Losing a Baby: How Good Is End-of-Life Care?

Laura A. Stokowski, RN, MS


February 23, 2015

In This Article

End-of-Life Care in the Neonatal Intensive Care Unit: Experiences of Staff and Parents

Cortezzo DE, Sanders MR, Brownell EA, Moss K
Am J Perinatol. 2014 Dec 17. [Epub ahead of print]

Neonatal Death and End-of-life Care

At a distant time in our history, when infant mortality rates were much higher than they are now and infants, especially newborns, were not expected to live, babies were not even named until their survival was assured.[1] This could take months or even years if the child was "sickly," during which time the unnamed child was not as valued as a human life. If the child died, as was often the case, grief did not overwhelm the family in the same way that it does today.

Fast-forward to the 21st century, when many children are named even before they are born, allowing the parents to begin the attachment process well before birth. Parents today do not expect their babies to die. It is a shock for which most are completely unprepared.

Sadly, despite advances in care and improved survival of premature infants, some babies die in the neonatal intensive care unit (NICU)—some quickly, and some after weeks or months of illness. A few NICUs have established formal palliative care programs to improve end-of-life care for infants and families, but such programs are not available everywhere, and in many NICUs, the medical and nursing staff must largely shoulder the burden of providing palliative and end-of-life care along with their usual responsibilities.

End-of-life care, however, is too important to be left to chance. If not well coordinated, care can be inconsistent and fragmented, and families are left feeling confused, upset, and even abandoned. Without a formal palliative care team, is it really possible to do an effective and sensitive job of managing what is both a tragedy and a momentous event in a family's life?


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