As director of the Pediatric Advanced Care Team (PACT) at The Children’s Hospital of Philadelphia, I have the privilege of helping care for the hospital’s sickest and most complex patients and their families. PACT is one of the largest and most comprehensive pediatric palliative care programs in the country. I also specialize in neuro-oncology and see children with brain tumors in both the hospital and outpatient setting. I participate in neuro-oncology research with the brain tumor team through Pediatric Brain Tumor Consortium and Children’s Oncology Group trials.
PACT offers a novel and comprehensive approach that focuses on the medical, psychological, social and spiritual needs of children with life-threatening illnesses and their families. These are cases in which a cure may be possible but is less likely, when the prognosis is unclear, or when children are suffering from many complications from their disease and need medical or psychosocial intervention.
Our approach at Children's Hospital involves using all the disciplines within our healthcare system to take the best care of patients and families. PACT’s in-depth psychosocial team includes a social worker, a child life specialist, an art therapist, a chaplain and a bereavement coordinator. Our medical team includes multiple physicians from several subspecialties, a nurse practitioner, a nurse coordinator and a pediatric fellow who specializes in pediatric palliative medicine. These specialized services are designed to help families cope with difficult decisions and provide the support our patients need to maintain their physical comfort and reduce emotional distress.
I and my colleagues started this program because we recognized that children with life-limiting diseases and their families have needs that are different from the average patient.
Our approach is to maximize the child's quality of life, and provide support to the family both in the hospital and at home. We provide the tools families need to make the most of the time they have with their child. We make home care a priority and provide families and their care providers with 24-hour cell phones access to our team as well as home visits by the medical and psychosocial teams.
We have a nationally recognized research program to better understand how patients, families and healthcare providers make decisions about treatment and what types of policies best serve their needs. We also focus on how to minimize symptoms at the end of life.
Our program at Children's Hospital is one of only four pediatric institutions that have an ACGME accredited fellowship program. Recently, we were one of three institutions in the U.S. that received a prestigious Circle of Life award for innovative palliative care from the American Hospital Association. Receiving this award demonstrates we are a model for pediatric programs across the country.
In a short period of time, PACT went from an idea about ways to improve our patients' care to a nationally recognized program. Working at a world class institution like Children's Hospital has provided us with the ability to build a pediatric palliative care program that is a model for others nationwide and that provides comprehensive care for our own patients and their families.
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