Prenatal Palliative Care: Supporting Family Goals When a Pregnancy Is Complicated by a High-Risk Fetal Diagnosis

When prenatal testing identifies a life-limiting or high-morbidity fetal condition, families may face complex decisions long before delivery.
Prenatal palliative care can provide education, psychosocial support and structured exploration of goals of care while allowing families to determine the approach that best aligns with their values and wishes. Referrals may be initiated at diagnosis by obstetricians and MFM specialists as well as neonatologists, geneticists and pediatric cardiologists.
Findings from Phoenix Children’s help characterize how families' goals evolve before and after delivery and reinforce an important principle: palliative care consultation is not synonymous with choosing comfort care.

Examining prenatal goals of care

Investigators conducted a retrospective chart review of 243 neonates cared for by Phoenix Children’s Center for Fetal and Neonatal Care or pregnant mothers referred to the Phoenix Children’s perinatal palliative care team between January 1, 2020 and December 5, 2024.
The population included a broad range of fetal diagnoses, including aneuploidies, congenital and neurologic anomalies, congenital diaphragmatic hernia, cardiac malformations, skeletal dysplasia, pulmonary hypoplasia, hydrops and renal malformations, among others.
Researchers categorized parents who requested an intervention intended to prolong life as choosing life-prolonging care, even if limitations were specified. Comfort care was defined as care intended solely to provide comfort without sustaining life.

Most families' goals remained consistent

One of the study's most notable findings was the stability of families' goals after consultation.
Fewer than 5% of families changed their goals-of-care decision following their initial prenatal palliative care consultation.
Among the study population, 176 families were classified in the life-prolonging group and 67 in the comfort-care group.
These findings are consistent with a model in which the palliative care team's role is not to redirect a family's decision. Instead, the team partners with families as they navigate prenatal decision-making and develop a plan consistent with their choices.

Avoid assumptions about which families will choose comfort care

The study found no significant difference in goals of care based on parental race or religion, gravida, parity, insurance status or area deprivation index.
That finding has an important clinical implication for referring providers: demographic or socioeconomic characteristics should not be used as proxies for how a family may approach goals-of-care decisions.
Fetal diagnosis, however, was associated with goals-of-care decisions for some conditions. The study particularly identified associations involving cardiac conditions, abdominal wall conditions and neurologic disorders.

Goals may change as the clinical situation evolves

Goals of care are not necessarily static.
With ongoing support, eight families, or 5% of those initially requesting life-prolonging care, shifted to comfort-focused care before delivery. After delivery, limitations in available interventions or family decisions resulted in six babies, or 4%, transitioning to comfort-focused care.
Among the comfort-care cohort with live births, 89.4% remained comfort-focused, while 10.6% transitioned to life-prolonging measures.
The findings underscore the value of palliative care involvement across the prenatal and postnatal continuum. As an infant's clinical status and available interventions become clearer, families may need additional support to reconsider goals and understand newly available options or limitations.

When to consider referral

For obstetricians and MFMs caring for a family facing a life-limiting or potentially high-morbidity fetal diagnosis, prenatal palliative care can be introduced at the time of diagnosis, rather than reserved for the final stages of pregnancy or only after a family elects comfort-focused care.
Early consultation gives families an opportunity to receive education and psychosocial support and to explore goals of care before delivery.
The Phoenix Children’s experience suggests that this partnership can support families across the full spectrum of goals, including families pursuing life-prolonging treatment as well as those choosing comfort-focused care.