Key Considerations: Dying, Bereavement and Mortuary and Funerary Practices in the Context of COVID-19

"When important processes related to death and dying are denied, there can be significant impact at both individual and societal levels....The measures and restrictions adopted and the means of communicating them must be appropriate to the specific cultural context, and involvement of the wider community in their formulation and dissemination is essential."

With a focus on community engagement, psychosocial impacts, and media issues, this brief sets out key considerations for processes related to death and dying in the context of the global COVID-19 outbreak. It includes insight and learning from other epidemics and infectious disease outbreaks. In the brief, the Science in Humanitarian Action Platform (SSHAP) offers general guidelines but stresses that beliefs and practices regarding death and dying vary widely across settings; thus, the measures and restrictions adopted and the means of communicating them must be appropriate to the specific cultural context, and involvement of the wider community in their formulation and dissemination is essential.

Some key considerations related to the experience of death and dying include:

• Measures that restrict people visiting dying patients may have significant psychosocial impact on patients, health workers, family members, and communities; SSHAP advises exploring alternate ways of enabling interaction. For instance, during the West Africa Ebola outbreak, visiting areas were established in "green zones", where patients and families could interact at a safe distance. Other examples include facilitation of virtual visits (e.g., donated tablet devices have made it easier for coronavirus patients at hospitals around the world to communicate with their loved ones), the use of personal protective equipment (PPE) for in-person visits, and the giving of last rites virtually or by phone. Approaches will vary by context and should be developed in consultation with local leaders, religious leaders, and community organisations and associations.
• In many cases, health workers are themselves standing vigil for dying patients, to ensure they do not die alone. Psychosocial support systems should be in place for such staff.

Communication-related considerations concerning caring for the deceased:

• Up-to-date and accurate information regarding risk associated with handling those who have died from COVID-19 should be clearly communicated to people who care for the deceased. Misinformation regarding the danger of posthumous infection risks creating an atmosphere of unnecessary fear and mistrust of government and response teams once accurate information is conveyed.
• In many cultures, seeing the face and viewing the body of the deceased are key for both social and emotional reasons. For example, in Ebola epidemics in the Democratic Republic of Congo (DRC), when kin were unable to see the face of their loved ones or congregate around the body, it impeded confirmation of death, raised concerns about witchcraft and body snatching, led to negative rumours about the ulterior motives of the response, and delayed emotional closure.
• Families should be informed in a careful, timely, and compassionate manner about what will happen with the remains of their relative, and expectations must be sensitively managed. Community and faith leaders can support this process. Time should be provided for family members to ask questions and to fully participate in decisions regarding the deceased as appropriate.

Considerations in light of community reactions to changes to funeral and mourning practices:

• When possible, as many elements of the normal practice must be preserved. When practices cannot be followed, their modification must safeguard religious freedom and incorporate spiritual and cultural values of the deceased and their family, within the limits of safety. It is important that family members are consulted throughout.
• Evidence from previous epidemics demonstrates that people are willing to adapt practices, provided (i) the new practices meet the symbolic, social, and emotional needs of the original ceremonies and practices, and (ii) affected communities themselves are involved in the formulation of any proposed changes.
• It may be helpful to encourage families to think about available alternative rituals and ceremonies, without putting pressure on them. For example, during the Ebola outbreak in DRC, families planted trees as a way to remember their loved ones. In the time of COVID-19, families in the Netherlands have asked friends and relatives to send postcards, letters, and photos of the deceased to be included in a later ceremony. There have been numerous examples of rituals and ceremonies taking place remotely (e.g., memorials such as Jewish mourning shiva calls and funerals held over Zoom and other online platforms) and of individual participation (e.g., lighting a candle in a window). Practices that are chosen and managed by the family, that have personal meaning, and that are aligned with personal values may be most beneficial.

With regard to media involvement, SSHAP notes that "Given the global nature of the pandemic, press coverage has far reaching impact, particularly as it often includes powerful images related to death." One example of this impact is that these images might be sparking conversations about death, something most societies are reluctant to talk about. Media sources are now reporting recommendations that families begin to have discussions about the end of life; being open about final wishes may be particularly important in the current context, as COVID-19 related illness can progress quickly, and family contact in formal care environments is limited. Media-related key considerations include:

• "In Ebola preparedness and response activities in West and East Africa, dramatic and oversimplified media messages like 'Ebola Kills' increased fear and may have fuelled community opposition to response activities..." Similarly, changing mortuary and funeral practices should not be sensationalised; instead, details about new measures and the reasons they are necessary need to be reported accurately and with compassion.
• "Statistics are important to understand the pandemic, but people should not be reduced to data points. Balanced media reporting that respects people's dignity, privacy and humanity is important."