Circle of Life honoree handles palliative challenges on Southern border
As a safety net hospital near the southern U.S. border, University Hospital in San Antonio, Texas, serves a complex patient population whose needs bring unique challenges, especially at the end of life. The teaching hospital has built a comprehensive palliative care program that brings culturally sensitive care to all its patients regardless of funding, residency, or citizenship.
“We tend to have the unfunded, undocumented, un-everything,” notes Julianne Eddy, RN, director of palliative care services. “We don’t really have a criteria on what your social situation is — we believe everyone who needs us should get us.”
The hospital’s palliative care program connects to the immigrant population through a community Promotores program, which employs Spanish-speaking laypeople as health care outreach workers. The Promotores help ensure that people who are worried about their citizenship status get the care they need. “When you’re undocumented and you need procedures and medications, that’s on top of the difficulty of managing clothing, food, and the necessities of living,” says Erin Perez, DNP, palliative care nurse practitioner.
“In our hospital, we get not just people from San Antonio but also people from all the surrounding counties and our neighbors from Mexico who seek out our specialists,” she notes. “Palliative care is one of those specialties. We’re able to provide continuity of care and have those complex conversations to make sure we’re addressing their psychosocial needs in addition to the physical needs. We truly treat the whole patient and family, where they are,” says Perez.
The program’s chaplains are another important conduit to the immigrant and undocumented communities. Through their work, the chaplains have developed a manual describing various cultures and religions, which can be used as a resource as end of life approaches and shared with other organizations.
In addition to UHS’ deep cultural competency, the program has designed team care for specific patient populations: there is an adult-geriatric palliative care team, a pediatric team, and a perinatal team. Recognizing that teenagers with serious illness face a challenging transition from pediatric to adult medical care, the program also developed an adolescent/young adult program, which is a bridge between the pediatric and adult teams.
Another source of assistance for young people comes from Rebecca Charlton, a child-life specialist. She provides developmentally appropriate support not just to children who have serious illnesses but also to the children of families in which an adult is facing a serious illness. “Let’s say Grandpa is in the hospital and very sick. They will consult me on how to talk to the grandchildren about what’s going on,” explains Charlton. “It’s a matter of knowing what to say to children at certain developmental stages.”
Future growth plans include an expansion of the program’s perinatal program that follows pregnant women whose baby may have a serious health problem. The women are connected with the pediatric palliative care team, which continues to provide them with support after the birth. With help from a donation, UHS is hiring a physician and program coordinator to build out that program.
University Hospital’s long-standing palliative care team and its program have flourished over time, says Eddy. “We’ve grown due to a lot of different engines: patient demand, physician demand, leadership awareness of the benefit of palliative care, and the passion of those of us on the team.”
The team is composed of physicians, nurse practitioners, nurses, social workers, chaplains, and child life specialists, along with nonclinical members such as music, massage, pet and aroma therapists. The hospital’s chief medical officer, Bryan Alsip, M.D., is also part of the palliative care team.
The program provides both inpatient and community-based palliative care across the continuum, through a broad network of outpatient and community health centers. In addition, palliative care is integrated into the hospital’s cancer center and bridges into the pediatric home hospice services.
With a strong commitment to education, the program incorporates a broad array of learners into clinical care and team rounds. These include medical students, residents, palliative care fellows, advanced practice registered nurses/students, and social work students. Pharmacology residents and military residents also rotate with the palliative care service. The medical school maintains a palliative care medical fellowship program in partnership with the Department of Veterans Affairs.
In addition, various members of the team will sit down for educational lunches and cover palliative care topics such as holistic pain management and symptom management, complex communication, palliative care health policy, and self-care wellness. Team members also go into the community to provide palliative care education in a variety of settings, including teaching primary palliative care techniques to providers in remote locations.
To bring joy into the lives of patients, the team developed its own version of a “make-a-wish” program. “We celebrate life whenever we can,” explains Perez. “Whatever is most important to the patient, we try to accommodate that.” For one sick young man, a big San Antonio Spurs fan, she contacted the basketball team, which sent an autographed jersey and other gifts. The team threw a Spurs party in his room for family and friends with decorations, music, and his favorite pizza. The palliative care team has put together similar events for other patients. “Giving to someone else brings us joy,” Perez says. “This might be one of the last good things the patient and family can reflect on.”
The palliative care team members have a strong sense of camaraderie, says Charlton. “We begin every morning with self-care, knowing we may need a positive way to start the day,” she says, referring to a moment when team members share an uplifting and encouraging quotation, thought or activity. Each Friday, the chaplain uses this time to lead a spiritual discussion or meditation.
The program enjoys strong support from hospital administration as well as the medical school leadership, team members say. “The leadership of University Health System has provided us with tremendous support,” says Jennifer LaCoss, MD, who directs palliative care outpatient services.
The health system’s support of its community is an essential element to the team’s success, she adds. “Our program is great because we work within a health system that tries to find access to care no matter where you come from or what your financial resources are,” she says. “Our palliative care team is in a unique position to provide care even to people with few resources. That’s a great asset to the community.”
Click here to learn more about the Circle of Life Award: Celebrating Innovation in Palliative and End-of-Life Care and to download an application for the 2020 awards.