work alongside patients who are older adults, their family/whānau, and caregivers. Observations within practice foregrounded this examination of palliative care and inequity of access amongst older adults that includes Māori and LGBTQ+ perspectives, COVID-19 pandemic implications, and the impacts of inequitable access for caregivers and family/whānau. Inequity is explored within academic literature, national and international strategic documents, and legislative frameworks. Utilising a social work lens to examine the impacts of inequity and ageism, this article raises awareness for equitable access to palliative care and end-of-life services for older adults.
Agnew, A., Manktelow, R., Haynes, T., & Jones, L. (2011). Bereavement assessment practice in hospice settings: Challenges for palliative care social workers. British Journal of Social Work, 41(1), 111130. https://doi. org/10.1093/bjsw/bcq055
Ahmed, N., Bestall, J. E., Ahmedzai, S. H., Payne, S. A., Clark, D., & Noble, B. (2004). Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliative Medicine, 18(6), 525–542. https://doi.org/10.1191/0269216304pm921oa
Aotearoa New Zealand Association of Social Workers. (2019). Code of ethics. Blueprint Publishing.
Beddoe, L. (2011). Health social work: Professional identity and knowledge. Qualitative Social Work, 12(1), 24–40. https://doi.org/10.1177/1473325011415455
Belasco, A., Barbosa, D., Bettencourt, A. R., Diccini, S., & Sesso, R. (2006). Quality of life of family caregivers of elderly patients on haemodialysis and peritoneal dialysis. American Journal of Kidney Diseases, 48(6), 955–963. https://doi.org/10.1053/j.ajkd.2006.08.017
Boulton, A., Levy, M., & Cvitanovic, L. (2020). Beyond Pūao-te-Āta-tū: Realising the promise of a new day (Te Arotahi Paper Series, December 2020, No. 06). Ngā Pae o te Māramatanga, New Zealand’s Māori Centre of Research Excellence. https://www.maramatanga.ac.nz/ news-events/news/te-arotahi-paper-series-december-2020-no-06
Bristowe, K., Hodson, M., Wee, B., Almack, K., Johnson, K., Daveson, B. A., Koffman, J., McEnhill, L., & Harding, R. (2018). Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study. Palliative Medicine, 32(1), 23–35. https://doi.org/10.1177/0269216317705102
Cartwright, C., Hughes, M., & Lienert, T. (2012). End-of-life care for gay, lesbian, bisexual, and transgender people. Culture, Health & Sexuality, 14(5), 537–548. https://doi. org/10.1080/ 13691058.2012.673639
Castelli Dransart, D. A., Lapierre, S., Erlangsen, A., Canetto, S. S., Heisel, M., Draper, B., Lindner, R., Richard-Devantoy, S., Cheung, G., Scocco, P., Gusmão, R., De Leo, D., Inoue, K., De Techterman, V., Fiske, A., Hong, J.P., Landry, M., Lepage, A., Marcoux, I., ... Wyart, M. (2021). A systematic review of older adults’ request for or attitude toward euthanasia or assisted suicide. Aging & Mental Health, 25(3), 420–430. https://doi.org/10.1080/13607863.2019.1697201
Cheyne, C., O’Brien., & Belgrave, M. (2011). Social policy in Aotearoa New Zealand (4th ed.). Oxford University Press.
Connolly, M., & Harms, L. (2015). Social Work: From Theory to Practice (2nd ed.). Cambridge University Press. doi:10.1017/9781316104644
Coyle, N., & Sculco, L. (2004). Expressed desire for hastened death in seven patients living with advanced cancer: A phenomenologic inquiry. Oncology Nursing Forum, 31(4), 699–706.
Dunbrack, J. (2005). The information needs of informal caregivers involved in providing support to a critically ill loved one. Health Canada.
Durie, M. (2011). Ngā tini whetū: Navigating Māori futures. Huia.
Egan, R., & Maidment, J. (2016). Practice skills in social work and welfare: More than just common sense (3rd ed.). Allen & Unwin.
Fenaughty, J., & Pega, F. (2016). Why marriage equality is not enough: Enduring social policy concerns for gender- and sexually diverse New Zealanders. In L. Beddoe, & J. Maidment (Eds.), Social policy for social work and human services in Aotearoa New Zealand: Diverse perspectives (pp. 223–236). Canterbury University Press.
Ferrell, B. R., Twaddle, M. L., Melnick, A., & Meier, D. E. (2018). National consensus project clinical practice guidelines for quality palliative care guidelines. Journal of Palliative Medicine, 21(12), 1684–1689.
