Bereaved Carers Need Support at Home in the Last 90 Days of Life: A Cross-Sectional Survey With Subgroup Analysis

Abstract

This study investigates bereaved carers’ experiences with end-of-life care and the factors associated with increased emergency department presentation, hospital admission and rates of hospital death in the last 90 days of life. Bereaved carers completed a modified Views of Informal Carers – Evaluation of Services – Short Form, and their responses were linked to the medical records of the decedents. The survey was sent to 1,546 people, and 246 surveys were returned (response rate 15.9%). 102 survey respondents reported their decedent had a known preference around place of death. 70/102 (68.6%) wished to die at home, but 187/246 (76.3%) died in hospital. Nevertheless, 200/243 (82.3%) of carers felt that the person died in the right place. Frequent attendance at emergency department was associated with bereaved carers feeling unsupported at home (χ² = 8.74, p < 0.05), and with higher rates of hospital death (χ² = 12.44, p < 0.05). Adequate help and support for carers at home is essential to reduce frequent emergency department attendance in the final months of life.

Keywords

death emergency department end of life bereaved family carers palliative care

Get full access to this article

View all access options for this article.

References

AIHW . (2024). National palliative care measures. https://www.aihw.gov.au/reports/palliative-care-services/national-palliative-care-measures

Australian Bureau of Statistics . (2021). Australian bureau of statistics. Classifying place of death in Australian mortality statistics. https://www.abs.gov.au/statistics/research/classifying-place-death-australian-mortality-statistics

Australian Institude of Health and Welfare . (2022). The last year of life: Patterns in health service use and expenditure. (Cat. no: HWE 85). https://www.aihw.gov.au/getmedia/e44d4cea-7cbb-4ab3-b32a-4f392d6ea630/the-last-year-of-life-patterns-in-health-service-use-and-expenditure.pdf?v=20220712090457&inline=true

Australian Institute of Health and Welfare . (2023). Palliative care services in Australia [Internet]. https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia

Bertaud

Wilkinson

Kelley

(2025). The heart of palliative care is relational: A scoping review of the ethics of care in palliative medicine. BMC Palliative Care, 24(1), 150. https://doi.org/10.1186/s12904-025-01784-5

Bone

A. E.

Evans

C. J.

Etkind

S. N.

Sleeman

K. E.

Gomes

Aldridge

Keep

Verne

Higginson

I. J.

(2019). Factors associated with older people’s emergency department attendance towards the end of life: A systematic review. The European Journal of Public Health, 29(1), 67-74. https://doi.org/10.1093/eurpub/cky241

Bostwick

Wolf

Samsa

Bull

Taylor

D. H.

Jr. Johnson

K. S.

Kamal

A. H.

(2017). Comparing the palliative care needs of those with cancer to those with common non-cancer serious illness. Journal of Pain and Symptom Management, 53(6), 1079–1084.e1071. https://doi.org/10.1016/j.jpainsymman.2017.02.014

Caswell

Hardy

Ewing

Kennedy

Seymour

(2019). Supporting family carers in home-based end-of-life care: Using participatory action research to develop a training programme for support workers and volunteers. BMJ Supportive & Palliative Care, 9(1), Article e4. https://doi.org/10.1136/bmjspcare-2017-001317

Chan

W. C. H.

(2021). Future provision of home end-of-life care: Family carers’ willingness for caregiving and needs for support. Palliative & Supportive Care, 19(5), 580–586. https://doi.org/10.1017/S1478951520001273

10.

Clayton

J. M.

Butow

P. N.

Arnold

R. M.

Tattersall

M. H.

(2005). Discussing end-of-life issues with terminally ill cancer patients and their carers: A qualitative study. Support Care Cancer, 13(8), 589–599. https://doi.org/10.1007/s00520-004-0759-2

11.

Collins

McLachlan

S. A.

Philip

(2018). How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer. Palliative Medicine, 32(4), 861–869. https://doi.org/10.1177/0269216317746584

12.

