April 14, 2020 — At age 76, Bob Odrowski could still chase his grandchildren. He loved being outdoors and walked a lot. He kept a standing daily coffee date with his buddies — he called them “the boys” — at McDonald’s or Dunkin’. Several times a week he would swing by his daughter Tracy’s house in Canton, MI, to dote on his family, particularly 3-year-old Jestine.
On March 21, a Saturday, he called Tracy to let her know he wasn’t feeling well. He wouldn’t be able to come over on Monday, as usual. On Tuesday, Tracy took him some soup and a newspaper. He waved to Jestine from the window.
On Wednesday, Tracy called an ambulance for her dad. He wasn’t coughing that much or breathing hard, but he was confused and his skin color didn’t look right.
At the hospital, they put him on oxygen, first through a nasal tube and then through a mask. On Friday, the doctor called Tracy from her dad’s hospital room. They were at a crossroads. He could go on a ventilator in the hopes that his lungs would heal and start to work better on their own, or the hospital could keep him comfortable with medication: hospice care.
Bob told the doctor he didn’t want to go on the ventilator. Tracy pleaded with him to try it.
He said OK.
“I was hoping that my big, strong dad that I’ve always been so close with was going to make it through this,” she says.
Three days later, Bob, who had survived Vietnam, was dead of COVID-19.
In some ways, Tracy and her brother were fortunate. The hospital let them suit up in protective gear — a mask, gown, and gloves — to spend a few last moments with their dad, who was sedated on the ventilator. They didn’t want to take him off the machine before his children arrived, since taking the tube out can spread the virus.
As COVID-19 preys on older adults, patients and their families are making agonizing choices between a ventilator and hospice care. The supportive care offered by a ventilator offers some measure of hope of recovery. But patients on ventilators are also immobilized and isolated to prevent others from getting sick. Patients who go on ventilators and decline anyway — as 50% or more do — may face the prospect of dying without their families. And families may be robbed of a chance to say goodbye.
Patients’ Wish: Not to Die Alone
Leora Horwitz, MD, a doctor treating COVID-19 patients at New York University’s Langone Health, recently reported that two of her patients had chosen hospice care over a ventilator. The No. 1 priority for many, she tweeted, is “not to die alone in hospital.”
In New York City, MJHS Hospice and Palliative Care has seen what a difference it can make.
The hospice recently attended to an elderly woman with Alzheimer’s disease who had been living in a nursing home. Her two adult daughters had been coming to visit their mom daily. One would come in the morning; the other would come at night.
When their mom caught the virus, she was taken to a hospital and placed in isolation, which was agonizing for the family.
“At this point, their thought was Mom doesn’t know that there’s an epidemic going on. Mom doesn’t know that there are quarantine policies. Mom doesn’t know anything about physical distancing. All she knows is that her children had been coming and now they weren’t,” says Adam Schoenfarber, who is the social work manager for MJHS.
“So they made the decision to bring her back to the nursing home with hospice,” he says.
The woman died just a day after coming home, but she was able to be with her family. They were able to hold her hand and tell her goodbye.
It means everything to patients to be in their own bed, with their comforter on, with pictures of family members that are hung on the walls with nails and not taped up as they are in hospital rooms.
“When we can sit with somebody without a glove on our hands and brush the hair out of their face, that’s the big intervention. That’s the secret ingredient for this. We’re urging family members and staff to do as much of that as they can as safely as possible,” Schoenfarber says.
COVID Creates Challenges for Hospice Care
As important as it is, hospice care may be difficult for some COVID-19 patients to get. Faced with a shortage of protective gear for their staff, some hospices have declined to accept COVID patients. Others are simply at capacity and can’t take any more people into their programs.
“We are seeing more and more situations where we’re being asked to step in,” says Terese Acampora, the chief operating officer of MJHS Hospice and Palliative Care in New York City.
Many hospice programs received an influx of patients before the virus began to bear down on the U.S., as hospitals discharged patients to free beds. COVID-19 has only added to that load.
“We’re seeing a massive need for community-based care,” says Edo Banach, president and CEO of the National Hospice and Palliative Care Organization in Alexandria, VA.
At the same time, hospice organizations are finding themselves short-staffed during the pandemic.
Acampora says 40% of her field staff, who would be making visits to patients, can’t come to work right now. She says some are having child care issues, while others are sick, including some who have been infected with the new coronavirus.
If hospitals have struggled with a shortage of personal protective equipment, or PPE, for staff, hospice programs have been even further down on the list.
Banach says it’s a common problem nationally, too.
“They’ve had to go on the secondary market and get protective equipment from China or Home Depot or nail salons just to have enough gowns and masks to protect their employees.”
“It’s been forgotten that there are millions of people getting care in the home, and their caregivers need protective equipment, too.
The day Acampora spoke to a reporter by phone, she had two nurses to visit more than 100 patients.
“Every day, I have to look to see which staff do I have available to go in and see people,” she said. “It’s been a challenge.”
MJHS accepted its first COVID-19 patient in early March, she said, and would continue to take as many patients as it could.
Not everyone qualifies for hospice care. Under federal rules, patients qualify for hospice only if they have a terminal diagnosis and 6 months to live. And while hospice providers can provide medication and treatment to make a person comfortable, they don’t try to cure the disease. MJHS doesn’t consider COVID-19 — by itself — to be a terminal diagnosis. Its patients with COVID infections also have another condition, like cancer, that qualifies them for hospice care.
A Difficult Choice
In the wake of the new coronavirus, many families are finding it difficult to know when it’s time stop aggressive treatment.
For Tracy Odrowski, the decision to ask her dad to go on a ventilator still haunts her.
“I wonder if I made the right decision trying to put him on that in the first place,” she says. Tracy says no one in her family suspected he would decline so fast. They hadn’t talked about end-of-life plans.
He still had so many things he wanted to do. One of them was to get Jestine a new bike for the summer.
“I was kind of bummed out that he didn’t get a chance to get her that bike,” Tracy says. As she was going through his wallet, she found a receipt for a kids bike. She looked everywhere but couldn’t find it.
“The bike he had in the trunk of his car. That made me smile,” she says.
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