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Cited by 50Palliative Care and End-of-Life IssuesFamily and Patient Care in Intensive Care UnitsEthics in medical practice

Patient and Family Engagement During Treatment Decisions in an ICU: A Discourse Analysis of the Electronic Health Record*

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Kruser, Jacqueline M., Benjamin, Brian T., Gordon, Elisa J., Michelson, Kelly N., Wunderink, Richard G., Holl, Jane L., Schwarze, Margaret L.·2019·Critical Care Medicine
DOI 10.1097/ccm.0000000000003711PMC PMC6522290
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Abstract

OBJECTIVES: Shared decision-making is recommended for critically ill adults who face major, preference-sensitive treatment decisions. Yet, little is known about when and how patients and families are engaged in treatment decision-making over the longitudinal course of a critical illness. We sought to characterize patterns of treatment decision-making by evaluating clinician discourse in the electronic health record of critically ill adults who develop chronic critical illness or die in an ICU. DESIGN, SETTING, AND PATIENTS: We conducted qualitative content analysis of the electronic health record of 52 adult patients, admitted to a medical ICU in a tertiary medical center from January 1, 2016, to December 31, 2016. We included patients who met a consensus definition of chronic critical illness (26 patients) and a matched sample who died or transitioned to hospice care in the ICU before developing chronic critical illness (26 patients). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Characterization of clinician decision-making discourse documented during the course of an ICU stay. Clinician decision-making discourse in the electronic health record followed a single, consistent pattern across both groups. Initial decisions about admission to the ICU focused on specific interventions that can only be provided in an ICU environment (intervention-focused decisions). Following admission, the documented rationale for additional treatments was guided by physiologic abnormalities (physiology-centered decisions). Clinician discourse transitioned to documented engagement of patients and families in decision-making when treatments failed to achieve specified physiologic goals. The phrase "goals of care" is common in the electronic health record and is used to indicate poor prognosis, to describe conflict with families, and to provide rationale for treatment limitations. CONCLUSIONS: Clinician discourse in the electronic health record reveals that patient physiology strongly guides treatment decision-making throughout the longitudinal course of critical illness. Documentation of patient and family engagement in treatment decision-making is limited until available medical treatments fail to achieve physiologic goals.

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  • Timely and high-quality assessment of patients' goals of care remains a significant shortcoming in health systems.

    “However, timely and high-quality assessment of patients’ goals of care remains a significant shortcoming in health systems.9–11”

    From Assessment of a Zero-Shot Large Language Model in Measuring Documented Goals-of-Care Discussions (2026) · cites this paper as [11]

    The Results (Specific Use of the Phrase “Goals of Care”; page unavailable) say physicians typically used the phrase after physiologic goals had failed and rarely documented specific patient or family goals or values. The Discussion says waiting until then to engage patients and families may be too late. These findings support a shortcoming in timely, substantive engagement in the studied ICU, but do not establish the quality of goals-of-care assessment across health systems. (LLM, conf=0.86)

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Research works printed but not linked: 11

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Authors
Kruser, J. M., Benjamin, B. T., Gordon, E. J., Michelson, K. N., Wunderink, R. G., Holl, J. L., & Schwarze, M. L.
Affiliations
  • Northwestern University (US)
  • University of Wisconsin–Madison (US)
ORCID
Venue
Critical Care Medicine
Publisher
Ovid Technologies (Wolters Kluwer Health)
Published
2019-06
Volume
47
Issue
6
Pages
784-791
ISSN
0090-3493 (ISSN-L)
DOI
10.1097/ccm.0000000000003711
PMC
PMC6522290
OpenAlex
W2923848390
Cited by
50
References
44
Citations by year
2026: 3 · 2025: 8 · 2024: 7 · 2023: 10 · 2022: 6 · 2021: 11 · 2020: 2 · 2019: 3
FWCI
5.07
Type
journal article
Language
en
Open access
Locations
  • Critical Care Medicine (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Institutes of Health (UL1TR001422)
  • Agency for Healthcare Research and Quality (T32HS000078)
  • National Heart, Lung, and Blood Institute (T32HL076139)
  • National Institute of Allergy and Infectious Diseases (U19AI135964)
  • National Institute of Diabetes and Digestive and Kidney Diseases (R01DK104876, R01DK111966)
  • National Center for Advancing Translational Sciences
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Health Professions › Radiological and Ultrasound Technology › Family and Patient Care in Intensive Care Units
  • Health Sciences › Health Professions › General Health Professions › Ethics in medical practice
Keywords
shared decision-making, patient engagement, family involvement, treatment decision-making, chronic critical illness, intensive care unit, electronic health records, goals of care, end-of-life care
MeSH terms
Decision Making, Shared, Aged, Aged, 80 and over, Chronic Disease, Communication, Female, Humans, Intensive Care Units, Life Support Care, Male, Middle Aged, Patient Care Planning, Physician-Patient Relations, Professional-Family Relations, Critical Illness, Qualitative Research, Electronic Health Records, Organ Dysfunction Scores

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