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Giving a voice to patients at high risk of dying in the intensive care unit: a multiple source approach

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Abstract

Purpose

Data are scarce regarding the experience of critically ill patients at high risk of death. Identifying their concerns could allow clinicians to better meet their needs and align their end-of-life trajectory with their preferences and values. We aimed to identify concerns expressed by conscious patients at high risk of dying in the intensive care unit (ICU).

Methods

Multiple source multicentre study. Concerns expressed by patients were collected from five different sources (literature review, panel of 50 ICU experts, prospective study in 11 ICUs, in-depth interviews with 17 families and 15 patients). All qualitative data collected were analyzed using thematic content analysis.

Results

The five sources produced 1307 concerns that were divided into 7 domains and 41 sub-domains. After removing redundant items and duplicates, and combining and reformulating similar items, 28 concerns were extracted from the analysis of the data. To increase accuracy, they were merged and consolidated, and resulted in a final list of 15 concerns pertaining to seven domains: concerns about loved-ones; symptom management and care (including team competence, goals of care discussions); spiritual, religious, and existential preoccupations (including regrets, meaning, hope and trust); being oneself (including fear of isolation and of being a burden, absence of hope, and personhood); the need for comforting experiences and pleasure; dying and death (covering emotional and practical concerns); and after death preoccupations.

Conclusion

This list of 15 concerns may prove valuable for clinicians as a tool for improving communication and support to better meet the needs of patients at high risk of dying.

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Data availability

Data will be made available on request to the principal investigator, based on a legitimate request (research).

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Acknowledgements

This study was funded by a grant from the French Ministry of Health, Programme Hospitalier de Recherche Clinique-PHRC-IR (AP-HP 180687/ N° IDRCB: 2019-A02267-50). The sponsor was Assistance Publique-Hôpitaux de Paris (Clinical Research and Innovation Department). This study was approved by the Comité de Protection des Personnes Ile de France III, in January 2020 (Dossier n° 2019-A02267-50; Réf CPP: 3760-NI; Réf CNRIPH: 20.01.08.58958).

Funding

French Ministry of Health.

Author information

Authors and Affiliations

  1. Famiréa Research Group, Medical Intensive Care, AP-HP, Saint Louis Hospital, 1 Avenue Claude Vellefaux, 75010, Paris, France

    Nancy Kentish-Barnes, Anne-Laure Poujol, Emilie Banse, Virginie Souppart, Anne Renet, Frédéric Pochard & Elie Azoulay

  2. VCR-School of Psychologist Practitioners, Paris, France

    Anne-Laure Poujol & Victoire Deltour

  3. Department of Anesthesiology and Critical Care, Multidisciplinary Intensive Care Unit, AP-HP, La Pitié-Salpétrière Hospital, Paris, France

    Anne-Laure Poujol & Antoine Monsel

  4. Intensive Care Unit, Ramsay Générale de Santé, Jacques Cartier Private Hospital, Massy, France

    Cyril Goulenok

  5. Medical Intensive Care, Hôtel Dieu University Hospital, Nantes, France

    Charlotte Garret

  6. Medical Intensive Care, Cavale Blanche University Hospital, Brest, France

    Anne Renault

  7. Medical Intensive Care, AP-HP, Cochin Hospital, Paris, France

    Alain Cariou

  8. Intensive Care Unit, AP-HP, Raymond Poincaré Hospital, Garches, France

    Diane Friedman

  9. Intensive Care Unit, Ramsay Générale de Santé, Claude Galien Private Hospital, Quincy Sous Sénart, France

    Ludivine Chalumeau-Lemoine

  10. Medical Intensive Care, Saint André University Hospital, Bordeaux, France

    Olivier Guisset

  11. Medical Intensive Care, André Mignot Hospital, Le Chesnay, France

    Sybille Merceron

  12. UMR-S 959, Immunology-Immunopathology-Immunotherapy (I3), Institut National de La Santé Et de La Recherche Médicale (INSERM), Paris, France

    Antoine Monsel

  13. Biotherapy (CIC-BTi) and Inflammation-Immunopathology-Biotherapy Department (DHU i2B), Hôpital Pitié-Salpêtrière, AP-HP, Paris, France

    Antoine Monsel

  14. Medical and Surgical Intensive Care, La Rochelle Hospital, La Rochelle, France

    Olivier Lesieur

Authors
  1. Nancy Kentish-Barnes
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  2. Anne-Laure Poujol
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  3. Emilie Banse
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  4. Victoire Deltour
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  6. Charlotte Garret
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  7. Anne Renault
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  8. Virginie Souppart
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  9. Anne Renet
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  10. Alain Cariou
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  11. Diane Friedman
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  12. Ludivine Chalumeau-Lemoine
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  14. Sybille Merceron
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  15. Antoine Monsel
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  16. Olivier Lesieur
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  17. Frédéric Pochard
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  18. Elie Azoulay
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Contributions

NKB, ALP, and EA wrote the study protocol. NKB and ALP did the qualitative analysis. All co-authors approved the study protocol. NKB and ALP wrote the first draft of the report with input from EA and FP. EB, VD, CG, CG, AR, VS, AR, AC, DF, LCL, OG, SM, AM, and OL provided substantial contribution to the acquisition of data. All authors had full access to all the data in the study and had final responsibility for the decision to submit for publication.

Corresponding author

Correspondence to Nancy Kentish-Barnes.

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Conflicts of interest

NKB reports having received a fee for a lecture from GE Healthcare. EA reports receiving fees for lectures from Gilead, Pfizer, Baxter, GE Healthcare, and Alexion. His research group has been supported by Ablynx, Fisher & Payckle, Jazz Pharma, and MSD, outside the submitted work. AC reports receiving fees for lectures from Bard, outside the submitted work. DF reports receiving fees for lectures from Alexion, outside the submitted work. ALP, EB, VD, CG, CG, AR, VS, AR, LCL, OG, SM, AM, OL, and FP have no conflicts of interest to declare.

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Kentish-Barnes, N., Poujol, AL., Banse, E. et al. Giving a voice to patients at high risk of dying in the intensive care unit: a multiple source approach. Intensive Care Med 49, 808–819 (2023). https://doi.org/10.1007/s00134-023-07112-w

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