Intensive Care Medicine

, Volume 42, Issue 6, pp 995–1002 | Cite as

CAESAR: a new tool to assess relatives’ experience of dying and death in the ICU

  • Nancy Kentish-Barnes
  • Valérie Seegers
  • Stéphane Legriel
  • Alain Cariou
  • Samir Jaber
  • Jean-Yves Lefrant
  • Bernard Floccard
  • Anne Renault
  • Isabelle Vinatier
  • Armelle Mathonnet
  • Danielle Reuter
  • Olivier Guisset
  • Christophe Cracco
  • Amélie Seguin
  • Jacques Durand-Gasselin
  • Béatrice Éon
  • Marina Thirion
  • Jean-Philippe Rigaud
  • Bénédicte Philippon-Jouve
  • Laurent Argaud
  • Renaud Chouquer
  • Mélanie Adda
  • Laurent Papazian
  • Céline Dedrie
  • Hugues Georges
  • Eddy Lebas
  • Nathalie Rolin
  • Pierre-Edouard Bollaert
  • Lucien Lecuyer
  • Gérald Viquesnel
  • Marc Léone
  • Ludivine Chalumeau-Lemoine
  • Zoé Cohen-Solal
  • Maité Garrouste-Orgeas
  • Fabienne Tamion
  • Bruno Falissard
  • Sylvie Chevret
  • Elie Azoulay
Original

Abstract

Purpose

To develop an instrument designed specifically to assess the experience of relatives of patients who die in the intensive care unit (ICU).

Methods

The instrument was developed using a mixed methodology and validated in a prospective multicentre study. Relatives of patients who died in 41 ICUs completed the questionnaire by telephone 21 days after the death, then completed the Hospital Anxiety and Depression Scale, Impact of Event Scale-Revised and Inventory of Complicated Grief after 3, 6, and 12 months.

Results

A total of 600 relatives were included, 475 in the main cohort and 125 in the reliability cohort. The 15-item questionnaire, named CAESAR, covered the patient’s preferences and values, interactions with/around the patient and family satisfaction. We defined three groups based on CAESAR score tertiles: lowest (≤59, n = 107, 25.9 %), middle (n = 185, 44.8 %) and highest (≥69, n = 121, 29.3 %). Factorial analysis showed a single dimension. Cronbach’s alpha in the main and reliability cohorts was 0.88 (0.85–0.90) and 0.85 (0.79–0.89), respectively. Compared to a high CAESAR score, a low CAESAR score was associated with greater risks of anxiety and depression at 3 months [1.29 (1.13–1.46), p = 0.001], post-traumatic stress-related symptoms at 3 [1.34 (1.17–1.53), p < 0.001], 6 [OR = 1.24 (1.06–1.44), p = 0.008] and 12 [OR = 1.26 (1.06–1.50), p = 0.01] months and complicated grief at 6 [OR = 1.40 (1.20–1.63), p < 0.001] and 12 months [OR = 1.27 (1.06–1.52), p = 0.01].

Conclusions

The CAESAR score 21 days after death in the ICU is strongly associated with post-ICU burden in the bereaved relatives. The CAESAR score should prove a useful primary endpoint in trials of interventions to improve relatives’ well-being.

Keywords

Relatives Intensive care unit Death Bereavement Complicated grief 

Notes

Acknowledgments

These contributors participated to the study: Michel Badet, Chambéry Hospital, Chambéry, France; Julie Carr, Saint Eloi University Hospital, Montpellier, France; Sophie Cayot-Constantin, Estaing University Hospital, Clermont Ferrand, France; Vincent Das, André Grégoire Hospital, Montreuil, France; Fabienne Fieux, Saint Louis University Hospital, Paris, France; Emmanuelle Hammad, Hôpital Nord University Hospital, Marseille, France; Mercé Jourdain, Roger Salengro University Hospital, Lille, France; Véronique Leray, La Croix Rousse Hospital, Lyon, France; Djamel Mokart, Institut Paoli Calmettes, Marseille, France; Sami Hreich Hôpital Nord University Hospital, Marseille, France; Michel Ramakers, Saint Lô Hospital, Saint Lô, France; Jean-Michel Robert, Edouard Herriot University Hospital, Lyon, France; Antoine Roquilly, Hôtel Dieu University Hospital, Nantes, France.

