Howard Girard is in hospital home care for covid, COPD, and congestive heart failure. Although he has passed away, his daughter Lori says it can prolong his life and help him enjoy life.
Lori Girard
hide captions
switch captions
Lori Girard
Howard Girard is in hospital home care for covid, COPD, and congestive heart failure. Although he has passed away, his daughter Lori says it can prolong his life and help him enjoy life.
Lori Girard
For the past four years, Chad Semling has been battling a serious illness, including chronic infections, a weakened liver and a damaged heart. He became a regular at his local hospital in Eau Claire, Wisconsin, where he and his wife, Clare Semling, knew all too well the downsides of hospital care: Isolation. Poor sleep, interrupted by ringing bells and alarms. Food.
In the spring of 2020, Chad returned to the Eau Claire Mayo Clinic emergency department for an outbreak of cellulitis, a skin infection that can be serious. He is dreading another hospital stay. Instead, they say he’s eligible for a new “home hospital” pilot program that will equip his home and send a clinician to visit. Clare said: “He did it all because he hated being in the hospital.
She also cares. While Chad is in the hospital, she will have to work, take care of their two children, and check on him. It was tiring. Maybe this will be easier.
So they tried it, joining one of the fastest growing trials in American healthcare. Home hospital programs are for people who are sick enough to need hospital care, but stable enough to receive care at home.
Research on the results is still inconclusive, but promising that it can provide good care and save money on healthcare. But one big question emerges: What about family? Are unpaid, untrained family caregivers willing to take on the responsibility of supervising a critically ill person at home – even with support from visiting clinicians? “We have to look at the consequences for family caregivers,” said Susan Reinhard, director of AARP’s Public Policy Institute.
This question is about to become more important. For decades, the home hospital was a small-scale experiment. During the COVID pandemic, this idea has gone mainstream. In November 2020, the federal government changed the rules so that hospitals could be paid the same amount when treating patients at home. Today, 290 hospitals in 37 states have signed up.
Diagnosis usually includes chronic obstructive pulmonary disease, heart failure, pneumonia or, as with Semling, an infection. In addition to twice-daily nurse visits and daily telemedicine visits with doctors, services such as physical therapy or blood tests can be delivered to your home. There is a nurse consulting via tablet. Oxygen machines, medications, and fluids may be delivered. After Semling broke his back last summer, he received a pillbox with a Wi-Fi connection to deliver pain relievers and other medications on schedule.
For him, there is no doubt. “Being able to stay at home makes all the difference in the world,” he said. He sleeps better and recovers faster. He’s now had a five-year hospital stay at home and both the Semlings love it. But Clare has words of warning for caregivers: “There’s a lot of responsibility on your shoulders.”
Chad and Clare Semling had five hospitalizations at home related to Chad’s critical illnesses. Both preferred Chad to be in the hospital, but said it was important to know what to expect.
Chad Semling
hide captions
switch captions
Chad Semling
Chad and Clare Semling had five hospitalizations at home related to Chad’s critical illnesses. Both preferred Chad to be in the hospital, but said it was important to know what to expect.
Chad Semling
It was overwhelming at first, especially since he was so weak from his previous hospital stay. She toss and turn all night to get him whatever he needs. And while hospital in-home programs can often provide frozen meals, Chad is fed up with work food. So when he’s too weak or unsteady, she’ll prepare lunch for him in the morning, take the kids to school, and get ready for the 12-hour shift at the company. production for which she works. He had to keep track of everything he ate and drank, how often he used the bathroom, and she helped keep track of that, too.
Then during the workday, she gets nervous. A nurse or medical staff visits twice a day, but otherwise he must be left alone. “In the hospital, if something happens, they know how to handle it,” she said. “Now it belongs to you.”
That said, Clare says she strongly recommends home hospitalization. Carers just need to know what they’re signing up for.
Carer, or nurse’s assistant?
For caregivers, a home hospital eliminates the hassle of having a loved one in the hospital, everything from expensive parking spaces to hours at the bedside waiting for a doctor to see them. But it brings new concerns.
These plans do not require caregivers to handle medical tasks such as IV handling. But they may need to carry cups of cold water in the middle of the night, help a weak person in bed, change clothes, or go to the bathroom. In hospitals, nursing aides do those jobs. Plans can arrange home health aides for help, but usually during certain hours. That may be part of the reason why between 10 and 62 percent of people are opting out of these new programs.
