CAPS Program Supports Families Through Continued Growth
Nearly 10 years ago, a donation from the Dr. Marnie Rose Foundation provided funds for a part-time palliative care nurse at Children’s Memorial Hermann Hospital, marking the beginning of what would become one of the most respected pediatric palliative care programs in the region. Today, the Chronic and Palliative Services (CAPS) Program at Children’s Memorial Hermann Hospital has grown into a full-fledged multidisciplinary program, consisting of a dedicated team of affiliated neonatologists, nurse practitioners, nurses, social workers, child life specialists and chaplains. The CAPS Program is part of the continuum of care for patients and families at the The Fetal Center at Children's Memorial Hermann Hospital that have been prenatally diagnosed with a life-threatening or life-limiting condition.
Patrick Jones, M.D., M.A., assistant professor of pediatrics, division of Neonatal-Perinatal Medicine, together with Suzanne Lopez, M.D., FAAP, associate professor of pediatrics, division of Neonatal-Perinatal Medicine at UTHealth Medical School serve as clinical leaders of the CAPS program at Children’s Memorial Hermann Hospital. “We recognize that the families we consult with need services above and beyond what a typical pregnancy may require,” said Dr. Jones, “Our focus is to help them process difficult information, and to
better understand how their baby’s particular diagnosis may affect their child and their family. Many of these patients require
admission to the neonatal intensive care unit, and it’s helpful for the families to see familiar faces and have a network to rely on
for answers to difficult questions, from diagnosis to discharge.” Dr. Jones lauds the importance of the team’s child life specialists,
who help families with the important task of discussing and explaining the diagnosis with the patient’s siblings, including what they can expect during the first visit to meet their younger brother or sister.
Many of the conditions these families face include congenital heart disease, diaphragmatic hernias, skeletal dysplasias and various genetic syndromes. “Our approach is one of honest communication about the facts each family is facing, while maintaining hope
and providing a positive environment for the family,” said Dr. Lopez. When a family is provided with a prenatal diagnosis of a
life-threatening condition and the child is unlikely to survive long after delivery, the CAPS team works with the family to create
memories, which is an important part of the grieving process, and does its best to meet whatever goals the family has for the
time they have with their child. Marnie’s Garden Room, located within Children’s Memorial Hermann Hospital, was established to
support the team’s goal to provide families with a comfortable, private and serene place to spend final moments with their
A Comprehensive and Unified Approach
In 2012, the team traveled to Akron, Ohio, to participate in an operational training and mentorship program provided by the Center to Advance Palliative Care (CAPC), with nationally renowned palliative care expert, Sarah Friebert, M.D. Every year, CAPC brings palliative care teams from all over the world to interface with experts from some of the country’s best programs during three days of intensive training. “Dr. Friebert’s expertise led us to create a plan to further develop our program, and we have continued to benefit from her mentoring as we have put this plan into action,” said Dr. Jones. “The work implemented almost 10 years sago by both Dr. Lopez and Shih-Ning Liaw, M.D., a pediatrician formerly with UTHealth Medical School, has provided a solid clinical foundation for the program.” Dr. Jones, collaboratively working with Caryn Douma, RN, director of the Patient Care, Chronic and Palliative Services Program at Children’s Memorial Hermann Hospital, is continuing to focus on improving the implementation and growth of the program in order to reach more patients in our community.
Pediatric palliative care is a relatively new field, and part of what sets the CAPS program is the complex patient population at
Children’s Memorial Hermann Hospital, where patients are treated across multiple service lines and include those diagnosed with fetal anomalies or high-risk pregnancy conditions, NICU patients and complex pediatric patients. The team also cares for women, post-delivery, who require additional treatment in the adult ICU or at Memorial Hermann Heart & Vascular Institute-Texas Medical Center.
The CAPS program is a coordinated effort between Children’s Memorial Hermann Hospital and UTHealth Medical School, and works collaboratively with the clinical team at the The Fetal Center. Dr. Jones and other members of the Program regularly attend The Fetal Center’s weekly multidisciplinary meeting where patients’ customized plans of care are discussed with physicians of all pediatric specialties. “It has been a great relationship, made possible by the leaders of the Center recognizing the importance of our services to their patients and families,” said Dr. Jones.
Research and Growth
CAPS team members recognize that research and quality improvement are important to the future of palliative care. Through the collaboration with the The Fetal Center, the team is actively challenging its own ideas and conducting important research in order to provide the best possible treatments to patients. “Palliative care is a young field in pediatrics, and now that programs are being established across the country, it’s time to take that next step by conducting studies that will help us better serve patients and their families,” said Dr. Jones. For example, Amanda Hutchens, M.D., a fellow in neonatal-perinatal medicine at UTHealth Medical School, is working with the CAPS team to determine the prevalence of depression and post-traumatic stress disorder in parents at six and 12 months postpartum. Information from this study will be used to develop new tools to help support families as they focus on providing their child with the best possible care.
Looking to the future, Dr. Lopez anticipates further growth as interest in pediatric palliative care intensifies in the physician community. “We have added two additional pediatric nurse practitioners and a licensed psychologist to our team,” said Dr. Lopez, who also noted that many residents who rotate with the team are beginning to express interest in the field. “Our program is very robust, and it’s providing an important service to the medical community by providing these future physicians with a glimpse at the importance of pediatric palliative care.”
The Chronic and Palliative Services (CAPS) team at Children’s Memorial Hermann Hospital works hand-in-hand with The Fetal Center. The CAPS program is centered on compassion, and helps:
- Assist parents in creating a birth plan that is consistent with their hopes, goals, wishes and values
- Explore treatment pathways and facilitate medical decision-making
- Offer emotional support for the entire family
- Provide resources for coping strategies in the struggle of uncertainty
- Continuity of care from diagnosis to discharge
For more information about Chronic and Palliative Services at Children’s Memorial Hermann Hospital, email firstname.lastname@example.org.