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Palliative care phenotypes among critically ill patients and family members: intensive care unit prospective cohort study
  1. Christopher E Cox1,2,
  2. Maren K Olsen3,4,
  3. Alice Parish4,
  4. Jessie Gu1,
  5. Deepshikha Charan Ashana1,2,
  6. Elias H Pratt1,
  7. Krista Haines5,
  8. Jessica Ma6,
  9. David J Casarett6,
  10. Mashael S Al-Hegelan1,
  11. Colleen Naglee7,8,
  12. Jason N Katz9,
  13. Yasmin Ali O’Keefe8,
  14. Robert W Harrison9,
  15. Isaretta L Riley1,
  16. Santos Bermejo1,2,
  17. Katelyn Dempsey1,2,
  18. Shayna Wolery1,2,
  19. Jennie Jaggers1,2,
  20. Kimberly S Johnson10 and
  21. Sharron L Docherty11
  1. 1 Pulmonary and Critical Care Medicine, Duke University, Durham, North Carolina, USA
  2. 2 Program to Support People and Enhance Recovery (ProSPER), Duke University, Durham, NC, USA
  3. 3 Durham Center of Innovation to Accelerate Discovery and Practice Transformation, Durham Veterans Affairs Health Care System, Durham, NC, USA
  4. 4 Department of Biostatistics and Bioinformatics, Duke University, Durham, NC, USA
  5. 5 Department of Surgery, Division of Trauma and Critical Care and Acute Care Surgery, Duke University, Durham, NC, USA
  6. 6 Section of Palliative Care and Hospice Medicine, Duke University, Durham, NC, USA
  7. 7 Department of Anesthesiology, Duke University, Durham, North Carolina, USA
  8. 8 Department of Neurology, Division of Neurocritical Care, Durham, North Carolina, USA
  9. 9 Department of Medicine, Division of Cardiology, Duke University, Durham, NC, USA
  10. 10 Division of Geriatrics, Center for Study of Aging and Human Development, Duke University, Durham, NC, USA
  11. 11 Duke University School of Nursing, Durham, North Carolina, USA
  1. Correspondence to Dr Christopher E Cox, Pulmonary and Critical Care Medicine, Duke University, Durham, NC 27710, USA; christopher.cox{at}


Objective Because the heterogeneity of patients in intensive care units (ICUs) and family members represents a challenge to palliative care delivery, we aimed to determine if distinct phenotypes of palliative care needs exist.

Methods Prospective cohort study conducted among family members of adult patients undergoing mechanical ventilation in six medical and surgical ICUs. The primary outcome was palliative care need measured by the Needs at the End-of-Life Screening Tool (NEST, range from 0 (no need) to 130 (highest need)) completed 3 days after ICU admission. We also assessed quality of communication, clinician–family relationship and patient centredness of care. Latent class analysis of the NEST’s 13 items was used to identify groups with similar patterns of serious palliative care needs.

Results Among 257 family members, latent class analysis yielded a four-class model including complex communication needs (n=26, 10%; median NEST score 68.0), family spiritual and cultural needs (n=21, 8%; 40.0) and patient and family stress needs (n=43, 31%; 31.0), as well as a fourth group with fewer serious needs (n=167, 65%; 14.0). Interclass differences existed in quality of communication (median range 4.0–10.0, p<0.001), favourable clinician–family relationship (range 34.6%–98.2%, p<0.001) and both the patient centredness of care Eliciting Concerns (median range 4.0–5.0, p<0.001) and Decision-Making (median range 2.3–4.5, p<0.001) scales.

Conclusions Four novel phenotypes of palliative care need were identified among ICU family members with distinct differences in the severity of needs and perceived quality of the clinician–family interaction. Knowledge of need class may help to inform the development of more person-centred models of ICU-based palliative care.

  • communication
  • clinical decisions
  • family management

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  • X @christopherecox

  • Presented at Portions of this work describing total Needs at the End-of-Life Screening Tool scores were presented on 19 May 2021 at the American Thoracic Society International Conference (conducted virtually) as abstract 2021-S-11060-ATS.

  • Contributors Substantial contributions to conception or design of the work: CEC, MKO, SLD and KSJ; acquisition, analysis or interpretation of data, critical revision of the manuscript for important intellectual content, final approval of the manuscript, accountability for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved: all authors; drafting of the manuscript: CEC, MKO, AP, DCA, KH, DJC, ILR and SLD; statistical analysis: MKO, Paris and CEC; obtained funding and administrative, technical or material support: CEC, SLD and KSJ; supervision: CEC, SLD, KSJ and MKO; full access to all data in the study and overall responsibility for the integrity of the data and the accuracy of the data analysis: CEC; responsible for the overall content as the guarantor: CEC.

  • Funding This study was supported by R21 NR016743 (Cox and Docherty), U54 MD012530 (KSJ, CEC and SLD) and R01 AG058915 (Cox and Docherty).

  • 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.