Now that Daniel Hauser and his mother have gone missing, their story has gone national, and the story of the 13-year-old boy with Hodgkin's Lymphoma whose family is refusing chemo is gaining attention. There are plenty of pros and cons to each side. Freedom of religion, freedom to choose medical care--these are valuable freedoms indeed, and they should be protected.
However, the patient in question is 13 years old. According to a very troubling column by Jon Tevlin in the Star Tribune this week, Daniel was homeschooled, but when applying to a charter school, was found to not even be able to read the word "the." According to today's Strib, Daniel was taken to his court-ordered x-ray, where it was found the tumor had grown, but when the doctor started to explain the situation to Daniel, his mother cut the visit short.
So what we appear to have is a 13-year-old boy who may or may not be able to read and a parent who actively discourages him from learning more about his condition. This is the 13-year-old that, according to the mother, has "made up his mind."
I have a 13-year-old boy--in fact, he has an older brother, so this is my second go-round with 13-year-old boys--and they do indeed make up their minds about a whole lot of things. There are times when my husband and I have to step in and say, "Sorry, but no." It's part of our job--research on the teenage brain definitely shows that they're still growing and developing, and aren't anywhere near ready to make complicated, long-term decisions. It can be argued that the parents in this case have done just that by refusing the treatment, yet they make it sound like it was his choice: he made up his mind.
There will almost certainly be a fair amount of coverage of this topic, and medical ethicists will (and should) weigh in. Where is the line drawn? When is it OK to let a family--or boy--choose to refuse medical care for their likely terminally-ill child, when treatment would most likely save him?
I don't know the answers. But the picture being painted of a 13-year-old boy who probably has not had much access to scientific information about his condition making up his mind to avoid treatment is very troubling indeed.