When family caregivers burn out, they may seek expensive ED care as their only source of respite.
In this interview, Claire K. Ankuda, MD, fellow in the Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York City, discusses her research on the relationship between caregivers’ well-being and healthcare costs.
On the study’s findings. Ankuda and fellow researchers found that caregiver fatigue and sadness were associated with higher Medicare expenditures and emergency department (ED) use for the patient (Ankuda, C.K., Maust, D.T., Kabeto, M.U., et al., “Association Between Spousal Caregiver Well-Being and Care Recipient Healthcare Expenditures,” Journal of the American Geriatrics Society, vol. 65, no. 10). Specifically, caregivers’—in this case, spouses’—fatigue was associated with $1,937 in higher costs, while caregiver sadness was associated with $1,323 in higher costs during a six-month period. Patients with severely fatigued caregivers also were more likely to visit the ED.
Ankuda has a few hypotheses on why the connection with severe fatigue, in particular, exists. “Simply, when caregivers get more burned out, they can become desperate for help and support,” she says. “For complex patients, there are very few resources to provide home-based care, especially if they don’t qualify for Medicaid. It’s a tremendous gap, and often the only source for respite is to bring someone into the emergency department.”
Sad caregivers also may feel like they have inadequate support and can become demoralized when their spouses’ conditions do not improve. “This really goes hand in hand with the burnout associated with fatigue,” Ankuda says.
Caregivers at higher risk for fatigue and sadness are those who have been caregiving for a long time as well as those who serve in the sole caregiving role. Also at high risk are those with health conditions themselves, she says.
On the costs to caregivers. The high cost of caring for patients with dementia, in particular, may cause caregivers to provide hours of unpaid care each day, adding to the stress and fatigue. A study by Amy Kelley, one of Ankuda’s mentors at Icahn, found that end-of-life care is most expensive among dementia patients, costing more than $287,000 in the last five years of life (Kelley, A.S., McGarry, K., Gorges, R., et al., “The Burden of Health Care Costs for Patients with Dementia in the Last Five Years of Life,” Annals of Internal Medicine, vol. 163, no. 10).
What providers can do. Given these findings, healthcare organizations should have a caregiver support strategy, particularly as they enter into more risk-sharing arrangements that penalize providers for unnecessary ED visits or other unnecessary utilization.
What does that involve? “First and foremost, it is critical that health systems identify high-risk patients proactively,” Ankuda says. Rather than looking at claims-based risk models in isolation, providers also should assess patients’ function to identify high-risk patients. “Implementing functional screening to routinely look for patients with disabilities who need caregiving is a critical step,” she says. Some of the following questions can help determine the function of patients: How often does the patient leave the house? How much time does the patient stay in bed? Does the patient need help with their basic activities of daily living?
Hospitals might consider pilot screenings for conditions that have a significant caregiving need, such as dementia. However, focusing on a specific disease might cause providers to miss caregivers of patients who suffer from multiple chronic conditions who have higher caregiving needs. That is why it’s critical to assess function, Ankuda says.
Next, organizations should screen for support. Appropriate questions include the following: Does the patient have a caregiver who lives in the home? How long has that person been in the caregiver role? Is the caregiver working? How is the caregiver’s health and quality of life? Is the caregiver socially isolated? What skills or knowledge does the caregiver need to more confidently provide care?
Then, healthcare leaders can direct caregivers of high-risk patients to services specifically designed to offer relief and support. These include peer support groups, adult day care services, and even a nurse hotline that runs 24 hours a day, seven days a week. “One of the most helpful things for caregivers is knowing whom to call in the middle of the night,” she says. “Implementing a call line with nursing support [at night] and follow-up during the day can be an incredible relief for caregivers and prevent some of these visits.” Ideally, these call lines should be staffed by nurses with geriatric or palliative care experience and backed by a palliative care team, she says.
On the ROI of these efforts. “We’re convinced that proactively assessing for functional decline and supporting those patients pays off in terms of costs because these are people who go on to become high utilizers,” Ankuda says. “I would encourage organizations to think about at least testing the waters with a routine functional assessment and that could be as simple as asking patients how often they leave the house or whether they rely on help to get through the day and seeing how that informs who their high utilizers are.”
Interviewed for this article:
Claire K. Ankuda, MD, MPH, is a fellow in the Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, N.Y.
