Pediatric Hospice Spiritual Care

I selected the topic of pediatric hospice care for today’s blog post because it caused me to reflect on my beliefs, my faith, my values, and my self-care. Pediatric hospice care, for me, is the most challenging, yet most rewarding specialty in hospice. “Most Americans think of hospices as facilities offering inpatient care to terminally ill adults. ‘But hospice is really a philosophy of care given in all sorts of different settings: the home, the hospital, a nursing home,’ says Pediatric Hospice Nurse Sue Huff, a veteran pediatric nurse who since 1998 has headed one of the country's leading children's hospice programs, Essential Care, in Cheektowaga, N.Y. ‘It's a philosophy of holistic care that takes a patient, whether a child or an adult, and treats not only the medical aspect of their life-threatening illness but everything about them as a person, including how they want to live with what time they have.’” (People, November 13, 2000 Vol.54 No. 20, “Comforts of Home”) My thoughts travel to the young couple whose child was born with a condition that would take her life within a month. My visits with them were filled with listening and loving them as they journeyed with their little one. Holding their baby was an honor. When the child went to heaven, they were resolute, yet very disappointed. Hopes and dreams for their daughter were dashed. Then, there was the spunky 4 year old who had a disease I cannot pronounce let alone write. All I know is that the disease covered her body with painful blisters. Mom and Dad needed me as much as “Spunky” (name changed). They were transplants to Florida from the north. Life for them was difficult, not only because of the terminal illness of their little one, but also, due to long-lasting unemployment and an inability to navigate “the system.” During one visit, Spunky had a question for me her Dad said. She nestled next to me on the couch, looked me square in the eye and asked, “Why did God allow me to have this disease?” How could I possibly answer this question? I reflected the question to her, “That’s a big question, what do you think?” Her answer flowed in childlike simplicity, “Oh, that’s an easy question … It’s to show God’s love.” My response? Let’s put it this way … I was glad my next visit took me 45 minutes to get to. I needed that time to process what she said and the way she said it. There are many more pediatric stories from my experience, but they all pretty much inform my chaplaincy in that focused listening, heart and soul, gentleness of manner and wisdom beyond my abilities are required of me… and then some. Feelings of inadequacy, even failure, were frequent. Those were my issues to resolve through debriefing with a trusted friend. Pediatric hospice chaplaincy tested my mettle. If you have pediatric hospice stories, our group would be blessed to hear them. Feel free to share them.