By Cristina Rouvalis
In the past seven years, Maryann Filippello’s husband, Frank, has been treated for a heart attack, two strokes, diabetes, urinary tract infections and other ailments.
Now bedridden, Frank Filippello, 74, was once so vibrant he managed and supervised several levels of concession stands at Philadelphia Flyers games and other events.
“It’s extremely difficult for me, but I prefer to have him home. I watch everything,” said Maryann, 72, his wife of 50 years. Her caregiver role is made even harder by the uncertainty she often feels after Frank is released from the hospital and transported back to the couple’s South Philadelphia home.
“Sometimes I will see a doctor who will explain everything. But sometimes the hospital just wants to get him out. On a medical level, they give you the bare necessities,” she said. “It’s not easy for anyone to grasp, especially when your loved one can’t walk or talk.”
Caregivers such as Filippello stand to benefit from a new law that will require hospitals to give them explanations and demonstrations of medical care for their loved ones before they are discharged.
The CARE (Caregiver Advise, Record, Enable) Act, spearheaded by AARP Pennsylvania and sponsored by state Rep. Hal English (R-Allison Park), goes into effect April 20. The law gives the patient the opportunity to name a designated caregiver, who must be notified before discharge.
Filippello said the legislation “is absolutely a good idea.”
Wallet cards available
More than 1.6 million Pennsylvanians care for older parents, spouses or other family members, making it possible for their loved ones to live in their own homes, rather than in a facility.
To publicize caregivers’ rights under the CARE Act, AARP Pennsylvania is handing out wallet-size cards, sending emails, mailing fliers and offering public presentations about the law. Go to action.aarp.org/PACAREAct or call 877-333-5885 toll-free to get a wallet card.
Pennsylvania was the 25th state (of 32) to pass a version of the legislation.
“Caregivers are asked to do more and more complicated things at home, not just dressing and wound care but cauterization and injections,” said Desiree Hung, associate state advocacy director at AARP Pennsylvania. The CARE Act, she said, “helps both the caregiver and the patient, who is going to heal better at home.”
Some hospitals already demonstrate caregiving duties, Hung said, but, “without being coached at hospitals, caregivers are winging it. A demonstration of a task goes a long way.”
The Hospital and Healthsystem Association of Pennsylvania supported the bill, helping to develop the final draft. “The CARE Act is built on current best practices,” said Scott Bishop, the association’s senior vice president of legislative advocacy. “It’s not that hospitals are starting from scratch. It builds consistency over time.
“The law reflects what consumers and patients expect from the hospital,” Bishop said. “If a hospital doesn’t give them support and counseling, they will choose not to go to that hospital.”
The law should also reduce readmissions, he said. “Sharing relevant information about prescriptions and aftercare and nutrition are key components to make sure someone is not readmitted to the hospital.”
Maryann Filippello knows too well the toll it takes on her husband to be readmitted to the hospital.
“Every time a patient goes back and forth from the hospital, they debilitate more and more,” she said.
She has seen how smoothly things go when a physician who treated her husband gave her detailed instructions. Conversely, she has seen the cost when medical staff discharged her husband without telling her they had eliminated a medication or informed her of warning signs of a new infection.
Because her husband’s catheterization makes him vulnerable to infections, she wants him at home, away from hospital germs. But she wants to glean as much information as she can during the discharge.
“Sit me down. I want to know everything so I won’t be calling you every 10 minutes.”
Cristina Rouvalis is a freelance writer based in Pittsburgh.