Advocates want a stronger role for family caregivers when patients leave the hospital

Advocacy groups are trying to mobilize lawmakers to write and pass a bill requiring hospitals to systematically inform and train family members or others who care for patients after they’re discharged from the hospital.

Family caregivers account for 80% of the care that patients receive at home when they are released from the hospital or are enrolled in home-based long-term care services, said Janet Zander, advocacy and public policy coordinator for the Greater Wisconsin Agency on Aging Resources, at a Capitol press conference Tuesday.

“They play a vital role in meeting the care needs with loved ones and assisting family members to communicate with health and long-term care providers,” Zander said. But many patients go home to caregivers who haven’t been adequately prepared or informed about a patient’s recovery needs, she said, such as doctor-ordered changes in their diet or new medications.

“Too often caregivers are excluded from discharge planning conversations, critical care training and treatment discussions,” Zander said. “The CARE Act focuses on improving communication between family caregivers and hospital practitioners.”

Tuesday’s press conference was organized by AARP along with the Wisconsin Aging Advocacy Network. Nearly 600,000 Wisconsin residents provide unpaid care for a family member or other loved one on a continuing basis, said Martha Cranley, state director for AARP-Wisconsin.

“Without family caregivers, Wisconsin’s system of caring for our loved ones as they age would collapse,” Cranley said. “Which is why we need to do much more to support them right now.”

The bill that Cranley, Zander and other allies were promoting Tuesday hasn’t officially been written this legislative session, although the outlines are clear. It would call for hospitals to establish, before a patient is discharged, a designated family caregiver. That person would be kept informed about the patient’s progress while hospitalized. As part of the discharge planning process, the designated caregiver also would be trained in what to expect and how to provide care that the patient needs while recovering at home.

Beth Fields, an occupational therapist and geriatric health and caregiving researcher at the University of Wisconsin, described her own experience with the challenges caregivers face.

After a back injury, her brother spent three weeks in intensive care before being sent home. Her family received “little information on how to support him when he got back home,” she said, and medical complications sent him back to the hospital.

“We must take a critical look at the support we are providing to the caregivers who are the backbone of our long-term care health care system,” Fields said.

Research, she added, has shown that including caregivers in discharge planning “significantly reduces the risk of hospital readmissions.”

Staff from hospitals that have included family caregivers in discharge planning have reported that they “are more likely to ask the important questions and receive feedback from clinicians,” Fields said, “and leadership from most hospitals acknowledge the value of the policy for improving quality experiences, not only for the patients and the families as well.”

The federal Centers for Medicare & Medicaid Services (CMS) has approved billing codes starting in 2024 that would enable hospitals to get reimbursed for caregiver education. “We think it’s a game-changer” in potentially winning greater support for the measure, Zander said in an interview.

More than 40 states have already passed similar legislation to the CARE Act. In 2019 Republican lawmakers introduced a similar bill in Wisconsin, but it never had a hearing. “We believe if we could even get a hearing, there’s lots of stories to tell,” Zander said.

The primary opposition has been from hospitals, and an executive at the Wisconsin Hospital Association (WHA) told the Wisconsin Examiner Tuesday that the organization remains opposed to the legislation’s mandates.

Ann Zenk, senior vice president of workforce and clinical practice for WHA, said in an emailed statement that Wisconsin hospitals already “have among the highest scores in the nation for providing post-discharge care and medication instructions, discussing patient needs during their recovery, signs and symptoms to watch for, and what assistance patients need upon discharge.” 

The assessments referred to are part of a survey conducted for CMS, a WHA representative said.

Zenk attributed past failures of the proposal to “the strong track record of Wisconsin hospitals.” She added, “State lawmakers have been wary of adding even more government regulations on hospitals that are already drowning in bureaucracy and red tape.”

Reimbursement from the federal government for preparing caregivers won’t change the hospital lobby’s stance, Zenk said. She argued that hospitals can qualify for reimbursement without a state requirement and already have other incentives to reduce readmissions, including the threat of federal penalties.

Advocates for the legislation say patients and their families tell a different story.

“The hospitals say, ‘We already do that,’” said Tamara Jackson, public policy analyst and legislative liaison for the Wisconsin Board for People with Developmental Disabilities, referring to the proposal’s requirements to engage family members. “The experience of people is not actually matching that.”

David Bowen, a former Assembly member and now associate state director of advocacy for AARP, said the organization is beginning outreach to other health-related organizations in order to build “a new coalition” to advocate for the proposal.

Despite past roadblocks to the proposal, Zander said the network of groups advocating it want to work to pass it, including reaching out to the hospitals and trying to overcome their opposition. Even with the number of states that have enacted something like it, she said,  “we can make it different in Wisconsin, so it works for everyone.”