Family Carers’ Experiences of Goals of Care Conversations in Acute Hospital Settings

Author:

Vivekananda Kitty1ORCID,Jayawardene Jayamini S.1,O’Connor Moira2,Watts Kaaren J.2,Leonard Anton D.3,Keesing Sharon4,Halkett Georgia5,Shaw Josephine6,Colgan Valerie7,Yuen Kevin8,Jolly Renate9,Towler Simon C.101112,Chauhan Anupam13,Nicoletti Margherita14,Johnson Claire E.151617

Affiliation:

1. School of Educational Psychology and Counselling, Faculty of Education, Monash University, Melbourne, VIC, Australia

2. WA Cancer Prevention Research Unit, School of Population Health, Faculty of Health Sciences, Curtin University, Perth, WA, Australia

3. Critical Care and Intensive Care, Royal Perth Bentley Group, East Metropolitan Health Service, Perth, WA, Australia

4. School of Occupational Therapy, Speech Pathology and Social Work, Curtin University, Perth, WA, Australia

5. Curtin School of Nursing, Faculty of Health Sciences, Curtin University, Perth, WA, Australia

6. Cancer Prevention Research Unit, School of Psychology, Curtin University, Perth, WA, Australia

7. WA Cancer and Palliative Care Network, WA Department of Health, Perth, WA, Australia

8. Palliative Care Department, Royal Perth Bentley Group, East Metropolitan Health Service, Perth, WA, Australia

9. Respiratory Medicine, Royal Perth Bentley Group, East Metropolitan Health Service, Perth, WA, Australia

10. Staff Specialist, Intensive Care Unit, Fiona Stanley Hospital, South Metropolitan Health Service, Perth, WA, Australia

11. Acting State Medical Director, DonateLife, WA, MHPHDS Division, North Metropolitan Health Service, Perth, WA, Australia

12. Clinical Lead, End-of-Life Care, WA Department of Health, Perth, WA, Australia

13. Department of Intensive Care Medicine, Rockingham Hospital, South Metropolitan Health Service, Perth, WA, Australia

14. Palliative Care, Rockingham Hospital, South Metropolitan Health Service, Perth, WA, Australia

15. Monash Nursing and Midwifery, Monash University, Melbourne, Australia

16. Eastern Health, Melbourne, VIC, Australia

17. Australian Health Services Research Institute, University of Wollongong, Wollongong, Australia

Abstract

End-of-life Goals of Care (GoC) discussions aim to support care that is consistent with patients’ preferences and values. This study uses an exploratory qualitative design drawing upon a social constructivist epistemology to examine family carers’ perspectives on GoC within acute Australian hospital settings. Twenty-five family carers of aging inpatients were recruited from six Australian hospitals to participate in recorded, semi-structured interviews. Data were transcribed and analyzed using reflexive thematic analysis. Three main themes were developed. Theme 1 explored carers’ experiences of GoC discussions—identifying varying levels of preparedness and carers' hopes for open, two-way discussions initiated by empathic Health Care Professionals (HCPs). Theme 2 examined carers’ unmet needs for time, space, consistency, and support to make careful decisions. Theme 3 identified carers advocating for patients' needs when they could not do it themselves. Preparing carers and normalizing GoC discussions relating to end-of-life care maximizes benefits for patients, carers, and HCPs involved.

Funder

Cancer and Palliative Care Network, West Australian Health Department

Publisher

SAGE Publications

Subject

Geriatrics and Gerontology,Gerontology

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