A Brown County judge has ruled today in the case of Danny Hauser, the 13-year-old from Sleepy Eye who has been refusing treatment for Hodgkins lymphoma on religious grounds.
The decision: Danny will remain in the custody of his parents, but the family has until Tuesday to find an oncologist and obtain medical treatment for him.
The spectacle of a child being forced to undergo unwanted cancer treatment is abhorrent. But for what it’s worth, I think the judge’s decision is the right one. Thirteen is too young for a child to make his own medical decisions, and parents have a legal, moral and ethical duty to be responsible for their children’s well-being. Although no one can ever predict the outcome, Danny’s cancer is highly treatable and this youngster deserves the best chance medicine can give him.
It’s too bad it came down to this. And the whole story begs another question: Could this entire conflict have been avoided in the first place?
More than anything, the Hausers seem frightened, mistrustful and under a great deal of stress. Possibly they didn’t have much trust in the health care system to begin with. Then their son, one of eight children, became seriously ill and in urgent need of chemotherapy. Danny’s mother, Colleen Hauser, testified last week that she felt overwhelmed and intimidated. There was testimony that Colleen Hauser’s sister died of cancer when Danny was 5 and the impact this had on Danny. Danny’s first treatment didn’t go well, making for a rough start to what is surely an ordeal under even the best of circumstances.
Sometimes the medical team can get so caught up in the immediate situation that the patient’s and family’s emotional needs take a back seat. Was anyone making sure the Hausers understood what was happening? Was there adequate communication? Were there opportunities for the family to ask questions and express their concerns? Was anyone aware that Danny has a learning disability and has difficulty reading and may have been less able than other 13-year-olds to truly understand what was happening to him?
I hope someone on the medical team was able to recognize this was a family who perhaps needed more time and attention so they could trust and feel comfortable with the plan for Danny’s treatment.
When Danny didn’t come back for the second round of chemotherapy he was supposed to have in March, did someone follow up? Was there an effort to reach out?
Finally, before this case made it all the way to the courtroom, was there any attempt to talk to the family and try to settle this in a less adversarial way?
I’d like to think all these things happened but I don’t know if they did. I spoke earlier this week with a reporter who has covered this case closely, and he said these questions were not asked during the hearing.
The adults in this case have all been well-intentioned (with the exception of Nemenhah and its shameless exploitation of this crisis in the Hausers’ lives) but there seem to have been some missteps that perhaps left the family feeling pressured, mistrustful and not fully prepared for the reality of his first, difficult chemotherapy treatment. Misunderstandings can build up on both sides. Families can feel disrespected and under attack; the medical team can feel sabotaged and ignored. Although calling in Family Services may ultimately have been the only way to resolve the situation, it could well have been the deal-breaker for the Hausers.
This story has been cast as a struggle over religious belief. It has been cast as being about a child’s right to self-determination and a family’s right to make critical medical decisions on behalf of their child. But I think it’s about more than this. I think at the heart of it, this is a very human story about a family who is scared and overwhelmed and feeling under siege, and who has chosen a questionable, unproven path because, to them, it seems like the only way to keep the threat manageable. Brow-beating them is not going to work; in fact it has clearly been counterproductive. But neither should Danny be left to the mercy of some dubious therapy because of decisions driven by fear and misinformation.
It should not have come to this. But it did. And even though the story will eventually fade from the headlines, Danny and his family still have to live through the next chapter and the one after that and the one after that.
For better or worse, a tremendous amount of damage has been done. Someone will need to talk this youngster down from the ledge he’s on. This family will need a lot of reassurance and a lot of support to repair the bridges that have been burned.
The Hausers also will have to work harder with the medical team. This is a two-way street. They’ll have to find reasons to trust the team and give them the benefit of the doubt.
Right now, in Danny’s mind and in his family’s mind, they might think they can’t do this. They might think this is all too hard and they’ll never be able to get through it. But they’re not the first family who’s ever dealt with cancer and they won’t be the last.
My hope for this 13-year-old and his family is that they can be connected with another family with a child who has had Hodgkins – someone who can be honest with them, share their feelings, help them know what to expect during the months ahead, and give them the kind of support that can only be found from someone who has walked the same path. It’s something that probably should have happened much sooner. A lot of things probably should have happened much sooner. But it isn’t too late, and the Hausers may yet be glad of the court’s decision today.