Never has there been a greater need for hospice care than during a deadly pandemic.
But in the U.S., COVID-19 has disrupted almost every aspect of comforting the terminally ill at the end. Even as vaccinations roll out across the country, the system remains under unprecedented strain. As infection rates and hospitalizations plateau and, in some regions, rise after months of improvements, pressures on hospice care are unlikely to ease anytime soon.
“We’re preparing for another wave,” said Melinda Gruber, president of the Caring Circle hospice provider in Michigan, where COVID-19 hospitalizations are climbing again.
Hospice organizations are struggling to retain staff as workers, many of them women, stay home to shield their families from infection or to school housebound children. Families of some patients find they get little more than drugs and instructions from providers hesitant to let workers spend more than a few minutes inside someone else’s home.
When states started locking down their economies last spring, the number of people employed in home health care of all kinds dropped 7% from March to April, according to the U.S. Bureau of Labor Statistics. It remains about 3% below pre-COVID-19 levels.
“At our size, every bit counts,’’ Gruber said, noting her organization has about 7% of its positions open. Losing “two nurses and four aides is a lot.”
Workers making visits day after day often find they can’t provide the personal care essential to their mission. Holding a patient’s hand isn’t the same through a glove, even when that’s possible. Some hospice organizations have banned hugging grieving relatives, the kind of small-but-human act at the job’s heart.
“I just don’t feel like I’m doing hospice nursing,” said Kathy Chludzinski, who works in the Seattle area. “I just can’t be a hospice nurse, it seems, in this time.”
Chludzinski, a 25-year veteran, must now care for many patients over the phone and keep in-person visits under 10 minutes. COVID-19 makes being present to ease a patient’s and family’s transition to death almost impossible, and hospice providers in her area are scraping for staff.
Unemployed people aren’t rushing to fill the physically and emotionally draining jobs. Some positions pay well, but less-skilled home health aides, who often lift and wash patients, and change bedding and diapers, can make as little as $9 an hour.
“Amazon can pay better,’’ said Edo Banach, chief executive officer of the National Hospice and Palliative Care Organization. “If you can get paid more per hour for delivering a box than for really intensive, hands-on care, it’s a challenge keeping people.’’
Hospice worker Rosalinda Aguilar, 63, used to hold down both full- and part-time jobs in San Antonio, Texas. “Most of us need to work two jobs because we can’t make ends meet,’’ she said, speaking Spanish through an interpreter.
Earlier in the pandemic, Aguilar took every available shift. The patients needed her, she said, and she needed the money — even if was just $9 an hour. By November, the nonstop work was taking a toll on her own health, and she quit, picking up some free-lance hospice work for $10 an hour and cleaning a veteran’s clinic. Now she’s starting as a hotel housekeeper for $15 an hour.
“I don’t even know how I’ve survived the pandemic,’’ Aguilar said. “It’s very painful because our seniors constantly cry for their families. Some have dementia and don’t really understand the pandemic.”
Hospice providers have tight budgets in the best of times, many of them operating as nonprofits reliant on donations. The work is decidedly unglamorous. Yet it is also a profoundly essential service.
“Hospice organizations struggle with staffing ordinarily, because there aren’t enough nurses and physicians and physical therapists to go around,’’ Banach said. “Then you throw on top a pandemic.”
COVID-19’s arrival forced hospices to immediately rethink their procedures. Home visits suddenly required a full space suit of gown, gloves, mask, face shield, even bootees — if supplies could be found. Gruber remembers fielding a desperate call in the pandemic’s early days from the head of a smaller hospice pleading for any protective equipment she could spare.
“We were counting things out by the day, like, could we make it tomorrow?’’ Gruber said.
Hospice providers pride themselves on never turning away a patient or family. But the pandemic has inevitably altered the kind of care they can provide. Many nurses are still forced to do check-ins via FaceTime or phone. Family members in some cases are deputized to do the difficult work home health aides would have done before.
Beverly, whose family asked that her last name not be used to protect the privacy of her final hours, was diagnosed with the coronavirus in November. She was already suffering from dementia and chronic obstructive pulmonary disease. Not wanting her to die alone in a hospital, her family called a hospice service for help caring for her at home in Sequim, Washington.
But her daughter and son-in-law also had the virus. So her granddaughter April O’Donnell flew in from Virginia to help, because the hospice refused to send anyone into the house. A nurse arrived in full protective gear and stood at the entry to Beverly’s bedroom instructing O’Donnell how to check her grandmother’s blood pressure, oxygen and hydration levels. O’Donnell cobbled together her own protective suit, lifted Beverly when needed, kept her clean, decided when to give her morphine and how much. Beverly died at the end of the month.
O’Donnell was grateful she was able to help her grandmother in the final moments of life, even if it took a terrible toll. “I’ve suffered loss in my life and been through some tough situations, but this was probably the worst thing I’ve gone through,” she said.
Stories like that are proliferating around the country. Dan Wierzbinski is in home hospice care with multiple sclerosis in a Chicago suburb and can’t move from the waist down. MS is a slowly progressing but ultimately fatal disease. Some days he has difficulty communicating his thoughts and his words come out slurred, said his daughter Kindall Wierzbinski. His wife is 70 and is still working to pay off his medical bills.
In January one of his nurses came down with COVID-19, and the service refused to send a replacement for 10 days, fearing that couple might also have been infected. Wierzbinski’s wife had to do the best she could.
“She can’t lift him,’’ Kindall said. “She’s a strong Italian woman, but she’s not 40 anymore. She’s had to play nurse.’’
Vaccines may soon ease some of the burden on hospice care workers and the families who depend on them, but the pandemic is far from over and new variants are emerging. Hospice providers want a return to what Gruber calls “high-touch, high-love” care. But some techniques adopted under duress may last.
That may not be all bad. Terri Warren, chief of hospice and palliative services for Providence Home and Community Care, recalls a patient in a skilled nursing facility near Seattle who couldn’t meet with her three adult children after the facility locked down. One told the hospice chaplain that their mother had always wanted to visit the Vatican’s Sistine Chapel, so the chaplain arranged a Zoom tour for the family to take together.
“The comfort that brought, the connection that brought, was very profound,’’ Warren said. “The memory of the smile on their mother’s face when she saw the ceiling of the Sistine Chapel up close was incredible for them.”
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