What Matters to Patients and Their Families During and After Critical Illness: A Qualitative Study

Abstract

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.

Patient perspectives on states worse than death: A qualitative study with implications for patient-centered outcomes and values elicitation

“…This study builds on prior work on states worse than death 15,17 by expanding the range of states that seriously ill patients identify as equal to or worse than death, including the novel identification of social impairments as salient considerations. Further, this work reveals that regardless of whether a health state is physical, cognitive, or social in nature, the reasons it qualifies as states worse than death are most commonly social in nature.…”

Long-term (180-Day) Outcomes in Critically Ill Patients With COVID-19 in the REMAP-CAP Randomized Clinical Trial

“…Longer-term survival free of major disability with an acceptable HRQoL may be more important to patients than short-term survival. 1,2 The World Health Organization and others have called for additional research on the effect of initial therapeutic interventions on longerterm outcomes. 3 The Randomized Embedded Multifactorial Adaptive Platform for Community Acquired Pneumonia (REMAP-CAP) trial is an ongoing international, multicenter, randomized platform trial evaluating multiple treatments for patients with severe pneumonia in both pandemic and nonpandemic settings (NCT02735707) (Supplement 1).…”

Systematic Review of the “Pragmatism” of Pragmatic Critical Care Trials

“…Although this may be necessary in some cases, the implications of single-center designs on pragmatism should be clearly acknowledged by the study authors. The domain “primary outcome,” scored by the extent to which the outcome selected was relevant to participants, also required discussion in our review, partly because much is still unknown about how patients value particular outcomes ( 22 ). We categorized 32% of study primary outcomes (from 18 studies) as explanatory (score of < 3), consistent with other reports that remarkably few critical care RCTs select patient-important outcomes as primary outcomes ( 23 ).…”