For his 60th birthday, Don Kelley had wanted to sing karaoke, but the bar in Brookline where he was celebrating with family and friends didn’t have it set up. So he slipped the band a hundred bucks and asked if he could sing a couple of blues hits. He did “Hey, Bartender," he did “Mustang Sally.” He always did “Mustang Sally.”
He lit up whenever he had an audience. His daughter Vanessa Kelley, 29, the youngest of his three girls, joked that he would have wanted a “medium- to large-size parade” when he died.
But there are no parades. The reality of dying of COVID-19 is that there aren’t even guaranteed hospital visits by family. One of the heartbreaking consequences of this pandemic is how it has ruptured the rituals of death and dying. We can no longer assume that our loved ones will pass away in their familiar homes surrounded by family and friends, that they will be eulogized at well-attended funerals, and that they will be buried or cremated with their beloveds standing witness.
Kelley, 61, who so much loved being around people, spent the final week of his life as a COVID-19 patient without family or friends beside him. The longtime Beverly resident was cared for around the clock by nurses at Lahey Hospital who did all they could for him, speaking to his family multiple times a day.
When it was clear that Kelley would not survive much longer, a nurse called his family and held the phone close to his ear. His organs were failing. He could no longer speak. His wife and daughters, miles away, whispered their goodbyes into the phone.
At the request of his eldest daughter, Sophie, a nurse played “Mustang Sally” from a computer’s tinny speakers.
“It was pure devastation,” said Sophie, who is 34. "All any of us wanted to do was just hold his hand.”
As the coronavirus ravages communities across the country, the mainstream American understanding of how a “good death” should unfold has been obliterated. Most victims of the virus spend their final days in hospitals alone. Though exceptions are sometimes made in the last hour of a person’s life, loved ones can’t enter hospital rooms because the chance of contagion is too high. If patients see anyone, it’s usually a nurse, dressed up like an astronaut in protective gear from head to toe.
With ordinary human contact necessarily at a minimum, music has become, for many, increasingly vital at the end. Some patients, intubated, tethered to ventilators, or too sick to talk, have found solace in favorite songs played from the personal cellphones of their nurses.
And even after death, the rituals are altered, the normal dignities set aside. In some places, bodies are double-bagged and stacked in refrigerated trucks on the street because hospital morgues are overflowing. Funerals are rare since Governor Charlie Baker banned any gathering of more than 10 people.
“Grieving practices are interrupted," said C.R. Lyons, the president of the Massachusetts Funeral Directors Association. “To save ourselves, we’re not able to gather together.”
No one wants to be an agent — a vector, as scientists say — for spreading this virus, which has killed more than 64,000 people around the world, more than 8,000 in this country, and more than 200 people in Massachusetts alone. And experts say the worst is probably still to come.
These days, health care workers are often the only people present at the bedsides of the dying. Already under enormous strain, those workers stand in as best they can for the spouses, children, and clergy who cannot be there. An ICU nurse at Massachusetts General Hospital described turning her patient’s bed to face the window so that she could see the sun streaming over the Charles. Nurses ask families what their loved ones would want to experience at the end: A certain song? A prayer? Poetry read aloud?
“And we create that in the room,” said Terry Hudson-Jinks, chief nursing officer at Tufts Medical Center.
Recently, Kelsey Conley, a 29-year-old ICU nurse at MGH, helped a patient’s family say goodbye. In full protective gear, Conley called the woman’s two adult children, and held an iPhone wrapped in a plastic bag near their mother’s face. The children told their mother that they loved her, that she could not have been a better mom. A clergy member offered a prayer for her and for them over the phone, and Conley played Adele, the woman’s favorite artist, from her own cellphone stored in her scrub pocket.
Then, after the respiratory therapist disconnected the woman’s ventilator, Conley was alone with her. That experience is new.
"I promised the children I would treat her as if she was my own mother,'' Conley said in an interview on Thursday, sitting in the family lounge of the ICU. Typically bustling, it was empty.
From Boston Medical Center to MGH, wards that were once filled with the chatter of family members are silent. At MGH, the "get to know me” poster boards that are typical in ICU patients’ rooms — covered with facts about patients, such as their favorite books and movies,photos of cherished pets — don’t exist anymore, because there are no family members to fill in their contents. Waiting room televisions play to empty seats.
“It’s very eerie to have such a full ICU without visitors,” said Avital Rech, a nurse manager in the ICU at Boston Medical Center.
Although health care workers can facilitate phone calls and playlists, they, too, are at a remove from patients, fully geared up in gloves, masks, gowns, and face shields to protect themselves and their families. And so the human connection that nurses can usually offer patients who are in pain and nearing the end of their lives is different now, too.
“They can’t see our faces. They can’t see us smile,” said Christine McCarthy, who has worked as an ICU nurse at MGH for more than 22 years. “They don’t have that reassurance they would normally have.”
Many nurses said that, though careful to wear gloves, they held patients’ hands at the end of their lives, to calm and comfort them, and to let them know that even though the world had turned upside down, and their time was near, they were not alone.
Visiting policies have changed rapidly at hospitals, and some, including BMC, Tufts, and MGH, have allowed one or two family members in some circumstances to put on protective gear and say goodbye in person to a loved one who is near death. But because of all the restrictions, those goodbyes have become strange and fraught experiences for family members, said Robert Elloyan, an assistant nurse manager at BMC. Patients who are dying from the coronavirus are usually on ventilators, often turned on their stomachs to make it easier on their lungs. They can be so sick that they are difficult to recognize.
Still, for some people, getting to be with their family members in person, even while wearing full protective gear, is the best death they can hope for right now.
Anup Singh Ghai was 71 when he entered Berkshire Medical Center last month. A retired electrical engineer, he had moved his family from New Delhi to Massachusetts in the late 1990s and settled with his wife and four children in Pittsfield. Even after he was admitted to the hospital with COVID-19 symptoms, he had hope.
“The high spirits of all of you have boosted my spirits to great heights!” he wrote in a text message to his family soon after he arrived. “I do believe that very soon I will become hale & hearty to join you all in our happy family!” He sent a reassuring video of the private hospital room where he was staying.
But the next day, his condition deteriorated and he had to be sedated and put on a ventilator. His daughter, Samta Ghai, who was visiting from New York City, and his wife of almost 35 years, Rita Ghai, were not able to visit him because the risk of infection was too high.
But then at 10:30 on a Saturday night, Samta got a call from Berkshire Medical Center: they should come over now.
Samta sped to the hospital with her mother, running red lights on the way. She ran upstairs to the ICU, and she and her mother donned the protective gear that has become all too familiar to those who are dying.
“They were trying to revive him,” Samta said of the last moment she saw her father. “ ‘Papa, wake up, wake up, I’m here,' ” she recalled saying. " 'I’m here, I love you so much.’ ”
But her father, the first Berkshire County resident to die of COVID-19, could not be revived. When he stopped breathing, his doctor looked rattled, Samta said.
There were further blows to follow. The Ghai family could not gather for the cremation, a traditional Hindu ritual. As a consolation, the funeral home director told them that if they stood in the parking lot of a restaurant across the street from the medical center, they could see Ghai’s body carried out of the hospital.
And so they stood in the parking lot of Vong’s Thai Cuisine, a place they never imagined would be the site of their grief, holding hands and praying. When Ghai’s body was taken away to be cremated, his family did not follow. Instead, about two dozen relatives from around the world watched the cremation over WhatsApp.
“It’s not just losing a family member," said Samta, who later tested positive for the coronavirus along with her mother. “It’s the process, and how they died. And how you couldn’t even do a funeral for them.”