Every time someone asks me what I do for a living, the number one response I receive is, “Oh my God, that must be so sad!” I have been a neonatal intensive care nurse for over four years now, and my response has never changed. I have always told people that my career is actually a happy and rewarding one, where I have the privilege of caring for new life; that in simple terms—was born into the world a tad too soon, and sometimes critically too soon, at 23 weeks gestational age and less.
I explain to people that I have one of the best jobs in the world. I get to help babies grow to their fullest potential each and every day. Sometimes after requiring therapies that prevented her from holding him before, I am the hands that gives a mother her child to hold for the very first time. Some days, I help parents fasten their baby into the car seat as they walk out of the shiny NICU doors to finally take her home. And with the heaviest heart, some days, days I’ll never forget, I’ve given a mother her child to hold, for the last time.
It is not something any of us want to think about, babies that never have the chance to leave the NICU. Even people like myself, who have witnessed it before, when a child’s life ends to soon and before it barely even began. But just as elderly patients with chronic illness, infants deserve dignified end of life care as well as proper support to their families during these times. It has come to my concern, that many Neonatal ICU’s do not have the availability of palliative care for infants with poor prognosis and life-limiting conditions.
I think it is important for NICU’s to consider incorporating palliative care as a specialty available for unique cases to prevent discomfort experienced by premature infants. Palliative care can combine medical interventions and comfort measures in order to ease the end of life process. Having seen some babies born with conditions that are painful and not compatible with life, I believe that it is crucial not to ignore specialized needs of infants at the end of life, even though we do not want to think about it. The 24-week gestational age preemie, with bilateral grade 4 intraventricular hemorrhages and her parents have the right to full resuscitation and intervention, but also the right to be thoroughly educated and offered palliation and comfort care. With certain cases, thoughtful consideration of options and shared, informed decision making should be facilitated via end-of-life care specialists.
There are situations in the NICU where interventions that are considered life-saving, will not make a difference in the ultimate survival for the infant. And this is where my concern lies—these are the times when palliation can and should be considered. I wanted to bring light to a world and topic, that is thankfully unknown to many. Bereavement and palliative care for preemies is a sensitive subject, but it needs to be educated about, trained and planned for. Palliative care measures include providing warmth, enteral feedings if parents wish, pain medication and simple medical interventions such as nasal cannula to the infant it is maximizes comfort.
Comfort care allows for intimacy among the families and their baby, with unlimited holding and time together that may have not been possible during other intensive interventions. Palliation prioritizes the infant and family’s quality of life during this difficult time. Just as the elderly, an infant also deserves a natural death with maximized comfort and ease of distress. Coming from a nurse, who wants to provide the proper care to her patient that won’t be able to go home with their parents. For the parents who don’t know what is best to do for their one-pound baby who is fighting for its life, lets push for specialized end of life care for preemies.
I hope for the future that Palliative Care teams or specialists will be consulted and incorporated into plans of care and home for so many little lives, the neonatal intensive care unit.
Hayley Trusty, RN-BSN; is a NICU nurse and a neonatal nurse practitioner student at the University of Connecticut.