Development and integration of a perinatal palliative care program at a tertiary care center
hospice; newborn; anencephalus; intensive care; clergy; nurse; social worker; comfort; practice guideline; neonatologist; tertiary care center; conference abstract; human; child; female; controlled study; perinatal care; palliative therapy; abortion; electronic medical record; fetus malformation; Oklahoma; prenatal diagnosis
Purpose of study Advances in fetal medicine have increased referrals to tertiary perinatal care centers. NRP guidelines recommend that only neonates with anencephaly and less than. 400 grams are not to be resuscitated. In 2015, Oklahoma passed a law stating 'it is the duty of the physician to inform the woman who carries a fetus with anomalies that perinatal hospice services are available and that this is an alternative to abortion'. We aim to describe the process of developing a perinatal palliative care (PPC) program for newborns with prenatal diagnoses of life-limiting conditions. Methods used Focus groups were conducted with responsible parties. Existing resources were identified. Implementation approaches were discussed. Summary of results The need for a PPC team was identified. Nurses, neonatologists, chaplains, social workers and child life specialists were integrated into this service with the support of an existing pediatric palliative care team. A new PPC program was introduced. Prenatal consults initiated by maternal-fetal medicine are an integral part of the prenatal care. Options of intensive care versus comfort care are offered. A neonatologist attends all these deliveries. The newborn stays with the mother. Special nurses were assigned for comfort care in the mother's room. Guidelines and specific PPC orders are now available in the electronic medical record. Examples are listed in the table 1. A website was created to inform referring physicians about this new program. Conclusions PPC was successfully established at a regional tertiary center. Parents of newborns diagnosed with lethal conditions have the choice of often non-beneficial intensive care or care focused on comfort after birth. This specialized care allows parents to celebrate the limited life of their precious newborns. Providers across the state have now access to a referral center offering perinatal neonatal palliative care. (Table Presented).
Shah B A; May R; White L; Wlodaver A
Journal of Investigative Medicine
2019
<a href="http://doi.org/10.1136/jim-2018-000974.461" target="_blank" rel="noreferrer noopener">10.1136/jim-2018-000974.461</a>
The Role Of Pediatric Palliative Care In Complex Congenital Heart Disease: Three Illustrative Cases
Congenital Heart Disease; Pediatric Cardiology; Pediatric Palliative Care
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population. OBJECTIVE: This case description reviews the role of PPC teams in the care of patients with complex CHD. DESIGN: Case study and analysis of three pediatric patients with complex CHD who also received PPC services. CONCLUSIONS: Involvement of PPC teams in patients with complex CHD can be beneficial for both families and caregivers. PPC teams can aid with advance care planning, goal setting, medical decision making, and bereavement support. Further research is needed to better quantify the benefits of PPC teams' involvement in this population.
May R; Thompson J
Journal Of Palliative Medicine
2017
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10.1089/jpm.2017.0047