Hospice Is Supposed To Offer A Gentler End. But Coronavirus Patients Are Getting Turned Away

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Ubaldo Leone was born in Italy in 1934. He came to the United States as a young man, got married, raised six kids and a vegetable garden in Revere. Six years after his wife died in 2014, he moved into a small assisted living residence in Saugus. Like many people his age, he planned for the end. He made it clear that he didn’t want to be put on a ventilator.

So in April when Leone developed severe symptoms of COVID-19, it was time to bring in hospice care.

“We’ve had experience, at least three other experiences, with hospice, and all those experiences were good,” Ubaldo’s son, Ben Leone, recalls. “But for some reason, this time around, it just wasn’t the same.”

Ubaldo Leone and his wife Carmela. Leone's family had trouble getting him into hospice care after he got sick with symptoms of COVID-19. (Courtesy Ben Leone)
Ubaldo Leone and his wife Carmela. Leone's family had trouble getting him into hospice care after he got sick with symptoms of COVID-19. (Courtesy Ben Leone)

Leone wasn't allowed to visit his father at the assisted living facility, and it took nearly two days to find a hospice service to care for his dad. Then an order of oxygen, needed to ease his father's labored breathing, was delayed. Leone’s sister, Maria Misiano, remembers the oxygen taking over a day to arrive.

“I was literally like going online saying, ‘Where can I buy oxygen? Why is it taking so long for my father to get oxygen?’ ” she says. “It's bad enough we can't be there. And then, like, the last thing we wanted was for him to experience any more difficulty than he needed [to].”

The siblings were eventually given permission to visit their father, but in the end, they decided it wasn’t worth the risk of exposure to the virus. Ubaldo Leone died on April 11 at the age of 85, with a hospice nurse at his side.

“Just not being able to go in there and be with him [was] definitely the hardest part,” Ben Leone says.

The Rubin Home in Saugus. (Robin Lubbock/WBUR)
The Rubin Home in Saugus. (Robin Lubbock/WBUR)

One of the most heartbreaking consequences of the coronavirus pandemic is the way so many people are dying: alone, in hospitals, hooked up to machines. For those who choose not to undergo extraordinary life-saving measures, hospice offers a gentler end. But in the chaos of the pandemic, the hospice care industry is struggling to meet patients’ needs. Supply shortages, staff shortages, and isolation — problems that have hit hospitals hard — are impacting hospice services, too.

“We’ve had a couple of situations in which we were trying to get some of our patients into a hospice program, and we did kind of bang up against some obstacles,” says Dr. Alan Abrams, the chief medical officer for Perfect Health, a Massachusetts primary care practice that specializes in senior home care.

Abrams says that a number of his COVID-positive patients have been turned away by hospice services. Some programs aren't accepting patients with the coronavirus; some say they don't have enough staff. A few of Perfect Health's patients never made it into hospice at all. And delays in care can lead to suffering.

“An older adult, living at home, having COVID, being scared,” Abrams says. “By the time that the hospice program goes through their admission process, that person has already experienced a significant period of time ... of discomfort.”

That’s exactly what happened to Ubaldo Leone, who was one of Perfect Health’s patients. Abrams says Leone’s oxygen was delayed when his Medicare claim was rejected, because the physician had examined him remotely. In the end, the doctor had to re-examine Leone in person — at considerable risk to her own health.

“It's a scary thought to go into somebody's home knowing that they have this really, really contagious illness that nobody knows enough about yet,” says Molly Polansky, a nursing care coordinator at Good Shepherd Community Care, a nonprofit hospice and palliative care company in Newton.

Polansky is one of eight staff members who volunteered to treat only COVID-positive patients. She says the people with COVID-19 who enter hospice usually have terminal or chronic illnesses and have already considered the way they want to die. Mostly, her treatment consists of helping them breathe more easily with narcotics like morphine. She treats a lot of people at home.

“I think that’s the huge benefit, is staying in that familiar environment, where you’re comfortable and where the people who love you are,” Polansky says.

Good Shepherd has so far accepted more than 40 people with COVID-19 to its hospice service. Like many hospices, the organization has run into challenges finding enough protective gear and coronavirus tests for its employees. But until they run out of staff or equipment, they plan to keep taking patients.

This segment aired on May 6, 2020.


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Amelia Mason Senior Arts & Culture Reporter
Amelia Mason is an arts and culture reporter and critic for WBUR.



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