By Jim Manzardo
Answering a charge nurse’s page, I arrive to find Dr. Lisa, the medical director, still on service from an overnight shift, holding the hands of a deeply anguished mother whose child is at death’s door. Later, seeing this same doctor, I affirm her fine chaplaincy work.
At a quarterly gathering of pediatric critical care fellows that I facilitate, I listen intently as a first-year fellow speaks of how his nearly all-consuming schedule robs him of time with his family. His peers show great empathy, identifying with his struggle, and they tell him that it will get better.
In my office, shared with my social work, child life, music therapy, and case manager colleagues, we wrestle with another case of a chronically vented toddler whose very stressed parents are trying to learn all the care needed to take their child home and who may wait months before some home nursing can be set up.
An hour after prolonged resuscitation efforts by more than a dozen doctors, nurses, and respiratory therapists (while the family and I watch just outside the door), our team gathers to share what went well, what did not, what we could do better in the future, how well we worked together. And with a minute of silence, we honor the life of the deceased child.
This pediatric ICU, this psychologically, physically, and spiritually stressful environment, this sacred place of intensive caring where together we witness the breadth of human suffering, the human body’s marvelous natural healing processes, the amazing collaboration, focus, and dedication of brilliant minds, profound compassion, and parents’ sacrificial love, is where I have been truly privileged to work for the past two and a half years.
The 40-bed unit, staffed by teams of doctors, nurses, nurse assistants, pharmacists, nutritionists, interns, a social worker, a child life specialist, a chaplain, a music therapist and case managers, serves newborns to adolescents and young adults, who have been diagnosed with rare syndromes, cancer, and every kind of life-threatening disease. They have experienced traumatic brain injuries, cardiac and respiratory arrests, stem-cell, liver and kidney transplants. Many of them, especially former neonates, are chronically vented. On any given day, the majority of the patients are sedated, intubated and/or minimally interactive. We average about 40 deaths and more than twice as many resuscitative events per year. The patients and families come from all ethnic, religious, cultural, and socioeconomic backgrounds and from a vast geographic area, including other countries.
By having more time and availability to be with traumatized and grieving parents, I help the medical team stay focused on caring for the patient in critical situations. As staff members struggle with parents’ care decisions, lack thereof, or their inability to accept that their child is dying, I help them to understand more fully the larger reality of the family’s circumstances. Through my spiritual assessments, I inform the team when, for example, a parent’s guilt is preventing them from making a decision, or the feeling that removing their child from the ventilator would be tantamount to killing their child.
In situations of religious expressions that trouble or confuse staff, I try to offer spiritual interpretation. For example, once a Pentecostal family, on learning their daughter was nearly brain dead, spent 45 minutes with their pastor encircling the girl and commanding her in the name of Jesus to rise from the bed. I suggested to the staff that the parents were responding, yes, from grief and shock, but also from a faithful obedience to Jesus, who commanded the widow’s recently deceased son to rise up. Finally, I provide staff members space to vent their frustrations, their grief, the helplessness they feel when medical interventions are futile or following the death of a child.
As a pediatric chaplain, the bulk of my clinical work is with patients’ parents — mostly because the patients are sleeping, playing a game, watching TV, being sedated, or feeling too sick to engage. So I confess that I have often entered a room and immediately directed my attention to the parents, without acknowledging the heavily sedated or neurologically devastated patients. But some of my nurse colleagues have modeled for me respect and care of the non-interactive patients by speaking to them, calling them by name, and telling them each intervention they are doing. These nurses’ examples have been important reminders of how to care for every patient.
The medical team’s scientific intelligence, practical understanding of the human body, open communication, and commitment to treat each child with dignity motivate me to be more articulate about my patient encounters and deepen my surrender to mystery. The ways the fellows and nurses look out and care for each other remind me to be less of a lone ranger and more of a team player.
Sharing an office with my social work, music therapy, child life and case management colleagues allows us to freely discuss patients we follow, to gain insights from each other’s unique perspectives, and to regularly encourage, vent, laugh and cry with each other — in essence, to be fully human without pretense.
Our brief, same-day, post-code interdisciplinary gatherings — with shared facilitation by doctors, nurses, and myself — connect us like a family of equals around the dinner table, through open, honest, and critical reflection of what just happened, expression of feelings, affirmation, and humble silence. As we listen to and are vulnerable with each other, we are reminded that each person plays a vital role in our care for each child and family.
Jim Manzardo, BCC, is a chaplain at Lurie Children’s Hospital of Chicago, IL.
