The changes in this revised statement reflect how we now view palliative care. Sixteen clinical recommendations span identification of eligible infants before and after birth, delineate components of a palliative care program, and discuss emotional support for parents, families, and healthcare providers.
BACKGROUND AND SIGNIFICANCE
Traditional neonatal palliative care focuses on improving an infant's quality of life and may be offered concurrently with curative care to treat symptoms and minimize suffering. Through ongoing assessment of care goals, parents, nurses, and other providers weigh the benefits of shifting the goals of care from focus on cure to provision of comfort for the infant and family. End-of-life care, one aspect of palliative care, supports a peaceful, dignified death for the infant. Perinatal palliative care now extends into the realm of obstetrics, neonatology, and pediatrics. Rather than occurring only after the fetus or infant is delivered, palliative care is also offered antenatally. Further amniocentesis with genetic testing or high-level 3D ultrasound may confirm that the developing fetus has a condition with life-limiting components. Palliative care should be offered to all parents who have been informed of a life-limiting fetal diagnosis. End-of-life care should include individualized bereavement interventions for women with a high-level multiple gestation and their families when the pregnancy may need to be reduced or if there is an intrauterine fetal demise. Palliative care provided by nurses and the health team is essential1 and begins with communication between the family and all involved departments—maternal fetal medicine, obstetrics, and neonatal. In North America, a woman may choose to end the pregnancy, have an early induction, or continue the pregnancy until delivery. At delivery, there will be more choices: whether to include the NICU staff in the delivery room, provide life support and transfer to the NICU, initiate both curative and palliative efforts at once, or bypass the NICU transfer for time the parents can hold and comfort the infant.2 The statement encourages families to create a birth plan that directs in advance the type of care they wish to receive. Families appreciate when planning for palliative care starts early in the pregnancy process and is delivered by a well-trained team.
The statement addresses issues around infant transport. Often parents are not told or do not hear that one transport outcome may be end-of-life care. They often interpret transport as cure. The ethical reality of separating mothers and infants when the outcome for the receiving NICU is the provision of end-of-life care has been discussed.3 All transport teams should be trained in holding difficult conversations with parents.
A greater discussion is included on artificial nutrition and hydration. When an infant with a life-limiting condition is delivered and lives through the NICU period, the infant may remain in the hospital or go home. If the infant cannot suck, swallow, or digest nutrition, a decision is made regarding artificial nutrition. Healthcare personnel have written about their experiences with infants who forgo nutrition and hydration and how they cared for the infant and family.
Additional resources for nurses wishing to specialize in palliative care are provided. Many countries now incorporate perinatal palliative care into their nation's healthcare delivery.4 Nurses may wish to refer to the video by Tammy Ruiz, RN.5
Neonatal nurses are essential to the provision of palliative and end-of-life care. As the professional voice of neonatal nurses, the National Association of Neonatal Nurses recommends that neonatal nurses be trained and participate in providing palliative and end-of-life care. The full NANN position statement can be located at the following address: http://www.nann.org/uploads/files/PalliativeCare6_FINAL.pdf
1. Munson D, Leuthner SR. Palliative care for the family carrying a fetus with a life-limiting diagnosis. Pediatr Clin North Am. 2007;54(5):787–798, xii.
2. Kuebelbeck A. Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life. Chicago, IL: Loyola Press; 2003.
3. Dulkerian SJ, Douglas WP, Taylor RM. Redirecting treatment during neonatal transport. J Perinat Neonatal Nurs. 2011;25(2):111–114.
4. Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatr. 2012;12:25.