Unintended Consequences of Screening for Ebola

Abstract

Ebola virus disease (EVD) reached the United States in September 2014, leading the Centers for Disease Control and Prevention to publish screening guidelines to identify patients with high-risk exposures at their first point of contact with the health care system.

In West Africa, the burden of EVD is superimposed on the trauma of decades of civil war, violence, and poverty. Therefore, an important consideration in implementing screening procedures in the United States is the potential to unintentionally exacerbate posttraumatic stress disorder, or add additional stress from stigma and discrimination, among the West African diaspora.

We recommend rigorous research to develop and implement evidence-based, trauma-informed approaches to screening for communicable diseases during outbreaks, using principles of community-engaged or community-based participatory research.

Ebola virus disease (EVD) reached the United States in September 2014 amid a firestorm of controversy surrounding screening procedures at airports and hospitals, quarantine policies, availability of personal protective equipment, and medical staff training. With the recognition that the current EVD outbreak was unlike its localized predecessors, health care organizations and public health systems across the United States were forced to intensify their preparedness efforts. The effectiveness of these efforts depends on rapid and accurate identification, triage, isolation, and management of patients with high-risk exposures at their first point of contact with the health care system. The Centers for Disease Control and Prevention published clear algorithms for screening and limiting the spread of Ebola in the United States.¹ As hospitals and ambulatory clinics raced to implement these screening practices, an important question about the human impact emerged: How can the risk of transmission in the United States be reduced while avoiding stigmatization and alienation of vulnerable populations, racially profiling patients, and discouraging them from seeking care?

In Guinea, Liberia, and Sierra Leone, the burden of EVD is superimposed on the trauma of decades of civil war, pervasive violence, and crushing poverty. In the words of a Philadelphia resident from Liberia,

Ebola reminds me of the civil war. But there, you knew where the violence was coming from. You could hear the rockets and avoid that area. With Ebola, there are dead people in the streets again, but it’s invisible. You don’t know where it’s coming from or where it’s going next. People feel like they’re going through another war (personal communication, January 21, 2015).

These forces, combined with unemployment, disease, corruption, and food shortages, have forced the mass migration of their populations to Europe, Canada, and the United States, which became places of refuge for immigrants from Liberia, Sierra Leone, and Guinea. They then became much less inviting during the peak media spotlight on EVD in fall 2014, fueling a parallel US epidemic of fear, stigmatization, and xenophobia that kept pace with the mounting EVD cases in Guinea, Liberia, and Sierra Leone. Consider the experience of a woman from Sierra Leone who recalled visiting a health center in Philadelphia to have her children examined for elementary school enrollment:

I was asked, “Where are these children from?” I told them, “West Africa . . . Sierra Leone.” Everyone jumped up from the desks, raised their hands, and stayed back. I had a letter showing they had passed their 21 days [of monitoring]. I showed the letter to the front desk. It was so hard. I was even scared to walk with my children outside (personal communication, January 21, 2015).

This reaction echoes the early days of the AIDS epidemic, when the disease was associated with four high-risk groups, or the four Hs: homosexuals, heroin addicts, hemophiliacs, and Haitians.²

Screening is critical for epidemic control, but to maximize its benefits it needs to be conducted with consideration of the potential to create perceptions of discrimination and stigmatization. Otherwise, patients may give incomplete or false answers to screening questions or delay or avoid seeking care altogether. As screening procedures for EVD were implemented in summer and fall 2014, the Guinean, Liberian, and Sierra Leonean diaspora began to experience unintended consequences. There are troubling anecdotes of West African immigrants who were afraid to call 911 because of fear of discrimination and stigmatization. While seeking care for their toddler, a woman warned her husband to remain silent in the emergency department because she feared his accent would give away that they were Liberian.

More importantly, there are examples of success in pursuing public health imperatives while protecting the target population from further trauma. A Sierra Leonean man recounted how much he appreciated the daily phone calls with his public health worker to report his temperature after returning from visiting relatives. They formed such a bond that he called her the day after his required 21-day self-monitoring period ended and joked, “This is a bonus day for you!” (personal communication, January 21, 2015). This example suggests that the experience of being screened for an emerging disease does not necessarily have to be a negative one if it is conducted in a sensitive and respectful way. Furthermore, some health care institutions are paying attention to how patients perceive the screening process. The Penn Medicine Center for Health Care Innovation at the University of Pennsylvania undertook a rapid evaluation of the EVD screening process at the emergency department and an ambulatory clinic. The team found that patients (1) felt discriminated against on the basis of race, country of origin, and accent; (2) were unaware that screening questions were asked of everyone; and (3) often misunderstood the clause about close contact with returning travelers. On the basis of these findings, they recommended a more patient-centered screening approach to reduce the perception of discrimination.

As the Ebola outbreak wanes in West Africa and retreats from the public consciousness, it is important to reflect on the lessons learned from this and similar outbreaks so we can be better prepared for the next public health threat.³ One important consideration, we believe, is the potential for screening procedures to exacerbate posttraumatic stress disorder or add additional stress from stigma and discrimination. We make the following two-part recommendation based on this experience:

1. Conduct methodologically rigorous research to develop evidence-based, trauma-informed approaches to screening for communicable diseases during epidemics, using the principles of community-engaged research or community-based participatory research.

2. On the basis of this research, implement evidence-based, trauma-informed screening approaches.

According to the Substance Abuse and Mental Health Services Administration,

a program, organization, or system that is trauma informed: 1) realizes the widespread impact of trauma and understands potential paths for healing, 2) recognizes the signs and symptoms of trauma in staff, clients, and others . . . 3) responds by fully integrating knowledge about trauma into policies, procedures, practices, and settings, and 4) seeks to actively resist re-traumatization.⁴

In a trauma-informed system, the entire staff would be trained in its principles and practices. Posted signs and verbal communication during screening procedures would offer to connect patients experiencing emotional distress about the outbreak, or from screening and isolation procedures, with mental health professionals. Finally, evidence could guide the community-engaged design of screening and isolation protocols that avoid unnecessary alienation, stigmatization, and psychological harm.

Thus, more research is needed on developing trauma-informed approaches to screening for communicable diseases, building on the literature on care for military veterans, survivors of intimate partner violence, and others. Public health departments and health systems could leverage community-based coalitions to engage the community in research on ways to reduce stigma and ensure access to health care in the future. For instance, during the height of the EVD crisis, city governments convened community leaders from the affected countries, public health departments intensified their efforts to collaborate with the West African populations in their catchment areas, faith communities united to act, and Penn Medicine used an influenza vaccination outreach campaign to concurrently engage the West African community around EVD (personal communications, November 12, 2014, and February 25, 2015).

Diseases that have heretofore been viewed as remote threats will continue to arrive on our shores. To be prepared, we need more research on effective, efficient, evidence-based, trauma-informed methods to achieve public health goals without, as a Liberian pastor in Philadelphia stated, “Adding fuel to the fire, and hurt to injury.” The 14th Dalai Lama observed, “If you can, help others; if you cannot do that, at least do not harm them.”⁵ We should expect nothing less from our screening procedures and ourselves, as public health practitioners and health care providers in a globalized world.