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Defining Patient- and Family-Centered Care Outcomes in the ICU

Using semi-structured interviews with intensive care unit (ICU) survivors and their family members, investigators identified several ICU processes of care and outcomes after the ICU that were important to this population.

By Betty Tran, MD, MSc

Associate Professor of Medicine, Division of Pulmonary and Critical Care Medicine, Northwestern University Feinberg School of Medicine, Chicago

SYNOPSIS: Using semi-structured interviews with intensive care unit (ICU) survivors and their family members, investigators identified several ICU processes of care and outcomes after the ICU that were important to this population.

SOURCE: Auriemma CL, Harhay MO, Haines KJ, et al. What matters to patients and their families during and after critical illness: A qualitative study. Am J Crit Care 2021;30:11-20.

There is no agreed-upon definition of high-quality patient- and family-centered (PFCC) care in the intensive care unit (ICU). To fill this void, Auriemma et al aimed to determine: 1) the aspects of care that patients and families valued during their ICU time, 2) outcomes that they prioritized after discharge, and 3) the outcomes they viewed as equivalent to or worse than death.

Adult, English-speaking patients or patient caregivers with a medical ICU length of stay (LOS) of at least four days were approached for recruitment into the study, with interviews to begin after hospital discharge. Interviews were semi-structured, using a qualitative content-analysis approach whereby key concepts were identified and coded to identify themes and patterns.

Overall, 49 interviews were conducted (19 ICU survivors, 18 family caregivers of survivors, and 12 family caregivers of deceased patients) during a median of 18 days after hospital discharge (interquartile range [IQR] of 14-47 days for patients, 16-48 days for caregivers). Most patient participants were women (68%) with a median ICU LOS of 11 days (IQR, 7-13 days) and hospital LOS of 23 days (IQR, 15-29 days).

Regarding ICU processes of care, patients and their families prioritized communication with providers, patient comfort and avoidance of pain, and they frequently wanted to know that the medical team was providing exhaustive medical care (i.e., was “doing everything”). In terms of post-discharge outcomes, 25% cited survival as the most important ICU outcome, but most participants qualified this within a range of specific functional outcomes that mattered most to them. About 50% of participants mentioned either physical function (independence, not being a burden to others) or cognitive function (ability to communicate) as a part of meaningful survival.

When asked if there were post-ICU outcomes worse than death, nine participants answered no, but the majority listed various levels of dysfunction as bad or worse than death that included: inability to communicate, severe physical disability (especially lack of independence necessary to “maintaining dignity”), dependence on machines or medical equipment, and severe or constant pain.


This study extends prior knowledge on salient aspects of the patient and caregiver ICU experience by providing themes that may serve as important future PFCC outcome measures. Needham et al previously published a set of patient-centered outcomes for survivors of acute respiratory failure that included measurements in the areas of cognition, pain, survival, and physical function and symptoms.1 This study aligns with that work and also extends it by focusing on perspectives mainly from patients and their family caregivers and including feedback from a broader population of ICU survivors (i.e., not just those admitted with acute respiratory failure).

Limitations of this study to consider include the fact that it was conducted in a single medical ICU with high mortality rates and LOS, it was not culturally diverse (it included only English speakers), and it was done mostly within one month after hospital discharge and, therefore, was unable to capture whether perspectives of patients and/or caregivers changed over time.

Framing the question of whether there are post-ICU outcomes as bad or worse than death is a different approach to asking whether there are health outcomes that patients and caregivers would prefer to avoid when deciding whether to pursue aggressive ICU interventions.

Although more work is needed to determine whether these outcomes should be used in studies evaluating specific ICU interventions, this study supports the notion that outcomes such as mortality rate, number of ventilator-free days, and ICU length of stay, although easier to quantify and measure, are unlikely to provide a full view of patients’ and caregivers’ ICU experiences to promote PFCC goals.


  1. Needham DM, Sepulveda KA, Dinglas VD, et al. Core outcome measures for clinical research in acute respiratory failure survivors. An international modified Delphi consensus study. Am J Respir Crit Care Med 2017;196:1122-1130.