Duckett

Swerissen

Stobart

(2020). Rethinking aged care: Emphasising the rights of older Australians. https://grattan.edu.au/wp-content/uploads/2020/10/Rethinking-Aged-Care-Grattan-Report.pdf

13.

García-Sanjuán

Fernández-Alcántara

Clement-Carbonell

Campos-Calderón

C. P.

Orts-Beneito

Cabañero-Martínez

M. J.

(2021). Levels and determinants of place-of-death congruence in palliative patients: A systematic review. Frontiers in Psychology, 12, Article 807869. https://doi.org/10.3389/fpsyg.2021.807869

14.

Gomes

Calanzani

Gysels

Hall

Higginson

I. J.

(2013). Heterogeneity and changes in preferences for dying at home: A systematic review. BMC Palliative Care, 12(1), 7. https://doi.org/10.1186/1472-684x-12-7

15.

Green

Shaw

S. E.

Harris

(2019). ‘They shouldn’t be coming to the ED, should they?’ A qualitative study of why patients with palliative care needs present to the emergency department. BMJ Supportive & Palliative Care, 9(4), Article e29. https://doi.org/10.1136/bmjspcare-2015-000999

16.

Hales

Zimmermann

Rodin

(2008). The quality of dying and death. Archives of Internal Medicine, 168(9), 912–918. https://doi.org/10.1001/archinte.168.9.912

17.

Hernán

M. A.

John

Healy

(2019). A second chance to get causal inference right: A classification of data science tasks. Chance, 32(1), 42–49. https://doi.org/10.1080/09332480.2019.1579578

18.

Hunt

K. J.

Shlomo

Addington-Hall

(2014). End-of-life care and achieving preferences for place of death in England: Results of a population-based survey using the VOICES-SF questionnaire. Palliative Medicine, 28(5), 412–421. https://doi.org/10.1177/0269216313512012

19.

Hunt

Shlomo

Richardson

Addington-Hall

J. M.

(2011). VOICES redesign and testing to inform a national end of life care survey. https://eprints.soton.ac.uk/352525/1/VOICES%2520Final%2520Report%2520%2528after%2520peer%2520review%2529.pdf.

20.

Hunt

K. J.

Richardson

Darlington

A. E.

Addington-Hall

J. M.

(2019). Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England. BMJ Supportive & Palliative Care, 9(1), Article e5. https://doi.org/10.1136/bmjspcare-2016-001288

21.

Jeong

Barrett

Ohr

S. O.

Cleasby

Davey

David

(2021). Prevalence of advance care planning practices among people with chronic diseases in hospital and community settings: A retrospective medical record audit. BMC Health Services Research, 21(1), 303. https://doi.org/10.1186/s12913-021-06265-y

22.

Kenny

Street

D. J.

Hall

Agar

M. R.

Phillips

(2024). Community preferences for the care of older people at the end of life: How important is the disease context? Patient, 17(4), 407–419. https://doi.org/10.1007/s40271-024-00675-w

23.

Laycock

Walker

Harrison

Brands

(2011). Researching Indigenous health: A practical guide for researchers. https://www.lowitja.org.au/wp-content/uploads/2023/05/Researchers-Guide_0.pdf

24.

Makwana

Pring

Bowtell

Verne

(2020). Emergency admissions in the 3 months before death. https://www.gov.uk/government/publications/emergency-admissions-in-the-3-months-before-death/emergency-admissions-in-the-3-months-before-death

25.

Noble

King

Woolmore

Hughes

Winslow

Melvin

Brooks

Bravington

Ingleton

Bath

P. A.

(2015). Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK. European Journal of Cancer Care, 24(2), 253–266. https://doi.org/10.1111/ecc.12195

26.

Nysæter

T. M.

Olsson

Sandsdalen

Wilde-Larsson

Hov

Larsson

(2022). Preferences for home care to enable home death among adult patients with cancer in late palliative phase – A grounded theory study. BMC Palliative Care, 21(1), 49. https://doi.org/10.1186/s12904-022-00939-y

27.

