Few hospitals dedicate space for family caregivers, but that could change
WHEN STEVE KESSLER’S WIFE MOVED from an acute-care hospital into a rehabilitation hospital following a severe stroke in 2005, the feeling of relief that Barbara would survive was quickly replaced with overwhelming anxiety over the huge unknowns that remained. Would she ever be able to work again—or even take care of herself, for that matter?
“These are the basic questions I honestly did not know,” Kessler said. “As a caregiver, no one sat down to explain it.”
That added to the stress and loneliness Kessler felt during the 2½ months his wife was at 150-bed Burke Rehabilitation Hospital in White Plains, N.Y., just a 10-minute drive from their house. The family is part of a team that championed the addition of its new caregiver resource center, a quiet, spa-like space on the hospital’s first floor where family and friends helping to care for Burke’s patients can rest, recharge and meet with volunteers trained to address their questions and concerns.
Dedicated spaces for such caregivers are rare in general, acute-care hospitals. Fewer than 20 such hospitals have them, according to experts in the field, and Burke says theirs, which opened in June, is the first caregiver center inside a rehab hospital.
Even so, caregiver advocates believe several factors are coming together to convince hospitals such investments make economic sense even as margins increasingly shrink.
The Affordable Care
Act added penalties for avoidable readmissions, which family caregivers can help prevent.
“The caregivers in the population that we’re taking care of need to be recognized as a component that will reduce readmissions and keep length of stay shorter,” said Jeffrey Menkes, Burke's CEO.
Burke's unit, the Marsal Caregiver Center, wouldn't have been possible without a grant from a former patient, Menkes said. He didn’t share the amount, but said it cost about $700,000 to build the facility and will cost about $200,000 a year to run it. The center’s director, a licensed clinical social worker, is currently its only paid staff member, but Menkes expects to add more staffers.
Hospital administrators don’t always see the value in caregiver centers because they can’t draw a straight line between supporting caregivers and better outcomes, said Leah Eskenazi, operations director for the National Center on Caregiving’s Family Caregiver Alliance. It’s a difficult message to drive home when you can’t apply the same cost-benefit ratio used in other service areas.
“That’s the particular challenge for these types of programs: They’re not profit centers,” Eskenazi said.
But Eskenazi and others said family caregivers are critical to successful recoveries from serious illness or injury. To that end, AARP has championed a law that requires hospitals to educate and train caregivers on medical tasks they’ll need to perform at home. The measure has been signed into law in 36 states plus the District of Columbia, Puerto Rico and the U.S. Virgin Islands.
The CMS has been penal- izing hospitals with excess readmissions since 2013 as part of an effort to reduce wasteful Medicare spending and improve patient care, although there is debate over whether emphasizing re-admissions could be harming patients.
There are isolated examples of programs that pay caregivers for their work. Caregivers in Iowa and California can get paid for taking care of certain Medicaid patients through state programs.
Insurers may eventually develop creative ways to pay caregivers, especially as they’re increasingly recognized as part of the medical team, said Kendra Webster, director of the Coast Caregiver Resource Center.
Webster’s office, part of Cottage Rehabilitation Hospital in Santa Barbara, Calif., participates in a statewide network of such centers that’s been in place for about 30 years. It provides grants for respite caregivers, counseling, vouchers for legal services and runs support groups. It’s all free, although they accept donations.
The Family Caregiver Alliance runs a caregiver help line, and the No. 1 question they hear is whether caregivers can get paid, Eskenazi said. Caregivers often spend their own money on providing care, and are struggling financially, especially if they’ve had to quit working. Nearly 9 out of 10 caregivers for older Americans are unpaid, and they often work longer hours and receive less government support than their paid counterparts, according to a 2017 Health Affairs study.
Despite their scarcity in general at acute-care hospitals, family resource centers are common in children’s hospitals. Three-quarters of those hospitals have them such areas, according to the Children’s Hospital Association. ●