Make Family Caregivers Matter More: Measure Them

Early in my medical training a sage family physician, Jack Medalie, reminded us students that there's often a "hidden patient whose suffering goes unnoticed." Medalie was referring to family members who may be struggling as much or even more than the person that is being directly cared for by the doctor. Medalie was a pioneer in the medical specialty of Family Medicine, a specialty that didn't exist until 1969, but today represents 80,000 American physicians. I think he was on to something!

In addition to traditional medical diagnosis and treatment, the pioneers of Family Medicine recognized that to truly help people live better lives doctors needed to understand and address family and community dynamics. I loved the holistic thinking and was inspired to become a part of this specialty; I later graduated from the same Family Medicine program that Medalie launched at Case Western Reserve University.

While medical issues at all ages and all stages of life profoundly impact families--the common medical issues of aging exact an enormous toll on families. Family caregivers are daily working in the shadows of our health care system, helping their loved ones that suffer from Alzheimer's disease and other neurological conditions, heart disease, severe arthritis, cancer, and various other diseases and combinations of diseases. The efforts, effectiveness, and strength of family caregivers are major factors in the success or failure of health care for older people. Family caregivers also have other personal and workplace responsibilities that are heavily impacted by their caregiver role.

With the aging of the Baby Boomer generation there will be over 80 million people insured by Medicare; by 2022 Medicare is expected to cost the country over $1 trillion per year. The economic and societal importance of how we navigate the demographic shift cannot be underestimated, and family caregivers are at the heart of these issues.

When family caregivers succeed their loved ones are less likely to be unnecessarily hospitalized on Medicare's dime, the caregivers remain more productive in the workforce, they are better parents and partners, and their own health is better. There's a lot at stake. This is more than a health care concern; it's a business issue, economic issue, and family issue.

In spite of the central importance of family caregivers to their loved ones, to the health care system, and to the future of our country, they remain as Medalie noted decades ago "hidden." The best step to get caregivers out of the shadows of American health care is to routinely measure and report on their experience and their outcomes. While such measurement would require substantial forethought and expense, it will lead to real action and improvements.

In recent years we have seen hospitals, physicians, insurers, nursing facilities, and home health agencies develop incredible efforts to improve patient experience. Health care leaders are studying hospitality industry behemoths like Disney and Ritz Carlton, hospitals are appointing "Chief Experience Officers," and the strategic plans of health care providers around the country include improving the patient care experience.

These efforts are directly related to Medicare's mandatory measurement and reporting on the patient experience at the provider level. But, family caregiver experience is not routinely tracked.

Medicare also benchmarks providers on various quality measures and outcomes, and many types of organizations that work with Medicare beneficiaries have "stars rating" systems. However, these measurement systems don't routinely track outcomes for family caregivers. Why not?

Imagine if such outcomes and experience measures were in place for family caregivers how much energy, creativity, innovation and competitive spirit would be unleashed to try and change health care services to better meet the needs of family caregivers? It would be of particular importance to measure aspects of caregivers that contribute to their ability or inability to keep their loved ones at home and in the community. There would be more focus of doctors and others to do all we can to help people get needed home care supports to buttress the efforts of family caregivers.

Efforts to increase provider level caregiver experience could be coupled with a new focus on family caregivers in the high level research and reporting done by the Surgeon General, Institute of Medicine, National Institutes of Health, Centers for Disease Control, and Agency for Health Care Research and Quality. Make family caregivers matter more to Medicare--measure them.