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JAMA Forum Archive, 2012-2019: Health policy commentary from leaders in the field
JAMA Forum

Supporting Family Caregivers, One State at a Time: The CARE Act

Question: With the US Congress apparently unable to advance federal policies, except for a tax reform bill, how do we move forward the policies needed for improving health and health care, while reducing costs?

Image: Rawpixel Ltd/Thinkstock

Answer: One state at a time and with a committed constituency.

In May 2016, I wrote a JAMA Forum blog post about a 2012 survey of family caregivers conducted by Susan Reinhard, PhD, RN, director of the AARP Public Policy Institute, Carol Levine, MA, who directs the United Hospital Fund's Families and Health Care Project, and Sarah Samis, MPA, now chief of staff at NYC Health + Hospitals. Their report on the project, Home Alone: Family Caregivers Providing Complex Chronic Care, confirmed that almost half of family caregivers provide complex medical-nursing tasks, such as changing wound dressings and administering multiple medications by various routes, often with little, if any, guidance. Consequently, they are uncertain, fearful of causing harm and are isolated in providing the care their loved ones need.

A champion of the 43.5 million US adult family caregivers, AARP outlined the elements for a policy that could ensure that hospitals are not discharging patients without preparing family caregivers. The CARE (Caregiver Advise, Record, Enable) Act requires hospitals to do 3 things:  ask patients if they have a family caregiver, contact that person if the patient is to be discharged or transferred, and teach the family caregiver how to provide the care the patient will need after discharge.

Recognizing that passing such a federal policy could take years, AARP developed a strategy for moving this policy forward, one state at a time. In 2014, Oklahoma was the first state to pass the CARE Act. On a recent webinar for the Institute for Healthcare Improvement, AARP Vice President for State Advocacy and Strategy Integration Elaine Ryan reported that in less than 4 years, 39 states, territories, and the District of Columbia have enacted the CARE Act through legislation or regulation and it is under consideration in the remaining states. This state-by-state approach has meant that some variations have been enacted, but the 3 key elements are in every version.

To identify challenges and best practices in its implementation, AARP has been conducting a national scan of hospitals in states that have passed the CARE Act. (Disclosure: I am a consultant to AARP and have conducted some site visits.) In 2017, there were 18 visits in 7 states, including at community and teaching hospitals large and small, rural and urban, nonprofit, government, and for-profit. Visits include talking with those who have led CARE Act implementation and those engaged in providing care it requires. The scan will continue through 2019.

Culture Change

Invariably, hospital leaders and clinicians say they’ve “always done what the act requires,” but in further probing, they acknowledge the act is formalizing procedures that had been sporadic, at best—such as changing the electronic record so it captures necessary information and gearing postdischarge teaching toward a family member’s preferred ways of learning.

Most hospitals find that the act is contributing to a culture change in which family caregivers are recognized as partners for the patient’s recovery and improved outcomes. This has been helped along by the movement for patient- and family-centered care, but other federal policies enacted under the Obama administration have focused attention on reducing hospital readmissions and improving patient and family satisfaction.

It will be impossible to sort out what can be attributed to the CARE Act versus these other forces, but the act has given hospitals impetus to rethink how they engage with patients and families. For example, most hospitals have formed or are forming patient and family advisory councils; in one instance, a council helped to shape a workable policy for open visiting hours about which the staff had been leery. Other hospitals are including family caregivers in daily team rounds and creating or enhancing existing processes for family caregivers to call for help after discharge. At least one hospital credited these changes with helping them to reduce readmissions significantly.

This culture change involves recognition that a hospital’s responsibility to the patient doesn’t end at the discharge. In one health system that is also an accountable care organization, the procedures the act requires have been extended to the outpatient practices of physicians affiliated with its hospitals, even though the law doesn’t require this. Other hospitals expressed an interest in moving in this direction.

Political Lessons

This one-state-at-a-time approach to policy change isn’t easy but may be more successful than a federal approach. As the largest consumer advocacy organization in the world, AARP has a powerful membership that is active through its state offices. Members know their state policy makers and can identify legislative and regulatory champions, many of whom have had personal experiences of family caregiving. This is not a partisan issue.

Carol Levine, an author of the Home Alone report and a leading advocate of family caregivers, often asks: “Why are we assuming that family members can provide complex care to their loved ones?” The question speaks to the need for conversations on family caregiving that can lead to a culture change, not just within hospitals but also within our health care system overall, our communities, and our nation.

About the author: Diana J. Mason, PhD, RN, Senior Policy Service Professor and Co-Director of the Center for Health Policy and Media Engagement, George Washington University School of Nursing; and Professor Emerita at Hunter College, City University of New York. She is former president of the American Academy of Nursing. (Image: Ted Grudzinski/AMA)