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Longitudinal Perinatal Palliative Care for Severe Fetal Neurologic Diagnoses
Lisa M Humphrey1, Amy B Schlegel2
1Department of Anesthesiology and Pain Medicine, Nationwide Children's Hospital, Columbus, OH; Section of Hospice and Palliative Care, Nationwide Children's Hospital, Columbus, OH; Department of Pediatrics, The Ohio State University School of Medicine, Columbus, OH.
Insights
Perinatal palliative care (PnPC) supports families with life-limiting fetal conditions by enhancing quality of life and aligning medical care with family values. PnPC providers guide parents through emotional journeys, facilitating value-driven care plans from diagnosis through the newborn period.
Area of Science:
- Perinatal Medicine
- Palliative Care
- Neonatal Neurology
Background:
- Life-limiting fetal diagnoses present complex challenges for families.
- Existing care models may not fully address the emotional and value-driven needs of these families.
- Early and continuous support is crucial for navigating a fetal diagnosis.
Purpose of the Study:
- To define the role of Perinatal Palliative Care (PnPC) in managing families with life-limiting fetal conditions.
- To explore how PnPC facilitates the creation of value-driven goals of care.
- To understand the parental emotional journey and support needs during this critical period.
Main Methods:
- Longitudinal supportive care integrated into multidisciplinary fetal and neonatal teams.
- Skilled exploration of parental values, experiences, and emotional stages.
- Facilitation of communication and coordination of care aligned with family goals.
Main Results:
- PnPC enhances quality of life for families and newborns facing life-limiting fetal conditions.
- PnPC supports parents in navigating the emotional progression of receiving a diagnosis.
- Value-driven care plans are developed through collaborative exploration of parental goals and experiences.
Conclusions:
- Perinatal palliative care is integral to multidisciplinary teams caring for fetuses with neurological diagnoses.
- PnPC providers act as advocates, promoting communication and coordinating care based on family values.
- Longitudinal PnPC support enables families to welcome and mourn their child, fostering a unique bond.
Abstract:
Perinatal palliative care (PnPC) focuses on enhancing family and newborn quality-of-life in the setting of a life-limiting fetal condition while simultaneously ensuring medical care delivery that is soundly in line with the family's goals and values. The inclusion of PnPC in the multidisciplinary care of a family facing severe fetal neurologic diagnoses allows for skilled exploration of the values and experience that ultimately drive creation of goals of care. The parental experience of receiving a life-limiting fetal diagnosis pushes parents into an emotional journey, which typically follows a recognizable progression of stages. PnPC providers appreciate the significance of this experiential journey and the importance of parental movement toward readiness to simultaneously welcome and mourn their child. Through longitudinal supportive care, beginning early in the fetal diagnostic progress and continuing throughout pregnancy and into the newborn period, PnPC providers explore the uncharted parental experience alongside the family and support them in creating value-driven care plans for their child. They contribute greatly to the multidisciplinary fetal and neonatal care teams as the advocate for and promote insightful communication and assist in delivery and coordination of value-driven care.
