Oklahoma, New Jersey laws require hospitals to educate family caregivers

April 1, 2015

Similar measures are pending in 16 states


After taking her husband to the emergency room at Our Lady of Lourdes Medical Center in Camden, N.J., in February, where he was admitted for eight days because of gastrointestinal bleeding, Charlotte Finlay wasn't sure what to expect. Before diagnosing 68-year-old Dennis Finlay with an ulcer, doctors thought he might have a cancerous tumor. He also has a history of seizures as well as high blood pressure and atrial fibrillation, and underwent back surgery about six years ago.

Cynthia DiFilippo, left, has a preliminary discussion with discharge nurse Clare Mills about follow-on health care for her 95-year-old father, who is being treated at Saint Clare's Hospital in Denville, N.J., for pneumonia and Parkinson's disease. Her father has had a live-in caregiver for 10 years; as his primary caregiver, DiFilippo coordinates his medical care and manages his household.

During his stay at Our Lady of Lourdes, the retired fiberglass distribution manager was moved to multiple areas of the Camden hospital, from emergency to intensive care to a room on the sixth floor. Each time he was moved, Charlotte Finlay got a call from the hospital letting her know his new room assignment. As her husband's designated caregiver, she also received detailed information from Our Lady of Lourdes' medical staff pertaining to his discharge, which included managing his diet and medications, keeping him comfortable, making doctors' appointments and arranging for physical therapy.

Such precise instruction is standard procedure at many hospitals and health care systems throughout the United States, but a new law now requires this practice in New Jersey and Oklahoma. Similar measures are pending in 16 other states.

The law, called the Caregiver Advise, Record, Enable (CARE) Act, was designed to support caregivers with information when a family member goes into the hospital and adequately instruct that caregiver when the family member is sent home. Among its stipulations are three important parts:

  • The name of the family caregiver must be recorded when a loved one is admitted into a hospital or rehabilitation facility.
  • The family caregiver is notified if the loved one is to be discharged to another facility or back home.
  • The hospital or rehabilitation facility provides an explanation and live instruction of the medical tasks — such as medication management, injections, wound care and transfers — that the family caregiver will perform at home.

Breaking the readmission cycle
According to AARP, which champions the CARE Act, nearly half of the 42 million family caregivers in America have performed medical and nursing tasks for loved ones. As a result, family caregivers can be instrumental in keeping loved ones from being readmitted to the hospital and safe at home.

"We know that one in five people in the Medicare system return to the hospital within 30 days," says Elaine Ryan, vice president of state advocacy in the government affairs department at AARP. "There's both a human and financial cost to the system. If the CARE Act helps family caregivers with peace of mind and trains them in what they are supposed to do, that's a first step in ending the cycle of readmission."

Repeat after me
Designating a family caregiver when a patient is admitted has long been standard procedure at Lourdes Health System hospitals, as is making sure the caregiver receives precise instructions when a patient is discharged, says Dr. Alan Pope, the system's vice president of medical affairs and chief medical officer. Lourdes is a member of Livonia, Mich.-based Trinity Health.

"We always try to involve a family member and have them explain back to the nurse whatever instructions are given so that the patient gets the best care possible upon discharge," says Pope, adding that he understands not all hospitals operate like his. "The CARE Act ensures that a hospital doesn't forget about the patient as soon as (he or she) leaves. It's really a way to provide more comprehensive care to patients."

Susan Sorge, director of case management at Saint Clare's Health System in Denville, N.J., agrees, noting that the law helps "formalize the process." Saint Clare's is a member of Catholic Health Initiatives of Englewood, Colo.

"We have been doing this in essence for many, many years and have been very proactive, making sure we not only go over with the caregiver everything from medication management to helping them get in touch with a home care agency or securing special equipment for their home, but we also touch base with them once they are home to make sure things are going smoothly."

Advance planning
Added Cindy Michalowski, one of Saint Clare's discharge nurses: "I begin education (with the caregiver) at the time of admission. Education is a daily process. I make sure to meet the family right away so that we can establish who is best able to be the patient caregiver. We constantly reinforce through education, prior to discharge, so when the patient goes home the caregiver knows exactly what to do and how to do it.

"I sent someone home with a catheter recently and trained the caregiver how to get it on and off and how to maintain a sterile technique. My goal is not to do it at discharge because that time is too overwhelming, but long before."

Neither Pope in New Jersey nor Dr. Robert Rader, chief of staff of St. Anthony Hospital, an SSM Health facility in Oklahoma City, have heard from their respective states as to what hospitals must do to be in compliance with the new law.

"The law has been implemented, but we haven't heard from the state how hospitals should report," says Rader, whose specialty is family medicine. "We were doing what the law expects anyway. The only difference is the way the conversations are being documented. It just adds an administrative burden."

Burden or benefit?
Ryan at AARP says the intention of the CARE Act is not to be burdensome. Accountability is incumbent upon the hospital and not the physician, she says.

"The idea is that there is continuity so everyone has the same experience, and discharge planning occurs in every hospital," she says. "As of now, recording the name of the caregiver is not routinely done.

"If the CARE Act can help end the cycle of (hospital) readmission then I think we're moving forward in a common sense way and not in a high-cost way."

Meanwhile, Charlotte Finlay, 70, who is serving as her husband's caregiver, says she was impressed with how Our Lady of Lourdes' medical staff communicated with her during his stay and upon discharge.

"They made sure I knew how to monitor him and his medications at home, what to look for should there be any problems, who to call (at the hospital) and for his doctor's appointments," she says. "I felt like we were in good hands."


Copyright © 2015 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.