Julianna Snow, a five year old from Portland, Oregon with an incurable neurodegenerative illness called Charcot-Marie-Tooth disease, has told her parents she would prefer to go to heaven next time she gets sick rather than the hospital. Even if doctors are able to save Julianna from her next illness or health scare, Julianna’s long-term prognosis includes being hooked up to a respirator with a very low quality of life. Julianna’s parents, Michelle Moon and Steve Snow, jumped into the heated debate regarding end of life decision making via Michelle’s blog, where they announced that next time Julianna is sick, they may not take her to the hospital.
Adults with capacity have the right to determine their end of life care. However, practical and ethical concerns arise with allowing minors to decide their own end of life care. Medical experts and those familiar with Julianna have various opinions regarding the issue, but the question remains: to what degree should Julianna’s parents follow her wish to go to heaven (and thus forego life-sustaining care) when she gets sick again? Bioethicist Art Caplan explains that he does not believe a four year old can understand the concept of death. Dr. Chris Feudtner, a pediatrician and ethicist, disagrees with Caplan, arguing that only Julianna understands the true ramifications of her progressive neurodegenerative disease.
It seems that when Julianna becomes sick again, Steve, Michelle, and Julianna will make the decision together about whether Julianna should return to the hospital.