By Linda M. Bollenbach, MDiv, BCC
I recall an eventful day in NICU when a nurse practitioner called me over to her desk with an urgent inquiry, “Linda, aren’t you the chaplain on the palliative care team? Could they help us?”
A full-term baby named Trevor was dying. After days of growing increasingly ill, he was diagnosed with an HSV infection that would ultimately take his life. His young parents had been informed and were grief-stricken.
The palliative care team was not integrated into NICU, so we did our best within the unit to provide the physical, emotional and spiritual support the family needed in the weeks to come. One day Trevor’s mother said to me, “I don’t understand why this is happening. All that I know is that Trevor’s life has meaning. I don’t want to think about his death. I want to focus on his life and cherish every moment that I have with him.”
We honored her wishes, and gave her the space she needed to love and care for her son. She and the father of the baby had different needs, which we respected. I listened to the father, who expressed his sense of responsibility for the situation, as well as guilt over having to continue working.
Trevor lived for another month. He remained in NICU, because the couple’s living situation did not provide needed support. During that time we helped his family create memories. RNs took photos. Child life specialists made hand and foot molds. I encouraged the family and nursing staff to allow Trevor’s 3-year-old sister to see her little brother and take photos of them together.
After Trevor died, we gave the family keepsakes, such as blankets and the thermometer that his father requested. I helped them discuss burial arrangements and provided them with information about area support groups, one of which would invite them to a candle lighting service the following Advent.
I have been the palliative care chaplain at Mercy Hospital in Springfield for several years. During that time, I have also covered NICU, Labor & Delivery, and helped to coordinate the Infant & Child Bereavement Program.
Wearing different hats has given me the opportunity to consider what palliative care could look like along the full continuum of life, particularly in regard to one aspect of palliative care: end-of-life care. As I witness the difference that palliative care makes for patients and families who are nearing the end of a long and meaningful relationship with one another, I want to see that for patients and families who will likely have a short but meaningful relationship.
Palliative care is more about living than it is about dying. It is about freeing patients and families to embrace their lives and the time that they have together. If this is important for one who has had the opportunity to live a full life, it is equally important for one whose time on earth is brief yet precious.
I came to fully appreciate the value of palliative care when my father was diagnosed with ALS last February. Just six weeks later he died a peaceful and beautiful death. I learned that one gift of ALS was that the certainty of the outcome freed Dad from fighting death, so that he could embrace what remained of his life. We were able to focus on simply being a family together during that sacred time. We didn’t have to struggle with visiting hours in an ICU or burdensome therapies that would have prolonged his suffering and limited our interactions with him. My memories of those days inspire me to advocate for other families to have that meaningful time together.
When a family receives news of a life-limiting perinatal diagnosis, they ought to have the opportunity to embrace that sacred life and their time together as a family, however brief it may be. Sometimes in an attempt to shield them from hearing the harsh news that their child is likely to die, they are offered false hope and potentially robbed of the opportunity to fully embrace the limited time that they have.
As our understanding of how to support families experiencing the death of a child grows and as palliative care programs become more prevalent, it is natural that we begin to pull this knowledge together to develop perinatal and neonatal palliative care programs.
At Mercy in Springfield, we are beginning to formalize our process of providing perinatal palliative care. An interdisciplinary team, which includes obstetricians, neonatologists, RNs from L&D and NICU, a genetic counselor, social worker, bereavement coordinator, chaplain, ethicist, and palliative care NP meets monthly for an “Antepartum Ethics Case Review” meeting. The cases we review include diagnoses such as: Trisomy 13, Trisomy 18, anencephaly, Potter’s syndrome, certain heart conditions, babies of mothers who are HIV positive, etc.
We review each case and anticipate the best way to respond to each diagnosis. When there is an in utero diagnosis of a fetal anomaly incompatible with life, a family meeting is set up with several members of the team, who will help the family to do advanced care planning and develop a birth plan, if they so choose. The birth plan will address how the family wishes to spend time and create memories with their baby, as well as what rituals, keepsakes, and experiences are important to them. Members of the interdisciplinary team that will care for the family will review that birth plan, in preparation for the delivery.
Our program is still in its developmental stages, as I suspect many others are. It will take time and sharing of experiences to expand our understanding of how to better meet the needs of families whose children’s lives will be limited. Most of all, it will take the realization that true hope lies not in pretending that everything is going to be OK, but in being freed to cherish those we love, strengthened by supportive and compassionate caregivers.
Linda M. Bollenbach is chaplain at Mercy Hospital Springfield in Springfield, MO.