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Decision-making in palliative care: patient and family caregiver concordance and discordance—systematic review and narrative synthesis
  1. Sophie Mulcahy Symmons1,2,
  2. Karen Ryan3,4,
  3. Samar M Aoun5,6,
  4. Lucy E Selman7,
  5. Andrew Neil Davies8,9,
  6. Nicola Cornally10,
  7. John Lombard11,
  8. Regina McQuilllan3,12,
  9. Suzanne Guerin13,
  10. Norma O'Leary14,15,
  11. Michael Connolly2,14,
  12. Mary Rabbitte16,
  13. David Mockler17 and
  14. Geraldine Foley1
  1. 1Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Dublin, Ireland
  2. 2School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland
  3. 3St Francis Hospice Dublin, Dublin, Ireland
  4. 4School of Medicine, University College Dublin, Dublin, Ireland
  5. 5Palliative Care Unit, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia
  6. 6Perron Institute for Neurological and Translational Science, Perth, Western Australia, Australia
  7. 7Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK
  8. 8Academic Department of Palliative Medicine, Our Lady’s Hospice and Care Services, Dublin, Ireland
  9. 9School of Medicine, Trinity College Dublin, Dublin, Ireland
  10. 10School of Nursing and Midwifery, University College Cork, Cork, Ireland
  11. 11School of Law, University of Limerick, Limerick, Ireland
  12. 12Department of Palliative Care, Beaumont Hospital, Dublin, Ireland
  13. 13School of Psychology, University College Dublin, Dublin, Ireland
  14. 14Our Lady’s Hospice and Care Services, Dublin, Ireland
  15. 15Department of Palliative Care, St James's Hospital, Dublin, Ireland
  16. 16All Ireland Institute of Hospice and Palliative Care, Dublin, Ireland
  17. 17John Stearne Medical Library, Trinity College Dublin, Dublin, Ireland
  1. Correspondence to Dr Geraldine Foley, Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Dublin, Ireland; foleyg3{at}tcd.ie

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.

  • methodological research
  • supportive care
  • terminal care
  • symptoms and symptom management
  • communication
  • 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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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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Footnotes

  • Twitter @suzie_guerin, @foleyg31

  • 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.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.