'Hospital-at-home' trend means family members must be caregivers — ready or not

For the past four years, Chad Semling has coped with serious illness, including chronic infections, a weakened liver and a damaged heart. He became a regular visitor at his local hospital in Eau Claire, Wisconsin, where he and his wife, Clare Semling, got to know the downsides of hospital care a little too well: The isolation. Poor sleep, interrupted by bells and alarms. The food.

In the spring of 2020, Chad was back at the Eau Claire Mayo Clinic emergency department for a flareup of cellulitis, a skin infection that can be serious. He was dreading yet another hospital stay. Instead, they said he was eligible for a new "hospital-at-home" pilot program that would outfit his house with equipment and send clinicians to make visits. "He was all for it, because he hates being in the hospital," says Clare.

She was interested, too. During Chad's stints in the hospital, it would fall upon her to work, care for their two children, and check in on him. It was exhausting. Maybe this would be easier.

So they tried it out, joining one of the fastest-growing experiments in American health care. Hospital-at-home programs are for people sick enough to need the attention a hospital provides, but stable enough to be cared for at home.

Research on outcomes is not conclusive, yet, but shows promise that it can provide good care and save health care dollars. But a big question looms: What about the family? Are unpaid, untrained family caregivers ready to take on the responsibility of overseeing a critically ill person at home — even with backup from visiting clinicians? "We've got to look at the consequences for family caregivers," says Susan Reinhard, director of AARP's Public Policy Institute.

This question is about to become more important. For decades, hospital-at-home was a small-scale experiment. During the COVID pandemic, the idea went mainstream. In November 2020, the federal government changed rules so that hospitals could be paid the same amount to treat patients at home. Today, 290 hospitals in 37 states have signed up.

Diagnoses often include chronic obstructive pulmonary disease, heart failure, pneumonia, or as with Semling, an infection. In addition to twice-daily nurse visits and daily telemedicine sessions with a doctor, services like physical therapy or blood tests can be brought to the house. A nurse is available for advice via tablet computer. Oxygen machines, drugs and infusions can be delivered. After Semling fractured his back last summer, he got a Wi-Fi enabled pill box that dispensed painkillers and other meds on schedule.

For him, there's no debate. "Being able to be home made all the difference in the world," he says. He sleeps better and heals faster. He's now had five stints with hospital-at-home, and both the Semlings prefer it. But Clare has words of caution for caregivers: "There is a lot of responsibility on your shoulders."

It was overwhelming in the beginning, especially because he was weak from a previous hospital stay. She was up and down all night getting him whatever he needed. And while hospital-at-home programs often can deliver frozen meals, Chad was fed up with institutional food. So when he was too weak or unsteady, she'd make his lunch in the morning while also getting the kids off to school and getting herself ready for her 12-hour shift at the manufacturing company she works for. He was supposed to track everything he ate and drank, and how often he used the bathroom, and she helped stay on top of that, too.

Then, during the workday, she'd worry. A nurse or paramedic visited twice a day, but otherwise he was on his own. "In the hospital, if something happens, they know how to take care of it," she says. "Now it's on you."

That said, Clare says she'd absolutely recommend hospital-at-home. Caregivers just need to know what they're signing up for.

Caregiver, or nurse's aide?

For a caregiver, hospital-at-home eliminates the hardship that comes with a loved one's stint in the hospital, everything from overpriced parking to hours spent at bedside waiting for a doctor to make rounds. But it brings new concerns.

These programs don't ask caregivers to handle medical tasks like dealing with an IV. But they might need to bring glasses of cold water in the middle of the night, help a weak person turn over in bed, change clothes, or get to the bathroom. In the hospital, nursing aids do those tasks. Programs can arrange home health aides for help, but usually for limited hours. It could be part of the reason why between 10 and 62 percent of people turn down the option to participate in these new programs.

"The data are fairly sparse, in terms of what the effects are" on caregivers, says Albert Siu, a pioneer of hospital-at-home who directs the program at Mount Sinai in New York City. One research survey at Brigham Health in Massachusetts and another focused on cancer treatment found that stress and burden were similar between traditional hospitalization and hospital-at-home.

