No one ever expects that when they become pregnant, their baby may not be born alive or may pass away after birth. And yet this is the reality for an unfortunate number of new parents every year. Many of these babies—whether they are born extremely prematurely, or with birth defects or other significant life-limiting conditions—come through the neonatal intensive care unit (NICU). As such, all who provide care in the NICU need to be prepared to provide sensitive and caring emotional support to parents who find themselves in this difficult situation of neonatal death and infant loss.
NICU Palliative care involves transitioning a baby from life-saving interventions to providing “comfort care,” understanding that when it is offered, any interventions that might once have been considered “life-saving” would not change the ultimate outcome in favor of survival. Comfort care consists of providing warmth, enteral nutrition (only if desired by parents), pain medication, and simple interventions such as nasal cannula oxygen if it is thought it would make the baby less distressed. Most importantly, comfort care involves intimate contact and unrestricted holding between parents and their baby, as well as time with extended family, which is not usually possible to the same degree when baby is undergoing intensive care. The emphasis is on the family’s quality of life during their time spent together.
Sometimes a choice to provide palliative care might be made before a baby’s birth, as when a fetus is known to have a life-limiting condition, such as Potter’s syndrome (bilateral renal agenesis) or anencephaly. At other times, the decision to move to palliative care might be made after a thorough and careful assessment of a baby’s condition sometime after birth and while in the NICU…but only after thoughtful consideration of all options and shared, informed decision-making with the parents. An important study by Parravicini et al showed that when diagnoses of life-limiting conditions among infants were accurate, the provision of intensive care did not prevent death or prolong life, compared with the provision of comfort care. If parents understand this concept, it might enable them to choose to Allow a Natural Death (AND) instead of wanting a “full code” to be undertaken for their child. Language is important when discussing end-of-life issues with families. AND has been introduced as an alternative to Do Not Resuscitate (DNR), and it emphasizes what will be done (provide comfort care) instead of what will not be done (provide resuscitation). (Breault, 2011)
Although the American Academy of Pediatrics recommends that hospitals have programs for palliative care for children (AAP, 2013), many have not yet established such programs. Having components of such a program, including an order set, a nursing care plan, medication guidelines, hospital staff education and patient resources improves and enhances the quality of end-of-life interventions. (Younge, 2015; Samsel, 2015) Having a NICU palliative care program also eases staff anxiety about how to proceed in such cases.
Bereavement care in the NICU, which goes hand in hand with palliative care, is the support provided to families to help them cope with infant loss. Every NICU should have a list of NICU bereavement interventions from which parents can choose, according to their cultural practices, to make memories with their baby. Many other resources to enhance the provision of NICU palliative and bereavement care, including palliative care birth plans, a comfort care order set, guidelines for organ donation, and information about Angel Gowns and remembrance photography services available through Support 4 NICU Parents.
Families also want emotional support that is empathetic, honest and straightforward, caring and sensitive. Providing the NICU staff with education about how to talk to families undergoing loss can increase their confidence in an area of practice in which many feel uncomfortable. (Twamley, 2013) Additionally, NICU staff need support to deal with their own emotions regarding death and dying. Holding debrief sessions after difficult cases or infant deaths can help staff manage their own grief. (Keene, 2010) A guide to holding debrief sessions is available through Support 4 NICU Parents.
Palliative and bereavement care in the NICU, when provided with sensitivity and confidence by NICU staff, can ease the pain of infant loss for those who must confront it.
- Breault, J. 2011. “DNR, DNAR, or AND? Is Language Important?” Ochsner Journal 11 (4): 302–6.
- American Academy of Pediatrics Section on Hospice and Palliative Medicine, and Committee on Hospital Care. 2013. “Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations.” Pediatrics 132 (5): 966–72.
- Younge, N, PB Smith, RN Goldberg, DH Brandon, C Simmons, CM Cotten, and M Bidegain. 2015. “Impact of a Palliative Care Program on End-of-Life Care in a Neonatal Intensive Care Unit.” Journal of Perinatology 35 (3): 218–22.
- Samsel, C, and BE Lechner. 2015. “End-of-Life Care in a Regional Level IV Neonatal Intensive Care Unit after Implementation of a Palliative Care Initiative.” Journal of Perinatology 35 (3): 223–28.
- Twamley, K, P Kelly, R Moss, A Mancini, F Craig, M Koh, et al. 2013. “Palliative Care Education in Neonatal Units: Impact on Knowledge and Attitudes.” BMJ Supportive & Palliative Care 3 (2): 213–20.
- Keene, EA, N Hutton, B Hall, and C Rushton. 2010. “Bereavement Debriefing Sessions: An Intervention to Support Health Care Professionals in Managing Their Grief after the Death of a Patient.” Pediatric Nursing 36 (4): 185–89.