This past semester, my preceptor, Deborah Carey, and I helped provide end of life care for a neonate and their family in the NICU. We received a shift report from the night nurse and learned the infant's systems history was rather complicated due to his prematurity. Mom was still inpatient and later in the morning after rounds visited the unit with Dad. It was hard to see that both parents were in shock of having a baby and the acuity of his condition. After morning rounds, the team learned that the infant had a condition that was incompatible with life, despite any life-sustaining measures. The decision was made to have a family meeting for discussing re-directing care. During this meeting, a decision was made by the parents to withdraw support of the infant and to think about his quality of life. The family wanted some time to gather their family and loved ones for this process. The social worker organized a baptism ceremony. Deb asked if they would like to have pictures taken of their son and the mom perked up.
As we left the mother's room and headed back to the NICU, Deb and I stopped by the storage closet to collect a memoriam box and packet to prepare for the family. As part of the box, we collected footprints, a lock of hair, and included provided clothing for the newborn. We also picked out a couple of outfit options as well as sterile water to use for the baptism ceremony.
The grandmother and sister of the father arrived and the whole family including Mom and Dad came to the NICU. We gave the family time to spend with their son, while we were waiting for the priest to come to the unit. When the priest arrived, Deb and I helped assist with the ceremony. I think we all take for granted all the amazing services and programs throughout our hospitals and having chaplaincy during this time was extremely important and meaningful to the family. After the ceremony, Deb helped continue to capture these moments for the family with pictures. With the family's consent and release of these photos to the hospital's photography department, a memoriam photo book could be sent to the family. We were also able to print some photos from our camera's printer and directly give them to the family as well. After spending some additional time with their son, Deb asked the family if they would like to be present when their son is removed from the ventilator. Initially, everyone shut down and Mom was completely overwhelmed. Deb helped encourage and explain how meaningful it may be for the family to be with their son to comfort him and hold his hand during the process. Mom was completely overwhelmed, but Dad and grandma decided they wanted to stay which I really think was so important for their grieving process.
We disconnected all other medication except the morphine and fluids. The idea after removing the patient from life support was to make sure he was as comfortable as possible. After the removal of the tube, Deb and I quickly prepared their son and brought him down to the mother's postpartum room in a white baby basket. Deb helped mom put her son skin to skin and gave the family privacy to visit and grieve.
After the infant was pronounced deceased, we gave the family some additional time to say goodbye. It was such a roller coaster day of emotions and our patient's family was grateful and although we only knew each other for such a small amount of time, being able to provide a caring environment while their son passed away was an honor. I think having experiences like this only help myself and other nursing students become a better nurse by knowing what you can do to help your patients and their families through this delicate process. I believe there is empowerment and strength in knowing there are certain things we can do as nurses during the end of life process for your patients and their families to make the experience more positive.
Overall, I feel having this incredibly challenging and sad experience with Deb was so important for my own understanding and future as a nurse to feel more comfortable. Deb was such an amazing source of support and calmness for this family in a sea of unknown. Deb is an amazing nurse who truly and selflessly dedicates herself to her patients and families in the NICU. Deb has over 40 years of nursing experience and is helping to train the next generation of NICU nurses. I feel her accomplishments and dedication to patients, students, and other nurses should be recognized.