“The data is rather scanty on the effects” on caregivers, said Albert Siu, home hospital pioneer who directs the program at Mount Sinai in New York City. A research survey at Brigham Health in Massachusetts and another focused on cancer treatment have found that stress and burden are similar between traditional hospital admissions and home hospitals.
That’s not necessarily good news, given the plethora of studies documenting caregiver stress and distress. “As family members, we will always agree,” said Donna Benton, assistant dean and professor of gerontology at the University of Southern California who studies care. “But we don’t know what that means.”
A recent AARP policy press conference delved into the implications. The report advises that home hospitals have strong potential, but the effects on caregivers need more attention. AARP’s Reinhard said: “Family caregivers are completely invisible. “They’re not going to turn to their wife, daughter or husband and say, ‘Can you handle this? That’s the discussion we think needs to take place.” The briefing recommends federal policymakers require programs to make sure family members know exactly what to expect and agree to it.
Currently, that’s not a federal requirement. But five home hospital directors interviewed by NPR said they include family caregivers in the decision-making process. “An important part of the process is making sure that both the patient and their caregivers have a clear understanding,” said Margaret Paulson, who directs the Semlings program at the Mayo Clinic Health System in Wisconsin. about what they are engaged in.
The Centers for Medicare & Medicaid, which oversees these programs, is considering adding rules to clarify caregiver responsibilities. “CMS makes it very clear that during a home stay, hospitals must not use family members, facilitators or carers to provide care that would otherwise fall into the hands of a medical practitioner. nurse or other hospital staff on an inpatient admission,” CMS said chief medical officer Lee Fleisher in a statement provided to NPR. “Carers should have time to focus on the patient’s emotional needs and overall health throughout the healing process.” In April, an executive order from President Biden also prompted the agency to set clearer expectations.
Just getting more data on how caregivers are coping would be a good start, says Reinhard. For example, research in other countries shows that hospital treatment at home can actually be cheaper for families, as they avoid costs like dining out and travelling. But in the US, we don’t know.
Advice for carers
Sometimes, a home hospital is exactly what doctors have ordered—for patients and families. Lori Girard’s father, Howard, was a New England Yankee, a farmer who smoked a pack of Marlboros a day. Her parents “were not heavy drinkers,” says Girard. “They eat well, work hard.”
That pointless approach served him for a long time. But in his 80s, he had both chronic obstructive pulmonary disease (COPD)—a common chronic lung disease—and congestive heart failure (CHF), in which the heart struggles to pump enough blood.
Then in November, he contracted Covid. By December, he had a constant cough. Lab tests show that his blood sugar is high and his blood pressure is low. His doctor wants him to go to the emergency room.
It will not happen. Back in 2018, he signed forms stating his wish: No life-saving emergency treatment. Definitely no hospital. “Being confined to a hospital bed, with people waking you up, teasing and teasing you, that’s not his way,” Girard said. She and her mother felt helpless.
Fortunately, his pulmonologist suggested a home hospital, in this case organized by the new company Medically Home, which provides logistics and engineering services in partnership with hospitals. The team brought a portable X-ray machine to the house, much to her parents’ amazement. Girard lived just three houses away, so she helped them take their medicine and reminded them how to use an iPad once. Otherwise they manage themselves well. “I feel fine,” she says now. “Better OK. I slept well.”
He has fully recovered. “They hit it out of the park with him, and he was a tough customer,” she said. He enjoyed life for a few more months, taking her mother out and visiting casinos, until his death in March.
For Girard, it was obvious. “I don’t know if he would have survived if they hadn’t come,” she said.
She echoes the advice of others: Ask lots of questions and make sure you understand the meaning. Find out in advance what to do if responsibilities become overwhelming, Siu suggests. “It was a very specific decision by the family,” he said.
Mayo’s Paulson has a similar suggestion: “If you were a carer, would you go crazy if people came in and out of your home, or would you agree with that?” Also, if you live in a rural area, it can take up to 30 minutes for a nurse or paramedic to arrive, which can be intimidating in some situations. .
Even with those downsides, Semling said, it’s a big improvement over the usual hospital. “However, for us, it was definitely a blessing,” she said. “At least we’re home.”
Kat McGowan is a freelance writer in California with a focus on the caregiving field. This story was produced with support from Alicia Patterson Foundation.