Flett, G. L. (2020). Aging and feeling valued versus expendable during the covid-19 pandemic and beyond: A review and commentary of why mattering is fundamental to the health and well-being of older adults. International Journal of Mental Health and Addiction, 19(6), 2443–2469. https://doi.org/10.1007/s11469-020- 00339-4
Frey, R., Robinson, J., Old, A., Raphael, D., & Gott, M. (2020). Factors associated with overall satisfaction with care at the end-of-life: Caregiver voices in New Zealand. Health & Social Care in the Community, 28(6), 2320–2330. https://doi.org/10.1111/hsc.13053
Furlotte, C., Gladstone, J. W., Cosby, R. F., & Fitzgerald, K.-A. (2016). “Could we hold hands?” Older lesbian and gay couples’ perceptions of long-term care homes and home care. Canadian Journal on Aging/La Revue Canadienne Du Vieillissement, 35(04), 432–446. https://doi.org/10.1017/S0714980816000489
Giles, R. (2016). Social workers’ perceptions of multi- disciplinary team work: A case study of health social workers at a major regional hospital in New Zealand. Aotearoa New Zealand Social Work, 28(1), 25–33. https://doi.org/10.11157/anzswj-vol28iss1id113
Gilissen, J., Pivodic, L., Unroe, K. T., & Van den Block, L. (2020). International COVID-19 palliative care guidance for nursing homes leaves key themes unaddressed. Journal of Pain and Symptom Management, 60(2), e56–e69. https://doi.org/10.1016/j.jpainsymman.2020.04.151
Golden, A. (2019). Supporting families and lay caregivers on the palliative care journey. Adult Palliative Care for Nursing, Health and Social Care, 134–151. https://doi. org/10.4135/9781526465580
Gott, M., Allen, R., Moeke-Maxwell, T., Gardiner, C., & Robinson, J. (2015). ‘No matter what the cost’: A qualitative study of the financial costs faced by family and family, whānau caregivers within a palliative care context. Palliative Medicine, 29(6), 518–528. https://doi.org/10.1177/0269216315569337
Gott, M., Frey, R., Wiles, J., Rolleston, A., Teh, R., Moeke- Maxwell, T., & Kerse, N. (2017). End of life care preferences among people of advanced age: LiLACS NZ. BMC Palliative Care, 16(1), 76–76. https://doi. org/10.1186/s12904-017-0258-0
Gott, M., Ibrahim, A. M., & Binstock, R. H. (2011). The disadvantaged dying: Ageing, ageism, and palliative care provision for older people in the UK. In M. Gott (Ed.). Living with ageing and dying: Palliative and end of life care for older people (pp. 52–62). Oxford University Press.
Gott, M., & Ingleton, C. (2011). How can we improve palliative care provision for older people? Global perspectives. BMJ Supportive & Palliative Care, 1(2), 115–116. https://doi.org/10.1136/bmjspcare-2011-000088
Haviland, K., Burrows Walters, C., & Newman, S. (2021). Barriers to palliative care in sexual and gender minority patients with cancer: A scoping review of the literature. Health & Social Care in the Community, 29(2), 305–318. https://doi.org/10.1111/hsc.13126
Hogan, S. (2021). Hidden in plain sight: Optimising the allied health professions for better, more sustainable integrated care. New Zealand Institute of Economic Research. https://www.alliedhealth.org. nz/uploads/8/8/9/4/88944696/hidden_in_plain_sight_ final_23_06_2021.pdf
Honinx, E., Van Dop, N., Smets, T., Deliens, L., Van Den Noortgate, N., Froggatt, K., Gambassi, G., Kylänen, M., Onwuteaka-Philipsen, B., Szczerbin ́ska, K. & Van den Block, L. (2019). Dying in long-term care facilities in Europe: The PACE epidemiological study of deceased residents in six countries. BMC Public Health, 19(1), 1–12. https://doi.org/10.1186/s12889-019-7532-4
Homosexual Law Reform Act. (1986). https://www.legislation. govt.nz/act/public/1986/0033/latest/whole.html
Human Rights Act. (1993). https://www.legislation.govt.nz/ act/public/1993/0082/latest/DLM304212.html
International Federation of Social Workers. (2021). Global definition of social work. https://www.ifsw.org/what-is- social-work/global-definition-of-social-work/
Jackson, N., & Healthwatch, A. (2019). Submission to the Office for Seniors on the draft strategy: Better
later life–He Oranga Kauma ̄ tua 2019 to 2034. https://officeforseniors.govt.nz/better-later-life-strategy/
Kelly, B., Burnett, P., Pelusi, D., Badger, S., Varghese, F., & Robertson, M. (2002). Terminally ill cancer patients’ wish to hasten death. Palliative Medicine, 16(4), 339-345.
