A 5 Year Old Wants to Die At Home

The "slow motion horror story" of watching a child die is described by Michelle Moon, a neurologist, who blogs about Julianna, her five-year-old with a rare degenerative disease.

Last fall, we made the difficult decision to enroll in hospice. It didn’t feel right, but we were told that we could revoke it at any time. The plan was to try it out, get more support at home and go to the hospital again if she got sick. A few months after we started hospice, Julianna made it clear to us that she does not want to go to the hospital again. Like so many kids who have had to face life-threatening illness, she is wise beyond her years — but she is still only 4 years old. I do not think that she will survive another illness, especially without aggressive intervention.

Dr. Moon's "remarkable" conversations with her daughter about death and heaven are touching and inspiring. She makes sure that Julianna feels safe and loved. We thank Dr. Moon for sharing her story and keep the family in our thoughts.