Navigating uncertainties in critical care with COVID-19: A cross country analysis of patient narratives from Brazil and the United Kingdom

Why it matters

Uncertainty is inherent in medicine, but it was particularly amplified when it came to the new emerging COVID-19 virus. During the early months of the pandemic, medical knowledge about the disease and its treatment was limited, and health systems – stretched beyond their limits – were unable to provide the public with security or even desired outcomes.

This uncertainty was acutely felt in critical care medicine. With treatments not yet identified, critical care teams had little to offer the increasing number of patients beyond oxygen, and in some instances trials of a drug that had not yet been established as effective. While there is ample literature on how clinicians manage uncertainty such as this, how patients experience it is less well researched.

Approach

In this research, we drew on two narrative interview studies with patients who were critically ill with COVID-19 in Brazil and the UK in the first year of the pandemic. We explored how patients admitted to critical care units in the two countries experienced, made sense of, and responded to the extreme uncertainty, through an analysis of narrative accounts of their experiences.

Project findings

Uncertainty was widespread in the patient narratives from both countries. The analysis highlights four types of uncertainty that manifested in critical care:

1. Consequences of uncertainty associated with contagion. Social relationships were profoundly impacted by uncertainty about how infectious and deadly COVID-19 was. Participants in both countries described feeling isolated and yearning for connection as a result of the lack of human contact and staff fear of infection.
2. Treatment uncertainty. In the early months of the pandemic, there was no treatment available for COVID-19 patients; clinicians could only provide life support. Patients saw the pressure staff were under and many chose not to add to this by querying clinical decisions. In contrast to the UK, where all participants had been treated in the NHS, the Brazilian participants were all using private care, and half of them had sought second opinions about their treatment plans.
3. Uncertainties about protocols and ethics. The pandemic led to a dramatic disruption to standard ways of working and staff were redeployed from other areas to critical care units. Some participants described the negative impact of being cared for by staff who were too busy or uncertain about what to do in times of crisis.
4. Uncertainty about individual prognosis. Witnessing other patients with the same condition suffer and die around them made the patients feel helpless and raised questions about their own chances of survival. Some patients tried to overcome uncertainties about their survival by forming bonds with other patients.

This research highlighted the isolation experienced in critical care during a pandemic that disrupted normal social support structures and lines of communication. Through a focus on lived patient experience, it has shown the impacts of different kinds of uncertainties during the pandemic and has demonstrated how patients could sometimes achieve temporary relief through the forming of relationships. However, the capacity of patients to proactively change their uncertain situation varied, with some being more able than others to do so. A response to the differences at play should be a focal point of future pandemic planning.

A crucial learning from this pandemic is the importance of attending to how patients navigate their uncertain environments by investing in relationships in critical care. When these relationships were formed or maintained, the experience of patients was less lonely and frightening, and facilitated healing and recovery.