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Wrenching choices in home health care

Wrenching choices in home health care

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Annie Kelleher, 61, who has terminal breast cancer, still has health aides come to her Canton, Conn., home despite concerns about the virus. “They are so fundamental to my well-being at this point,” she said. “Even though I have a husband and he’s wonderful, they help me with things that he can’t.”

Annie Kelleher has been making tough medical decisions for years now, ever since she was diagnosed with terminal breast cancer.

The coronavirus pandemic pushed another major decision onto her shoulders: Should she continue to welcome into her home the health aides who help her survive, even though they could be carrying the virus? Or should she eliminate all possible carriers of the virus and hope her husband can bear the load instead?

“They are so fundamental to my well-being at this point,” said Kelleher, 61, of Canton, Conn. “Even though I have a husband and he’s wonderful, they help me with things that he can’t.”

Thousands of Americans have faced a similar dilemma in the weeks since COVID-19 paralyzed the nation, forced to choose between isolating themselves to guard against contracting a potentially fatal disease and continuing to receive the much-needed help of home health workers. Some of those aides are providing medical treatment, which means their services are regulated by Medicare. Others are providing more personal assistance as part of noncertified services that are similarly crucial to those who require them.

Home aides in both categories are caught in a conundrum. A recent survey conducted by the National Association for Home Care and Hospice found that 42% of home health aides were treating patients who had tested positive for COVID-19. But concern also lies in the unknown. Inconsistent testing means patients and their caregivers often live with the fear that the other is harboring the virus.

Unlike health care workers affiliated with hospitals or other practices, many home-care aides have not been given personal protective equipment. Many have no office or agency infrastructure to provide testing for the virus. If they continue traveling from place to place, seeing patient after patient — particularly without the personal protective equipment they need — they risk contracting the virus and bringing it home to their families. If they do not, they will be out of work.

“The workforce issues stem from a lack of PPE,” said Kevin Smith, chief executive at Best of Care, a home health agency in Massachusetts. “If an aide doesn’t feel safe, he or she is not going to want to go to work. And who can blame them? They’re often going into homes where they don’t necessarily know who has been there the day before, let alone the hour before.”

The dangers faced by those on both sides are real and urgent. One of Kelleher’s trusted aides, Lessie Wilson, called and reported that she needed to take some time off. Her husband, Leroy Wilson, had tested positive for the virus. A few days later, after 40 years of marriage and raising seven children, he died at age 77.

Lessie Wilson returned to work for Kelleher after she had been quarantined in accordance with agency protocol. She works for an agency that assigns direct-care workers to patients and that has instituted protocols to clear potentially infected workers before they return to work. But not all direct-care workers are affiliated with agencies; Kelleher’s other aide, who spoke on the condition of anonymity because of privacy concerns, finds clients herself. Those patients must trust her to take her own precautions, and she must trust them to take theirs.

Emilia Adnès-Maxwell had hired workers from one such agency to care for her mother at her home in Eustis, Florida. Barbara Koski Maxwell, 94, was beset with dementia. Adnès-Maxwell had promised her mother that she wouldn’t place her in a nursing home, so when Koski Maxwell started needing constant care, her daughter took her into her home. When awareness of covid-19 began to spread, Adnès-Maxwell, who is dealing with her own immune deficiency condition, worried about the risks of having multiple workers enter her home, particularly because some of them visited patients in nursing homes or hospitals. She asked her agency to provide the same workers, day after day, to mitigate those risks.

But her mother was visited by many unfamiliar faces, and rarely the same one twice. Some had homemade masks. Some were rationing PPE at the direction of their employer. So Adnès-Maxwell asked that the home health aides stop visiting and instead just drop off the necessary supplies. She said she could “see the fear” in the aides’ eyes. She shared it.

”I was scared,” Adnès-Maxwell said. “I didn’t want this coming into our home, but I could see it being inevitable.”

Her mother eventually contracted the virus. She struggled to breathe and coughed up mucus. Adnès-Maxwell wiped her mother’s eyes and tried to help her. Koski Maxwell, once a renowned courtroom artist and illustrator for Highlights magazine, died April 1. Adnès-Maxwell said she doesn’t know where the virus came from. She was furloughed from her job at Walt Disney World and had stayed inside for some time before her mother died. She said her son visits only a few people in the neighborhood.

Adnès-Maxwell pointed out that the family lives about 30 minutes from the Villages, a retirement community in central Florida that has experienced a covid-19 outbreak.

She is hardly the only client to cancel home-care services for family members. With more people working from home than normal, more patients have family members around to help.

Even some who don’t have family at home are not willing to risk exposure. Smith said his Massachusetts-based agency has seen a 20 percent drop in overall services provided, largely because of patients canceling services.

Marla Lahat, executive director of Home Care Partners, a District of Columbia nonprofit organization that helps low-income families secure home health care, said her organization had about 650 clients before March 15. As of last week, it had lost 120 of those clients — just shy of 20%.

Home health workers are canceling, too. Agency owners said they’ve seen workers decide they couldn’t risk bringing the virus home to their families, or couldn’t find adequate child care, or couldn’t afford transportation to their jobs. According to a study conducted by PHI — an organization that studies and works to improve the home health industry — the median hourly wage for a unionized home health worker is less than $13 an hour. Most do not have paid sick leave. The choice to leave work or risk illness can be as devastating to them as the choice to receive their care or turn it away can be for those who need them.

In the meantime, workers and their clients are left to decide whether to risk infection or endure the alternative.

Kelleher’s other home aide hasn’t stopped visiting. That aide has emphysema, meaning she is also in a high-risk category for COVID-19. But she said she doesn’t go many places — she gets gas, goes to the supermarket, goes to Kelleher’s, goes home. She and Kelleher say not much has changed, at least not for them.

“We don’t hug anymore,” said Kelleher, who said she couldn’t imagine going without regular visits from home health aides, even as each of her four children offered to take her home with them.

“I was like, you know, I have everything here set up the way I like it,” Kelleher said. “I’ve got my little dog. I’ve got my big chair. It would just be a nightmare to try to move somewhere else at this point.”

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