Dealing With Death in the NICU -- A Conversation With Neonatal Palliative Care Expert Anita Catlin

Laura A. Stokowski, RN, MS


January 29, 2010

In This Article

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth

- Robert Frost, "The Road Not Taken"

Palliative Care and the NICU

Palliative care has come a long way in recent years. Nowhere is this more true than in the neonatal intensive care unit (NICU), where the very idea of death is incongruent with the reason for the unit's existence: to sustain life in newborn infants who otherwise might die on the day of their birth.

In many ways, the NICU has become a victim of its own success. Over time, smaller and more immature babies have survived, giving rise to the expectation that this trend can continue indefinitely. Consider the story of Helen and Evangeline.

Helen and Evangeline were 24-week dizygotic twins, conceived with assisted reproductive technology and born by cesarean delivery to a 44-year-old single mother, Nicole. Nicole was placed on bedrest at 21 weeks' gestation for preterm labor and received tocolytic therapy in an attempt to halt her contractions. She also received a course of antepartum corticosteroids to speed up maturation of the fetal lungs.

Nicole had pregnancy-induced hypertension that did not respond well to treatment. Furthermore, at 24 weeks, her labor progressed and the decision was made to deliver the twins. A neonatologist went to Nicole's room to discuss what might occur in the delivery room, issues regarding viability and resuscitation, and facts about prognosis for extremely preterm infants born at gestational ages comparable to Nicole's infants. Nicole was adamant that she wanted the babies to be resuscitated if they were born alive. At her age and considering everything she had gone through to become pregnant, Nicole insisted that this was her last chance to have children.

The biggest misunderstanding about palliative care is that it is just about dying, and giving up on a patient. To the contrary, palliative care is about quality of life, regardless of how long that life might be. Catlin and Carter[1] offer this definition of neonatal palliative care:

Palliative care for newborns is holistic and extensive care for an infant who is not going to "get better." Palliative care focuses on both the infant and his or her family. Palliative care may initially be combined with cure-oriented, disease-modifying care and then intensify when that form of care is no longer helpful or appropriate. Palliative care is an entire milieu of care to prevent and relieve infant suffering and improve the conditions of the infant's living and dying. It is a team approach to relieving the physical, psychological, social, emotional, and spiritual suffering of the dying infant and the family. Palliative care focuses on the prevention and relief of physical pain and suffering for the infant and on relief of existential suffering of the family. It is a planned intervention by trained interdisciplinary staff members who support with dignity the infant's time on earth and support the family's experience with empathy and culturally sensitive respect.

Today as in the past, most infant deaths occur in the hospital, and most hospitals do not have access to formal palliative care services, especially for neonates. Many NICUs do not even have palliative care protocols to guide the neonatal team in planning end-of-life care for terminally ill infants.

I had the opportunity to speak with Anita Catlin, an internationally known scholar, leader, and consultant in neonatal palliative care, ethical issues, and decision-making. We talked about the current state of palliative care in neonatal intensive care, and I asked her about some of the most frequent sources of uncertainty voiced by neonatal nurses.


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