Carol Levine, Senior Fellow, joined the United Hospital Fund in October 1996 as director of the newly formed Families and Health Care Project, which has been devoted to understanding family caregiving, at the time a hidden workforce that was assumed by policymakers to be a perennial source of free labor to take care of frail older adults. Her retirement in May 2019 offers an opportunity for her to share her insights on how the world has changed for the nation’s 43 million family caregivers—for better or for worse. We also asked her to look forward and to share her thoughts on how the needs of family caregivers can be better acknowledged and addressed.
For a chronology of UHF's Families and Health Care work starting in 1996, click here.
Q: Carol, how did you become interested in family caregiving and what brought you to UHF?
A: Like many people in the field, the personal became professional. In January 1990 my late husband and I were in a terrible automobile accident. He suffered a serious traumatic brain injury and was left quadriplegic. Most people think of family caregivers moving slowly into that role as a parent or older relative undergoes cognitive or physical decline. But for Howard, it was total disability—and for me, total immersion. At the time, I had finished directing a citizen’s commission on AIDS, which UHF had created with other New York funders, and I was working on the impact of the epidemic on motherless children. At the same time, I was trying to provide the best care possible for Howard at home, with daytime help from a series of terrific male aides.
One day I had lunch with one of my AIDS colleagues who had been asked by a foundation to suggest some new and unexplored areas in health care. I described my dismaying experiences as “The Wife,” expected to do everything on her own, and said, “What about looking at family members of people who survive trauma or have chronic illnesses?” He proposed the idea to the foundation, and they organized a meeting. The conversation was spirited. Some of the participants said that there was no problem; families were doing just what they had always done. Others disagreed and pointed to changing demographics, technology, and cost containment. A few researchers in the field worried that paying attention to caregivers would diminish the needs of older adults. A few frankly wondered what I—just a wife, albeit with a MacArthur Foundation Fellowship—had to offer to experts in the field. After that meeting I realized that this was a subject that I cared deeply about. I met with David Gould, then a senior vice-president at UHF, and boldly asked for a job. We both thought this would be a short-term project---I was hoping for 18 months. UHF got some initial funding and thus began the Families and Health Care Project. I had no specific goals, no metrics, no outcomes—just a passionate belief that something was wrong with a health care system that saved lives but then abandoned these patients and their unprepared families. At that time that was enough to get started.
Q: What are the most significant societal changes that have affected family caregiving?
A: People are living longer but often not in the best of health. Every day brings new evidence of how poorly prepared we are as individuals, families, and society to deal with this demographic shift. Families are still the basic units of society, but families don’t come in one standard format. One of the first articles I wrote that addressed ideas about family was “Has AIDS Change the Concept of Family?” (Milbank Memorial Quarterly). Based on my work in HIV/AIDS, I saw how the epidemic was creating new, loving relationships that served all the traditional roles of family but that were caught in old paradigms and laws about child custody, health care, and housing—to name just a few examples. Because I knew so many men who were caregivers for their partners and friends, I was surprised to learn in my early conversations about caregiving that it was assumed to be a woman’s job and not a particularly demanding one at that. I encountered that stereotype in my husband’s rehab center when a male caregiver made an infrequent visit and was greeted by the staff with great enthusiasm, while my daily and prolonged visits were ignored or greeted with, “You should have been here earlier to talk to the doctor.” The idea that caregiving used to be done for love and love alone and that today’s caregivers are selfish and greedy persists, even though historical studies have shown that expectations of financial benefit were often part of the deal. We now have lots of data showing that caregivers come in all ages, genders, cultural and ethnic backgrounds, and socioeconomic status. But there are still stereotypes that are hard to change.
Q: How have changes in the health care system affected family caregivers?
