Clinical Guidelines and Standards · Guidelines by Clinical Area
RRM Academy Synopsis
ACOG advises offering perinatal palliative comfort care as an option
ACOG advises presenting perinatal palliative comfort care as one option for life-limiting fetal conditions. The 2019 Committee Opinion carries the endorsement of the American Academy of Pediatrics. It describes the main parts of this care and the informed consent that comes first.
Key Findings
- For pregnancies with a life-limiting fetal condition, the committee advises presenting perinatal palliative comfort care among several options, which include pregnancy termination (abortion) and full resuscitation and treatment of the newborn.
- The committee names four generally advisable components: a formal prenatal consultation, a birth plan, newborn and pediatric specialists when needed, and support from pregnancy through the postnatal period, including bereavement counseling.
- The opinion cites 23,455 infant deaths reported in the United States in 2015, with birth defects and chromosomal conditions the leading cause at 20.6% of cases.
- In a cited retrospective cohort study of more than 40 children's hospitals, neonates represented 41% of all hospital deaths, and only 2% of them received palliative care services.
- The committee states that no evidence identifies the best model for delivering perinatal palliative care, so programs may differ between institutions.
Interpretation
ACOG Committee Opinion Number 786 comes from two ACOG committees: Obstetric Practice and Ethics. The opinion sets out a framework for perinatal comfort care. Programs can differ between hospitals. The committee says prenatal diagnosis is usually right, though some cases differ. Informed consent and ongoing talks with the family run through every stage of care.
RRM Context
Restorative reproductive medicine treats the couple as the unit of care. For newborn decisions after birth, the opinion's ethics section calls for the input of both parents when practical. For families who choose this care, the committee sets the team's goal as support and continuity of care through pregnancy, delivery, and the postpartum and neonatal periods. The committee strongly encourages bereavement counseling after a child's death.
Abstract
Perinatal palliative care refers to a coordinated care strategy that comprises options for obstetric and newborn care that include a focus on maximizing quality of life and comfort for newborns with a variety of conditions considered to be life-limiting in early infancy. With a dual focus on ameliorating suffering and honoring patient values, perinatal palliative care can be provided concurrently with life-prolonging treatment. The focus of this document, however, involves the provision of exclusively palliative care without intent to prolong life in the context of a life-limiting condition, otherwise known as perinatal palliative comfort care. Once a life-limiting diagnosis is suspected antenatally, the tenets of informed consent require that the pregnant patient be given information of sufficient depth and breadth to make an informed, voluntary choice for her care. Health care providers are encouraged to model effective, compassionate communication that respects patient cultural beliefs and values and to promote shared decision making with patients. Perinatal palliative comfort care is one of several options along a spectrum of care, which includes pregnancy termination (abortion) and full neonatal resuscitation and treatment, that should be presented to pregnant patients faced with pregnancies complicated by life-limiting fetal conditions. If a patient opts to pursue perinatal palliative comfort care, a multidisciplinary team should be identified with the infrastructure and support to administer this care. The perinatal palliative care team should prepare families for the possibility that there may be differences of opinion between family members before and after the delivery of the infant, and that there may be differences between parents and the neonatal care providers about appropriate postnatal therapies, especially if the postnatal diagnosis and prognosis differ substantially from antenatal predictions. Procedures for resolving such differences should be discussed with families ahead of time.
