Death is one of those inevitable yet most feared topic to talk about, usually by adults In some cases however, more common to those suffering from incurable or serious medical condition, the decision whether to continue medication in the hospital or stay at home and wait until they stop breathing is left on their hands or their loved ones. The End-of-Life Care choice is a serious decision to make; all options should be carefully weighed.
Five-year old Julianna Snow is suffering from a serious case of a fatal neurodegenerative sickness called Charcot-Marie-Tooth disease. According to National Institute of Neurological Disorders and Stroke, Charcot-Marie-Tooth disease (CMT) is a known genetic neurological disorder. 1 out of 2,500 Americans are experiencing it. The illness was first discovered on 1886 by Jean-Martin Charcot and Pierre Marie in Paris, France, and Howard Henry Tooth in Cambridge, England, whose names were adapted to identify the disease. A person with CMT or hereditary motor and sensory neuropathy (HMSN) has both of his motor and sensory nerves damaged, thus making some activities such as speaking, walking, breathing, and swallowing difficult. Julianna's case is very severe that catching a cold could result to a deadly pneumonia. Saving her requires a big miracle and the most saving her doctors could do is sedation on a respirator with an extremely weak body.
Julianna's parents were determined to grant all of her wishes before she leaves them even to decide her own End-of-Life Care. Michelle Moon, Julianna's mother wrote CNN an email stating, "She made it clear that she doesn't want to go through the hospital again, so we had to let go of that plan because it was selfish." Though her choice was accepted by both of her parents, many people who heard about her story show disagreement on the parent's decision to let a five-year-old decide on her own.
Art Caplan, a bioethicist reacted when he read Michelle's blog. "This doesn't sit well with me. It makes me nervous," he utters. "I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there's zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn't really develop until around age 9 or 10." Caplan further explained how children at Julianna's age often want to please her parents and seeing her suffering must be a hard thing that could have influenced the choice she made.
Dr. Chris Feudtner, pediatrician and ethicist at Children's Hospital of Philadelphia who worked with Caplan at the University of Pennsylvania in the past, however supported the parents decision and stated, "Palliative care isn't about giving up. It's about choosing how you want to live before you die; this little girl has chosen how she wants to live." Though some showed their contradiction regarding the subject, for Dr. Feudtner , her parents' decision to listen to Julianna's plea is acceptable.
