The Moral Imperative of Research in the Aftermath of September 11
Rachel Yehuda - Mount Sinai School of Medicine and Bronx Veterans Affairs Hospital
This work was supported by NIMH 5R01 MH64104-02 (RY). The author gratefully acknowledges Dr. Richard McNally for his encouragement and Drs. Kenneth L. Davis, Linda M. Bierer, Julia A. Golier, Glenn J. Treisman, Sandra S. Galea, and Rick L. Newman for their thoughtful suggestions.
Correspondence concerning this article should be addressed to Rachel Yehuda, Ph.D., Psychiatry OOMH, 130 West Kingsbridge Rd., Bronx, NY 10468; E-mail: Rachel.Yehuda@med.va.gov.
Decisions regarding the effectiveness of any health-related intervention cannot occur in an intellectual vacuum. Understanding the needs of survivors in the acute aftermath of a traumatic event requires knowledge of the range of consequences of trauma exposure and demonstrations that these effects can be predicted. This is a prerequisite to anticipating how negative consequences can be prevented or reversed.
The mental health response to September 11 was not guided by evidence-based medicine or psychology, but by clinical lore and prior practices. In some cases, the mental health response appeared to fly in the face of emergent scientific findings about the effectiveness of certain types of interventions, and was ultimately compromised by a limited understanding of how to treat survivors in the immediate aftermath of such events. Health service providers and public-policy makers must take stock of the cost to society of not having the vital data needed to make informed decisions about how to best respond so as to minimize the short- and long-term consequences of traumatic stress. As government officials continue to issue warnings of imminent terrorist actions, it is imperative to establish the infrastructure that would gather currently missing information and generate future decisions about mental health responses on the basis of rigorous empirical knowledge.
The Gaps in Knowledge about the Psychological Aftermath of Trauma
Prior to September 11 there were several gaps in our knowledge that continue to persist. We did not know how to identify those at risk for long-term mental health problems or how to predict recovery or resilience. Although it was known that after exposure to trauma most people initially developed, but then recovered from, symptoms of posttraumatic stress disorder (PTSD) (Kessler, Sonnega, Bromet, Hughes, & Nelson, 1995), the implications of this finding for understanding PTSD as a pathologic process were not clear.
It was not known, for example, whether the continuing presence of posttraumatic symptoms reflected an inability to recover from trauma because of the absence of resilience factors, or whether it occurred because of pretraumatic risk factors. It was also not known whether trauma-related psychopathology was a function of time, implying that it is not necessary to consider symptoms that were expected to abate as reflecting or predicting pathology, or whether the immediate presence of such symptoms warranted the use of prophylactic treatments to hasten recovery or forestall pathology. Alternatively, if psychiatric disorders developed due to identifiable risk factors, it was not clear whether it would be preferable to treat-or treat differently-survivors with those risk factors. Finally, it was not clear how such persons could even be identified.
Consequences of This Gap in Knowledge after September 11
These conceptual questions took on great urgency on September 11, because immediate decisions about appropriate treatment needed to be made on a huge scale. Within hours of the World Trade Center collapse, survivors and family members of victims congregated to seek information about the whereabouts of loved ones and the resources that might be available. Numerous personnel spanning a wide range of disciplines also responded to provide support, education, and crisis and grief counseling.
But in the years prior to the attacks of September 11, some researchers had begun to call into question the effectiveness of practices previously implemented during smaller-scale disasters (Bisson, McFarlane, & Rose, 2000; Litz, Gray, Bryant, & Adler, in press). Although the data supporting the concerns were preliminary, they implied that some types of interventions, such as Critical Incident Stress Debriefing and the use of benzodiazepines (Carlier, Voerman, & Gersons, 2000; Mayou, Ehlers, & Hobbs, 2000; Gelpin, Bonne, Peri, Brandes, & Shalev, 1996), could disrupt the normal recovery process, leaving some with more symptoms than they might have had if not for the interventions.
Critical incident stress debriefing usually refers to a one-session intervention in which a facilitator encourages recently traumatized individuals to relive their experience by telling the story of what happened to them, beginning with the moments prior to impact (Bisson et al., 2000). Ostensibly, the telling of the story begins a process of normal memory consolidation. However, some become overwhelmed by anxiety when telling the story, which in turn may promote avoidance, thereby exacerbating the traumatic impact. So, too, benzodiazepines, such as diazepam (Valium), are used extensively to treat short-term anxiety and can provide temporary relief from insomnia. However, their use in the immediate aftermath of trauma has been shown to delay recovery of intrusive symptoms (Gelpin et al., 1996).
In trying to evaluate how studies showing negative effects of such interventions should be weighted, it became clear that there was not enough information about the effectiveness of any treatment to guide a large-scale mental health response. However, the fact that some interventions might be contraindicated raised further concerns about the provision of any intervention in the absence of data supporting its use.
Because these questions had been raised as recently as 1995, following the mental health response of the Oklahoma City bombing, an event such as September 11 could have provided an important opportunity to collect data about current practices and associated outcomes-had an infrastructure been in place to organize and collect such data. This might have involved requesting that providers uniformly document the nature and severity of the traumatic exposure; the severity of psychological response; current and past history of psychological disorders; the quality of available social supports; the immediate concrete (e.g., first aid, food, shelter, information) and psychological (e.g., education, comfort, reassurance, reduction of extreme panic or dissociation) needs of the survivor; and the specific intervention made by the provider for those who were seen in the hours, days, and weeks following September 11. Demographic and identifying information to allow follow-up would have also been critical. Such data would have yielded knowledge about the range of acute responses and factors associated with their persistence over time, accounting for specific interventions made, and could have provided the basis for the justification of current practices or the development or refinement of other ones. However, it is clear that very little such information will be available.