That's not necessarily good news, given the copious research documenting caregiver strain and distress. "As family members, we always will say yes," says Donna Benton, an assistant dean and professor of gerontology at the University of Southern California who studies caregiving. "But we don't know what that means."

A recent AARP policy briefing delved into the implications. Hospital-at-home has strong potential, but the effects on caregivers need more attention, the report advises. "The family caregivers are completely invisible," says Reinhard of AARP. "They're not turning to wife, daughter, or husband, and saying: Can you handle this? That's the discussion we think needs to happen." The briefing recommends federal policymakers require programs to make sure family members know exactly what will happen and are on board with it.

Currently, that's not a federal requirement. But five hospital-at-home directors interviewed by NPR said they bring family caregivers into the decision-making process. "A huge part of the process is making sure that both patients and their caregivers have a really good idea of what they're getting into," says Margaret Paulson, who directs the program the Semlings joined at the Mayo Clinic Health System in Wisconsin.

The Centers for Medicare & Medicaid, which oversees these programs, is considering adding rules to clarify caregivers' responsibilities. "CMS makes it very clear that during the hospital-at-home stay, hospitals are not to use family members, support persons, or caregivers to provide care that would otherwise fall to nurses or other hospital staff during an inpatient admission," said CMS chief medical officer Lee Fleisher in a statement provided to NPR. "Caregivers should have time to focus on a patient's emotional needs and overall well-being throughout the healing process." In April, an executive order from President Biden also nudged the agency to set clearer expectations.

Simply getting more data on how caregivers are coping would be a good start, says Reinhard. For instance, research in other nations suggests that hospital-at-home might actually be cheaper for families, because they avoid expenses like cafeteria meals and travel. But in the U.S., we just don't know.

Advice for caregivers

Sometimes, hospital-at-home is exactly what the doctor ordered—for the patient and the family. Lori Girard's father Howard was a flinty New England Yankee, a farmer who smoked a pack of Marlboros every day. Her parents "weren't big medicine-takers," says Girard. "They ate good, worked hard."

That no-nonsense approach served him for a long time. But in his 80s he developed both chronic obstructive pulmonary disease (COPD)—a common chronic lung ailment—and congestive heart failure (CHF), in which the heart struggles to pump enough blood.

Then in November he got Covid. By December, he was wracked by constant coughing. Lab tests showed that his blood sugar was high, and his blood pressure low. His doctor wanted him to go to the emergency room.

That was not going to happen. Back in 2018 he had signed forms spelling out his wishes: No life-saving emergency treatment. Definitely no hospitals. "To be confined in a hospital bed, with people waking you up, poking and prodding you, it wasn't his way to be," says Girard. She and her mother felt helpless.

Luckily, his lung doctor suggested hospital-at-home, in this case organized by the new company Medically Home, which provides logistical and technical services in partnership with hospitals . The team brought a mobile X-ray machine to the house, which wowed her parents. Girard lives just three doors down, so she helped them with medications, and reminded them how to use the iPad once. Otherwise they managed fine on their own. "I felt OK," she says now. "Better than OK. I slept good."

He made a full recovery. "They hit it out of the park with him, and he's a tough customer," she says. He enjoyed life for several more months, taking her mother out for trips and visiting the casino, until he passed away in March.

For Girard, it was clear. "I don't know if he would've lived, if they hadn't come," she says.

She echoes the advice of others: Ask plenty of questions, and be sure you understand the implications. Find out in advance what to do if the responsibility becomes overwhelming, suggests Siu. "It's a very family specific decision," he says.

Mayo's Paulson has similar suggestions: "If you're the caregiver, is it going to drive you crazy if people are going in and out of your home, or are you OK with that?" Also, if you live in a rural area, a nurse or paramedic may take up to 30 minutes to arrive, which could be scary in some situations. .

Even with those drawbacks, says Semling, it's a big improvement over hospital-as-usual. "For us, though, it definitely has been a blessing," she says. "At least we're home."

Kat McGowan is a freelance writer in California focused on caregiving. This story was produced with support from the Alicia Patterson Foundation. [Copyright 2023 NPR]