A Loss Unlike Any Other

Pediatric palliative care is a growing field that focuses on the care of seriously ill children and their families at any age and any stage of illness. ² Tending to families in the perinatal period is particularly challenging. Limited studies on perinatal palliative care (PPC) recommend a similar model to other areas of palliative care, in which families are met early in the illness trajectory ³ and palliative care teams are given time to develop relationships, agree upon care plans, and arrange for memory making. ⁴ Perinatal loss requires extended bereavement follow-up, as families who have lost a baby often experience prolonged grief and even depression—particularly if not given palliative care supports. ⁵ When attending to a loss unlike any other—the loss of a baby—how can we as palliative care providers best support families?

PPC may be provided for families with diverse experiences including early miscarriage, late fetal demise, peripartum injury, congenital anomaly, or postnatal disease progression. ⁶ Often these babies present with diverse diagnoses and uncertain trajectories, making decisions about care extremely challenging. Advancements in technologies such as fetal surgery, extracorporeal membrane oxygenation (ECMO), and brain cooling are also expanding the limits of what is possible and our understanding of what treatment experiences may be like for families.^7–9 PPC is further challenged by ethical dilemmas involving cultural norms, religious ideals, and community standards. What defines “personhood?” What are the limits of viability for a fetus and what are the tradeoffs? All of these factors make PPC particularly complex for families and care providers alike when faced with complicated treatment decisions.

The anticipated birth of a baby is also a deeply emotional time filled with hopes, sensitivities, and expectations. Perinatal loss can lead to unsettling changes when a parent's personal sense of meaning and fairness about the world can feel turned on its head. This occurs for many reasons, including the inherent vulnerability to disappointment and loss during this time. Because of these strong emotional reactions and existential changes, PPC can be particularly challenging for providers. ¹⁰

Perinatal loss is truly a time for high-quality interdisciplinary pediatric palliative care. ¹¹ The paper by Wool and colleagues gives us an important look at how PPC programs throughout the United States are structured, funded, and focused. They found that many PPC programs are young, with 70% developed in the last 10 years. Settings for PPC delivery are incredibly diverse, as are current funding mechanisms. All programs currently involve spiritual and bereavement care—so important for making sense of such a seemingly senseless loss as the death of a baby.

PPC is a critical aspect of palliative care that we should prioritize and learn more about. As palliative care providers we need to elicit expertise from various disciplines and find ways to work in concert across specialties and within communities. We should elicit the help of others who have expertise in caring for these families, such as midwives, labor and delivery nurses, genetic counselors, doulas, obstetricians, and neonatologists. This will aid efforts to standardize the PPC process and to raise awareness both in the medical setting and in the community. Equally important, quality and outcomes should be formally assessed.

There are exciting developments happening today in the care of newborn babies. Clearly, these advancements are not only focused on medical interventions, but also on the care that is provided when there is uncertainty and loss. There is more for us as a palliative care community to learn and discover about PPC. Knowing more about the structure, funding, and focus of PPC programs nationally is a first step towards this important goal.