Dying during Covid‐19

Abstract

I had been on the phone with Madeleine's mother for fifteen minutes, and she had sobbed throughout. She pleaded with me, “You won't even let our family visit her together. If you really want to help my daughter, you will let us stay with her.” Madeleine, who was twenty‐four years old, was dying of end‐stage acute myeloid leukemia and was intubated in one of our intensive care units. Her intensivist had requested a clinical ethics consultation for potentially inappropriate medical treatment—in my world of clinical ethics consultation, routine stuff. Except that, in March 2020, nothing was routine anymore. The Covid‐19 pandemic calls for creative thinking about ad hoc and post hoc bereavement efforts, and it may result in efforts to revise existing accounts of what constitutes a good death in order to accommodate patients’ and families’ experiences at the end of life during a pandemic.

in practice

Ma'am, I assure you I am not calling to try to convince you to ‘give up’ on your daughter and let the doctors ‘kill her.’ I'm not trying to push you to make any decisions. I reached out to you to try to gain some insight into what Madeleine ¹ would say she wants to do, if she could speak to us right now.” I was on the phone with Madeleine's mother. Madeleine was twenty‐four years old. She had been an engineer. Now she was a cancer patient. Madeleine had end‐stage acute myeloid leukemia and was intubated in one of our intensive care units (ICUs). She was dying. Her intensivist had requested a clinical ethics consultation for potentially inappropriate medical treatment—in the world of clinical ethicists, routine stuff. Except that, in March 2020, nothing was routine anymore.

I had been on the phone with Madeleine's mother for fifteen minutes, and she had sobbed throughout. Even through the phone, I could hear her splintering. She pleaded with me, “You won't even let our family visit her together. If you really want to help my daughter, you will let us stay with her. Can't you do anything? Don't you have anything to say?” I was lost for words. Should she, Madeleine's father, and the rest of Madeleine's loved ones have been able to visit her? Absolutely. Should we have lifted the strict Covid‐19‐related visitation policies? Absolutely not. I mumbled a feeble reply about passing along her request to the unit manager. Madeleine's mother snorted. We both knew what the unit manager's response would be.

I am confident that, in normal circumstances, Madeleine's family's bereavement would have been what experts call “complicated grief,” or persistent complex bereavement disorder. Now I fear it will be unbearable. This is true of individuals and communities around the globe who know someone who is dying or has died during the Covid‐19 pandemic. People are being prevented from attending funerals, crying together, and holding each other in a time where being able to do so feels more essential than ever. We are grieving in isolation—something that comes close to an oxymoron in many cultures, where mourning is a shared, social practice. A spike in Covid‐19‐related prolonged and complicated grief is itself a potential public health crisis. On the impact of the 1918 influenza pandemic, Nancy Bristow writes, “Though the country moved on, and expected the epidemic's victims to move on as well, countless Americans continued to suffer their losses and their grief in the decades that followed, a reality likely made worse by their culture's failure to acknowledge it” (see “‘It's as Bad as Anything Can Be’: Patients, Identity, and the Influenza Pandemic,” published in 2010 in Public Health Reports). The need for timely access to mental health services has rarely been more pressing.

The Covid‐19 pandemic is therefore an opportunity to think creatively about ad hoc and post hoc bereavement efforts. In a 2004 Palliative Medicine article, Ian Yi‐Onn Leong and colleagues note that bereavement and traditional mourning rituals were similarly truncated during previous epidemics. As discussed in the NPR story “Alternative Mourning Rituals Offer Comfort and Closure during an Outbreak,” in the wake of the Ebola crisis, a group of psychologists and counselors in the Dominican Republic of Congo developed an alternative burial program that helps families to find closure. There are lessons to be learned from their program, which has three steps: first, mourning family members gather at a place of their choosing, where counselors then introduce the program and give people the opportunity to ask questions about the virus and the death of their loved one. Second, as a substitute for the dances and songs that are traditionally part of burial parties, families come together to share stories about the deceased, using photographs, prayer, music, and letters. Third, families are invited to create a living memorial where people can mourn and remember by picking a different yet special place for planting flowers and trees—a culturally crucial part of burials. During the Covid‐19 pandemic, people are now live‐streaming funerals; physicians and chaplains report using speaker and video chat functions to allow families to say goodbye to their critically ill loved ones and to deliver patients their last rites—the first wave of a new era of “e‐mourning.” Short‐term and sustained changes to mourning practices, meaning making at the end of life, is one way in which the pandemic may impact how we think about what it means to have a good experience with death.

The pandemic is also directly affecting patients themselves. Being provided with consistent, compassionate, culturally sensitive, and well‐coordinated end‐of‐life care is often understood as part of a good death. Yet during much of this pandemic, health care practitioners have not been able to help facilitate a good death, so conceived. Physicians in epicenters such as New York and Italy report facing away from patients during consultations. Others have reported that the simple act of holding a patient's hand and accompanying them in their final moments has become an ethical and logistical nightmare.

The pandemic has constrained the ability of palliative care physicians, chaplains, and social workers to do their work and is disrupting the timely transfer of patients to hospice care.

As Madeleine's family spent very little time with her, their perception of her pain was very different from the clinical care team's. The team felt that Madeleine's pain could be better managed, but her family expressed some disbelief over the seriousness of her condition—it was hard for them to accept her terminal diagnosis with so little face‐to‐face contact. They expressed a desire to see her, but they had no choice or control over whether and how they could do so. Her family was given little time or space to say their goodbyes. Madeleine's family struggled to understand why their daughter's experience should be affected by a condition that she didn't have. This stonewalled decision‐making.

Madeleine herself had no opportunity to participate in end‐of‐life planning, but even if she had, many of her wishes probably could not have been realized, given the contingency conditions in place. While some patients lack the cognitive awareness to appreciate these changes, others may experience serious and prolonged suffering because of them. Having adequate pain management, being accompanied at the time of death, exercising choice over the location and other circumstances, being able to determine who will be present, having time and space to say one's goodbyes, not feeling like a burden, and leaving behind a meaningful legacy are also commonly identified features of a good death. Realizing these features of good end‐of‐life care can pose a challenge in the best of times; against a backdrop of inundated ICUs and makeshift morgues on the streets, the notion of a good death, so conceived, has seemed almost impossible.

These changes may result in efforts to revise existing accounts of what constitutes a good death in order to accommodate patients’ and families’ experiences at the end of life during a pandemic. The primary motivation for changing how we think about a good death in times of crisis is a psychological one—accepting that many, many people die a “bad” death during such times is a hard pill to swallow. Alternately, this experience may cement existing accounts of what constitutes a good death. This could result in increased recognition of the importance of good end‐of‐life care and bereavement support, which have been shown to aid grief processes and familial acceptance. In addition to normalizing unconventional ways of mourning, in the wake of the Covid‐19 pandemic, we may see expansions to palliative care, chaplain, and social work services and a newfound awareness and appreciation of opportunities to plan for and shape our experiences of dying.

Ultimately, Madeleine wasn't alone at the time of her death. When her physicians determined that Madeleine's death was imminent, her mother and father were allowed to stay with her. I can imagine commentators saying something seemingly poignant like, “In the end, we all die alone.” That may well be true. I don't really care. Because the modality of our dying matters to those who survive us. Is a good death something we can recreate, or recapture, after the fact? Only time will tell.