A home health aide caring for a patient

Home care worker Marie Dorvilne tends to longtime patient Yanick Pierre-Louis. (Photo by Lindsay France / Cornell University)

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Editor’s note: This story has been adapted and condensed from a feature in the Cornell Chronicle.

By Susan Kelley

“Stop it, stop it!” Yanick Pierre-Louis, 68, slapped her knees, frustrated they wouldn’t stop trembling. Again, her body refused to do what she wanted. She had just spent an excruciating 25 minutes walking, grimacing with each step, from her recliner in her Brooklyn home to her front door and back, leaning on her walker.

Marie Dorvilne, her home care worker since 2017, walked behind Pierre-Louis and circled her arms around her torso. She used her knee to help Pierre-Louis bend her own.

Besides rheumatoid arthritis in her knees and shoulders, Pierre-Louis struggles with gout, diabetes, coronary artery disease, memory issues, headaches, and incontinence. She is a breast cancer survivor.

When they made it back inside, Dorvilne eased Pierre-Louis down to the recliner. “I don’t turn my back until I know she is on the chair—sitting, not standing,” says Dorvilne, a certified nursing assistant with 18 years of experience in the profession. “I don’t trust her to stand for one minute.”

She elevated Pierre-Louis’s feet in a recliner and rubbed her knees with swift, gentle strokes, light blue nails making a circular blur. “You’ll be all right, you’ll be OK,” she says. Within a few minutes, Pierre-Louis’s knees stopped trembling.

Between 8 a.m. and 2 p.m., Dorvilne is Pierre-Louis’s bather, dresser, cook, companion, cheerleader, and healthcare manager.

She monitors Pierre-Louis’s blood pressure, gives her medications three times a day, times her meals to keep her diabetes in check, schedules and takes her to medical appointments, and alerts doctors and Pierre-Louis's daughter to changes in her health.

That’s after an eight-hour night shift, taking care of 12 patients at a nursing home. She has one Saturday off every other week. “Some people have time to relax, but I don’t have time to relax,” Dorvilne says. “But in a way, I feel like I’m not working. I feel like I’m helping her. I look at it like she’s my mother.”

A portrait of Dr. Madeline Sterling
As an undergrad, Sterling studied biology in Arts & Sciences. (Photo by Lindsay France / Cornell University.)

Dorvilne’s caregiving inspired Pierre-Louis’s doctor, Madeline Sterling ’08, assistant professor of medicine at Weill Cornell Medicine, alongside experts from the ILR School and Cornell Tech, to launch an ambitious, multidisciplinary research program aimed at elevating the value of home care workers—which includes home health aides, home attendants and nursing assistants—while improving both their working conditions and their patients’ outcomes.

In three years, the team has partnered with the country’s largest healthcare worker union to produce more than 20 academic papers that aim to reshape the way policymakers view this critical workforce.

The research illuminates how the COVID-19 pandemic has increased the value of these workers—mostly middle-aged immigrant women of color—while the demand for their services is at a historic high. Yet here in New York State, they are paid on average $15 per hour—about $19,000 per year—and their work is chronically overlooked and undervalued by care teams.

The technology available to them is often out of date and rudimentary—designed mainly to track the workers rather than provide them with tools and support.

And though they usually have the most detailed knowledge of their patients’ conditions, they have almost no interaction with or feedback from their patients’ doctors or specialists.

“Most patients, like Yanick, actually want to be at home; they want to be aging in place,” Sterling says. “It’s a shift that we need to make, to start paying attention to home health providers, who are providing essential day-to-day care to patients to help manage their chronic diseases, and really integrate them into the medical arena.”

Most patients actually want to be at home; they want to be aging in place.

Internist Madeline Sterling ’08

For Pierre-Louis’s first appointment with Sterling, Dorvilne came along.

“What struck me the most was how involved and passionate she was about delivering high-quality care to my patient,” Sterling says. “It was really through interactions in the office where I saw just how much she was observing in the home.”

