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.
- methodological research
- supportive care
- terminal care
- symptoms and symptom management
- family management
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information. Not applicable.
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Contributors GF conceived the work and design. SMS and DM formulated the search strategy which was approved by GF. SMS conducted the search and screened studies. GF assisted with screening. SMS extracted the data and both SMS and GF appraised the studies. SMS conducted the synthesis and GF contributed to the synthesis. GF wrote the manuscript with substantial contribution from SMS for methods and findings sections. KR, SMA, LES, AND, NC, JL, RM and SG commented on the design and/or interpretation of the data and made critical contributions to the manuscript. NO’L, MC and MR reviewed the drafts for intellectual content. All authors approved the final draft. GF is responsible for the overall content of the manuscript and acts as guarantor.
Funding This work was supported by an Irish Research Council New Foundations Award awarded to GF (Grant No: IRC/NewFoundations2020). Publication of the work is supported by a Trinity College Dublin MED Research Award awarded to GF.
Disclaimer The funder had no role in the work conducted.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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