AMA Journal of Ethics^®

Abstract

During the 2014-2015 Ebola epidemic in Sierra Leone, people were required by law to call a trained “safe burial” team to dispose of the body of a person who had died from Ebola. It took days for a team to arrive, however, due to limited resources and rural travel obstacles, so some villagers felt obliged to bury their loved ones themselves. Even with timely arrival of a team, there can be cultural priorities that deserve attention. One man’s case discussed in this article suggests the need for Ebola responders to consider villagers’ perspectives and possibilities for compromise.

Case

Dr R is a physician working in the Democratic Republic of the Congo tasked with creating a quarantine policy for the bodies of Ebola victims, given high transmission rates from bodily fluid exposures. He receives reports of a confirmed Ebola death in a nearby village. Upon arriving with the Ebola response team, he is met by the wife and brothers of the deceased man. They refuse to allow the man’s body to be removed according to safety protocol. They explain that his body cannot be buried without first undergoing a religious cleaning by the family and a religious leader. Dr R explains that touching the body is dangerous and can easily lead to others contracting Ebola. The man’s family insists that he should not be buried without the religious ritual. How should Dr R reconcile the cultural importance of honoring local burial rituals with his obligation to prevent the spread of Ebola?

Commentary

The anthropologist Mary Douglas devoted her career to explaining that moral arguments derive from social context,¹ and because social life is complex and open-ended, there will always be conflict between competing values. It was a basic concern of anthropology, she argued, to understand how human groups accommodate conflicting ethical demands.² This article applies Douglas’ insight to safe burial protocol implementation during the 2014-2015 Ebola epidemic in Sierra Leone and is based on our experience living and working there.

Mutual Care Conflicts With Containment

In rural communities at the edge of a tropical forest region in Upper West Africa, villages are small and can be interconnected by marriage ties, so the welfare of family members linked by marriage is prioritized as an ethical value among members of these communities. Mutual support sustains their way of life, and visiting those who are ill, dying, or deceased reinforces social solidarity. Ebola virus disease (EVD) challenges the moral basis of local social life in such communities, since infection can spread when one cares for the sick and prepares bodies for funerals. In other words, infection containment requires that one refrain from caring for the sick in moments of patients’ extreme need and from preparing corpses for dignified burial. Infection containment thus presents many people with a conflict between 2 social obligations: to care for others as an expression of local interfamily solidarity and to preserve the community by helping control the spread of disease.

Families were prevented from washing and dressing corpses and had to wait, sometimes for days, for a trained burial team to arrive. 

National and international Ebola responders stressed infection control, key to which is early isolation of patients with EVD. But early EVD symptoms can look like malaria, also widespread in the region, and thus can be hard to accurately diagnose early. Later onset symptoms of EVD (vomiting, diarrhea, and sometimes bleeding, for example) are optimally managed in specialized care facilities—typically far from where patients live, especially if rehydration therapy is applied—to improve patients’ chances of survival. An instinct of many patients’ family members was to follow the patient to a care facility and offer support by preparing food and touching or talking to the patient, for example. But when a patient with EVD was brought by ambulance to a distant treatment center, personal care was compromised, if not impossible. Furthermore, when a transported patient receiving specialized care died, it was rarely possible for family members to be notified in time to take part in that person’s burial.

How Ethnography Informed Compromise

Sierra Leone was one of the worst-affected countries in the 2014-2015 West African Ebola epidemic.³ Responders deployed modern media resources to impart (Western, allopathic) messages about biosafety that implied that “traditional” approaches to caring for EVD patients and burying deceased patients were backward or barbaric. Such messaging was backed by the Sierra Leone government, which threatened fines and imprisonment and insisted upon family members’ exclusion from all burials throughout the country, even though few deaths at that time were due to EVD. Families were prevented from washing and dressing corpses and had to wait, sometimes for days, for a trained burial team to arrive. Out of fear or nervousness, some teams heaved corpses quickly into graves with poles. Mourners were held at a distance or forbidden from witnessing burials at all. Outraged, some people resisted on having loved ones with EVD infections transported to care centers and began hiding and burying bodies of deceased patients.

One young man in a village in eastern Sierra Leone, who had attended his mother as she died of EVD, viewed it as simply unforgiveable not to clean and dress her body. She had given him life, and he saw himself as obliged to stand by her in death. So he performed the ritual alone and quietly buried her; he informed no one and accepted that he would probably become infected with EVD and die. To protect others from his probable infection and to avoid incarceration in an Ebola treatment facility, he left his village, planning to hide in the bush until EVD symptoms emerged; if they did, he would die alone. After experiencing no symptoms, he reported to a health center for an EVD blood test. His test was negative. Although this man’s story is obviously clinically important, from an anthropological perspective, it suggests the importance of compromise between needs of responders to contain disease and needs of local people to perform burial rituals of cultural significance.

Anthropological Foundations of Improved Ebola Care

Possibilities for compromise emerged when anthropologists helped gain a wider hearing for local people’s stories and ethical perspectives.⁴ One result of anthropologists’ publicizing of stories involving ethical dilemmas was to shift responders’ views about burials. As a result, Sierra Leone’s national protocol on safe burial was amended to “safe and dignified” burial.⁵ Pastors and imams were engaged to officiate at the graveside, and families were allowed to attend. Another result of anthropologists’ roles in the 2014-2015 epidemic was that EVD treatment became localized. That is, large and distant Ebola treatment centers were supplemented by smaller, local community care centers (CCCs)⁶ where all diseases were treated. This change encouraged earlier reporting of EVD symptoms and testing. Moreover, many CCC staff were recruited from local communities and thus were known to patients. This familiarity enhanced trust, eased family access to patients, enabled better reporting about patients’ progress, and facilitated provision of home-prepared food for patients. Even when family members couldn’t enter the “red zone” to be at a patient’s side, they could see the patient and talk through open sides of the tents. Family presence helped some patients survive. Even when the CCC reported deaths by phone, loved ones were on hand and able to gather for burial.

Although CCCs improved family access to patients, responders began to recognize that not all communities had working phones from which to call for an ambulance or roads that an ambulance could even traverse. As a solution, poster-based information, reinforced by radio broadcasts, helped family members learn what to do for a patient while waiting for an ambulance.⁵ Family members continued to care for patients while also protecting themselves with plastic bags and coats worn backwards. They also attempted to mitigate risk of contracting EVD by having one person care for the patient while others supported the carer.^3,7

Contextualizing “Biosafety”

Allowing more family involvement in caregiving changed public attitudes towards the epidemic response effort significantly. Communities took ownership of local care facilities and EVD itself. Caregiving and burial preparation were never regarded as “safe,” so recruiting and training local burial teams remained as important as allowing family members to assume active roles in burial. One lesson is that competing cultural and public health values need to be balanced. Shouting down pleas to perform culturally important death and burial practices in the name of biosafety was not helpful. The 2014-2015 Ebola epidemic in West Africa demonstrated the necessity of compromise between conflicting values and the role of anthropology in implementing compromise.