No Disrespect: How Family Caregivers Can Improve Care Transitions

By Anne Montgomery

Leaning into the podium at the Graduate Center of the City University of New York on May 14, Judy Feder, professor of public policy at Georgetown University, is poised and intent.  She is speaking to a room full of researchers, advocates and academics who are hoping to ignite a national conversation about why now is the right moment for family caregivers to underscore their importance to the U.S. health and long-term care system.

But first, Feder administers a reality check: Despite ”overwhelming evidence” that caregivers are “the essential glue” in our health care system, they are often met with “disregard” or “disrespect” by large institutions and individual practitioners, she said.  Moreover, the very fact that family caregivers are the “dominant source” of help for 80% of ill, frail and disabled individuals living at home and in the community contributes to concerns about so-called “crowd-out” costs: The “fear of replacing” unpaid family caregiver labor, she said, has led policymakers and providers to count on their support as a “fiscal convenience.”

A classic example of this overreliance on family caregivers, according to Feder, is the massive (though rarely discussed) shift of responsibility that occurred following implementation of Medicare’s prospective payment system (PPS) for hospitals during the 1980’s.  As hospitals realized that it was in their financial interest to discharge patients more rapidly (often referred to as “quicker and sicker”) under a PPS system, the result for family caregivers was that they were asked to take on much more – often without any discussion, and with no preparatory training or sustained support. “All of this happened with no thought,” Feder said.

Concurrently, a growing body of evidence — including a recent survey conducted by AARP and United Hospital Fund (UHF) – has established that family caregivers are routinely undertaking ever-more complex medical and nursing tasks.  For example, it is now common for caregivers to be expected to assist with ostomy and wound care, administration of intravenous fluids and injections, preparation of foods for individuals on special diets who have trouble chewing or swallowing, and management of ventilators and tube feeding systems.  The net outcome, Feder observed, is that family caregivers find themselves under increasing pressure to “turn their homes into hospitals.” Changing this dynamic, she added, will require serious work.  In a call to action, Feder declared: “The support of caregivers should not be merely “assumed,” but rather it must be “thoughtfully considered….We need to turn this around and get past the lip service.”

Others at the UHF conference, titled “Transitions in Care 2.0,” (which culminated in the release of a ten-step action agenda) were in full agreement.  Susan Reinhard, Senior Vice President of AARP’s Public Policy Institute, observed that the recent AARP-UHF survey documents that more than two-thirds of respondents report significant difficulty with certain tasks — notably wound care, assisting with the use of incontinence equipment and preparation of special diets.  Helping a family member or friend cope with a colostomy is not a traditional ADL,” [Activity of Daily Living] Reinhard said.  The ADL assessment instrument, which focuses on basic, non-medical assistance with eating, dressing, toileting, bathing and transferring, was originally developed in the 1950’s as a way of measuring the help that patients recovering from hip fractures needed.

Mary Naylor, a professor and researcher at the University of Pennsylvania School of Nursing, argued that in the era of the “age wave,” providers should reframe their professional perspective to see themselves in part as “enablers of patients and family caregivers.”  Both Eric Coleman, professor of medicine at the University of Colorado and Luke Hansen, professor of medicine at Chicago’s Northwestern University, noted that it is still uncommon for physicians and hospitals to collect any data on family caregivers — and even rarer to train them. This presents problems, they acknowledged, in making various improvements in the care system “stick.”  Feminist author and caregiver Alix Shulman suggested that it is precisely the lack of “anticipatory guidance,” or training, which individuals who choose to make major changes to their lives in order to assist a seriously ill or disabled loved one find most difficult of all. “Specific conversations are needed,” she said. “Not just a list of websites or a stack of brochures.”

UHF’s David Gould and Carol Levine urged researchers and policymakers to join together to support caregiver assessments that include documentation of both the needs and limitations of caregivers as part of the routine delivery of health and long-term care services. Also needed, they said, are regular surveys of both the patient and the family caregiver’s experience with services, as well as a more sophisticated and systematic approach to identifying the networks of family, friends and neighbors who come together to form a “caregiver corps,” or circle of support, that can be assembled to collectively provide the right level of help at the right time.

Making the necessary adaptations to our rapidly evolving health and long-term care services systems in order to cost-effectively train large numbers of people who may be willing to volunteer some of their time to assist those who wish to age in place is not a simple matter.  Perhaps one way to move a conversation forward is to consider whether the Center for Elder Care and Advanced Illness concept of a Caregiver Corps of trained volunteers can be created to help teams of health care practitioners and direct care workers deliver a more seamless array of services and supports – while also giving families the confidence that they will be able to sustain assistance for the millions of frail elders and individuals with disabilities who want to remain a vital part of the community right up until the ends of their lives. Such a Corps, which would recruit volunteers young and old, would be a step toward addressing workforce shortage issues, and might give communities ideas and strategies they can adapt to solve pressing concerns. Now is the right time for family caregivers and their many allies to work together to think through the possibilities.

Key words:  United Hospital Fund, care transitions, family caregivers, Caregiver Corps, Mary Naylor, Eric Coleman