During the 24 years I worked as a psychologist in family medicine, I heard many complaints about patients’ family members gumming up the healthcare system in various ways. For instance:
“My patient’s wife keeps asking me to do things I can’t do—like arrange for her husband to live elsewhere—and taking up my time with frequent phone calls,” vented one physician.
“I think the adult children are stealing and abusing my patient’s pain meds,” said another.
“The family members won’t decide about changing the patient’s code status,” said a third, “and are making our hospital team continue life supports we know won’t change the ultimate outcome.”
These were the gripes of frustrated clinicians. They were not daily reactions but occurred often enough to suggest a widespread professional leeriness towards families. At its most harsh, patients’ family relatives were viewed as nuisances or worse—unrealistic, demanding, self-serving and untrustworthy. They were occasionally condemned for upending plans, obstructing patient-provider relationships, and unfairly impugning doctors who didn’t agree with them. Many healthcare providers maintained cordial relations with family members but minimized deeper engagement as nearly antithetical to “patient-centered care.” If asked whether families help or hinder healthcare, these providers would probably contend that, on balance, they make professionals’ jobs more difficult and cost the system essential dollars through reduced efficiency.
That’s not the bet, though, currently being made by some of the nation’s biggest health insurance companies, including United Healthcare, Centene, AmeriHealth Caritas, and others, who have launched pilot caregiver support programs, especially for family members whose loved ones are receiving managed Long-Term Services and Supports. The insurers are looking at our rapidly aging society and the rocketing growth of home- and community-based services and believe that it is those sometimes-maligned family members whose valiant efforts can be the difference between chronically ill subscribers bouncing about ERs, hospitals and nursing homes and remaining safe and sound in their own homes. They believe that well-trained, devoted and hardy family caregivers, primed to partner with willing healthcare and social service providers, may be the key to holding down healthcare and long-term care costs.
On what grounds are the insurers basing their bets? Research—and perhaps a little wishful thinking. There is existing data to demonstrate that engaged family caregivers can help patients with dementia and other progressive conditions live as well as possible outside of institutions. But, historically, most family caregiver research has focused on the impact of caregiving on family members’ well-being and not on patients’ healthcare utilization. We need more research on which elements of family caregiver support yield the greatest decreases in patient utilization and costs.
It is worth reviewing what little we have in hand, however, because it is promising. Everyone points to the classic 2006 Neurology study by NYU epidemiologist Mary Mittelman and colleagues entitled “Improving Caregiver Well-Being Delays Nursing Home Placement of Patients With Alzheimer’s Disease” (https://www.ncbi.nlm.nih.gov/pubmed/17101889). It describes how a six-session individual and family counseling and support intervention, along with phone contact as needed, forestalled institutionalization of patients with dementia by 557 days on average—likely an over $150,000 savings per patient in today’s Medicaid costs. To many observers, it proved definitively that a proactive investment in family support could pay big dividends in the long run.
More recent studies on the impact of caregiver functioning on patient utilization lack the dramatic punch of Mittelman’s breakthrough work but are worth noting. In 2016, the National Bureau of Economic Research put out a White Paper, “What is the Marginal Benefit of Payment-Induced Family Care?”, which found that paying patients’ family members money to provide home-based care ultimately saved Medicaid significant sums. Patients tended to by family members had better health outcomes—including fewer bedsores, respiratory infections and urinary tract infections—and consequent lower healthcare utilization, compared to a control group with standard professional care, because their family caregivers effectively served as round-the-clock primary prevention and an early-warning system for acute medical problems.
And a 2016 study by Johns Hopkins epidemiologist David Roth and colleagues—“Medicare Claims Indicators of Healthcare Utilization Differences After Hospitalization for Ischemic Stroke: Race, Gender and Caregiving Effects” cites having a family caregiver as one factor leading to patients requiring fewer hospital days, ER admissions and primary care visits after they had been hospitalized for stroke.
So can families reduce healthcare costs? Probably, though we need many more robust studies with different populations to settle the question. I’m hoping that the insurers who are now rolling out enhanced family caregiver support programs around the country are rigorously evaluating whether these programs actually lower patient utilization and, if so, how.
The insurers’ programs would be greatly boosted if healthcare professionals also embraced family members as partners in care. Research alone won’t bring about that change in providers’ attitudes and behaviors—at least not in the short term. It will take transforming our patient-centric medical culture over the long haul through workforce development, perhaps by matching young learners during their graduate school programs with, say, the spouses of home-bound patients with dementia to show them who is really doing heroic work on the frontlines of healthcare. Only then will our professionals join our insurers in getting behind the nascent power of our families.