O’Donnell

M. G.

Baker

Z. G.

(2023). “I Have Accepted My Father’s Death; I was not Sad but Relieved.” adaptive grief responses for bereaved dementia family caregivers: A scoping review. OMEGA - Journal of Death and Dying, 0(0), 1988. https://doi.org/10.1177/00302228231217334

28.

Office for National Standards . (2016). National bereavement survey (VOICES) QMI. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/methodologies/nationalbereavementsurveyvoicesqmi/pdf

29.

O’Sullivan

Alvariza

Öhlén

Ex Håkanson

C. L.

(2021). The influence of care place and diagnosis on care communication at the end of life: Bereaved family members’ perspective. Palliative & Supportive Care, 19(6), 664–671. https://doi.org/10.1017/S147895152100016X

30.

Pring

Westwood

Bowtell

Verne

(2024). 51 emergency hospital admissions near the end of life. BMJ Supportive & Palliative Care, 14(Suppl 1), A20–A21. https://doi.org/10.1136/spcare-2024-MCR.47

31.

Romero

M. M.

(2021). Meaning reconstruction in bereaved family caregivers of person’s with Alzheimer’s disease: A mixed-methods study. OMEGA - Journal of Death and Dying, 82(4), 548–569. https://doi.org/10.1177/0030222818821024

32.

Rosenwax

L. K.

McNamara

B. A.

Murray

McCabe

R. J.

Aoun

S. M.

Currow

D. C.

(2011). Hospital and emergency department use in the last year of life: A baseline for future modifications to end-of-life care. Medical Journal of Australia, 194(11), 570–573. https://doi.org/10.5694/mja11.10714

33.

Seow

Bainbridge

Brouwers

Pond

Cairney

(2017). Validation of a modified VOICES survey to measure end-of-life care quality: The caregiver voice survey. BMC Palliative Care, 16(1), 44. https://doi.org/10.1186/s12904-017-0227-7

34.

Swerissen

Ducket

(2014). Dying Well: Grattan Institute. https://grattan.edu.au/wp-content/uploads/2014/09/815-dying-well.pdf.

35.

Tey

M. Q.

Lee

G. L.

(2025). Understanding bereavement experiences and coping among bereaved family caregivers in Singapore: Positive meaning reconstruction in the dual process model. OMEGA - Journal of Death and Dying, 91(1), 263–280. https://doi.org/10.1177/00302228221133584

36.

Thiel

Sonola

Goodwin

Kodner

D. L.

(2013). Midhurst macmillan community specialist palliative care service delivering end-of-life care in the community. https://assets.kingsfund.org.uk/f/256914/x/af2dd8d0ac/midhust_macmillan_community_palliative_care_service_2013.pdf

37.

Wong

W. K. T.

Ussher

Perz

(2009). Strength through adversity: Bereaved cancer carers’ accounts of rewards and personal growth from caring. Palliative & Supportive Care, 7(2), 187–196. https://doi.org/10.1017/S1478951509000248

38.

World Health Assembly . (2014). Strengthening of palliative care as a component of comprehensive care throughout the life course. https://iris.who.int/handle/10665/162863

39.

World Health Organization . (2014). Global atlas of palliative care at the end of life. https://www.iccp-portal.org/sites/default/files/resources/Global_Atlas_of_Palliative_Care.pdf

40.

World Health Organization . (2018). Integrating palliative care and symptom relief into primary health care: A WHO guide for planners, implementers and managers. https://iris.who.int/bitstream/handle/10665/274559/9789241514477-eng.pdf

41.

Wright

S. T.

Breier

J. M.

Depner

R. M.

Grant

P. C.

Lodi-Smith

(2018). Wisdom at the end of life: Hospice patients’ reflections on the meaning of life and death. Counselling Psychology Quarterly, 31(2), 162–185. https://doi.org/10.1080/09515070.2016.1274253

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.60 MB

0.00 MB