A: It’s hard to know where to begin. Health care today is such a huge, complex, and powerful enterprise that is difficult to describe, much less navigate. Sometimes when I give a slide presentation, I show a slide of a maze—complicated but with a clear pathway—to demonstrate what family caregivers expect to encounter. Then I show a slide of a Jackson Pollock painting with no discernible pattern to portray what they find. We often hear the term “silos” to describe the fragmented system. But actual silos are just containers, whereas health care silos are internally complicated as well as isolated from the other parts of the system. As much as we hear about cost containment in health care, what family caregivers experience is cost escalation—short hospital stays, prescription drugs, supplies that aren’t paid for, home modifications, and especially, help at home. Family caregivers must cope with increasing difficulties of managing multiple chronic conditions, treated by multiple physicians, who prescribe multiple medications. It’s not uncommon today for an older person to be taking 10 or more medications, and not just in pill form but also by injection or infusion. Family caregivers also must navigate the parallel payment world of public and private insurance, with its own arcane language and rules. This isn’t your grandmother’s family caregiving!
One of the standard questions asked of patients to determine their level of health literacy is: “Do you need someone to help you fill out medical forms?” By this standard, hardly anyone is health-literate. One of the things I am proudest of in my work at UHF is that the material on our Next Step in Care family caregiver guides is as easy to understand as we could make it. We consulted with a health literacy expert to review all the guides—some 35 of them. And they are in four languages. Hardly any other website does that.
Q. What are some of the challenges that haven’t changed?
A. Fundamentally, it is difficult to change entrenched behaviors. So we still see a number of communication challenges, both between health care providers and patients and family caregivers, and between health care providers in hospital or skilled nursing facility handoffs—especially handoffs to providers in the community. We still see a lack of adequate preparation for family caregivers who are providing complex care in the home. We still see a disconnect between health care services and social services in the community. When I talk to family caregivers now, I find that many of their challenges were the same as the ones I personally experienced so many years ago. For example, I will never forget the day my husband was discharged from the rehab facility, and a nurse turned to me and said, “You’re on your own now.” I wasn’t prepared for how true it was back then, and I know many family members just beginning to assume the role of family caregiver aren’t prepared for how true it still is today.
Q. And what are the challenges that are new?
A. There are new developments, such as the creation of the “hospitalist” role, which has changed the practice of primary care providers. Hospitalists are specially trained to provide critical care, which is certainly a good thing. But they don’t know their patients the way primary care doctors do. Family doctors used to visit their patients when they were hospitalized; now they are lucky to even know that their patient is in the hospital, much less what their treatment entails. (I should note that many hospitalists do try to inform primary care providers, but communication is still difficult.) HIPAA—the federal regulation governing protection of personal medical information—didn’t exist until 1996. While the privacy protections it set up shouldn’t be used to block health care providers’ communication with family caregivers, that happens all the time. The increasing prevalence of dementia adds another level of complexity to caregiving. And technology has entered the picture, too—often accompanied by the belief, or maybe just the hope, that it can provide stand-alone solutions.
Q. Can you expand on that technology issue?
A. Inventors and entrepreneurs have begun to tackle some of the challenges of an aging population. A few years ago, I was part of a panel discussion at a health care/technology conference; there was an eager response to the idea of caregivers as an untapped market. From some of the other presenters, I heard about wearables that measure every aspect of bodily functioning, and avatars that look like puppies but talk to isolated people through human voices. But my concern is that everyone may be putting too much emphasis on products and systems to replace the family caregiver. Rather, I think the technologies that will make a difference are the ones that relieve some of the burden of family caregiving. The human role will continue to be important. How do you create technological solutions to help family caregivers and their family members in the home? Whatever those solutions are, they need to be developed in a way that engages caregivers rather than making assumptions about what would be helpful to them.
Q. Where are we seeing progress in family caregiving?
A. I think we have really made dramatic changes in the thinking of many leaders in the health care community. Back in 1997, our initial focus was to include family caregivers in transitions in care between health care settings—one of the first efforts to call attention to the importance of transitions in care in general. Many health care providers didn’t want to hear that it was their responsibility to include family caregivers in discharge planning. Today, with a greater focus on the quality of care and preventing avoidable readmissions, providers are intently focused on how to engage family caregivers more effectively. Several different protocols to improve patient discharges and the transition process have been developed, including Eric Coleman’s Care Transitions Intervention, Mary Naylor’s Transitional Care Model, and Brian Jack’s Project RED. UHF’s work with Brian Jack added a new tool to the Project RED toolkit, focused specifically on family caregivers. And for the past several years, I have been on the research team of a PCORI [Patient-Centered Outcomes Research Initiative] $15 million federal grant called Project ACHIEVE. My colleagues on this major effort have been totally supportive of including family caregivers in all discussions and activities.
