The Danger in Losing Sight of Ebola Victims' Humanity

Over the past several weeks, things took a definitive turn for the worse. Sheik Humarr Khan, the physician leading the country’s Ebola response, contracted the disease and died along with several of his colleagues. This threw the healthcare system into panic; many doctors closed their clinics, nurses went on strike. Ebola has been identified in all but one district in the country, with up to 20 new confirmed patients per day.

On July 31, President Ernest Bai Koroma, recognizing the need for urgent action, declared a “state of emergency” which enabled the response to be further militarized. Houses in Kono that are connected to Ebola patients are now surrounded by soldiers and police 24 hours a day (with varying efficacy) and entire swaths of the country are now cordoned off. In neighboring Liberia, clashes broke out Wednesday in a slum that had been forcibly quarantined. While urgent action is warranted, such measures may only serve to further dissuade people from going to clinics and facing the shame and the loss of control that comes with being quarantined.

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Responding to Ebola requires putting patients and families into inescapably horrific situations. Being diagnosed with the disease means confronting and accepting the absolute terror of a likely-terminal condition—I am probably going to die. It requires accepting the results of an opaque test done in a faraway lab even when it still just feels like the flu. It then requires accepting that you may never have human contact again for the rest of your life—and that the only communication you will have will be with a masked man tasked with isolating you, not saving you. In the United States, we expect that such a process would be accompanied by humane counseling and social support, by health workers guiding families through letting go and last goodbyes.

But in a public health emergency of this scale and danger, patient communication and counseling can be brushed aside under the pretext of urgency. Ebola patients can be considered mere disease-carriers rather than complicated, emotional human beings—and while at the highest levels reducing transmission is the top priority, neglecting the humane aspects of care can gravely undermine the public health response.

As tensions between health workers and patients have gotten more heated, discussions of the disease have begun to take into account social context. "You may not be able to walk in and just say, 'OK, who in this village has Ebola?' That may not be something that's culturally acceptable," a Johns Hopkins epidemiologist said on National Public Radio.  But while cultural differences could contribute to the tension, it may also be that more universally human processes are going unacknowledged. In what culture would it be acceptable or productive to walk into a village and so brusquely identify and inform people that they have only days to live?

When Kono identified its first Ebola case just miles from our clinic, Wellbody Alliance deployed community health workers to the homes of people who had been in contact with the patient. They sat in their homes, empathized with the frightening position they were in, but stressed the importance of getting tested immediately and agreeing to quarantine, because patients are only contagious when they’re symptomatic, and early diagnosis and treatment tends to result in better health outcomes. All 36 contacts voluntarily agreed to visit the hospital for testing before they showed any symptoms.

Still, in the past few weeks, only 10 to 15 patients are coming to our clinic each day when we usually serve 75 or more. They’re too afraid of catching the disease and too afraid of what might happen if they are suspected of having it.

As I prepared to board my flight out of Sierra Leone a few weeks ago, it occurred to me that if I happened, for whatever reason, to get a fever on the airplane, I would be met at the gate by a team of Belgian health authorities in space-suits who would whisk me off to a hospital I've never been to before, without my family nearby, and possibly isolate me for the next 21 days. If I were to get Ebola, I would likely die alone without ever seeing my friends and family again. I knew there was almost no way I could have Ebola—but the worry never left the back of my mind. Like the hundreds of patients sick right now in their homes in Kailahun, like the angry family members protesting outside of Kenema hospital’s isolation unit, like the scores of Ebola victims alone in treatment centers and field hospitals in Sierra Leone, Liberia and Guinea, I understood how hard it would be to accept the truth—not because of ignorance, not because of culture, but because of pure, deeply human fear.  

Presented by

​Raphael Frankfurter

Raphael Frankfurter is the executive director of Wellbody Alliance, a nongovernmental organization based in Sierra Leone.

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