Dorvilne cooks Pierre-Louis three healthful meals per day, makes sure she has eaten before taking her daily 20 pills, and does Pierre-Louis’s physical therapy with her.

“She knew when symptoms changed,” Sterling says. “She also knew when medications were not helping, or when it was time to go seek care.”

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Home healthcare worker Marie and her patient, Yannick, using telehealth to talk to Dr. Madeline Sterling from Weill Cornell Medicine during a daily check-in.
Pierre-Louis has a video check-in with Sterling as Dorvilne looks on. (Photo by Noël Heaney / Cornell University)

That prompted the Cornell team to launch a series of studies defining the unseen contributions of home care workers, establishing evidence of their value and revealing the lack of equity this workforce experiences, Sterling says.

One of their recent studies, which they conducted through Cornell’s Survey Research Institute, suggests home care workers assist with a far wider scope of care than previously documented.

Nearly 74% of New Yorkers surveyed said their caregivers provide medical care and/or emotional support. Those patients were twice as likely to view their caregivers as “very important” compared with those who received only personal care.

Though home health workers usually have the most detailed knowledge of their patients’ conditions, they have almost no interaction with or feedback from their patients’ doctors or specialists.

When Dorvilne sees Pierre-Louis become introverted and sad, she takes action.

Pierre-Louis frequently gets depressed by her physical limitations; until about 10 years ago, she lived an active life. She worked in Brooklyn hospitals as a healthcare worker and raised three children after emigrating from Haiti at age 16.

“I tell her, ‘We don’t have time [to be] depressed. Let’s take a walk outside,’” says Dorvilne, 45, who was also born in Haiti and emigrated to the U.S. at age 23.

Dr. Madeline Sterling video-chatting on her phone
Sterling video chats with Pierre-Louis. (Photo by Lindsay France / Cornell University)

That kind of emotional support has become even more important during the pandemic, when so many vulnerable older people are isolated at home—but it comes at a cost to home care workers.

The Cornell team conducted the first study on home care workers’ experiences during the pandemic in the U.S.

It found those in New York City faced a higher risk for COVID-19, because many relied on public transportation and frequently lacked protection like masks and gloves.

They also faced higher risks to their mental and financial well-being and felt inadequately supported and generally invisible.

These challenges contribute to a severe shortage of home care workers, while demand from a population that wants to age in place is growing exponentially, says Ariel Avgar, PhD ’08, professor of labor relations, law, and history in the ILR School and an expert in healthcare labor relations.

Ariel Avgar at his desk talking to a woman who is seated
Avgar and a colleague in his ILR office. (Photo by Noël Heaney / Cornell University)

“There’s a tendency in the healthcare industry to view the workforce as a cost—a cost that needs to be minimized,” Avgar says. “In our research, we try to demonstrate how this workforce is not just a cost but a central way in which organizations can deliver high-quality care.”

The researchers suggest several policies to support home care workers, such as designating them “essential” workers across the U.S., as they are in New York State; legislation to ensure they have masks and gloves; and assigning them to patients on a geographic basis to minimize their need to use public transportation.

“How do we make sure that the knowledge that they have, the insights that they have, make their way into the system in a more robust way?” Avgar says. “It’s happening in some places. But we’re far from where we need to be.”

Read the full story in the Cornell Chronicle.

Top image: Home care worker Marie Dorvilne tends to longtime patient Yanick Pierre-Louis. (Photo by Lindsay France / Cornell University)

Published August 5, 2022


Comments

  1. Barbara Morrill

    New York State piloted a program in the nineteen eighties called “Nursing Home Without Walls”, which provided extensive home care services to eligible Medicaid patients through the county public health nursing services. The nursing services and home care were privatized and dismantled. Home health aides were effective and valued in this program. What a great shame!
    Now our county is polling residents for input into what residents think is needed in public health. How about restoring the nursing services which were valuable in health promotion, disease prevention ( think immunization programs, hypertension programs, early childhood intervention programs, home care, communicable disease
    surveillence, and intervention, cardiovascular prevention, and so on)?

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