What Matters to Patients and Their Families During and After Critical Illness

A Qualitative Study

Catherine L. Auriemma, MD; Michael O. Harhay, PhD; Kimberley J. Haines, PhD, BHSc; Frances K. Barg, PhD, MEd; Scott D. Halpern, MD, PhD; Sarah M. Lyon, MD, MSCE


Am J Crit Care. 2021;30(1):11-20. 

In This Article

Abstract and Introduction


Background: Despite increased emphasis on providing higher-quality patient- and family-centered care in the intensive care unit (ICU), there are no widely accepted definitions of such care in the ICU.

Objectives: To determine (1) aspects of care that patients and families valued during their ICU encounter, (2) outcomes that patients and families prioritized after hospital discharge, and (3) outcomes perceived as equivalent to or worse than death.

Methods: Semistructured interviews (n = 49) of former patients of an urban, academic medical ICU and their family members. Two investigators reviewed all transcripts line by line to identify key concepts. Codes were created and defined in a codebook with decision rules for their application and were analyzed using qualitative content analysis.

Results: Salient themes were identified and grouped into 2 major categories: (1) processes of care within the ICU— communication, patient comfort, and a sense that the medical team was "doing everything" (ie, providing exhaustive medical care) and (2) patient and surrogate outcomes after the ICU—survival, quality of life, physical function, and cognitive function. Several outcomes were deemed worse than death: severe cognitive/physical disability, dependence on medical machinery/equipment, and severe/constant pain.

Conclusion: Although survival was important, most participants qualified this preference. Simple measures of mortality rates may not represent patient- or family-centered outcomes in evaluations of ICU-based interventions, and new measures that incorporate functional outcomes and patients' and family members' views of life quality are necessary to promote patient-centered, evidence-based care.


Admission to an intensive care unit (ICU) portends high risks for death, reduced physical and cognitive functioning among survivors, and substantial burdens for family members, including increased rates of depression, posttraumatic stress disorder, and complicated grief.[1] As the population of ICU survivors has increased, research has shifted to understanding and improving outcomes of survivors and, in particular, on providing high-quality patient- and family-centered care (PFCC).[2–7] Such care is a target for reimbursement through value-based purchasing programs, forms a basis of the National Academy of Medicine's definition of health care quality, and is prioritized in research funded by the Patient-Centered Outcomes Research Institute.[8–10]

However, there is no agreed-upon definition for PFCC in the ICU, and national, patient-reported quality assessments on hospital care do not specifically ask about ICU experiences.[11] As a result, most trials of ICU-based interventions are designed to detect differences in mortality rates, number of ventilator-free days, infection rates, and length of stay (LOS).[12] These end points, in fact, may not map with patients' and families' values.[13,14] Prior efforts to define better outcomes in ICU research have been guided by practitioners and researchers. More recent work has given a voice to patient stakeholders,[15–17] including the use of qualitative approaches to study patients' experiences in the ICU, perspectives on ICU-based palliative care, and services after ICU discharge.[18–25] However, perspectives of family caregivers, particularly those of patients who died in the hospital, have rarely been explored.

The central aim of this study was to explore experiences of patients who had been in the ICU and of family caregivers of patients who survived and of those who died. The purpose was to fill existing gaps in the evidence base by identifying (1) ICU processes of care that patients and families valued during their ICU encounter, (2) outcomes that patients and families prioritized after discharge, and (3) participants' perceptions of outcomes that may be equivalent to or worse than death. We then considered how perspectives map with recent recommendations from Needham et al[26] for a core set of post-ICU discharge outcomes, including survival, physical function, cognition, mental health, health-related quality of life, and pain.