The 13-year-old boy was afraid to enter his dying father’s hospital room. A nurse drew him in, explaining the medical side of what was happening to his dad, who was intubated, and social worker Mary Catherine Dubois helped the boy make a memory stone with his father’s thumbprint. On the next visit, the nurses at Medical University of South Carolina asked the boy what music he liked, and he and his cousin danced to James Brown in the father’s hospital room, infusing those final moments with joy. “It was really the memory stone that was the beginning of an opening to draw him in,” explains Dubois.
The 709-bed academic medical center in Charleston revitalized its palliative care program in 2015, designing a program that balances the nuts-and-bolts of palliative care with a culture that welcomes innovation. Hospital leaders also sought to provide leadership in training and advocacy for palliative care throughout South Carolina, and its team members hold positions with both state and national palliative care organizations.
“They gave us a lot of leeway and a lot of support,” Patrick Coyne, MSN, the program’s director, says. “We maintain a lot of moving parts — education, patient care, advocacy and research.”
The palliative care program delivers education in multiple formats. The organization has brought training in primary palliative care to more than 150 clinicians around South Carolina, and it holds nursing education courses annually at reduced cost. Additionally, end-of-life care education is available through its website and in workshops.
Along with a local hospital, adult and pediatric hospices, and the local Veterans Administration hospital, MUSC supports a physician fellowship in hospice and palliative medicine and provides future palliative providers with a wide variety of experiences such as inpatient consults, outpatient visits, and hospices in public, private, and VA settings. It also has several outpatient clinics, including one embedded in the cancer center, and plans to create an inpatient palliative care unit in the spring of 2020. Anyone can call for a palliative care consult, including nurses or a family member. “The nursing staff are our biggest advocates,” says Lauren Seidenschmidt, palliative care program manager. “They know the patient very well and are able to advocate for our services.”
MUSC maintains a strong pediatrics program that includes both innovative care and statewide leadership. Its pediatric providers helped found a statewide pediatric palliative and hospice care collaborative along with other academic children’s health systems and Hands of Hope, a community-based program.
An important component of MUSC’s pediatrics program is its advanced fetal medicine clinic. “We meet with a woman and her support system while she’s still pregnant and learns her child has something very seriously wrong that may be life-limiting,” Dubois says.
“Whenever she comes in, when she has to make difficult decisions about the baby’s health, she sees familiar faces.” If the child is lost, the team follows the family through the grief process.
Additionally, MUSC’s palliative care team has a vibrant and active volunteer program. Services include bereavement support, memorial services, acupuncture, reiki, massage and legacy work. One unique aspect of the program is a partnership with various legal entities in South Carolina that helps patients and families who need legal assistance but have trouble accessing legal services. Attorneys help draw up wills and power of attorney documents and provide other services that become necessary during a serious illness. Patients are fast-tracked, which is particularly helpful if they are facing legal action over delayed rent or utility payments due to their illness.
“It’s been a saving grace for many people,” Coyne says.
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.