Supported by a Grant from the French Ministry of Health (PHRC 10 104). Medical Intensive Care Unit, Hôpital Saint-Louis, ECSTRA team, Biostatistics and clinical epidemiology, UMR 1153 (Center of Epidemiology and Biostatistics Sorbonne Paris Cité, CRESS), INSERM, Paris Diderot Sorbonne University, Paris, France.

Compliance with ethical standards

Conflicts of interest

None of the authors declare any conflict of interest in relation to this manuscript.

Supplementary material

134_2016_4260_MOESM1_ESM.docx (153 kb)
Supplementary material 1 (DOCX 153 kb)
134_2016_4260_MOESM2_ESM.docx (14 kb)
Supplementary material 2 (DOCX 14 kb)

References

  1. 1.
    Angus DC, Barnato AE, Linde-Zwirble WT et al (2004) Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med 32:638–643CrossRefPubMedGoogle Scholar
  2. 2.
    Azoulay E, Pochard F, Kentish-Barnes N et al (2005) Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med 171:987–994. doi:10.1164/rccm.200409-1295OC CrossRefPubMedGoogle Scholar
  3. 3.
    Cuthbertson BH, Hull A, Strachan M, Scott J (2003) Post-traumatic stress disorder after critical illness requiring general intensive care. Intensive Care Med 30:450–455. doi:10.1007/s00134-003-2004-8 CrossRefPubMedGoogle Scholar
  4. 4.
    Lautrette A, Darmon M, Megarbane B et al (2007) A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 356:469–478. doi:10.1056/NEJMoa063446 CrossRefPubMedGoogle Scholar
  5. 5.
    Siegel MD, Hayes E, Vanderwerker LC et al (2008) Psychiatric illness in the next of kin of patients who die in the intensive care unit. Crit Care Med 36:1722–1728. doi:10.1097/CCM.0b013e318174da72 CrossRefPubMedGoogle Scholar
  6. 6.
    Nelson JE, Azoulay E, Curtis JR et al (2012) Palliative care in the ICU. J Palliat Med 15:168–174. doi:10.1089/jpm.2011.9599 CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Clarke EB, Luce JM, Curtis JR et al (2004) A content analysis of forms, guidelines, and other materials documenting end-of-life care in intensive care units. J Crit Care 19:108–117CrossRefPubMedGoogle Scholar
  8. 8.
    Patrick DL, Engelberg RA, Curtis JR (2001) Evaluating the quality of dying and death. J Pain Symptom Manage 22(3):717–726CrossRefPubMedGoogle Scholar
  9. 9.
    Mularski RA, Heine CE, Osborne ML et al (2005) Quality of dying in the ICU: ratings by family members. Chest 128:280–287. doi:10.1378/chest.128.1.280 CrossRefPubMedGoogle Scholar
  10. 10.
    Curtis JR, Patrick DL, Engelberg RA et al (2002) A measure of the quality of dying and death. Initial validation using after-death interviews with family members. J Pain Symptom Manage 24:17–31CrossRefPubMedGoogle Scholar
  11. 11.
    Terwee CB, Bot SDM, de Boer MR et al (2006) Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol 60:34–42. doi:10.1016/j.jclinepi.2006.03.012 CrossRefPubMedGoogle Scholar
  12. 12.
    Falissard B (2008) Mesurer la subjectivité en santé. Elsevier Masson, Issy-les-MoulineauxGoogle Scholar
