Death Notification, Grief, and Posttraumatic Stress: Implications for COVID-19 Deaths
Stephen J. Cozza, M.D., Joscelyn E. Fisher, Ph.D., Joshua C. Morganstein, M.D., Brian W. Flynn, Ed.D., Quinn M. Biggs, Ph.D., Rafael F. Zuleta, B.S., Carol S. Fullerton, Ph.D., David M. Benedek, M.D., Robert J. Ursano, M.D.
April 20, 2020
Human Remains, Grief, and Posttraumatic Stress in Bereaved Family Members Fourteen Years after September 11, 2001, a forthcoming manuscript in the Journal of Traumatic Stress describes the mental health effects on 9/11-bereaved family members after being notified (often multiple times) that remains of their loved ones were identified. Although returning human remains to family members has traditionally been thought to support grief adaptation, 9/11 family members in this study indicated that notifications of remains identification were not associated with reduced grief severity, but with posttraumatic stress. As a result, the authors concluded that “[t]he goal for comprehensive identification must be balanced with the potential consequences of providing multiple, often distressing, notifications to family members.” One could imagine that future mass casualty events involving loss of life, whether due to explosive events resulting in fragmentation of bodies or other large scale losses, would likely lead to similar grief and posttraumatic outcomes.
The recent, novel coronavirus (COVID-19) outbreak presents new and different challenges associated with death notification. Due to this pandemic, the world is facing a threat that has resulted in loss of human life on a global scale that increases daily (as of April 20, 2020: over 170,000 dead worldwide). Like 9/11 deaths, COVID-19 deaths have been similarly unanticipated. Deaths from COVID-19 often occur after rapid deteriorations in health, even in those who were previously healthy, and are most likely experienced as unanticipated and untimely by their loved ones. Further complicating COVID-19 deaths is the likelihood that loved ones will die in hospitals or other facilities (e.g., nursing homes, rehabilitation centers) without loved ones present. Under such circumstances, there is less opportunity to comfort or communicate with the ill person, hindering the ability to say goodbye or hear any last thoughts or requests.
When someone dies in the hospital from COVID-19, the family is likely to learn of the death by a telephone call from someone working at the facility where the death occurred. The telephone call may or may not be made by a healthcare provider who cared for their loved one. Due to heavy demands on healthcare staff, those who notify the family may be junior personnel, and/or lack training or experience with death notification, an area which is not given much attention during formal medical education. Given the strain on healthcare facilities during the pandemic, healthcare personnel are likely to be stressed and/or preoccupied, which could lead to notifications that lack the level of personal or intimate discussion about the death that might be possible in more typical, non-pandemic-related circumstances. Additionally, because of the absence of family members at the hospital while the family member was ill, healthcare teams may be less familiar with who the patient was, making it difficult to be more personal in their communication with the family. Similar to 9/11-bereaved families, COVID-bereaved families may not have timely access to their loved ones’ remains or personal belongings due to concerns about contagion and institutional guidelines or state/local ordinances about the management of those effects. It is possible that a family will never receive intact remains of their loved ones if, for example, guidelines require cremation of remains prior to return or immediate burial. As a result, religious, cultural or ethnic mores may not be followed, adding to a family’s sense of loss.
Given the unusual and painful circumstances associated with COVID-19-related deaths, bereaved family members, healthcare providers, and other service providers (e.g., mortuary staff, state and local officials) are likely to find circumstances challenging or even overwhelming. Despite these hardships, there are ways to support all those involved. Given the uncertain course of illness and possibility of rapid deterioration in health, it is important for families to connect (via text, e-mail, telephone, or video chat) with their loved one when they have the opportunity, and to say goodbye and express any last wishes. The healthcare team should provide as many opportunities as possible to facilitate and allow this.
