Mayo Clinic Replicates Ken Hamilton Caregiver Center at NWH

With the launch of a pilot program at its Phoenix, AZ hospital this month, the Mayo Clinic became the 23rd site to replicate the 15-year-old Ken Hamilton Caregivers Center (KHCC) at Northern Westchester Hospital, which provides caregivers with emotional support and resources in a hospital setting.

“It took a pandemic to finally build awareness that caregivers need support systems too,” says KHCC program director, Jerri Rosenfeld, LCSW. “Without any training, caregivers are thrust into a world of doctors, hospitals, tests and prognosis, and asked to make potentially life altering decisions about their loved one’s medical care. They are often exhausted, not thinking clearly, not eating, experiencing overwhelming stress, and feel guilty when taking time for themselves. It’s a recipe for disaster.”

Caring for caregivers is now a national crisis. A June 2021 CDC report found that 70% of parents of children under age 18 and caregivers of adults reported adverse mental health symptoms during the pandemic. AARP’s 2020 report Caregiving in the USA found 53M Americans (one in five) are caregivers up from 43.5M in 2015. Now the healthcare industry is recognizing the need to provide caregivers with organized support.

KHCC has been replicated by 23 sites, including community hospitals, small cancer centers, teaching hospitals and an acute rehab center. This month, the Mayo Clinic’s pilot program for caregivers of patients with transplants and other complex cases launched on two floors of its Phoenix, AZ hospital. According to Joan M. Griffin, Ph.D., professor of Health Services Research at the Mayo Clinic College of Medicine, Division of Health Care Delivery Research and Kern Center for the Science of Healthcare Delivery, if the program meets Mayo’s evidence-based metrics, it could be expanded to the entire hospital and all three of Mayo’s campuses.

In November 2019, the Stanford Caregiver Program, opened in the 1,500 sf Lynne and Roy M. Frank Family Resource Center with sweeping foothill views that it shares with the hospital’s health library. In New York, Montefiore has three centers, and Northwell Health (of which NWH is a member) has replicated the program at North Shore University Hospital, Peconic Bay Medical Center, Huntington Hospital, and Glen Cove Hospital, and is developing centers at Lenox Hill and Phelps Hospitals.

This year marks the 15th anniversary of KHCC. When Marian Hamilton’s husband died of mesothelioma in 2004, she was exhausted after serving as primary caregiver for two teens and her husband during his two-year illness. She established KHCC to provide caregivers with support and resources in a hospital setting—something she had not received and badly needed. NWH provides KHCC with space, but the program is funded entirely by annual fundraising.

Located in a Zen-like space, the KHCC has a full-time social worker, 34 volunteer caregiver coaches, a part-time replication coordinator and a $3M endowment. After training for six months in active listening, working with families in crisis, HIPAA rules and hospital regulations, volunteers—most of whom are former recipients of the Center’s services—spend most of their time rounding on patient floors where they offer a non-judgmental ear for emotional support and assistance with identifying and accessing resources. They also reach out by phone to caregivers at home via the Stay in Touch Program. Professional caregivers use the Center to debrief and meet with families.

During the pandemic when visitation was prohibited, the Center quickly pivoted, providing individual and group support for employees, calling COVID-19 patient families, and serving as a liaison between families and clinical staff. The team also held quarterly Zooms with the 23 replicated sites to share ways to help support their communities.

According to KHCC replication coordinator Jill Gottlieb, each new center pays a one-time fee of $7500. The replication process includes multiple phone conversations, on-site meetings, and comprehensive replication and coaching manuals to help each site design a program specific to the needs of its population. Sites are invited to shadow the KHCC team once they have hired a dedicated social worker to oversee the program, and may meet with other sites. KHCC hosts year-round discussions and has formed a Caregivers Center Consortium that meets biannually to share best practices and discuss challenges.

For more information on the Ken Hamilton Caregivers Center, visit https://nwh.northwell.edu/your-visit/ken-hamilton-caregivers-center.