COMMENTARY

The Unborn Baby With No Chance at Life: Perinatal Palliative Care

Betty R. Ferrell, PhD, RN

Disclosures

August 30, 2016

An Evolving Field: Perinatal Palliative Care

The field of pediatric palliative care has been growing to meet the special needs of seriously ill children and their families. A component of this care, perinatal palliative care, is also now evolving to serve a vulnerable population in need of support when a pregnancy is affected by a life-limiting diagnosis. Congenital anomalies account for 20% of neonatal and infant deaths in the United States; thus, this is an area of tremendous need.

Recently a group of researchers conducted a national survey of existing perinatal palliative care programs to learn about these programs and guide future development in the field.[1] The survey was designed to examine characteristics of perinatal palliative care programs and services, including mechanisms of funding and reimbursement, and to assess whether these programs aligned with the National Consensus Project domains of care.

The survey respondents (n = 75) represented programs in 30 states and in many different settings, including academic medical centers, regional or community hospitals, hospice programs, or other community-based organizations. Programs differed significantly in the typical fetal diagnoses that drove the need for palliative care, the level of formal staff training in such skills as communicating bad news to parents, mechanisms used to ensure follow-up and continuity of care, and how services were reimbursed.

Most programs (70%) had been operating for less than 10 years, and 38% of programs used formal measures of quality assessment. One element of consistency was that all programs reported that spiritual and bereavement needs of families were addressed. The researchers concluded that more work is needed in this still developing field to determine which quality measures are most appropriate to meet the palliative care needs of this population.

Viewpoint

One of the many admirable characteristics of the field of palliative care is the ability of these professionals to seek out opportunities to reach the most vulnerable populations. In the field of pediatrics, the needs of parents who have become aware, during pregnancy, of a congenital anomaly that is incompatible with life, yet choose to continue the pregnancy, present an important opportunity for palliative care.

Conducting a national survey to learn about existing perinatal palliative care programs and services is a way of gathering valuable information about successful programs that can serve as models for others hoping to address the unique needs of this population.[2,3,4] A strength of this survey was that it used the national guidelines for palliative care from the National Consensus Project as a framework.[5] The survey results provide useful insights into the status of palliative care delivery in perinatal care based on those guidelines. Important findings included the reported collaborations with obstetricians, provision of bereavement services, extension of support to siblings, provision of spiritual care, and attention to cultural diversity.[6,7]

This survey is very timely because existing palliative care programs are expanding to provide perinatal care services, and new pediatric palliative care programs strive to include perinatal care. The findings are very encouraging; models of perinatal care delivery have been identified whose principles of quality care are based on the national palliative care guidelines. Hopefully these data can serve as a catalyst to strengthen existing programs and develop new programs for this underserved population. Supporting parents as they anticipate the birth of a seriously ill infant, one who is likely to die soon after birth, is important work that should be encouraged.

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