When We Can’t Say Goodbye — Loss, Grief, and Dying During the COVID-19 Pandemic
By Holly Nelson-Becker, PhD, LCSW, ACSW, DCSW, and Ann M. Callahan, PhD, LCSW
Social Work Today
Vol. 20 No. 5 P. 14

We are living in a difficult time during which death can no longer be hidden and psychologically sent to the distant future. It is here and it is now. Since the COVID-19 pandemic began, it has been necessary to grapple with our shared risk for illness and death.

Illness—as well as rumors of illness—can leave us frightened. Although death projections relative to population size are currently low, it is not easy to predict who and how many will become ill. Although some, such as older people and those with compromised health, are at greatest risk, it is not always clear who will be able to successfully overcome COVID-19.

How do we understand and manage our thoughts about death? How can we prepare for our own and the deaths of others for whom we care deeply? How can we communicate at times when our clients, significant others, or friends are dying? Finally, how do we say goodbye in haste or cope when we cannot?

Family interaction patterns, including proclivity or reluctance to discuss death plans, and social positioning in the generational hierarchy or lineage make a difference in comfort levels in terms of death talk and death preparation.

This article addresses three complementary aspects of death and grief: death and loss for the one who is dying, death and loss for the person mourning, and death and loss for communities. Each section is informed by public health guidelines, statements by professional organizations, and peer-reviewed research. These ideas are further based on personal experiences and the accounts of others dealing with grief.

Finally, given the need for protective measures to ensure the health and safety of social workers and clients, this article assumes reliance on technology to mediate service delivery.

Death and Loss for the One Who Is Dying
The most common image of a good death in Europe dates from the Middle Ages when death was accepted as a natural part of life. Infant mortality was high, as was the risk for death due to disease, famine, and war.

A good death was idealized as a dying person on a bed surrounded by loved ones and preserved by faith. The dying person did not suffer nor was she surrounded by people wearing personal protective equipment in an alien environment. Although COVID-19 presents new challenges, social workers can draw from traditional methods to support clients and their families.

Beyond the end point of a life well lived, a good death can be a means of healing. The period of time preceding death allows for opportunities to seek emotional closure. When decline is swift, as is the case with COVID-19, social workers can move quickly to support closure. One aspect of closure is to say goodbye, but how can we say goodbye to a person we have known and loved? Is there ever enough time? How can we say goodbye as we lay dying? Being ready to respond starts with addressing the universal fear of death, including the potential for not being physically present when those we have known and loved die.

We fear death because we fear the unknown. We do not know what death will ask of us. In normal times, if we think of it at all, we hope our deaths will be quick and painless. Unlike most illnesses, there is not a uniform trajectory with COVID-19. What seems to be improvement can turn into rapid decline. Medical intervention is necessary to provide symptom relief specifically related to difficulty breathing, known as dyspnea. Those who die with dyspnea can be made comfortable with medications that blunt their response to decreasing oxygen and reduce their anxiety. It can be a quick death with little pain, as the dying person slips into unconsciousness.

We fear death because of our attachment to people, things, and situations that bring us joy. It is hard to let go and to understand that all we are resides within us—not in what is outside. The culture of materialism runs contrary to the social work value of people and relationships. Instead, we value what we have, what we own, and what we want to own, not recognizing that our worth lies in what we have done and who we have grown to be.

This pandemic creates an opportunity to right wrongs and wrap up the loose ends of our lives; however, closure may be unrealistic without professional help, even in normal times.

Communication
When the consequences of choices made by others result in harm, it is natural to struggle with finding closure. It’s not always possible or appropriate to seek forgiveness when the end of life comes. Sometimes people deny or cannot admit the pain they have caused. Such harm cannot be undone in hours, weeks, or even months. Nevertheless, social workers can help clients review life and find some means for closure, which offers the potential for reconciliation and peace.

Where communication is possible, use the following questions to help inspire action:

• Are the dying person or loved ones fearful? If present, help them slow anxious breathing and breathe together slowly. If the person can speak over the phone, ask him or her what will help.

• Is practical or physical help needed? For example, is there concern about someone else being cared for such as a younger or older relative? If possible, offer to ensure that person will be referred for assistance.

• Would a specific item such as a photo or a blanket provide comfort? Determine whether something meaningful may be safely brought to the hospital and sanitized.

