Children living with cancer and their families are benefiting from a palliative care program at Georgetown University Hospital that was designed to provide the highest quality of life throughout the course of illness.
Tina Lee, whose son, Brandon, fought and lost his battle with cancer while a patient at Georgetown, describes the importance of palliative care this way: “It is a devastating thing to find out that your child has cancer. The palliative care program made a real difference for us in how we were able to deal with that diagnosis. In addition to the outstanding medical treatment, the psychological and spiritual support we received allowed us to move forward. The essence of palliative care is that it’s not just about your child or about a disease, it’s about treating the whole extended family.”
Thanks to a $100,000 Hope Grant from Hyundai Motor America, more families will find this kind of holistic support during very difficult times. Georgetown’s Division of Pediatric Hematology/Oncology, Blood and Bone Marrow Transplantation, working in conjunction with the Lombardi Comprehensive Cancer Center, is expanding and formalizing its Pediatric Palliative Care Program with these funds. Aziza T. Shad, MD, director of the Leukemia Lymphoma Program and the Late Effects Clinic for Cancer Survivors, explains: “Pediatric palliative care addresses physical, emotional, psychosocial and spiritual needs of children and families and is aimed at attending to suffering, promoting healing and improving quality of life from the time of diagnosis until cure or death.” The pediatric palliative care core team, known as the “Rainbow Team,” includes a pediatric oncologist, social worker, nurse practitioner and chaplain.
“It is important to recognize that palliative care does not mean just end of life care,” says Dr. Shad. “Pediatric palliative care addresses the needs of patients and their families throughout each stage of the disease. This sometimes includes grief and bereavement issues, but it is important to recognize that palliative care focuses on much more than that.”
Education in palliative care for pediatricians across all disciplines is an important element of Georgetown’s program. Through a series of twice-monthly meetings, Dr. Shad leads core team members, as well as neurologists, intensive care unit staff and HIV services staff, through a palliative care curriculum. The funding from Hyundai also supports research projects to measure the quantitative and qualitative outcomes of care, including the creation of a database identifying, evaluating and prioritizing the health, social, emotional, spiritual and financial needs of pediatric palliative care patients and families.
Palliative care supports Georgetown’s mission of cura personalis—“caring for the whole person.” “Taking care of a child is obviously important from the medicinal and curative standpoint,” says Dr. Shad. “Taking care of psychosocial and spiritual needs is equally important. If we don’t do this, we simply are not doing our jobs.”
Pediatric palliative care programs are relatively new, according to Dr. Shad. “Five years ago, they were extremely rare, but there has been an increasing awareness of their importance, particularly in pediatric oncology. This new funding is allowing us to formalize our practices and look at expanding our model of pediatric palliative care to other pediatric specialties,” Dr. Shad explains.
Vicki Brown, whose son Mattie was treated for bone cancer at Georgetown, believes the palliative care team approach is “the only way medical treatment should work.” Before her son’s diagnosis, Vicki did not know what palliative care was.
“Mattie received great treatment at Georgetown to address his physical needs,” says Vicki, “but the contributions of the therapists, social workers and chaplains who were part of our team were equally important during that difficult time for our family.”
She and her husband, Peter, were thrilled that Dr. Shad has received this grant: “We are so happy to see the Pediatric Palliative Care Program supported in this way.”