. 2023 Dec;13(4):374-385.

doi: 10.1136/bmjspcare-2022-003525. Epub 2022 Mar 22.

Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis

Sophie Mulcahy Symmons^{1

2}, Karen Ryan^{3

4}, Samar M Aoun^{5

6}, Lucy E Selman⁷, Andrew Neil Davies^{8

9}, Nicola Cornally¹⁰, John Lombard¹¹, Regina McQuilllan^{3

12}, Suzanne Guerin¹³, Norma O'Leary^{14

15}, Michael Connolly^{2

14}, Mary Rabbitte¹⁶, David Mockler¹⁷, Geraldine Foley¹⁸

Affiliations

¹ Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Dublin, Ireland.
² School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland.
³ St Francis Hospice Dublin, Dublin, Ireland.
⁴ School of Medicine, University College Dublin, Dublin, Ireland.
⁵ Palliative Care Unit, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia.
⁶ Perron Institute for Neurological and Translational Science, Perth, Western Australia, Australia.
⁷ Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
⁸ Academic Department of Palliative Medicine, Our Lady's Hospice and Care Services, Dublin, Ireland.
⁹ School of Medicine, Trinity College Dublin, Dublin, Ireland.
¹⁰ School of Nursing and Midwifery, University College Cork, Cork, Ireland.
¹¹ School of Law, University of Limerick, Limerick, Ireland.
¹² Department of Palliative Care, Beaumont Hospital, Dublin, Ireland.
¹³ School of Psychology, University College Dublin, Dublin, Ireland.
¹⁴ Our Lady's Hospice and Care Services, Dublin, Ireland.
¹⁵ Department of Palliative Care, St James's Hospital, Dublin, Ireland.
¹⁶ All Ireland Institute of Hospice and Palliative Care, Dublin, Ireland.
¹⁷ John Stearne Medical Library, Trinity College Dublin, Dublin, Ireland.
¹⁸ Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Dublin, Ireland foleyg3@tcd.ie.

PMID: 35318213
PMCID: PMC10804031
DOI: 10.1136/bmjspcare-2022-003525

Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis

Sophie Mulcahy Symmons et al. BMJ Support Palliat Care. 2023 Dec.

. 2023 Dec;13(4):374-385.

doi: 10.1136/bmjspcare-2022-003525. Epub 2022 Mar 22.

Authors

Affiliations

¹ Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Dublin, Ireland.
² School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland.
³ St Francis Hospice Dublin, Dublin, Ireland.
⁴ School of Medicine, University College Dublin, Dublin, Ireland.
⁵ Palliative Care Unit, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia.
⁶ Perron Institute for Neurological and Translational Science, Perth, Western Australia, Australia.
⁷ Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
⁸ Academic Department of Palliative Medicine, Our Lady's Hospice and Care Services, Dublin, Ireland.
⁹ School of Medicine, Trinity College Dublin, Dublin, Ireland.
¹⁰ School of Nursing and Midwifery, University College Cork, Cork, Ireland.
¹¹ School of Law, University of Limerick, Limerick, Ireland.
¹² Department of Palliative Care, Beaumont Hospital, Dublin, Ireland.
¹³ School of Psychology, University College Dublin, Dublin, Ireland.
¹⁴ Our Lady's Hospice and Care Services, Dublin, Ireland.
¹⁵ Department of Palliative Care, St James's Hospital, Dublin, Ireland.
¹⁶ All Ireland Institute of Hospice and Palliative Care, Dublin, Ireland.
¹⁷ John Stearne Medical Library, Trinity College Dublin, Dublin, Ireland.
¹⁸ Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Dublin, Ireland foleyg3@tcd.ie.

PMID: 35318213
PMCID: PMC10804031
DOI: 10.1136/bmjspcare-2022-003525

Abstract

Background: Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood.

Objectives: To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care.

Methods: A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text.

Results: After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers.

Conclusions: Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.

Keywords: communication; family management; methodological research; supportive care; symptoms and symptom management; terminal care.

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Conflict of interest statement

Competing interests: None declared.

Figures

**Figure 1**
Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram.

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Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis

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Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis

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