Kemery, S. A. (2021). Family perceptions of quality of end of life in LGBTQ+ individuals: A comparative study. Palliative Care and Social Practice, 15. https://doi.org/10.1177/2632352421997153
Kidd, J., Came, H., Doole, C., & Rae, N. (2021). A critical analysis of te Tiriti o Waitangi application in primary health organisations in Aotearoa New Zealand: Findings from a nationwide survey. Health & Social Care in the Community, 30(1), e105–e112. https://doi.org/10.1111/ hsc.13417
King, A. (2001). The New Zealand palliative care strategy. Ministry of Health.
Kortes-Miller, K., Boulé, J., Wilson, K., & Stinchcombe, A. (2018). Dying in long-term care: Perspectives from sexual and gender minority older adults about their fears and hopes for end of life. Journal of Social Work in End-of-Life & Palliative Care, 14(2-3), 209–224. https://doi.org/10.1080/15524256.2018.1487364
Maingi, S., Bagabag, A. E., & O’Mahony, S. (2018). Current best practices for sexual and gender minorities in hospice and palliative care settings. Journal of Pain and Symptom Management, 55(5), 1420–1427. https://doi.org/10.1016/j.jpainsymman.2017.12.479
Miller, E. A., Livingstone, I., & Ronneberg, C. R. (2017). Media portrayal of the nursing homes sector: A longitudinal analysis of 51 US newspapers. The Gerontologist, 57(3), 487–500. https://doi.org/10.1093/ geront/gnv684
Ministry of Health. (2001). The New Zealand palliative care strategy. https://www.health.govt.nz/system/files/ documents/publications/palliativecarestrategy.pdf
Ministry of Health. (2017). Review of adult palliative care services in New Zealand. https://www.health.govt.nz/ publication/review-adult-palliative-care-services-new- zealand
Ministry of Health. (2020). COVID-19: Advice for higher risk people. https://covid19.govt.nz/prepare-and-stay-safe/ people-at-higher-risk-of-severe-illness-from-covid-19
Morgan, T., Wiles, J., Park, H-J, Moeke-Maxwell, T., Dewes, O., Black, S., Williams, L., & Gott, M. (2019). Social connectedness: What matters to older people? Ageing & Society, 41(5), 1126–1144. https://doi.org/10.1017/ S0144686X1900165X
Morgan, T., Wiles, J., Williams, L., & Gott, M. (2021). COVID-19 and the portrayal of older people in New Zealand news media. Journal of the Royal Society of New Zealand, 51(Suppl. 1), S127–S142. https://doi.org/10.1080/03036758.2021.1884098
Murray, S. A., Kendall, M., Mitchell, G., Moine, S., Amblas-Novellas, J., & Boyd, K. (2017). Palliative care from diagnosis to death. BMJ, 356. https://doi. org/10.1136/bmj.j878
Nicholson, C., & Richardson, H. (2018). Age-attuned hospice care: An opportunity to better end of life care for older people. https://www.stchristophers.org.uk/wp-content/ uploads/2018/10/Age-attuned-Hospice-care-document.pdf
Payne, M. (2004). Social work practice identities: An agency study of a hospice. Practice 16(1), 5–15. https://doi. org/10.1080/0950315042000254929
Payne, M. (2014). Modern social work theory (4th ed.). Palgrave Macmillan.
Pihama, L., & Lipsham, M. (2020). Noho haumaru: Reflecting on Māori approaches to staying safe during Covid-19 in Aotearoa (New Zealand). Journal of Indigenous Social Development, 9(3), 92–101.
Pihama, L., Smith, L. T., Cameron, N., Te Nana, R., Kohu Morgan, H. R., Skipper, H., & Mataki, T. (2020). He oranga ngākau: Māori approaches to trauma informed care. Te Kotahi Research Institute.
Pihama, L., Smith, L. T., Evans-Campbell, T., Kohu-Morgan, H., Cameron, N., Mataki, T., Te Nana, R., Skipper, H. & Southey, K. (2017). Investigating Ma ̄ori approaches to trauma-informed care. Journal of Indigenous Well-being, 2(3), 18–31.
Pivodic, L., Smets, T., Van den Noortgate, N., Onwuteaka- Philipsen, B. D., Engels, Y., Szczerbin ́ska, K., Finne- Soveri, H., Froggatt, K., Gambassi, G., Deliens, L. & Van den Block, L. (2018). Quality of dying and quality of end- of-life care of nursing home residents in six countries: An epidemiological study. Palliative Medicine, 32(10), 1584-1595.
