Abstract

In lieu of an abstract, here is a brief excerpt of the content:Tiny Person, Big ImpactT.S. MoranI met J on a Tuesday, the second day of my new job as the pediatric oncology social worker. Five days later, he died.Although J was 8 months old, he seemed tiny, like a preemie. When I saw him, he was snuggled into the shoulder of the attending physician. It was evident that one of his diagnoses was failure to thrive. He also had what was thought to be a low-grade glioma of the optic pathway, and despite months of treatment, he was declining. It was clear that the team cared for J very much. They visited him, held him, played with him, and sang lullabies to him in Spanish. I was so impressed by their compassion.J had spent about half of his short life at the hospital. He was born prematurely to a young mother, herself in foster care. His mother had numerous obstacles preventing her from visiting often and it did not seem that she bonded well with him. J's mother stated that her boyfriend discouraged her from visiting. She did not have transportation and declined offers of hospital-funded Uber rides. She had little prenatal care or education about becoming a mother.J's mother seemed guarded in her interactions; hesitant to reveal anything that might show her vulnerability. The team was frustrated as it seemed she was not receptive to their efforts. The team was also concerned that she did not fully understand J's condition due to her poor health literacy, despite the use of a certified language interpreter. Still, when she did visit, she was kind and caring and stated that she did not want her foster mother involved in providing J's care.Part of my job was to help prepare the family for discharge to home. I had been speaking to their caseworker from Child Protective Services. She was a strong advocate for both mother and baby. After several meetings with the team that included J's mother and the caseworker, J's mother accepted his prognosis. She was willing to provide care at home with hospice support. She came to the unit several times that week to receive training about his care needs. The hospice nursing visit was scheduled, and J and his mother left the hospital on a Friday.The caseworker called on Monday to tell us that J had passed away peacefully on Sunday. The reaction on the unit was palpable. New residents and seasoned chiefs were teary-eyed and sighing. To some, it seemed like a relief. Given the team's extraordinary care and concern shown to this family, I was not surprised by their emotions.What surprised me was my level of grief. I had spent the 12 years prior serving adult hospice patients; I understood end-of-life care and death's eventuality. I thought I was well prepared. This experience was different from my past. I was able to cope with an adult patient's passing without much distress, accepting that most adults had lived a full life.I felt grief for the team who had invested in J, and for his short life filled with illness and pain. I felt grief for his mother, who had experienced a horrific childhood, had lost her innocence too young, and had been robbed of the opportunity to experience joyful parenting. [End Page 82]The chief recognized the team's need for support and quickly organized a "debriefing." A lot of the team participated, even those who only had brief contact with J. Everyone had a chance to reflect on their experience in caring for this child. Because of my hospice training, I was included. I validated their loss, their efforts, and their love for J. I provided basic grief education, enumerating their possible reactions of sadness, anger, frustration, fatigue, confusion, or numbness, and this helped me to feel like I also contributed to his care. I encouraged self-care—from taking time off, to lingering over an extra cup of tea, to speaking about their experience with me or another social worker.When I spoke about my feelings to my coworkers, they were understanding and acknowledged...