Sepsis survivorship: how can we promote a culture of resilience?

Severe sepsis impacts the lives of millions of patients each year (1). Advances in care delivery have led to a growing population of severe sepsis survivors (2, 3). Many of these survivors will suffer from postintensive care syndrome, defined as new or worsening impairments in cognition, mental health, and physical health (4–6), and reduced health-related quality of life (7). Although our understanding of the challenges faced by survivors continues to evolve, the stories of the lives of survivors of sepsis lay largely untold. Practitioners across the continuum of care, as a result, have little empirical evidence to guide survivors and their loved ones about what to expect as they recover. To meet this unmet need, and to inform efforts to improve postintensive care follow-up in severe sepsis survivors, in this issue of Critical Care Medicine, Gallop et al (8) conducted a multicenter, qualitative study of survivors and their caregivers. In short, they sought to give survivors the opportunity to share their story. Using semistructured interviews, the authors interviewed 22 survivors and 17 caregivers following an ICU admission for severe sepsis at two large centers, one in the United States and one in the United Kingdom. To capture the full spectrum of experience, participants varied in age (25– 79 yr) and in preillness health status. Survivors, interviewed approximately 7 months postdischarge in-person or via the telephone, experienced a lengthy ICU and hospital stay, and the majority required postacute care at hospital discharge. Consistent with the evidence to date, survivors experienced reduced quality of life and many demonstrated symptoms of anxiety and depression. After 39 participants were interviewed, thematic saturation was achieved. The authors identified five themes: 1) (lack of) awareness and knowledge of severe sepsis, 2) experience of the hospitalization, 3) long-term impact of severe sepsis, 4) burden on caregivers, and 5) (lack of) support after severe sepsis. To supplement the thematic presentation, the authors reproduced a number of select statements by interviewees that contextualize our understanding of survivors’ reduced long-term quality of life. The statements were powerful and poignant in their ability to detail the survivors’ hospital experience as well as the loss, frustration, and sadness felt in the days after discharge as survivors struggled to cope with the experience and frequent loss of independence. The caregivers’ statements detailed a story of sacrifice that appeared to exact its own psychological and financial toll (9). The study extends our understanding of what survivors of critical illness experience and what they need to accelerate their recovery. In prior work by Cox et al (10), acute respiratory distress syndrome (ARDS) survivors detailed “pervasive memories” of their ICU experience, the enduring impact of their new disability, how their experience redefined their sense of self and strained prior relationships, and the ability (or lack thereof) to cope with life after critical illness. As the most common predisposing condition for ARDS is sepsis, in some aspects, the present study serves as a confirmatory one. Although the needs of critically ill survivors change over time, as demonstrated in the work by Lee et al (11) in ARDS survivors, informational needs are paramount at each stage of recovery. As survivors prepare to transition home, intense planning is required to facilitate an enduring recovery and to prevent setbacks, an important threat and validated fear given emerging evidence that sepsis survivors frequently require rehospitalization (12, 13). The present study leaves several important questions unanswered. First, although thematic saturation was achieved, important subthemes would likely emerge with a larger sample size. Second, the study design focused on severe sepsis survivors cared for in an ICU. As many severe sepsis survivors are cared for on the wards, further investigation is necessary to compare and contrast the experiences of this group of survivors. Third, to complement the present study that relied on *See also p. 296.