An Analysis of Barriers and Missed Opportunities to Research in the Aftermath of September 11
In the aftermath of September 11, it is imperative to ask why so little research was undertaken in the first few days and weeks following the terrorist attacks, to guide the future of this and subsequent mental health crises. One answer is that it takes time to conceptualize, design, and implement a study, let alone obtain resources and secure permission to recruit human subjects. The National Institute of Mental Health responded immediately to September 11 by publicizing opportunities to obtain administrative supplements to ongoing grants to include the study of World Trade Center victims. For most qualified investigators with access to New York City, responsibilities related to the clinical or educational response to September 11 made the idea of writing a grant on September 13 daunting. But even if it could have been accomplished, applying for a grant would not have provided the mechanism for allowing immediate study, because even the most rapid administrative process would not have liberated resources for several weeks or months.
There were other barriers to collecting data. Very shortly after September 11, city and state officials discussed a plan for ensuring the protection of potential subjects by creating a registry of survivors and controlling who would be allowed to recruit them for studies. Following the Oklahoma City bombing, the governor placed a moratorium on research, permitting only a few investigators to study trauma survivors (Call & Pfefferbaum, 1999). This explains the relative paucity of data obtained and, most important, the lack of information related specifically to the effectiveness of the immediate mental health response funded through Federal Emergency Management Agency, the Red Cross, and independent volunteers. As in Oklahoma City, the sheer volume of outside resources, including personnel arriving from all over the world to "respond" to September 11, raised concerns that victims would be inundated with requests to participate in studies and would ultimately feel burdened by them. Such concerns prompted New York city and state officials to examine the feasibility of restricting "outside" researchers from performing studies in the aftermath of September 11 prior to concluding that such measures could not likely be implemented.
Although it is appropriate to protect the welfare of potential research subjects, the subtext of any immediate bureaucratic response that seeks to place a moratorium on research is that even naturalistic research is something from which people need protection. Without quite saying it is unethical, the implication is that it is not altogether appropriate to conduct research in response to disaster-that if someone thinks about research "at a time like this" it is opportunistic, like reading the will before the body is buried.
The cost of this attitude is a reduced ability to learn enough from one tragedy to react more effectively to the next. There is no reason to believe that we have seen the last of traumatic exposure on any scale, and by failing to study each response we perpetuate mistakes rather than learn from them. To the extent that the costs to society can be realized, we can prepare ourselves differently in the future. It was difficult to write a grant on September 13-as it is difficult to reasonably plan and consider any of the issues involved in responding to a disaster while in the midst of its acute aftermath-but it shouldn't be so difficult now to formulate the questions, design and implement the studies, procure permission and funding, and be positioned for next time.
Academic researchers and clinicians could be deployed to identify the critical variables, articulate the appropriate outcome measures, design databases and templates for assessment, and devise strategies for treatment matching or simply different levels of interventions based on specific psychological reactions of the survivor and in consideration of the differential levels of training and education of those responding on the scene. Manuals, Web sites, and training could be prepared that deliver the important message that, as with emergency measures in medicine, the delivery of psychological services also requires a "triage" process.
Such a plan can only work, however, if it is part of the national governmental response-that is, if there is an already established relationship between those responding to a disaster and those who will be asked to study the response. This plan, in turn, requires that the acquisition of knowledge become a priority for the government and those involved in the immediate delivery of services, not only for the academic community.
The issues involved in establishing such an infrastructure are complex. A major hurdle is the protection of the right to privacy of survivors. The inability to study the disasters that have recently occurred is due partly to the paucity of paperwork generated by those providing services-which may be intentional (Pfefferbaum, North, Flynn, Norris, & DeMartino, in press). Indeed, the ability to receive services anonymously was a major component of both the Oklahoma City and New York responses, and was done in order to reduce the barriers to accessing care.
But these and other considerations should be reevaluated based on data. The assumption that survivors would be hesitant to obtain services unless they could do so anonymously should be verified. Perhaps as the public becomes more concerned for their safely and welfare, they will also be willing to tolerate the costs associated with being better prepared to respond to disaster, as it is also willing to tolerate increased security at airports or certain restrictions on the right to privacy. It is likely to be the case that no infrastructure for research can be implemented in the absence of public education or representation in such future plans. The inclusion of medical ethicists would also allow a consideration of how consent to use information for research can be obtained by those delivering services during times of crises, or even proactively, as in the case of organ donations on driver's licenses, and so on.
It should not be necessary to wait until the next disaster to obtain all of the information that is necessary to provide rational interventions in the acute aftermath of these events. The number of persons who may be affected by the psychological consequences of traumatic exposure (Galea et al., 2002; North, 1999) justifies a proactive approach.
If other governmental agencies can be mobilized within hours to respond to disaster, the academic community should also be capable of being mobilized. But this will require that we stop acquiescing to the message that research per se is exploitative, and understand that it is far more exploitative to act without evidence that our interventions are therapeutic.
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