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Supportive and palliative care plays a crucial role in the care of patients with severe and complex medical needs and those individuals with life-limiting illnesses or who are at the end of life. Supportive care places special emphasis on holistic, patient- and family-centric care. With a focus on shared decision-making, understanding goals of care, maintaining quality of life, symptom management, and other issues, supportive care strives to meet the complex biopsychosocial needs of its patient population compassionately and thoughtfully.
UPMC Children’s Hospital of Pittsburgh has had a dedicated pediatric palliative care program for the past 17 years. The Supportive Care Team consists of physicians, nurses, advanced practice providers, social workers, and bereavement specialists. Critically ill neonatal intensive care unit (NICU) patients, children with cancer or who have cardiac defects, and children with medically complex diseases and life-limiting genetic conditions all can be helped with the practices of supportive care.
Add to this diverse mix of patients those unborn babies diagnosed in utero with life-limiting conditions, and their mothers and families. While this may be a relatively small patient population, it is one both fragile and complex with challenging needs before, during, and after the birth of the baby, no matter how long they are expected to live.
To better provide and care for this patient population, the UPMC Newborn Medicine Program, in collaboration with the UPMC Children’s Supportive Care Program, is building and implementing a dedicated Perinatal Supportive Care Program that will be available for patients and families who enter into the UPMC Newborn Medicine Program from UPMC Magee-Womens Hospital.
Leading the development of the Perinatal Supportive Care Program is Christine E. Bishop, MD, MA. Dr. Bishop is a neonatologist and bioethicist who joined UPMC in August 2019. She has prior experience developing and leading a neonatal and perinatal supportive care program while she was a faculty member at the Wake Forest University School of Medicine and Brenner Children’s Hospital in North Carolina.
“Families in the perinatal period who have received a fetal diagnosis that is severe, complex, and life-limiting are a special population with special needs that go far beyond the direct medical care of the mother and unborn baby. Supportive care in general, and our expanding program, in particular, provide a truly multidisciplinary approach to help these families navigate one of the most traumatic, stressful, and life-altering experiences they will ever likely undergo,” says Dr. Bishop.
Under Dr. Bishop’s leadership, the UPMC Perinatal Supportive Care Program is providing multidisciplinary care to families and their babies who have been prenatally diagnosed with a potentially life-limiting condition. The overarching goal of the program is to accompany families on their arduous journey while providing comprehensive care focused on shared decision-making, delineation of goals of care, and enhancing quality of life for the baby and family.
Patient care begins with the mother and family at the time of their prenatal diagnosis through the birth of the baby. Care continues through the infant’s time in the nursery or NICU to address the medical, psychosocial, spiritual, and ethical needs of parents and their babies. These services involve consultations to guide families in making decisions in the setting of uncertainty and difficult clinical situations, prenatal advance care planning, care coordination, assistance with medical management for infants with a severe or complex medical condition — including end-of-life care if needed — and partnering with the UPMC Children’s and UPMC Magee bereavement teams to help provide bereavement support for the family throughout pregnancy and their infant’s sometimes brief but impactful and meaningful life.
“The processes we are developing with our UPMC maternal-fetal medicine, NICU, and supportive care colleagues at UPMC Children’s will ensure that patients and families have consistency and continuity of care. Communication is key in these instances. Families need a seamless transition plan, and they need to know that if they must move from UPMC Magee to UPMC Children’s for any reason, their needs will be met,” says Dr. Bishop.
Most of the patient referrals to the program will come from the Division of Maternal-Fetal Medicine and the Center for Advanced Fetal Diagnostics (CAFD) at UPMC Magee. Dr. Bishop’s program also will act as a bridge to care if patients are transferred to the NICU at UPMC Children’s from UPMC Magee for any reason.
Dr. Bishop’s goals for the Perinatal Supportive Care Program branch into four main areas. The first is to provide excellent holistic supportive medical care. The second is to provide education for nurses, staff, and clinicians about best practices and how to communicate with families and care for infants with life-limiting conditions. The third area is related to research and quality improvement projects that can advance supportive care best practices. The final area is in community engagement, partnering with families and parents to raise awareness and support for the program and the families and infants that it serves.
Eventually, Dr. Bishop hopes to broaden the scale and scope of the program to reach and care for as many patients and families as possible. This means hiring a dedicated advanced practice provider and a dedicated social worker.
Another part of Dr. Bishop’s expansion plan is, over time, to more effectively use telemedicine services to reach as large a patient population as possible in the broad and expanding UPMC referral area of western and central Pennsylvania, eastern Ohio, northern West Virginia and Maryland, and southwestern New York.
“Telemedicine can do a number of things for our program. First, we can reach a larger patient population where they reside, limiting the amount of travel they need to do but still allowing us to follow them closely,” says Dr. Bishop. “We also can broadcast our services to a larger referral area. Our specialty is a micro-specialty that is somewhat outside of the comfort zone for many providers. Increasing the awareness of our services and identifying who we can help can break down barriers to the care these patients and families truly need — and deserve.”
Christine E. Bishop, MD, MA, is a neonatologist, bioethicist, and medical educator. She earned her medical degree from The Ohio State University, and a master’s degree in bioethics from Wake Forest University in Winston-Salem, North Carolina. Dr. Bishop completed both her pediatric residency training and a fellowship in neonatal and perinatal medicine at the University of Texas Health Science Center at San Antonio.
Dr. Bishop joined the UPMC Newborn Medicine Program in August 2019 as an attending physician, and she also is an assistant professor of pediatrics at the University of Pittsburgh School of Medicine. Prior to joining UPMC, Dr. Bishop held faculty appointments at the Wake Forest School of Medicine and Brenner Children’s Hospital in North Carolina. At Wake Forest, Dr. Bishop founded and directed the Brenner Children’s Hospital Care Always™ Neonatal/Perinatal Palliative Care Program that provides holistic care for infants with life-limiting and complex medical conditions. She also served as the lead clinical ethics consultant for Wake Forest Baptist Medical Center, chaired the Clinical Ethics Consultation Committee, and co-directed the undergraduate medical humanities course at Wake Forest University School of Medicine.
Dr. Bishop is a fellow of the American Academy of Pediatrics (AAP), and she also is currently a member of the AAP Perinatal Section and the AAP’s Hospice and Palliative Medicine Section, as well as a member of the American Society for Bioethics and Humanities. Dr. Bishop’s research interests include neonatal and perinatal palliative care, bioethics, medical education, and communication.
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