The manner and method in which death notification occurs can also be managed in ways that prevent additional negative consequences for both the notifier and the receiver. If possible, the person chosen to do the notification should be someone who has had experience delivering bad news. They should prepare in advance by seeking out resources that can assist with notification (see resources below), and by gathering as much information (e.g., names of the patient and their family members, patient’s occupation and hometown) beforehand to make the notification accurate and personal. Once they are prepared with this information, the delivery should be straightforward and clear and, ideally, done in a quiet location with minimal distractions. Use simple words to share the news (“While we were caring for your father, he died today in our hospital from coronavirus”), while also being empathic (“I’m so sorry for your loss”). Do not use euphemisms for death such as “passed away” or “departed”; simply say that the loved one has died.
Although families are likely to want details about their loved one’s death, notifiers should carefully choose which details would be helpful for the family to hear, and use simple, straightforward statements to describe these details. Healthcare professionals must be cautious about sharing complicated medical treatment information that may overwhelm, rather than help, family members. Important details may include “they were not alone” or “they did not suffer”, but only if true. Loved ones should be provided answers to their questions when possible, but explanations should be factual and not based upon conjecture. Family members will appreciate being informed of any last thoughts the deceased wished to be communicated. It is important to follow up with families after the initial notification to answer any additional questions and ensure access to support (e.g., grief support, spiritual care).
In addition to clearly and compassionately providing death notifications, notifiers must be prepared for the emotional responses of family members, which may include sadness, rage, guilt, and blame. Notifiers should simply be present with the family member, not judging them for their feelings, taking potential accusations personally, arguing, or becoming defensive. All who interact with those whose loved one has died must also have an understanding of grief, remembering there is no “right way” to grieve, especially in circumstances of a pandemic. For deaths resulting from COVID-19, the lack of physical presence with the dying family member may make the death seem less real, which could lead to feelings of disorientation, helplessness and powerlessness. It is important to memorialize the deceased with family and friends, but this may require adjusting traditional funerals and burials given the circumstances. Grief never truly ends - its intensity ranges among individuals, but typically tends to diminish over time. Remind bereaved individuals to practice good self-care (i.e., eating properly, exercising, maintaining good sleep hygiene, practicing religious/spiritual rituals if appropriate). When grief is persistent and unremitting, a clinical condition, prolonged grief disorder, may be present and require evidence-based treatment (for more information visit Columbia University’s Center for Complicated Grief website https://complicatedgrief.columbia.edu/professionals/complicated-grief-professionals/overview/)
There is a universal need for training to develop competence in death notification. In addition to helping family members through the situation, training must address the psychological impact that making notifications has on the notifier (whether a physician, nurse, social worker, chaplain, first responder or mortuary affairs worker), and identifying means to mitigate the effects in real time (i.e., it may be too late once things seem to have calmed down). The practice of death notification must be integrated into healthcare planning, so that hospitals and other care facilities acknowledge the implications of notification on family members, inform their practitioners and other potential notifiers of best practices in notification, and have personnel and suitable resources in place to optimally manage the notification process, particularly during times of system overwhelm. It would be beneficial to convene a panel of experts to review lessons learned from 9/11, the COVID-19 pandemic, and other mass-death events to promote evidence-informed guidelines for death notification to be implemented after mass casualties that result from events like 9/11 and the COVID-19 pandemic. Future research must evaluate methods of remains notification that minimize posttraumatic effects while providing supportive assistance to facilitate healthy grief adaptation. Findings should be used to improve notification policy and inform training procedures for notifiers.
The opinions and assertions expressed herein are those of the author(s) and do not necessarily reflect the official policy or position of the Uniformed Services University or the Department of Defense.
Notifying Families after a COVID-19 Death, Center for the Study of Traumatic Stress, Uniformed Services University https://www.cstsonline.org/assets/media/documents/CSTS_FS_Notifying_Families_After_COVID19_Death.pdf
When a Loved One Dies from COVID-19, Center for the Study of Traumatic Stress, Uniformed Services University https://www.cstsonline.org/assets/media/documents/CSTS_FS_When_a_Loved_One_Dies_from_COVID19.pdf
Cozza, S.J., Fisher, J.E., Hefner, K.R., Fetchet, M.A., Chen, S., Zuleta, R.F., Fullerton, C.S., & Ursano., RJ. (in press). Human Remains, Grief, and Posttraumatic Stress in Bereaved Family Members Fourteen Years after September 11, 2001. Journal of Traumatic Stress.