Tagged Home Health Care

Most Home Health Aides ‘Can’t Afford Not to Work’ — Even When Lacking PPE

In March, Sue Williams-Ward took a new job, with a $1-an-hour raise.

The employer, a home health care agency called Together We Can, was paying a premium — $13 an hour — after it started losing aides when COVID-19 safety concerns mounted.

Williams-Ward, a 68-year-old Indianapolis native, was a devoted caregiver who bathed, dressed and fed clients as if they were family. She was known to entertain clients with some of her own 26 grandchildren, even inviting her clients along on charitable deliveries of Thanksgiving turkeys and Christmas hams.

Without her, the city’s most vulnerable would have been “lost, alone or mistreated,” said her husband, Royal Davis.

Despite her husband’s fears for her health, Williams-Ward reported to work on March 16 at an apartment with three elderly women. One was blind, one was wheelchair-bound, and the third had a severe mental illness. None had been diagnosed with COVID-19 but, Williams-Ward confided in Davis, at least one had symptoms of fatigue and shortness of breath, now associated with the virus.

Even after a colleague on the night shift developed pneumonia, Williams-Ward tended to her patients — without protective equipment, which she told her husband she’d repeatedly requested from the agency. Together We Can did not respond to multiple phone and email requests for comment about the PPE available to its workers.

Still, Davis said, “Sue did all the little, unseen, everyday things that allowed them to maintain their liberty, dignity and freedom.”

He said that within three days Williams-Ward was coughing, too. After six weeks in a hospital and weeks on a ventilator, she died of COVID-19. Hers is one of more than 1,200 health worker COVID deaths that KHN and The Guardian are investigating, including those of dozens of home health aides.

During the pandemic, home health aides have buttressed the U.S. health care system by keeping the most vulnerable patients — seniors, the disabled, the infirm — out of hospitals. Yet even as they’ve put themselves at risk, this workforce of 2.3 million — of whom 9 in 10 are women, nearly two-thirds are minorities and almost one-third are foreign-born — has largely been overlooked.

Home health providers scavenged for their own face masks and other protective equipment, blended disinfectant and fabricated sanitizing wipes amid widespread shortages. They’ve often done it all on poverty wages, without overtime pay, hazard pay, sick leave and health insurance. And they’ve gotten sick and died — leaving little to their survivors.

Speaking out about their work conditions during the pandemic has triggered retaliation by employers, according to representatives of the Service Employees International Union in Massachusetts, California and Virginia. “It’s been shocking, egregious and unethical,” said David Broder, president of SEIU Virginia 512.

The pandemic has laid bare deeply ingrained inequities among health workers, as Broder puts it: “This is exactly what structural racism looks like today in our health care system.”

Every worker who spoke with KHN for this article said they felt intimidated by the prospect of voicing their concerns. All have seen colleagues fired for doing so. They agreed to talk candidly about their work environments on the condition their full names not be used.

***

Tina, a home health provider, said she has faced these challenges in Springfield, Massachusetts, one of the nation’s poorest cities.

Like many of her colleagues — 82%, according to a survey by the National Domestic Workers Alliance — Tina has lacked protective equipment throughout the pandemic. Her employer is a family-owned company that gave her one surgical mask and two pairs of latex gloves a week to clean body fluids, change wound dressings and administer medications to incontinent or bedridden clients.

When Tina received the company’s do-it-yourself blueprints — to make masks from hole-punched sheets of paper towel reinforced with tongue depressors and gloves from garbage bags looped with rubber bands — she balked. “It felt like I was in a Third World country,” she said.

The home health agencies that Tina and others in this article work for declined to comment on work conditions during the pandemic.

In other workplaces — hospitals, mines, factories — employers are responsible for the conditions in which their employees operate. Understanding the plight of home health providers begins with American labor law.

The Fair Labor Standards Act, which forms the basis of protections in the American workplace, was passed in an era dually marked by President Franklin Delano Roosevelt’s New Deal changes and marred by the barriers of the Jim Crow era. The act excluded domestic care workers — including maids, butlers and home health providers — from protections such as overtime pay, sick leave, hazard pay and insurance. Likewise, standards set by the Occupational Safety and Health Administration three decades later carved out “domestic household employment activities in private residences.”

“A deliberate decision was made to discriminate against colored people — mostly women — to unburden distinguished elderly white folks from the responsibility of employment,” said Ruqaiijah Yearby, a law professor at St. Louis University.

In 2015, several of these exceptions were eliminated, and protections for home health providers became “very well regulated on paper,” said Nina Kohn, a professor specializing in civil rights law at Syracuse University. “But the reality is, noncompliance is a norm and the penalties for noncompliance are toothless.”

Burkett McInturff, a civil rights lawyer working on behalf of home health workers, said, “The law itself is very clear. The problem lies in the ability to hold these companies accountable.”

The Occupational Safety and Health Administration has “abdicated its responsibility for protecting workers” in the pandemic, said Debbie Berkowitz, director of the National Employment Law Project. Berkowitz is also a former OSHA chief. In her view, political and financial decisions in recent years have hollowed out the agency: It now has the fewest inspectors and conducts the fewest inspections per year in its history.

Furthermore, some home health care agencies have classified home health providers as contractors, akin to gig workers such as Uber drivers. This loophole protects them from the responsibilities of employers, said Seema Mohapatra, an Indiana University associate professor of law. Furthermore, she said, “these workers are rarely in a position to question, or advocate or lobby for themselves.”

Should workers contract COVID-19, they are unlikely to receive remuneration or damages.

