Loss and Grief

HAVING LIVED IN Gary, Indiana, for some 60 of her 81 years, Carolyn Jean Williams' social network in the scrappy Rust Belt town was as deep as it was strong. So when she was hospitalized after a bad fall and a subsequent infection on March 13, Williams' network gathered at her bedside at Methodist Hospitals' Southlake Campus in Merrillville, Indiana. As they soothed her with the balms of presence, faith and touch, her son, Eric Deggans, rushed from Florida to her bedside.

Then, the COVID-19 pandemic stormed into town.

As coronavirus infections took root in Indiana and neighboring Chicago, Methodist banned all visitors to prevent transmission, says Deggans, a TV critic for NPR. The protocol, he says, was so sweeping – and abrupt – that hospital staff broke up an impromptu bedside prayer circle and escorted everyone from Williams' hospital room. A lifetime in the making, her network was shredded when she needed it most.

His mother, Deggans says, was heartbroken: "I didn't see her for four days."

As the U.S. nears its 123,000th death from an illness for which there is no inoculation, it's clear COVID-19 has altered the way we live: wearing face coverings in public, standing 6 feet apart in line at the store. But experts say the virus has also brought dramatic change for a painful situation as old as humankind: dealing with the end of life.

Amid a global pandemic, hospitals, funeral homes and palliative care facilities nationwide have made tough calls about visitations and mourning rituals, balancing the need to comfort the dying – and support the grieving – with the risk of spreading a potentially deadly contagion.

Some hospitals closed their doors to all visitors while others enacted tough new social distancing restrictions, limiting sickbed visitors to one or two people, even if the patient wasn't infected with COVID-19. A quick online search for guidelines turns up nearly as many rules as there are hospitals.

"Some hospitals are allowing one asymptomatic visitor for patients at the end of life, providing they do not need to self-isolate and can wear appropriate personal protective equipment," according to an editorial in The BMJ, an online medical journal. "But practice is inconsistent, and international consensus is lacking."

Nancy Foster, vice president of quality and patient safety policy at the American Hospital Association, told NPR "it is up to individual hospitals to set up their own protocols." Hospitals, she said, have been following guidance from federal, state and local officials.

"When possible, hospitals have worked to accommodate companions in the room for those who could not speak for themselves," she said, and have facilitated video or phone conferencing with family members and others.

The sudden changes, however, meant doctors, nurses and other caregivers instantly became intermediaries, relaying information – and sometimes emotional, heart-wrenching farewell messages – between loved ones and a terminally ill patient. It also pushed technology to the forefront: sterile, remote phone calls, text messages or Zoom group chats have become substitutes for a loving touch, a laugh, a hug or a kiss that could transmit the virus.

Social distancing has similarly disrupted funerals, an important social ritual to give closure to the living as well as to honor the dead, experts say.

Gone, for now, are the days of mourners shoulder-to-shoulder in pews, singing hymns, holding hands in prayer or weeping in one another's arms. Funeral directors and even some churches are restricting the number of people who can attend a memorial service; only a handful are allowed, and they're kept at appropriate social distance.

To compensate, ministers and mortuaries have turned to livestreaming funerals over the internet to friends and family who can't come in – a rare if not unheard of practice before the pandemic took hold.

Yet mourning remotely through video often triggers a "sense of emptiness," says Michael LuBrant, program director of mortuary science at the University of Minnesota.

"A virtual setting can engage the eyes and ears. What it can't engage are the other senses," he says.

In a virtual funeral, there's an invisible barrier: Mourners can't gather in communion, they can't smell flowers or the freshly turned earth of a grave, and they can't touch or hold one another. Those visual and sensory cues, LuBrant says, have been part of the grieving process for millenia.

Because the pandemic has cut in-person connections at the end of life, some of the bereaved feel "cheated" of the chance to say goodbye, LuBrant says. They see themselves and the deceased as "forgotten victims" of COVID-19.

To distraught friends and family, the changes may seem heartless. Data, however, suggests the restrictions in hospital wards and funeral homes are justified.

In the early days of the pandemic, health care workers accounted for around 20% of infections in some places. Funerals in Albany, Georgia, are believed to have fueled a wave of coronavirus infections in the area.

And while the protocols fly in the face of norms and rituals surrounding the dead as well as the sick and dying, most experts say social distance restrictions are already leading to permanent changes.

Sara Murphy, a professor at the University of Rhode Island and expert on death and dying, says more people are now realizing it's imprudent to put off end-of-life discussions, even for those not ill with COVID-19.

"I believe we are living in a real watershed moment," she says. The pandemic "will not allow us to be as death-avoiding or death-fearing, at least for some period of time."

Agreed, says Mark Krause, president of Krause Funeral Homes and Cremation Services of Milwaukee. For too long, he says, "death has been to us what sex was to the Victorians. It is culturally a taboo topic."

"We are definitely going to be talking about death more frequently," he says.

But having direct conversations about death doesn't necessarily make it less painful.

Dr. Raya E. Kheirbek, chief of the palliative care division at the University of Maryland Medical Center, says a deathbed Zoom call or computer-screen funeral "is never enough" to say farewell to someone who is loved. And with the virus surging again in places like Florida and Arizona as the nation slowly reopens, social distance rules in hospitals and funeral homes will likely continue indefinitely.

"There is no return" to the old normal, Kheirbek says. "Life as we knew it – it's gone for all of us."

Deggans ran headlong into that reality while arranging his mother's funeral, which was held at St. Timothy Community Church. The service was a cold comfort: Though his mother was beloved, with dozens of mourners asking to attend, social restrictions meant just 10 people could enter the sanctuary, including the technicians who were livestreaming the service.

"She was a member of the church choir for six decades," Deggans says, exasperation tinging his voice. "There was a ritual that her sorority wanted to do. People that she had taught, or who had worked with her, wanted to express their condolences."

While precautions are appropriate, Deggans says, the absence of contact in his mother's final days, and the social distance between her and the people who mourned her, were bitter pills to swallow. Yet he acknowledges the excruciating circumstances of his mother's death are probably the new normal for a while.

"You know, if you have somebody who's seriously ill because they have COVID, that's one kind of tragedy – not being able to visit them, or spend time with them," Deggans says. "But when somebody you love is seriously ill and they don't have that disease (but) you still can't visit them? That's especially difficult."