• Is emotional help needed? What emotional support can you provide? Help the dying ease depression or anxiety through cognitive restructuring or meditation. This may involve imagining together their preferred place of peace or freedom.

• Is social support available but not present? If not, help facilitate contact.

• Can new memories be created? Share pictures or notes by screenshot. Sing a favorite song to the dying individual or play an instrument for them. Try reading the words of a favorite poet or inspirational text.

• Are there specific people the dying person wants to say goodbye to? Provide help in contacting them. Alternatively, document the dying person’s thoughts for the absent person.

• What spiritual support might be needed? Listen and bear witness to their concerns and struggles with what will happen to their body, their mind, or their soul. If there is time, call a religious leader from their faith community or facilitate virtual participation in a spiritual group or religious practices. Have religious/spiritual items that provide comfort nearby.

• Is the dying person afraid of dying alone? Explain that health care workers are there because they want to help. They will do what they can to provide comfort and care. Help them connect with people they have known and those they have loved. Ask the person dying to imagine themselves surrounded by loved ones, even those who have died before.

When oral communication is no longer possible, the following actions may assist:

• Ensure the person is as physically comfortable as possible. Attend to body signs. For example, wipe sweat from brow, provide a blanket if needed, and ensure the body is in a comfortable position.

• Speak of a life well lived. We understand that people who are dying are able to hear long after they can no longer speak. Speak whatever encouragement you may provide as long as it is true to what you know.

• Encourage loved ones to speak to the dying person via telephone.

• Guide loved ones to any meaningful act. These may include a prayer for the dying person, positive thoughts sent out into the universe, listening to their loved one’s favorite song—anything to decrease anxiety at not being able to be physically present.

Death and Loss for the Mourner
Under ideal circumstances, both the dying person and the anticipatory griever are afforded the time and space they need to experience final moments together. This can facilitate closure; however, a loved one may die suddenly or the person grieving may not be present when a loved one is dying given the risks associated with COVID-19. Unknown conditions surrounding the death can leave concerns and questions about how a loved one died. A griever may ask: Were they aware they would die? Were they afraid? Did they suffer? Was anyone there to comfort them?

After a death, it is customary to honor the life of the loved one, how that person affected the person mourning, and what was learned through their connection. Again, the lockdown and intercontinental distance within families during COVID-19 as well as other barriers can further limit this opportunity for closure. It is possible that a mourner may feel a sense of unreality surrounding the death indicated by questions such as: Did this really happen? Did this person die? Was it a notification or identity error? Was it someone else who died? These questions can be answered but do not transcend the weight of opportunities lost.

The mourner may continue to have questions about the conditions surrounding their loved one’s death. They may seek escape from what feels like overwhelming emptiness and yearn for a future they assumed would include their loved one. This may be the most painful loss the person mourning ever experienced. It is true that life is forever changed and processing grief will take time, but in the small and large interactions of daily life, the pain will typically lessen. There are new spaces to inhabit where memories and a felt sense of connection replace emptiness as healing occurs and love remains.

It is natural to struggle with grief; however, these extraordinary conditions can lead to difficult questions and feelings that require more time and, perhaps, bereavement support to process and heal. A person in mourning may find fault in themselves and experience guilt for not being physically present during or after a loved one’s death. The lethality concerns of coronavirus and risks for contagion may have limited the person’s mobility. These governmental- and organizational-led limits on personal contact may help ease survivor guilt. Still, self-forgiveness can be challenging, especially if the person in mourning contributed to passing on the virus to the person who died.

At the root of serenity is acceptance and humility in response to what cannot be controlled and controlling what can be, even if the only choice is to seek control over how one copes with loss. Social workers can determine whether the person in mourning needs clinical intervention due to complications. Persistent complex bereavement disorder can cause sufferers to feel extreme yearning for a deceased loved one as described in the DSM-5, and known as prolonged grief disorder in the 11th Revision of the International Classification of Diseases.

Grief and Persistent Grief
Social work intervention starts with an assessment of the person who is mourning. This can be a simple global scaling assessment (“On a scale of 1 to 10, with 10 being the best you have ever felt, how are you feeling today?”) or it may be a more formal grief assessment. Although it is beyond the scope of this article to address, there are many excellent tools available. Suggestions for assessment include the following:

• Listen for areas and themes of concern to the mourner.