  13. 13.
    Kentish-Barnes N, Chaize M, Seegers V et al (2015) Complicated grief after death of a relative in the intensive care unit. Eur Respir J 45:1341–1352. doi:10.1183/09031936.00160014 CrossRefPubMedGoogle Scholar
  14. 14.
    Lance CE (2006) The sources of four commonly reported cutoff criteria: what did they really say? Organ Res Methods. doi:10.1177/1094428105284919 Google Scholar
  15. 15.
    Cattell RB (1966) The scree test for the number of factors. Multivar Behav Res 1:245–276CrossRefGoogle Scholar
  16. 16.
    Guttman L (1954) Some necessary conditions for common-factor analysis. Psychometrika 19:149–161CrossRefGoogle Scholar
  17. 17.
    Cronbach LJ, Warrington WG (1951) Time-limit tests: estimating their reliability and degree of speeding. Psychometrika 16:167–188CrossRefPubMedGoogle Scholar
  18. 18.
    Nunnally JC, Bernstein IH, Berge J (1967) Psychometric theory. McGraw-Hill, New YorkGoogle Scholar
  19. 19.
    Falissard B (2012) Psy: various procedures used in psychometry. R package version 1.1. http://CRAN.R-project.org/package=psy. Accessed 1 Jan 2015
  20. 20.
    Curtis JR (2015) Palliative care in critical illness: challenges for research and practice. Palliat Med 29:291–292. doi:10.1177/0269216315573901 CrossRefPubMedGoogle Scholar
  21. 21.
    Long AC, Curtis JR (2014) Quality of dying in the ICU: understanding ways to make it better. Intensive Care Med 40:1793. doi:10.1007/s00134-014-3512-4 CrossRefPubMedGoogle Scholar
  22. 22.
    Aslakson RA, Curtis JR, Nelson JE (2014) The changing role of palliative care in the ICU. Crit Care Med 42:2418–2428. doi:10.1097/CCM.0000000000000573 CrossRefPubMedPubMedCentralGoogle Scholar
  23. 23.
    Curtis JR, Downey L, Engelberg RA (2013) The quality of dying and death: is it ready for use as an outcome measure? Chest 143:289–291. doi:10.1378/chest.12-1941 CrossRefPubMedPubMedCentralGoogle Scholar
  24. 24.
    Glavan BJ, Engelberg RA, Downey L, Curtis JR (2008) Using the medical record to evaluate the quality of end-of-life care in the intensive care unit. Crit Care Med 36:1138–1146. doi:10.1097/CCM.0b013e318168f301 CrossRefPubMedPubMedCentralGoogle Scholar
  25. 25.
    Nelson JE, Mulkerin CM, Adams LL, Pronovost PJ (2006) Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback. Qual Saf Health Care 15:264–271. doi:10.1136/qshc.2005.017707 CrossRefPubMedPubMedCentralGoogle Scholar
  26. 26.
    Levy CR, Ely EW, Payne K et al (2005) Quality of dying and death in two medical ICUs: perceptions of family and clinicians. Chest 127:1775–1783. doi:10.1378/chest.127.5.1775 CrossRefPubMedGoogle Scholar
  27. 27.
    Kentish-Barnes N, McAdam JL, Kouki S et al (2015) Research participation for bereaved family members: experience and insights from a qualitative study. Crit Care Med. doi:10.1097/CCM.0000000000001092 PubMedGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg and ESICM 2016

