Even though vaccines have changed the trajectory of the coronavirus pandemic, a death toll approaching more than 550,000 has cast a long, dark shadow over all Americans. The months ahead will require us to carry an intense and a pervasive grief that is more acute and complicated than grief after death from other natural causes.
Recent research suggests that the full effect of this onslaught will not be known for some time. We will feel it with each empty chair at the table, a holiday with one less present to wrap or a birthday without the guest of honor.
“What we go through during the time of the dying and death of a loved one is fundamental,” said Ted Rynearson, medical director at Virginia Mason Medical Center’s Grief Services in Seattle. “Part of our identity is reworked.”
Unlike a natural death, Rynearson said, bereavement after a covid-19 death may be traumatically distorted by our enforced absence — not “being there” during the dying to offer an embrace of love and relinquishment.
“We are narrative- and meaning-seeking creatures,” said Rynearson, who is also clinical professor of psychiatry at the University of Washington. A death from covid-19 tells its own particular tale.
“The dying story is one of isolation,” Rynearson said. “The family can’t say goodbye in a natural and private interchange. They can’t hold one another — or be with one another at the time of death. They may be unable to separate themselves from the traumatic story of the way that their loved one died.”
There is, Rynearson said, “no pill for this. No medicine that helps with grief.”
Psychologists Sherman A. Lee and Robert Neimeyer recently surveyed more than 800 American adults who had lost a loved one to covid-19. What they found was alarming, they report in a paper just published in the journal Death Studies.
Two thirds of respondents described a grief that was anguishing, preoccupying and dysfunctional, in the sense that it seriously impaired their ability to manage their children’s needs, function in intimate relationships or perform adequately in their work roles.
What’s more, both the raw pain of their grief and their struggle with feeling impaired in these important social contexts were directly related to 10 specific “risk factors.” In a second study, Neimeyer and Lee identified those risk factors associated with the circumstances of the death, which they say include distress about their loved one dying alone, feeling isolated by social distancing guidelines, and being disappointed by the quality of the funeral or memorial service.
All of these factors contributed to what Lee and Neimeyer termed “pandemic grief” to acknowledge the unique challenges of loving and losing someone in the current crisis.
“It’s worth naming,” Neimeyer said. “Pandemic grief underscores the distinctive challenges that will show up in how people grieve.”
Neimeyer said the mourners they surveyed reported experiencing a grief so profound that it has become their central preoccupation. “It’s a sticky, heavy grief that doesn’t yield to the passage of time,” he said.
Neimeyer, director of the Portland Institute for Loss and Transition, said that covid-19 has violated our intrinsic urge to connect, to hold, to say goodbye. “There is a disruption or forgoing of ritual,” he said. “It’s a disruption of one’s world.”
That world includes the spiritual realm.
One of Neimeyer’s colleagues, a 30-year-old woman who wishes to remain anonymous, belongs to a faith-based community with prescribed rituals surrounding a death in the family — in this case, the death of her father. She is one of six siblings and the task of divvying up the 15 minutes allotted to the family (the amount of time the chaplain was allowed to stay in her father’s hospital room) fell to her. In January, the six children gathered over Zoom and, one at a time, following religious practice, asked their father for forgiveness as their mother looked on from her own small square.
“The last sense to go is hearing, and even though he was on a ventilator, we thought he could hear us,” she said. He died less than 12 hours later. “The one thing I didn’t get to hear was my father saying goodbye to me.”
Three months later, she said she is still in shock: “It’s been like an earthquake. It has dislodged things. Papers are thrown everywhere. The ground below me has cracked.”
In sorrow, she asked, where can people turn?
As the founder and executive director of Evermore, a Washington-based nonprofit group focused on advancing bereavement care, Joyal Mulheron is spearheading an effort to establish the White House Office of Bereavement Care. The first of its kind, the office would centralize and coordinate domestic response across federal agencies to bereaved individuals and families who are left behind from not only covid-19 but also suicides, overdoses, mass casualty events and police brutality, among other traumatic, unanticipated deaths.
“These Americans need more than our thoughts and prayers,” Mulheron said, “more than masks and vaccines.”
Mulheron said she regards President Biden, who has experienced the harrowing deaths of his first wife and two of his children, as the nation’s de facto commander in grief, although other presidents have had their share. “Biden could be the one to bring about real change and revolutionize the way our society handles death and bereavement,” Mulheron said.
“If we could coordinate government systems so they talked to one another,” she said, “we could change outcomes for survivors.”
A White House Office of Bereavement could do just that by serving as the central coordinating point, helping ensure Americans receive necessary support and legal protections.
“It could collect and analyze national data trends, understand mortality hot spots, act as a coordinating arm across agencies, ensure children or families are accessing benefits from federal programs like [the Supplemental Nutrition Assistance Program, Temporary Assistance for Needy Families or Social Security], coordinate response in the wake of mass tragedy,” she said.
Neimeyer said he supports the effort to establish an official office within the White House.
“At the moment, there are very few programs at the graduate level in any medical or mental health program where grief training is a significant part of the curriculum,” said Neimeyer, adding that the last major addition to the landscape came in 1969 with psychiatrist Elisabeth Kubler-Ross’s five stages of grief model, which has shaped (and limited) our collective understanding of mourning.
“There is a generation of children and young people who have come into greater consciousness during the pandemic,” he said. “For them and for all of us, what do we carry away from this? This crisis invites us to ask, what has meaning for me? Who am I? And whose am I?”
“Losing a loved one wrecks the sense of agency we have over our relationships,” said Allison Gilbert, author of “Passed and Present: Keeping Memories of Loved Ones Alive.” But Gilbert said she believes there is a difference between passively mourning and actively remembering.
“Death is always out of our control,” she said. “But what is within our power is taking steps to ensure the legacy of those we miss most lives on in perpetuity.” For example, listening to someone’s favorite music or cooking their favorite meal, she said, are important tethers to the past.
“What objects can you elevate in your home? A loved one’s handwritten letter paired with their photo,” Gilbert offered. “Take it out of that drawer or closet and give it a place of prominence.”
“Being proactive about remembering,” she said, “is essential to healing.”