Abstract
Background
Patients dying of infection invariably die of sepsis. Sepsis has caused significant morbidity and mortality throughout human history, from the earliest descriptions of ‘hectic fever’ through to contemporary understandings of sepsis; characterised by life-threatening organ dysfunction caused by an extreme immune system response to infection. Sepsis continues to be a significant cause for hospital admission, a leading cause of hospital death and a major public health concern. The aetiology of sepsis involves the complex interplay between pathogen, host, and environment; expressed as a rather cryptic idiosyncratic disease. Diagnosis of this puzzling heterogenous syndrome is based on a preponderance of clinical evidence rather than a definitive biomarker or diagnostic test within a context of important sepsis mimics. The clinical course of sepsis commonly involves community onset, rapid deterioration, escalation of care often including intensive care, and significant risk of morbidity and death. Sepsis survivorship for many is marked by long-term sequelae and for some late death. Reduction of sepsis associated harm may be achieved through infectious disease prevention and the timely diagnosis and prompt treatment of severe infection and sepsis. Public sepsis awareness and knowledge are a crucial aspect of early recognition. Patient noticing, interpreting, and communicating bodily signs and symptoms to clinicians is a complex undertaking and influenced by contextual frames. Early recognition of sepsis is dependent on suspicion of infection and an attentive wariness that sepsis may complicate the illness course.
Study Aim
This study aimed to understand the clinical course and personal experience of sepsis in patients requiring intensive care at a large tertiary teaching and research hospital.
Methods
The study was conducted over a 12-month period and combined a clinical records review and semi-structed in-depth participant interviews to produce quantitative and qualitative data analysed using descriptive statistics and reflexive thematic analysis respectively. Researcher reflexivity was deliberately attended to throughout the research process to increase the trustworthiness of the findings. Data collection was proceeded by ethical approval from the University of Otago Human Ethics Committee, Māori consultation, and locality authorisation.
Findings
The clinical records review examined the clinical course of adult patients with sepsis requiring intensive care within the 12-month study period and included 73 patients; the population was skewed to older age and males, Māori, and those with socioeconomic vulnerability were slightly overrepresented. The study population had a substantial comorbid disease burden and experienced significant morbidity and mortality. ICU, hospital, and 12-month mortality were 33%, 40%, and 51% respectively. Seventeen adult patients hospitalised with sepsis participated in the qualitative study and recounted their experience of becoming unwell with severe infection, sepsis, and septic shock. Participants experienced consequential delays in seeking health care, these delays were of a complex aetiology and marked by unknowingness, uncertainty, and distress. The experience of unknowingness related to the lack of specific knowledge required to interpret the signs and symptoms of infection and sepsis and decide on a course of action. Uncertainty resulted from ideas about what it was to be a ‘good patient’ and ‘to cope’, difficulty delegating family and whānau responsibilities, and the consequences of a puzzling illness, often experienced in the context of confounding comorbidities. Participants experienced significant distress, captured as the dread of descent into illness and fear of hospitalisation. The transition to hospital was commonly dependent on another person as participants experienced reduced agency as their condition rapidly worsened. Participants experienced hospitalisation with sepsis as a distressing ordeal, dominated by fear, suffering, and persistent uncertainty.
Implications
The significant consequences of delayed health care seeking were demonstrated in the study population with community onset sepsis commonly associated with poor clinical condition at presentation, rapid escalation of care, and substantial risk of poor outcomes. For all participants sepsis and septic shock represented a threat to life, considerable uncertainty, and a difficult clinical course in which distress and suffering were ubiquitous. Sepsis is a medical emergency of significant incidence and associated with poor outcomes, very much worsened by late diagnosis, however, public sepsis awareness remains poor. Participants found navigating through the early course of sepsis very difficult, with health care seeking commonly dependent on the actions of others. The results from this study identified that patients frequently experienced hospitalisation as a distressing, lonely, and depersonalising ordeal, and reported fears about the future, persistent uncertainty, and symptoms of post-sepsis syndrome. Patient unknowingness, uncertainty, suffering, and prolonged deleterious effects associated with sepsis identified in this study provide a focus for future intervention.
Conclusions
The experience of unknowingness and uncertainty warrant considerable effort to strengthen public sepsis awareness, including tailored approaches for vulnerable populations. Problem-solving frameworks may be employed to help navigate patients, family, and whānau through the uncertainty of evolving sepsis acknowledging that this acute time critical illness may be experienced in a complex social, psychological, and medical context. Wide public health messaging to improve sepsis prevention, awareness, and timely diagnosis are essential, along with specific efforts to increase awareness within vulnerable populations. The difficult clinical course experienced by patients during sepsis hospitalisation and the incidence and impact of post-sepsis syndrome may be ameliorated through dedicated sepsis roles within the multidisciplinary team, i.e., a sepsis nurse, with responsibility to patient, family, and whānau support, education, transition from hospital, and rehabilitation. The ongoing morbidity and increased risk of mortality experienced by patients following hospitalisation with sepsis persist, for many, well into the recovery period thus the provision of specific sepsis care within a sepsis rehabilitation programme may optimise patient recovery.