• Explore the nature, the circumstances, and the meaning of the loss. For example, a social worker might reflect on issues such as: What practical, emotional, and social needs does the person in mourning have? What prior losses are triggered by this loss?

• Encourage the mourner to speak with other family members or significant others who have encountered the same loss. Share thoughts, feelings, and memories together.

• Especially if complicated grief appears to be present, help the person in mourning explore their thoughts and emotions when they feel safe to do so. Considering and expressing their thoughts, as well as identifying the emotions they feel, can help the mourner begin to resolve complex feelings. These may include “unacceptable” emotions such as anger at the person for dying. (“How can you be angry at someone for dying?”)

• Improve coping skills. For example, suggest the mourner take a break from his or her grief. Encourage the person to lose themselves in an enjoyable activity. The grief will be there to pick up again later. As one begins to lengthen the times between intense grief, they discover they can begin to live again in the spaces.

• Assess for and help reduce feelings of blame and guilt. A key therapeutic means for doing this is through cognitive restructuring. Help the person mourning test the reality base for blame and guilt and understand this death in the larger societal frame of risk.

• Help the person mourning prepare a ritual of personal importance. The ritual should incorporate sensory aspects of sight, sound, smell, and touch to help the person mourning enter a different type of liminal space for grief resolution.

• When it is safe to gather and following local guidelines for small groups, conduct a memorial service that is recorded and/or livestreamed. A candle-lighting ceremony could be held together or separate at the same time with readings, music, and the sharing of memories.

• Coach the person in mourning through a gestalt process such as the empty chair technique in which grief persists and the immediate crisis period is resolved. This involves two chairs, with the person mourning seated in one of them.

- Bring the deceased person into the here and now through vivid reimagining.

- Invite the person mourning to observe what it feels like to sit with the deceased.

- Invite the person mourning to speak with the deceased, sharing appreciation or regret.

- Invite the person mourning to turn the monologue into a dialogue by switching chairs and responding based on what the deceased person might have said.

• Contact the Substance Abuse and Mental Health Services Administration’s national helpline (1-800-662-HELP, ext. 4357) for 24-hour-a-day assistance with referrals to local support groups, community-based organizations, and treatment facilities.

Death and Loss for Communities
The changing dimensions of this pandemic and its pervasiveness underscore the need to broadly address preparedness for unexpected illness and sudden death. Many deaths now violate normative expectations, leaving a need for sensitivity to possible trauma in those who grieve. Although few of us are ready for death, we can prepare for death and help others do the same through advance care planning or death preparation classes.

Perhaps death preparation can be part of a standard health or community education initiative. If nothing else, this pandemic highlights our basic human need to make peace with death and live with the heightened awareness of life’s brevity. Although life’s circumstances can be harsh, there are things we can appreciate. One simple yet powerful act is to recognize the value of relationships and invest in them.

These sensitive, unsettled times can be improved simply by caring for each other. Our care for each other can offset the pain of loss despite geographic bounds.

Worldwide uncertainty and change constitute a defining experience with consequences that will transcend generations. This pandemic offers lessons in loss, grief, and death that may lead to improved social policy. It underscores the need to build protective factors on a global scale through more prominent discussions about support for those who are dying and those who are mourning.

Within our collective geopolitical and sociocultural responses lie emergent strategies that can lead to larger global advancement, especially when effective local responses are widely publicized and replicated. This time can help us as individuals, families, and communities identify places of strength, resilience, and restoration.

Social workers are part of this process as we draw from professional skills and shared humanity to gracefully help clients process the experiences of life and death.

— Holly Nelson-Becker, PhD, LCSW, ACSW, DCSW, is a professor of social work, gerontology, and palliative care and social work division lead at Brunel University London and holds a Visiting Scholar affiliation with Loyola University Chicago. She is the author of Spirituality, Religion, and Aging: Illuminations for Therapeutic Practice, 2018, Sage Publishing.

— Ann M. Callahan, PhD, LCSW, is an associate professor of social work and master of social work program director and online coordinator at Eastern Kentucky University in Richmond, Kentucky. She is the author of Spirituality and Hospice Social Work, 2017, Columbia University Press.