Editor's note: The death of a loved one during an epidemic is especially tough. Because of fears of contagion, family members may not have been able to spend time with the dying person in their final days and hours, or traditional funeral services and burials may not have been possible. That is happening in some instances with COVID-19, in particular with older people who are isolated from family after a diagnosis and who become seriously ill. And it has happened during the Ebola outbreaks of 2014-2016 and the outbreak in the Democratic Republic of Congo.

The consequences of this kind of scenario are severe. Families may feel they do not have an opportunity to bid farewell. In areas where Ebola spread, community members often came to mistrust medical workers due to the lack of contact with dying family members. Here is a report on the issues that arose in Congo — and solutions that gave family members peace of mind as well as more faith in the health-care establishment.

When Marie Jeanne Kaswera lost her husband to Ebola at the start of the devastating epidemic in the Democratic Republic of Congo, she says she was "overwhelmed by negative thoughts and despair." She could not wash him or display his body at home, preventing friends, family and neighbors from paying him their final respect, as is required in her country's custom.

"I was very hurt," says Kaswera, who was unable to attend her husband's funeral or perform any burial rituals according to local convention. "I wondered if he really died because I never got to see and hold his body."

The disease hit the DRC in August 2018 and has claimed the lives of over 2,200 people, according to the World Health Organization. Because a dead body can transmit the virus for up to a week after death, the Ministry of Health prohibited all traditional burials, which include close contact with the corpse. Public health authorities mandate that families are kept at a safe distance from the body, and most burials are carried out by members of the Ebola response team. But these measures have created a sense of mistrust between community members and health workers.

A Congolese psychologist and counselors at a group called the Bethesda Counselling Centre are helping Kaswera — and others who lost loved ones to Ebola — to find solace and closure through alternative burial rituals.

With a team of four counselors, psychologist Noé Kasali — who heads Bethesda's counseling program in Beni, an Ebola-affected city in the northeast of DRC — has helped ease mourning for those who have lost a loved one to Ebola. They have done this by creating new interpretations of the traditional funeral ceremonies that are a critical part of the Nande culture — the largest ethnic group in Beni — but without the body of the deceased present.

In Nande tradition, Kasali explains, Kaswera would have been able to wash the body of her husband and dress him in fresh clothes. Then she would display him in a coffin for friends, family and neighbors to see. Visitors would come to pay their respects — which often includes touching the body of the deceased — and sing, dance and cry through the night.

"Not being able to perform rituals [is] devastating for people," says Kasali. "It prolongs their suffering."

Kasali launched Bethesda's alternative burial program back in May 2019. Since then, his team has counseled 122 families. His team gets in touch with families through referrals from respected community leaders. The program lasts for four weeks, in which counselors take participants through three steps.

The first step is for family members mourning a death to gather at a place they select — for example, beneath a favorite tree, in church or at home. There, counselors introduce the program and give people the opportunity to ask questions about the Ebola virus and the death of their loved one. Many families have unanswered questions: Is it really true that a virus caused my father to die? Why him? Did I do something wrong?

During this session, counselors listen to and try to address such concerns. Bethesda's staff live in the same city and are part of the same culture and speak the same local language. "It is our people," says Kasali. "Their grief is also ours."

The second step is for families to come together to share stories about their deceased relatives, using photographs, prayer, music and letters — a substitute for the dances and songs by mourners that are part of traditional burial parties.

In this step, the families are also encouraged to write letters to their deceased loved ones, including memories of times together. The process is designed to provide a way to express thoughts often left unspoken because of the sudden death. The letters are to be kept in a dedicated place at home such as a special box or a locked drawer — and to be read from time to time.

"It was powerful to write the words you were unable to say," says Kasali. The activity offered the families a form of closure – a way of processing grief and letting go, he says.

The third and last step of Bethesda's program tries to replicate the rite of planting trees and flowers on top of a loved ones' grave, a crucial part of Nande burials. Kasali and colleagues invite families to pick a different yet special place for planting: next to a tree where the deceased used to shelter from the sun, or an empty plot of earth next to the family home. By planting trees and flowers, living memorials are created – a space where people can mourn and remember, an alternative to the graveside.

"Families [who] have not put a stem or flower on the grave of their loved ones— [it] leaves a big gap in their soul. The stems grow to become flowers or bushes that represent the person who died," says Kasali.

Marie Jeanne Kaswera went through the program a few months ago after her husband died of Ebola. She knows he was buried by a burial team, but she does not know where: "My children and I did not participate in the burial. At that time nobody was allowed." Without knowing where he was buried, she had assumed that a memorial tree could not be planted.

The activities suggested by Kasali's team offered her closure. "It will always help me to remember my husband whenever I see the tree," she says.

So far, families have planted almost a hundred trees — and flowers as well — in and around Beni in honor of those who have died from Ebola.

Bethesda's approach is promising, says Ashley Nemiro, from the MHPSS Collaborative, which provides mental health and psychosocial support services in humanitarian emergencies. Nemiro, a licensed therapist who has worked with the World Health Organization and the International Rescue Committee, believes that such models should be replicated and scaled up in future Ebola epidemics.

Carmen Valle Trabadelo, a psychologist at the MHPSS Collaborative, adds that the Bethesda program, drawing on existing research about mental health and mourning, provides an opportunity for families to reflect on the loss of their loved ones and the anger or sadness they might feel.

"It is exactly the type of work that is needed in DRC," she says.


Ingrid Gercama is a freelance journalist and anthropologist. She has been writing about the social impacts of Ebola since the outbreak in West Africa in 2014-2016.

Theresa Jones is a researcher in the field of global health. Trained as a psychologist, she has previously worked for Doctors Without Borders and the International Rescue Committee.

Copyright 2020 NPR. To see more, visit https://www.npr.org.

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