By Jill Gambon
For five years, Vanessa Hogan cared for her sister, Dianna, who suffered from lymphoma, lupus, congestive heart failure and other chronic ailments. Emergency room visits, hospital stays and doctor appointments were frequent.
Hogan accompanied her to appointments and visited her at least twice a day in the hospital, because she felt it was crucial that her sister have an advocate by her side.
“Not having someone there with you is so hard. If you’re sick, you can’t understand things,” said Hogan, whose sister died last year, at 61. Now taking care of her 86-year-old mother, Hogan hopes a new state law that takes effect this month will make things easier for hospital patients and the people who assist them at home.
Known as the Caregiver Advise, Record, Enable (CARE) Act, the law allows patients to designate a family caregiver on their medical files. It requires hospitals to instruct caregivers on the tasks they will be responsible for at home, such as managing medications, caring for wounds or transferring the patient from a bed to a chair.
The hospital must also notify the caregiver when the patient is to be discharged or moved to another facility.
“It’s a small step, but it’s something,” said Hogan, 60, of Boston.
When Gov. Charlie Baker (R) signed the legislation last year, Massachusetts joined more than 30 states with CARE laws. Their passage comes as a growing number of people—an estimated 844,000 in the Bay State—are providing care at home for relatives or friends.
Aiming for consistency
In recent months, the state Department of Public Health has been working with the Massachusetts Health & Hospital Association (MHA) and AARP Massachusetts, both supporters of the legislation, to iron out the details of how the law will work.
Anuj Goel, MHA’s vice president of legal and regulatory affairs, said most hospitals already provide care instructions to the patient’s caregivers. The law will require that they all do it.
The organization has held training sessions for hospital staffs, helping prepare for the new rules.
“We want to make sure it’s a consistent process for communication with patients and their designated caregivers and that it’s done in a cohesive manner,” Goel said. One aim of better communication with patients and their caregivers is reduced hospital readmissions, he said.
AARP Massachusetts will help get the word out about the new law through social media and information cards that caregivers can tuck into their wallets, said Mike Festa, state director. The cards will be handed out at events or can be downloaded from the AARP Massachusetts website.
Hogan hopes caregivers will soon get more relief through a state tax credit backed by AARP. Earlier this year, she testified on Beacon Hill in favor of a bill that would provide an income tax credit of up to $3,000 to help cover caregiving expenses.
Hogan, who is self-employed as a professional organizer, said caregivers end up shouldering a financial burden, whether it’s lost work time or paying for things like medical equipment.
“It’s stressful, emotionally and financially," she said. "I didn’t mind doing it, and I’d do it all over again. But it’s undervalued.”
Jill Gambon is a writer living in West Newbury, Mass.