Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care

Abstract

When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative team provides a safe, compassionate, and caring space for parents to process their emotions and discuss their values. In a shared decision-making model, the team explores how a family's faith, experiences, values, and perspectives shape the goals for care. For some families, terminating a pregnancy for any reason conflicts with their faith or values and pursuing life prolonging treatments in order to give their baby the best chances for survival is the most important. For others, having a postnatal confirmatory diagnosis of a life limiting or serious medical condition gives them the assurance they need to allow their child a natural death. Others want care to be comfort-focused in order to maximize the time they have to be together as a family. Through this journey, a perinatal palliative team can provide the support and encouragement for families to express their goals and wishes, as well as find meaning and hope.

International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS

“…According to the expected disease trajectory, medical conditions of eligibility for PPC have been classified into five categories (Table 2) (1,12). The fifth category involves unborn children with major health problems who may not live through birth, infants who may survive for only a few hours/days, infants with birth anomalies that may threaten vital functions, and infants for whom intensive care has been appropriately applied but developed an incurable disease (Table 2) (18,(26)(27)(28)(29)(30).…”

“…For these infants and their families, perinatal palliative care (PnPc) may be the only option available (31,32). Advancements in diagnostics during pregnancy and medical technology have changed the landscape of perinatal care, and the palliative care approach is now introduced in obstetrics and neonatal care (26,27,33).…”

The Path Is Made by Walking—Mapping the Healthcare Pathways of Parents Continuing Pregnancy after a Severe Life-Limiting Fetal Diagnosis: A Qualitative Interview Study

“…It is recommended that prenatal diagnosticians summon a multi-professional team to inform parents about the diagnosis [ 2 , 38 , 39 , 42 ]. Unfortunately, most parents did not have access to a multi-professional team at the time of diagnosis.…”

“…After the diagnosis, parents require routine antenatal care and anticipatory planning to make complex decisions [ 4 , 30 , 35 , 36 ], to anticipate possible outcomes and care options [ 2 , 31 , 37 ] and to develop goals of care for the prenatal, perinatal and neonatal period [ 2 , 4 , 32 ]. It includes the development of a birth plan with medical and non-medical goals [ 2 , 3 , 4 , 8 , 28 , 30 , 31 , 32 , 35 , 37 , 38 , 39 , 40 , 41 , 42 ].…”

Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients

“…In certain scenarios, with the early engagement of PC, parents may initially choose to pursue a trial of interventional therapy for their newborn but switch goals of care seamlessly if needed based on their child’s evolving clinical condition and prognosis. Advocacy for maximizing quality of life and comfort for neonates diagnosed with CHD is quintessential in the current era of evolving surgical and hybrid techniques [ 29 , 30 ]. As described in Figure 1 , prenatal consultation with pediatric PC, neonatology, cardiology, and maternal–fetal medicine along with risk-adjusted care in the delivery room will promote trust and improve perinatal care in neonates with complex CHD [ 28 , 31 ].…”