Although it’s located in the Ravdin Building, HUP’s Family Caregiver Center does not smell like a hospital. Whiffs of freshly brewed coffee draw visitors to the door, and on Wednesdays, so does the aroma of chocolate chip cookies, still warm from the oven of longtime volunteer Jack Sheridan.
Those same inviting scents will soon fill HUP’s second Family Caregiver Center, opening this fall in the Pavilion. Occupying about 1,100 of the Pavilion’s total 1.5 million square feet, the additional Center location, known as the Drs. Jack and Pina Templeton Family Caregiver Center, will enable Sheridan and fellow volunteers to reach more family caregivers — unpaid relatives who assist loved ones throughout illness or surgical recovery.
“Clinical teams are focused on the patient and the medical condition, and they rarely have the time to ask family members how they are doing,” said Karen Anderson, MSN, RN, PMHCNS-BC, clinical nurse specialist in patient and family-centered care and head of the Center’s volunteer program. “Caregivers need their own quiet space where they feel heard, supported, and engaged, and we are here to give them that.”
Easing the Burden
For the past six years, Sheridan has used his homemade cookies as an icebreaker whenever he senses that a patient’s loved one needs to talk.
“Our conversations can go anywhere, from baseball to whether someone believes in God,” he said. “These people have barely eaten and are operating on a couple hours’ sleep while facing big, important decisions. We enrich them with space and compassion so they can clear their heads.”
Volunteers will offer this same kind of empathy and guidance in the new Pavilion location. The service they provide is invaluable, as more than one in five adults — or 53 million Americans — are now unpaid family caregivers, according to the National Alliance for Caregiving and AARP.
And caregivers are never just caregivers. Beyond medical tasks like monitoring prescriptions and changing bandages, they are organizing insurance information, scheduling appointments, coordinating transportation, grocery shopping, preparing meals, managing housekeeping, paying bills, and a host of other responsibilities — often in addition to working full-time jobs, and almost always in addition to feeling exhausted and anxious.
“We’re talking an estimated additional 20 hours of work on top of someone’s already-busy life, lasting an average of four years, with stress and burdens at every level,” Anderson said. “It’s amazing how much people give, yet they still feel guilty that they are not giving enough. We are here to remind them, ‘You didn’t sign up to sacrifice your whole life, and you are entitled to take care of yourself.’ It’s a message caregivers tend to forget.”
HUP is one of only 22 U.S. hospitals with a formal family caregiver facility. In 2019, almost 12,000 visitors interacted with the Ravdin Building’s Family Caregiver Center. A COVID-related lockdown shrank that number last year (during that time, Anderson and volunteers reached out to families by phone), but when the Center reopened in April 2021, Anderson said, caregivers were “basically ready for us at the door” — a sure sign that a second Center location would be a welcome addition to campus.
Situated next to the cafeteria on the connector level of the Pavilion, the new Family Caregiver Center will have a large lounge area, a kitchen and stocked pantry, and two private rooms — one equipped with a massage chair, the other for family meetings, phone calls, or remote work.
Like most Center volunteers, Bev Rubin once served as a family caregiver herself, overseeing the care of her mother through breast cancer and dementia, her father through prostate cancer, and both parents at the ends of their lives. As their health declined, she discovered there was no “road map” showing her what to do next. The crash courses she got in living wills, health care proxies, and care coordination come in handy when counseling family caregivers.
“Families need different things, whether it’s emotional support or help filling out a document,” said Rubin. “For the most part, caregivers are taken aback that there is a special place for them in the hospital, and they love it and keep coming in.”
Every caregiver has a story that brings them to the Center on a given day, Sheridan observed, and sharing their stories with volunteers is therapeutic. “They leave our Family Caregiver Center much more clearheaded and determined,” he said.
Sheridan added that while supporting caregivers directly, he also helps them support each other — like the time he connected two women whose husbands were both receiving bone marrow transplants. One’s husband was just beginning, while the other’s was at end of the process, preparing for discharge.
“The first woman was so afraid, and the second was able to reassure her, explaining, ‘This is what you’re in for; this is what to expect,’” he remembered. “Matching people who are at different points in the same process — that’s one of the best things we can do.”
Recently, 10 family members of a critically ill patient flew to Philadelphia from all over North America. Grief-stricken and overwhelmed, they needed a private place to gather and discuss treatment options. The hospital lobby was too public, and the patient’s room was too small.
“Every day, we supported this family by providing the private space they needed to come to grips with their loved one’s illness. We also supported the unit, because they couldn’t accommodate these 10 people up there up there at once, with or without COVID restrictions,” Anderson said. “So not only do we help families, but we also take pressure off the units so clinicians can keep their focus on the patient. It’s a win-win for everyone.”