Q. Are there aspects of family caregiving that have not received appropriate attention.
A. Yes, several. Take, for instance the special problems of middle-class caregivers—they’re not poor enough for Medicaid long-term care services and not rich enough to pay privately for everything that Medicare or private insurance doesn't cover. This is particularly critical for employed caregivers who need to earn a living and perhaps take care of other family members. Forcing people into poverty to get assistance hardly seems a policy worthy of a rich nation.
And then there is the issue of children and teenagers who become caregivers and who often do nearly everything adults do. But unlike in other countries, such as the UK, Canada, and Australia, young caregivers in the U.S. are almost entirely unrecognized. The survey UHF and National Alliance for Caregiving did in 2005 remains the only national effort to estimate the number of these youngsters—the total of 1.5 million was almost certainly an underestimate. And now with the opioid epidemic, the numbers and challenges are growing. There seems to be a disconnect in our culture between complaints about "spoiled" kids (and, yes, they do exist) and the reality that many kids live hidden lives taking care of siblings, parents, and grandparents.
And the last thing I’d mention in terms of issues requiring more attention is the question of how to pay for long-term care—in the many ways long-term care can be defined. Commissions have tried and failed to come up with solutions that are economically viable and politically acceptable. States like Hawaii and Washington are trying to fill in some gaps, but they only touch the tip of the iceberg. So much remains to be done.
Q. Looking back, what do you think have been the United Hospital Fund’s most significant accomplishments in getting us to where we are today?
A. We’ve produced lots of information to shape the discussion and led multi-organization collaboratives that have yielded real results. But if I limited the highlights to five things, I’d start with the publication of UHF’s report Rough Crossings in 1998, really the first document to identify transitions in care settings as a critical point at which the health care system fails to include family caregivers; starting with this publication and in many resources that came later, we made a real effort to include the voices of caregivers themselves. Second, I’d point to the 1999 Health Affairs article I co-authored with Peter Arno, in which we provided the first estimate of how much unpaid caregivers contribute to the health care system; our $196 billion figure—now well over $450 billion—really got people’s attention. Third, I think the creation of UHF’s Next Step in Care website has provided a great resource for family caregivers around the country, as well as for the social service and health care professionals who work with them—presenting critical, practical guidance on what people need to know. Fourth, Home Alone, the 2012 report UHF produced in partnership with the AARP Public Policy Institute, revised with the results of a 2018 survey, published as Home Alone Revisited, has changed the understanding among providers about the types and scope of the burdens experienced very commonly by today’s family caregivers. Finally, UHF followed the enactment of the CARE Act in New York State with a toolkit for hospital staff on implementing the requirements to identify, involve, and instruct family caregivers, as well as guides for patients and caregivers about what to expect in a hospital stay.
Now we need to move to the next step—creating more effective ways to train caregivers to do these tasks. I should add that none of our work is done in isolation. Where UHF is strongest is in taking a leadership role while working with a range of partners, providing a strategic framework for projects that are rooted in reality. Our work has also benefited from the many professionals with whom we have partnered over the years, including health care providers, policymakers, and other stakeholders. And whatever we do, we include the voices of family caregivers.
Carol Levine directed UHF’s Families and Health Care Project from 1996 to 2019 and is now a Senior Fellow with UHF. In 1993 she was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics. She was named a WebMD Health Hero in 2007 and a Purpose Prize fellow in 2009. In 2014, she had two books published to strong reviews: Living in the Land of Limbo: Fiction and Poetry about Family Caregiving (Vanderbilt University Press) and Planning for Long-Term Care for Dummies (AARP and Wiley). In 2019 she published Navigating Your Later Years For Dummies (AARP and Wiley).