ICBioethics Blog 

Pediatric End of Life Decisions: Julianna Snow

Written by: Leah Jeunnette, Ph.D(c)

The Snow family is living a tragedy, watching severely debilitated 5-year-old Julianna die from a rare and fatal form of Charcot-Marie-Tooth (CMT) disease. In CNN’s 2-part “Heaven over Hospitals,” the family explained how they decided to allow Julianna to make her own end of life decisions regarding care. After extended amounts of excruciating life-prolonging treatments, Julianna’s parents (mother Michelle is a neurologist) have allowed her to voice her assent to or refusal of treatment, and they listened with intelligence and love, using her wishes as the framework to guide end of life decisions based on care options. According to the CNN report, physicians and nurses of Julianna’s affirmed this approach, aware of the futility of treatments and the pain they inflict.

I applaud this family who exhibited careful consideration of all their options and the ramifications of their decisions. Michelle has been vocal in her blog regarding her discussions with Julianna about end of life issues: finality of death, heaven, God, hospitals, and the dying process. She recounts conversations she has had with Julianna, phrased simply, without being too leading, where Julianna has consistently expressed her wish to go to heaven, not back to the hospital, and her understanding of the permanence of death.

Yet some critics feel the need to toss out phrases like “magical thinking” and argue over developmental readiness to understand death (do any of us really understand death?!).

Watching a child die is traumatic; it is impossible to understand the complexities without experiencing it. I ask that dissenters proceed with extreme sensitivity and caution before passing judgment on this family’s approach to end of life decisions. Julianna is going to die from complications of her disease—it is not an if, but rather a when. At this point, treatments are invasive, painful and futile—feeding tubes, breathing masks, and the horrors of nasotracheal suctioning without sedation. The grim image of being kept alive on a respirator looms forebodingly. There are many adult patients all over the world (to say nothing of other children) who would draw the same conclusion as Julianna when facing inevitable death, individuals who want to define their quality of life, live out life on their own terms, and prepare for dying.

On a daily basis, Julianna’s parents concentrate on taking care of their family and on helping their little girl live as richly as possible, just like most parents. They remain focused on celebrating her as their “truly living girl” who “lives joyfully and loves generously” (taken from Michelle’s blog, Nov. 2). As for their decision regarding what lies ahead, Michelle Moon and Steve Snow are informed, educated, loving, attentive, clearly not negligent in her care, and feel they are looking out for their daughter’s best interests, as dutiful parents are expected to do. They are exercising their parental rights to make informed end of life decisions on behalf of their child.

I think it is difficult enough for the Snow family to face the end of Julianna’a life, bravely supporting her and each other, without having to justify to those not walking in their shoes what is legally and ethically their prerogative. At least that is what my academic and clinical training in ethics has led me to surmise….

Mitch Gennuso