When a teenaged patient says no

Is it ever OK for a patient to refuse medical treatment? What if the patient is a child or a teen? What if it’s the parents who are refusing treatment on their child’s behalf?

These are some of the issues that’s swirling around the story of Daniel Hauser, the 13-year-old from Sleepy Eye whose mother has fled the state with him to avoid chemotherapy for his Hodgkins lymphoma.

Blogger Amy Rea, from Other Voices at the Star Tribune of Minneapolis, sees this as an important case for medical ethicists:

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?

One of the questions that has been raised is whether Daniel Hauser, at 13, is old enough to understand his diagnosis and treatment and give informed consent. If part of the maturation process is allowing adolescents to become more independent and make their own decisions, should this extend to medical self-determination?

 There have been other cases of teenagers who have turned down cancer treatment – Abraham Cherrix, for one, whose decision was upheld by a judge in 2006. Abraham was 16, however, as was Billy Best, who ran away from home in 1994 to avoid continuing chemotherapy. And there’s also the issue of Daniel’s inability to read, which arguably makes him more vulnerable and less able to understand his disease and treatment in a way that would allow for informed consent.

These are not easy issues to address, as participants in a Harvard Medical School medical ethics seminar found out a few months ago. They were divided on whether to involve the court system on forcing a teen to undergo cancer treatment.

The seminar was divided, much as society is. One group, including students with a libertarian bias, couldn’t stand the idea of a 16 year old who loved being alive dying an avoidable death. This group would turn to the court. Others were impressed with Billy’s thoughtfulness and the fact that his parents loved him, understood what the doctors were saying, but supported his choice. They took Billy’s stand to reflect an informed consent that should be respected. This group proposed to follow Billy, hoping for the best, but intending to negotiate with him if the cancer progressed.

But to Dr. Arthur Caplan, one of the foremost medical ethicists in the United States, the Hauser case, at least, is "not a tough call for me."

"Parental rights are strong, but they do have a limit when you’re basically sacrificing your child for a religious belief that they themselves can’t articulate," he said. Caplan and CNN legal analyst Jeffrey Toobin discussed the Hauser case this week with CNN’s Anderson Cooper in a Q and A that’s worth reading.

Caplan, and the doctors who testified earlier this month at a child protection hearing in New Ulm, said that even though Daniel Hauser has said he’ll physically fight any cancer treatment, this seldom actually happens.

What’s key is to get at least one family member on board, Caplan said. "When you’re really up against it and you start to realize the doctors are saying this is the cure and you’ve got to go with it, pretty soon, or you’re going to miss the opportunity, one or both parents usually begin to waver."

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