Authors and Affiliations

  • Nancy Kentish-Barnes
    • 1
  • Valérie Seegers
    • 2
    • 3
  • Stéphane Legriel
    • 4
  • Alain Cariou
    • 5
    • 6
  • Samir Jaber
    • 7
    • 8
  • Jean-Yves Lefrant
    • 9
    • 10
  • Bernard Floccard
    • 11
  • Anne Renault
    • 12
  • Isabelle Vinatier
    • 13
  • Armelle Mathonnet
    • 14
  • Danielle Reuter
    • 1
  • Olivier Guisset
    • 15
  • Christophe Cracco
    • 16
  • Amélie Seguin
    • 17
  • Jacques Durand-Gasselin
    • 18
  • Béatrice Éon
    • 19
  • Marina Thirion
    • 20
  • Jean-Philippe Rigaud
    • 21
  • Bénédicte Philippon-Jouve
    • 22
  • Laurent Argaud
    • 11
    • 23
  • Renaud Chouquer
    • 24
  • Mélanie Adda
    • 25
  • Laurent Papazian
    • 25
    • 33
  • Céline Dedrie
    • 26
  • Hugues Georges
    • 27
  • Eddy Lebas
    • 28
  • Nathalie Rolin
    • 29
  • Pierre-Edouard Bollaert
    • 30
    • 31
  • Lucien Lecuyer
    • 32
  • Gérald Viquesnel
    • 17
  • Marc Léone
    • 25
    • 33
  • Ludivine Chalumeau-Lemoine
    • 34
  • Zoé Cohen-Solal
    • 1
  • Maité Garrouste-Orgeas
    • 35
  • Fabienne Tamion
    • 36
  • Bruno Falissard
    • 2
  • Sylvie Chevret
    • 37
    • 38
  • Elie Azoulay
    • 1
    • 37
  1. 1.Assistance Publique-Hôpitaux de ParisFamiréa Research Group, Saint-Louis University HospitalParisFrance
  2. 2.Paris-Sud Innovation Group in Mental Health, UMR 669, INSERMParis-Sud UniversityParisFrance
  3. 3.Data Management Research Department DRCI, Angers Hospital and SFR ICATUniversity of AngersAngersFrance
  4. 4.Versailles HospitalVersaillesFrance
  5. 5.Assistance Publique-Hôpitaux de ParisCochin University HospitalParisFrance
  6. 6.Paris Descartes UniversityParisFrance
  7. 7.Saint Eloi University HospitalMontpellierFrance
  8. 8.Montpellier 1 UniversityMontpellierFrance
  9. 9.Carémeau University HospitalNîmesFrance
  10. 10.Nîmes UniversityNîmesFrance
  11. 11.Hospices Civils de LyonEdouard Herriot University HospitalLyonFrance
  12. 12.Cavale Blanche University HospitalBrestFrance
  13. 13.Les Oudairies HospitalLa Roche Sur YonFrance
  14. 14.Hospital de la SourceOrléansFrance
  15. 15.Saint André University HospitalBordeauxFrance
  16. 16.Angoulême HospitalAngoulêmeFrance
  17. 17.Caen University HospitalCaenFrance
  18. 18.Sainte Musse HospitalToulonFrance
  19. 19.La Timone University HospitalMarseilleFrance
  20. 20.Victor Dupouy HospitalArgenteuilFrance
  21. 21.Dieppe HospitalDieppeFrance
  22. 22.Roanne HospitalRoanneFrance
  23. 23.Lyon Est UniversityLyonFrance
  24. 24.Annecy HospitalAnnecyFrance
  25. 25.Hôpital Nord University HospitalMarseilleFrance
  26. 26.Roubaix HospitalRoubaixFrance
  27. 27.Chatilliez HospitalTourcoingFrance
  28. 28.Bretagne Atlantique HospitalVannesFrance
  29. 29.Marc Jacquet HospitalMelunFrance
  30. 30.Nancy University HospitalNancyFrance
  31. 31.Lorraine UniversityNancyFrance
  32. 32.Sud Francilien HospitalEvryFrance
  33. 33.Aix-Marseille UniversityMarseilleFrance
  34. 34.Gustave Roussy InstitutVillejuifFrance
  35. 35.Saint Joseph HospitalParisFrance
  36. 36.Rouen University HospitalRouenFrance
  37. 37.Biostatistics and Clinical Epidemiology research team, U1153, INSERMParis Diderot Sorbonne UniversityParisFrance
  38. 38.Assistance Publique-Hôpitaux de ParisHôpital Saint-Louis, Service de Biostatistique et Information MédicaleParisFrance

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