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Palliative care of the infant with lethal anomalies
1Division of Neonatology and Palliative Care, Department of Pediatrics, Medical College of Wisconsin, Children's Hospital of Wisconsin, 8701 Watertown Plank Road, MS#212, Milwaukee, WI 53226, USA. leuthner@mcw.edu
Insights
Pediatricians can support families with infants diagnosed with lethal anomalies. This guide offers tools for counseling families at any stage of involvement, from prenatal diagnosis to home discharge.
Area of Science:
- Pediatrics
- Medical Genetics
- Neonatal Care
Background:
- Families of infants with lethal anomalies often receive specialized care.
- Pediatricians play a crucial role in supporting these infants and families.
- Involvement can occur at various stages: prenatal, delivery, newborn nursery, or post-NICU discharge.
Purpose of the Study:
- To equip general pediatricians with knowledge regarding infants with lethal anomalies.
- To provide practical tools and strategies for counseling families facing these diagnoses.
- To enhance pediatrician comfort in managing complex cases and family support.
Main Methods:
- Review of current clinical practices and ethical considerations.
- Development of counseling frameworks for different involvement points.
- Integration of expertise from perinatal, neonatal, and genetic specialists.
Main Results:
- Identified key considerations for pediatricians when managing infants with lethal anomalies.
- Provided actionable counseling strategies tailored to family needs and circumstances.
- Emphasized the importance of a multidisciplinary approach and compassionate care.
Conclusions:
- General pediatricians can effectively support families of infants with lethal anomalies.
- Structured guidance improves pediatrician confidence and competence in counseling.
- Early and consistent support is vital for families navigating difficult diagnoses.
Abstract:
Although many families of infants with prenatally diagnosed lethal anomalies may receive counseling by clinicians with perinatal, neonatal, or genetic expertise and deliver their babies in a tertiary care center, pediatricians may be called on to support and care for these infants. Their involvement may begin prenatally, at the time of delivery, in the newborn nursery, or upon discharge home from a NICU. The goal of this article is to help the general pediatrician gain some comfort in knowing which cases might be considered and provide some tools and ideas for counseling a family from any point of involvement.
