The autopsy: underutilized weapon in the pediatric intensive care unit.

Prevention of death and restoration of function are principal goals in the care of the critically ill patient. Unfortunately, death is not a rare occurrence in the pediatric intensive care unit—there will always be patients for whom recovery is not possible. Speaking with the family of a child who has just died is one of the most stressful and difficult duties in the practice of critical care pediatrics. Among the issues that should be addressed during such a conversation is whether an autopsy should be performed, and what exactly that will entail. As medical procedures go, the autopsy is as invasive as it gets. The patient is examined from head to toe, the chest and abdomen are opened with large incisions, and all the organs are removed. The cranium is split open and the brain is removed. It is not surprising, then, that many physicians, out of a reluctance to impose yet another burden on grieving parents, do not consistently, or effectively, request consent for an autopsy, especially if they are fairly sure they already know how and why the child died. The problem, however, is that “fairly sure” often proves to be not good enough. A number of large studies from different countries and diverse clinical settings, including many pediatric facilities, have shown that autopsy examination continues to provide important new and clinically relevant information in a significant percentage of cases (1–6). From 10% to 30% of these are major revisions in diagnosis, representing class I errors, defined as those that if known before death would have led to a change in management that could have resulted in cure or prolonged survival (3). Despite the high rate of missed diagnoses and misdiagnosis uncovered by autopsy, the past few decades have seen a continuing decrease in overall autopsy rates, from as high as 50%– 70% in the 1960s to 10% for adult patients (3, 7, 8) and 20%–30% among neonatal and pediatric units in recent years (4, 6, 9). This underutilization of the autopsy compromises our ability to identify diagnostic errors and also reduces our effectiveness in teaching and research. Many explanations have been provided for this decline, such as a mistaken impression that modern diagnostic modalities have rendered autopsies unnecessary, an unfounded fear of litigation (10), financial concerns, and unavailability of adequate educational materials to inform and guide physicians and families through the autopsy consent process (7). The report by Dr. von Dessauer et al (11) in this issue of Pediatric Critical Care Medicine describes some interesting and novel approaches that allowed them to increase the autopsy rate in their pediatric intensive care unit at the Hospital Roberto del Rio in Chile. Their first step was to set-up focus groups to identify barriers to autopsy consent within their own particular environment. Through this exercise, which involved interviews of patient families as well as physicians, they uncovered some specific obstacles to the consent process that they were then able to address within the context of their patient population. For instance, they learned that language was important. There was a cultural aversion to the term “autopsy,” whereas a more descriptive but neutral term “histopathological procedure after death” was more palatable. Their multidisciplinary approach to the autopsy consent involved greater education of all caregivers, including nurses and support staff, who can be important sources of guidance to families. They provided nonpaternalistic reassurance to the family that emphasized the respectful setting of the autopsy and an overall sensitivity of the team to social and cultural concerns of relatives. After adoption of these measures, their in-hospital autopsy rate promptly increased from approximately 20% to as much as 79% during the initial period of intervention; the increase has been sustainable and appears to have stabilized to a respectable rate 50%. The authors go on to analyze their autopsy data and report the diagnostic discrepancies that they identified. The details make for an interesting read, although the overall conclusion is consistent with the already voluminous literature on this topic. Even when the clinical team is fairly sure why the patient died, an autopsy may provide new information that sheds greater light on the clinical course and, in some instances, uncovers an entirely unexpected diagnosis. The improvement in autopsy rates described by these authors, although impressive, is by no means unique. Reports from other parts of the world have also noted that when systematic locally relevant efforts were made to address consent issues, autopsy rates improved. For instance, a high-profile public disclosure of unlawful organ retention practices resulted in a sharp decline in autopsy rates all over the United Kingdom. However, the neonatal unit in Edinburgh was successful in reversing the trend and achieved a remarkably high autopsy rate of 79% by adopting comprehensive new strategies to enhance the autopsy consent process (12). A high autopsy rate and an overall favorable autopsy experience in Galveston, Texas, was attributed to the presence of a dedicated Decedent Affairs Office with personnel available to provide support in many aspects relating to the death of a patient, including autopsy consent. The authors also partly attributed their high rate to recognition by their risk-management department that autopsy examination did not contribute to increased exposure to litigation (10). Because a large proportion of pediatric deaths occur in the pediatric intensive *See also p. 617.