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Hospice NewsCare for Dying With Human Touch an Enduring Casualty of Pandemic | #hospice | #elderly | #seniors

Care for Dying With Human Touch an Enduring Casualty of Pandemic | #hospice | #elderly | #seniors

Never has there been a greater need for hospice care than during the deadly pandemic that has killed more than half a million Americans.

But 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 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 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 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’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 Covid-19 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.

Dan Wierzbinski

Dan Wierzbinski, suffering from multiple sclerosis, can’t get out of bed or walk. He relied on his 70-year-old wife after his hospice aide become ill with Covid. 

Source: Family

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.

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