INDIANAPOLIS — When Marilyn White, 84, was discharged from the hospital two years ago after surgery to implant a pacemaker, her husband, Bob, wasn’t quite sure how to take care of her.
“Nobody from the hospital came to see me,” White said. It was only after later checking with the doctor who performed the surgery that he learned more details of what to do when he took her home.
“Information is worth a pound of gold,” said Marilyn White, empathizing with her husband in his frustration. Years ago, she’d brought her mother home from a hospital stay with “mountains of medicine and no means to make sense of it.”
The Jeffersonville couple hopes fewer caregivers will face those frustrations if a bill addressing after-hospital care makes it through the General Assembly.
They’ve been part of lobbying efforts to convince Indiana lawmakers to support the CARE (Caregiver Advise, Record and Enable) Act, which would mandate better tutelage of caregivers.
If passed, the measure would require hospitals to work with patients to identify their caregiver, to notify that caregiver before the patient is discharged, and to help prepare the caregiver for the range of tasks – from monitoring feeding tubes to dressing wounds — that he or she would need to perform for the patient once home.
Bill co-authors Rep. Dennis Zent, R-Angola, and Rep. Ed Clere, R-New Albany, said the goal is to keep more people healthy and at home, reducing return hospital visits.
During testimony on the bill, lawmakers heard that often doesn’t happen: One in five Medicare recipients who leaves a hospital, for example, is readmitted within the first 30 days. Nationally, that adds up to about $17.5 billion a year in additional Medicare costs.
For both Zent and Clere, the pricetag to taxpayers is a factor in supporting the bill. But so is concern for the estimated 1.3 million people in Indiana who are caring for aging relatives. A recent scorecard from the AARP ranked Indiana the worst in the nation for providing long-term services and support for family caregivers.
Zent’s own father suffered a massive stroke and spent 18 years in and out of the hospital before his death. “We were lucky,” said Zent, a dentist whose wife is also a healthcare provider. “We had resources and knowledge to take care of him, but not everybody does.”
Clere’s aging in-laws lived with his family and went through numerous hospital stays and transitions back home. “Life as a family caregiver can be physically and emotionally demanding,” Clere said.
The Indiana Hospital Association had concerns about details of the bill that would have placed strict rules on when and how the discharge plan was executed. But IHA officials worked with the AARP, the bill’s biggest backer, to devise language tied to a common goal of improving the information flow to families.
“This is really about empowering caregivers,” said AARP state director June Lyle.
If passed, Indiana would be the third state in the nation to enact a version of the CARE Act. At least another 10 states are considering similar legislation.
Prompting the measures are several factors: The nation’s rapidly aging population, longer lifespans, and a shift away from nursing homes and toward more home-based care. Those factors and others are taxing caregivers: Lyle has testified that the average caregiver in Indiana is a 49-year-old woman with a full-time job.
State Rep. Ron Bacon, R-Boonville, has had reservations about the bill, in part because hospitals worried they may be held legally liable if a caregiver fails to provide care as instructed by hospital staff. He also is worried that the bill’s provisions could delay a patient’s release from a hospital if a patient doesn’t have a designated caregiver, or if a caregiver can’t be located.
“I think the concept is great,” Bacon said. “But I’m wondering just what the hospitals can truly do to solve some much bigger problems.”