Julianna Snow is terminally ill and suffering from an incurable disease. Although she’s stable at the moment, any germ that comes her way, even just the common cold virus, could kill her. She’s told her parents that the next time she falls ill, she wants to stay at home instead of going to the hospital for treatment and that means she would surely die.
If Julianna were an adult, there would be no debate about her case: She would get to decide when to say “enough” to medical care and be allowed to die.
But Julianna is only 5 years old. Should her parents have let her know how grave her situation is? Should they have asked her about her end-of-life wishes? And now that those wishes are known, should her parents heed them?
Julianna’s mother Michelle looked online for guidance about end-of-life talks with a 4-year-old. Finding nearly nothing, she started a blog of her own in hopes of helping other families in the same situation. Later, she contributed to The Mighty, a website where people write about grappling with disabilities and devastating diseases.
Julianna’s older brother has had counselling to help prepare him for his sisters death. He asked if his mum’s heart would stop beating from sadness when his sister passes.
Before these conversations, Michelle says she and Steve had planned to take Julianna to the hospital if she were to get another infection. But after hearing Julianna’s wishes, they changed their minds.
“She made it clear that she doesn’t want to go through the hospital again,” Michelle wrote CNN in an email. “So we had to let go of that plan because it was selfish.”
While most readers left supportive comments on her blog post, some thought Michelle and Steve had made the wrong choice.
If you want to read more about this touching story Elizabeth Cohen, CNN Senior Medical Correspondent has written a full 2 page spread called Heaven over hospital: Dying girl, age 5, makes a choice. I highly recommend you read it.
Let us know in the comments your thoughts on this very sensitive subject. Should she be allowed to choose her own fate? And if not, what age do you think she should be granted the right to decide?