Doctors and social workers trained to help the dying are facing special challenges ministering to the isolated victims of COVID-19 in a profession where that last human touch and contact is vital.
Concerns over contagion and shortages of personal protective equipment (PPE) mean physicians and social workers trained to care for the dying have, at times, been left to help frightened patients “transition” from the doorways of hospital rooms they’re barred from entering, or have set up Zoom conferences with grieving families and their passing loved ones, according to experts in the field.
“It’s certainly one of the most distressing issues we’re facing as providers,” said Dr. Gregg Vandekieft, a palliative-care physician at Providence St. Peter Hospital in Olympia. “It’s very hard on families at this very vulnerable time — there’s this momentous event, and there are restrictions. They can’t be there.”
The virus that causes COVID-19, called SARS-CoV-2, is very contagious and has been shown to live on some surfaces for days. It can easily spread when aerosolized in tiny droplets expelled when victims cough or sneeze.
The outbreak has taxed the health care system and may overrun its ability to cope as the flood of sick people peaks over the next few weeks, experts have warned. That stands true for the doctors, nurses and social workers who provide comfort care for the dying and their families, where shortages are already being seen.
“These are unprecedented times,” says a tipsheet from Social Work Hospice and Palliative Care Network (SWHPC), “Working with Families Facing Undesired Outcomes During the COVID-19 Crisis” that was recently crowdsourced and distributed to its members.
“There’s no road map. We’re facing conversations that we never expected — or wanted — to have,” it says, on topics almost unthinkable even in a profession where difficult conversations about the hardest topic of all — pending death — are routine.
“For example, it could be helpful to know what the decision criteria are for the distribution of scarce ventilators, etc.,” it says, acknowledging the health care system may be overrun by the sick and fall into “crisis standards of care,” where patients most likely to survive are given scarce resources and others are given comfort care only and allowed to die. Anticipating an overwhelming increase of sick people over the next several weeks, state health officials have been preparing.
While losing a loved one to a sudden illness is hard enough, having someone die in the hospital from COVID-19 adds insult to an already unbearable injury.
“It’s a double, even a triple whammy,” said Dr. Fred Buckner, an infectious-disease specialist who has been treating COVID patients in the intensive care unit at the University of Washington Medical Center.
First off, it’s a terrifying illness to have. It attacks the lungs, and every patient he’s seen so far suffers from pneumonia and is oxygen-deprived. “Having low oxygen just sets off all the alarms,” he said. “These patients are very anxious, very stressed, sometimes gasping for air.”
“So the first thing that happens is they’re put into an isolation room and everybody who comes in is in a hazmat suit. It’s frightening to people and worse for older individuals and those who have cognitive issues such as dementia,” he said. “And because they’re in isolation, they can have no visitors; they’re expected to get through this alone, by themselves, without their people.”
Even the doctors and nurses limit their trips into the isolation rooms, Buckner said, in an attempt to preserve scarce personal protective equipment (PPE). “So they might be in once or twice a shift,” he said.
And there’s this: “Once you’re there, there’s almost nothing we can do,” Buckner said of patients who are hospitalized. “The only treatments are extremely unproven. But we are offering them to some patients just to do something.”
Most people hospitalized with the disease survive. In the worst cases, the patient will require a respirator, but at that point Buckner said the outcomes have not been good. His first COVID-19 patient, an organ-transplant recipient from a local care center, died days after he was admitted March 4.
“We’re at the very beginning of this thing; the people we’re seeing today were infected a week or more ago,” Buckner said. An analysis by a colleague at the UW predicts the state will see daily increases in the infected and dead, peaking sometime in early April.
To deal with that expected surge, Vandekieft and other palliative care providers have been brainstorming ideas to work around the restrictions presented by the virus. Others are discussing ways to engage the families of the sick, and to suggest to the public in general — and particularly people vulnerable to serious COVID-19 infections — that now might be a good time to make your final wishes known to your family.
“This is a great time to talk to your loved ones about what you want,” said Bonnie Bizzell, who manages the “Honoring Choices” program, offered through the Washington State Hospital Association and Washington State Medical Association, which focuses on end-of-life issues. “It can be a positive experience, to talk about your joys, to talk about what brings you comfort.” Bizzell said there are roughly 120 palliative care physicians in the state, supported by nurse practioners and staff.
Vandekieft, the medical director for the seven-state Providence health care system’s Palliative Practice Group, says his people have been working toward “transitioning palliative care work to virtual encounters” and allocating resources supporting that move in anticipation of a rapid increase in the numbers of the sick and dying.
He says these methods can be effective. He said a colleague in California was able to arrange a conversation between a dying woman and her daughter while standing in the doorway of an isolation room. “She was able to have a pretty substantial conversation,” he said.
In another, a family connected with a dying parent using the computer videoconferencing application Zoom.
“Was it the same as having the family around the bedside? No, but human engagement occurred,” the doctor said. “People were able to say they were sorry. People were able to say goodbye.”