© 2005 American Thoracic Society doi: 10.1164/rccm.2502002
Charting (and Publishing) the Boundaries of Critical IllnessUniversity of Pittsburgh School of Medicine Pittsburgh, Pennsylvania Anyone working in intensive care knows that much of the job is about communicating with families. Although we have many patients who we never get to know well, we often develop intense relationships with their families, offering guidance and support during difficult times. But generally our communication with the family ceases at the point that their loved one is discharged, alive or dead, from the intensive care unit (ICU), and we turn our attention to the next patient and the next family. What happens to these families thereafter has been largely uncharted in ICU research. In the current issue of the Journal (pp. 987–994), Azoulay and coworkers explore what happens to families after an episode of critical illness (1). They interviewed the family members of ICU patients with the main potential decision-making role 90 days after patients were discharged from 21 ICUs across France. Their primary objectives were to measure the frequency of possible stress-related morbidity and identify potential risk factors for sequelae relating to emotional and psychological symptoms. There are two very important findings of the study by Azoulay and colleagues. First, a third of subjects (94 of 284) exhibited symptoms suggestive of moderate to major risk of post-traumatic stress disorder (PTSD). This proportion is very high considering the fact that untreated PTSD can be debilitating, yet there is no systematic attempt in current care to screen and treat PTSD in this population. Second, these symptoms were more common among family members who felt that information in the ICU was incomplete and who had been involved in the decision-making process. Both information communication and the way in which decisions are made are under the control or influence of the ICU team. Thus, there is a potential of ICU care to improve or worsen the long-term sequelae for the relatives of ICU patients. A strength of this study is that there was a screen across a sizeable number of families at a large number of ICUs, enhancing our confidence that the findings are likely to be generalizable. Another important strength is that the study was not limited to the families of ICU patients who died. Prior studies of ICU families were small and limited to bereaved relatives, finding that these families often exhibited signs and symptoms of stress, depression, and dissatisfaction with ICU care (2–4). The authors of the current study found, not surprisingly, that symptoms were most prevalent among bereaved family members. But it is notable that symptoms were common even among family members of surviving patients, lending credence to the notion that the ICU experience itself is very traumatic for families, regardless of patient outcome. As with all studies, there are limitations. The authors only evaluated family members at 90 days, and it is unclear whether their symptoms persist. The authors administered a rather crude screen for depression and PTSD, and were measuring risk factors, rather than establishing an actual diagnosis of depression or PTSD. Although they have conducted a careful analysis of independent risk factors, they have no control population, such as the family members of patients with other diseases who did not incur ICU care. Therefore, teasing out the contribution of the "ICU experience" is difficult. But, again, the notion that events in the ICU were independent risk factors suggests that these risk factors might be modifiable by our actions. So, where do we go next? There are several issues. First, it would be important to understand whether findings are similar in the United States and other countries. Symptoms were most prevalent among those who shared in end-of-life decisions. In the United States, there has been a movement in both medicine and society to "de-parentalize" healthcare decision-making, encouraging physicians to be less autonomous and engage in a shared decision-making process with patients and families. That such a process might increase the risk of PTSD is somewhat alarming. One might speculate that shared decision-making was particularly stressful in France because it is less common or accepted in French society than in the United States. But such speculation seems just that—highly speculative—and the more prudent course would be to understand better the ramifications of shared decision-making in different cultural environments. By extension, larger studies with adequate sample size to explore differences among patients, families, and ICU clinicians of different cultural, religious, and ethnic backgrounds seems desirable. Future studies with extended follow-up, control populations, and more in-depth evaluations of PTSD, anxiety, regret, and depression would all contribute to a better understanding of the natural history of this phenomenon of ICU burden on families. Beyond charting the natural history, we cannot avoid musing over whether we could mitigate symptoms and decrease the risk of unwanted downstream sequelae. Obvious targets during the ICU period include communication and information exchange, as well as more sophisticated assessment and management of decision-making. For example, an ICU clinician trained in counseling skills may be able to engage a family member in decision-making without the family member feeling alone or burdened by the decision, and without the family member feeling regret later about the decision. It is also seems obvious that, even with improved ICU management of families, post-ICU PTSD will not be eradicated. Hence, it seems wise to develop strategies that identify family members at highest risk and provide follow-up evaluation and management. There is one more key point about the paper by Azoulay and coworkers, and that is that it is published in this journal. We recognize that we have not often published studies of this nature. However, we were delighted to receive this paper, and consider it exactly the kind of research that should be printed on our pages. Critical illness is an extremely complex entity, with wide ramifications for the patient, the patient's family, healthcare, and society. We consider all high-quality research that improves our understanding of critical illness to be of relevance to our readership, and therefore deserving of publication in the AJRCCM. As such, we envision that studies such as that by Azoulay and colleagues can sit comfortably alongside more "basic" investigations of cellular and molecular mechanisms of critical illness. Ultimately, our yardstick for critical care papers is this: "Will it help us think differently, and think better, about how to care for the critically ill?" Thus, we express our thanks to Azoulay and colleagues for considering our journal for their work, and extend our offer to all critical care researchers, in basic, translational, clinical, and health services research, to consider us for future publications. FOOTNOTES Conflict of Interest Statement: D.C.A. does not have a financial relationship with a commercial entity that has an interest in the subject of this manuscript. REFERENCES
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