Powell, V. D., & Silveira, M. J. (2021). Palliative care for older adults with multimorbidity in the time of COVID 19. Journal of Aging & Social Policy, 33(4-5), 500- 508. https://doi.org/10.1080/08959420.2020.1851436
Rietjens, J. A., Sudore, R. L., Connolly, M., van Delden, J. J., Drickamer, M. A., Droger, M., van der Heide, A., Heyland, D. K., Houttekier, D., Janssen, D. J., Orsi, L., & European Association for Palliative Care. (2017). Definition and recommendations for advance care planning: An international consensus supported by the European Association for Palliative Care. The Lancet Oncology, 18(9), e543-e551.
Roberts, S. (2016). Assessment with Māori. In R. Egan & J. Maidment (Eds.), Practice skills in social work and welfare: More than just common sense (3rd ed., pp. 207–225). Allen & Unwin.
Rodríguez-Prat, A., Balaguer, A., Booth, A., & Monforte- Royo, C. (2017). Understanding patients’ experiences of the wish to hasten death: An updated and expanded systematic review and meta-ethnography. BMJ Open, 7(9), e016659.
Robinson, J., Gott, M., & Ingleton, C. (2014). Patient and family experiences of palliative care in hospital: What do we know? An Integrative Review. Palliative Medicine, 28(1), 18–33.
Rosa, W. E., Bhadelia, A., Knaul, F. M., Travers, J. L., Metheny, N., & Fulmer, T. (2022). A longevity society requires integrated palliative care models for historically excluded older people. The Lancet Healthy Longevity, 3(4), e227-e228.
Schoenmakers, B., Buntinx, F., & Delepeleire, J. (2010). Factors determining the impact of caregiving on caregivers of elderly patients with dementia: A systematic literature review. Maturitas, 66(2), 191-200.
Smith, J., Borchelt, M., Maier, H., & Jopp, D. (2002). Health and well–being in the young old and oldest old. Journal of Social Issues, 58(4), 715-732.
Stinchcombe, A., Smallbone, J., Wilson, K., & Kortes-Miller, K. (2017). Healthcare and end-of-life needs of lesbian, gay, bisexual, and transgender (LGBT) older adults: A scoping review. Geriatrics, 2(1), 13.
Te Tiriti o Waitangi. (1840). https://waitangitribunal.govt.nz/ treaty-of-waitangi/te-reo-maori-version/
Thompson, N. (2016). Anti-discriminatory practice: Equality, diversity, and social justice. Macmillan International Higher Education.
Totara Hospice, Mary Potter Hospice, Te Ohu Rata o Aotearoa, & Hospice New Zealand. (2020). Mauri Mate: Māori palliative care framework for hospices. Te Kahu Pairuri o Aotearoa, Hospice New Zealand. https://go.exlibris.link/Zjbwb8j0
Wang, H., Li, T., Barbarino, P., Gauthier, S., Brodaty, H., Molinuevo, J.L., Xie, H., Sun, Y., Yu, E., Tang, Y. & Weidner, W., (2020). Dementia care during COVID-19. The Lancet, 395 (10231), 1190–1191.
Wang, L., & Wang, Z. (2020). Research on the quality hospice care of elderly cancer patients in China under social work intervention. Environmental Health and Preventive Medicine, 25(1), 36–36. https://doi. org/10.1186/s12199-020-00867-4
Wiles, J. L., & Jayasinha, R. (2013). Care for place: The contributions older people make to their communities. Journal of Aging Studies, 27(2), 93–101.
Wong, E. L. Y., Lau, J. Y. C., Chau, P. Y. K., Chung, R. Y. N., Wong, S. Y. S., Woo, J., & Yeoh, E. K. (2022). Caregivers’ experience of end-of-life stage elderly patients: Longitudinal qualitative interview. International Journal of Environmental Research and Public Health, 19(4), 2101.
World Health Organisation. (2020, July 24). Preventing and managing COVID-19 across long-term care services (Policy brief). https://www.who.int/publications/i/item/ WHO-2019-nCoV-Policy_Brief-Long-term_Care-2020.1
Yang, G. M., Kwee, A. K., & Krishna, L. (2012). Should patients and family be involved in “Do not resuscitate” decisions? Views of oncology and palliative care doctors and nurses. Indian Journal of Palliative Care, 18(1), 52. https://doi/org/10.4103/0973-1075.97474
Zambas, S. I., & Wright, J. (2016). Impact of colonialism on Māori and aboriginal healthcare access: A discussion paper. Contemporary Nurse, 52(4), 398–409. https://doi. org/10.1080/10376178.2016.1195238
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