Demonstrating causality — that a person caught the coronavirus on the job — for workers’ compensation has been extremely difficult, Berkowitz said. As with other health care jobs, employers have been quick to point out that workers might have caught the virus at the gas station, grocery store or home.

Many home health providers care for multiple patients, who also bear the consequences of their work conditions. “If you think about perfect vectors for transmission, unprotected individuals going from house to house have to rank at the top of list,” Kohn said. “Even if someone didn’t care at all about these workers, we need to fix this to keep Grandma and Grandpa safe.”

Nonetheless, caregivers like Samira, in Richmond, Virginia, have little choice but to work. Samira — who makes $8.25 an hour with one client and $9.44 an hour with another, and owes tens of thousands of dollars in hospital bills from previous work injuries — has no other option but to risk getting sick.

“I can’t afford not to work. And my clients, they don’t have anybody but me,” she said. “So I just pray every day I don’t get it.”

Related Topics

Health Industry Public Health

Finding Ways to Keep Patients at Home

Photo

Credit Getty Images

My patient was a proudly elegant woman in her 70s who lived alone. Her Parkinson’s disease had so severely restricted her ability to move that it would take her hours to get dressed in the morning. And leaving the house was virtually impossible, so she had to rely on neighbors and friends from her church community for help with shopping.

She was adamant that she wouldn’t want aggressive treatment to keep her alive. She’d been hospitalized many times, and she told me she wouldn’t want to take a hospital bed that would be better used for someone else. So she dutifully completed an advance directive that made her wishes clear. It said that she would not want to be kept alive on a breathing machine, and that she wouldn’t want cardiopulmonary resuscitation if her heart stopped. She also wouldn’t want to be fed through a tube if she was no longer able to eat. What was most important to her, though, was staying at home and avoiding a nursing home.

As a palliative care physician, I always urge my patients to complete advance directives. These are legal documents that tell doctors and family members what treatment they do and don’t want if they’re ever unable to make decisions for themselves. That’s important, because if I don’t know what my patients want, the default is to do everything to keep them alive, which typically results in unnecessary and costly treatment. Indeed, one of the most often-cited arguments for advance directives is the fact that 25 percent of Medicare spending is for people in the last year of life.

When my patient developed a cough and a fever, likely a result of pneumonia, she became too confused to make decisions for herself. Thanks to her advance directive, her family knew that she didn’t want aggressive treatment, and we knew that she wanted to stay home. So we arranged for short-term daily nursing visits and enough support so that, with additional help from her family, she was able to remain at home as she wanted.

I thought that she would get worse without aggressive treatment in the hospital, and that we would enroll her in hospice, so I was surprised when she began to improve. Soon she was able to make decisions for herself and even returned to the same level of independence that she’d had before she became sick. That’s when it became obvious to me that advance directives have their limits.

My patient lived, as many people with chronic, serious illnesses do, on a thin ledge of independence. The smallest nudge — a few missed medication doses, the loss of just a little support — left her entirely vulnerable. In my patient’s case, that nudge came two months later, when her neighbors ran into financial problems and their daughter, who had been doing the grocery shopping for my patient, had to take an after-school job. My patient valued her independence more than anything, so whenever her neighbors and her out-of-state family checked on her, or when we called her, she told us all that she was fine.

For three weeks, my patient subsisted on nothing but white rice, because that was all she had in the house. When her grand niece called us and asked us to check on her, we sent a social worker and a nurse to visit her. We found her housebound, surrounded by garbage, with no clean laundry and no toilet paper.

Despite our best efforts, we couldn’t do enough to keep her safe at home, so she went to live in a nursing home, where she spent the last two months of her life. An advance directive had helped her stay out of the hospital, as she had wanted. And perhaps it even made a bed available for someone who needed it more, as she’d hoped. But that piece of paper didn’t help her to live out her final months with the sort of comfort and dignity that she deserved.

When we talk about advance directives and reducing costly and unnecessary treatment at the end of life, we should also be talking about ways we can provide more support. We need to make sure that people like my patient have access to the kinds of care that can help them remain safely and comfortably at home.

Now when I help my patients complete an advance directive that defines the treatment they don’t want, we also discuss what support they’ll need in the future. I talk with my patients and their families about what’s going to be necessary to keep them safe and comfortable in their homes today, and next month and — if they’re lucky — for the next few years.

Those sorts of discussions are essential, but they’re not enough. We also need to revise the way we think about advance directives. Advance directives help reduce health care costs at the end of life by avoiding aggressive treatment, but that’s not the most compelling argument for them. It’s not enough to reduce what we spend on aggressive treatment at the end of life; we also need to spend those resources in better ways.

For someone around my patient’s age, the average cost of a hospitalization is about $13,000. So Medicare should have been willing to spend $13,000 to keep her safe and comfortable at home. That sum would have been more than enough to pay for a visiting nurse to continue to check on her after she recovered from pneumonia and a home health aide to help her with bathing and dressing. And it could have paid the girl next door to do her grocery shopping so a frail elderly woman didn’t need to subsist on white rice because it was the only food she had.

We should have been able to provide all of that help. My patient was adamant that she didn’t want to spend her last days of life in a hospital, taking up a bed that someone else could use. Let’s make sure that when people like her forgo costly treatment at the end of life, they get something in return.

Dr. David Casarett is a professor at the University of Pennsylvania Perelman School of Medicine and the author of “Stoned: A Doctor’s Case for Medical Marijuana.”

For more fitness, food and wellness news, follow us on Facebook and Twitter, or sign up for our newsletter.