I was reading recently about Justina Pelletier who, last week, was finally returned to her family after a 16-month legal battle with DCF in Massachusetts. A judge awarded the state custody of Justina due to alleged “medical abuse” by her parents, when, in fact, her parents were following the medical advice and diagnosis of her Tufts Medical Center physicians. I’ve been following this story since the beginning, and am so pleased Justina and her family are finally together again, yet still so angry at the system that allowed this young girl to be taken from her family.
The Back Story
In one fell swoop Justina’s parents lost custody of their child when a fairly fresh-out-of-school resident physician at Boston Children’s Hospital, who had never treated Justina before, examined her, changed her previous diagnosis, didn’t let her see the doctor to whom she’d been referred, and promptly accused her parents of medical abuse when they wanted to transfer her back to Tufts. I think most people connected with the family were stunned by this custody decision.
This could so easily happen to any family. Picture yourself and your children here. You’re just seeking the best care for your child, following medical advice, and then you run into a disagreement with a doctor or other medical provider. Or, like the Pelletier family, you get caught in the crossfire when doctors disagree with one another about your child. In this case the family sided with Justina’s previous diagnosis at Tufts, questioning the new diagnosis from Boston Children’s. Wouldn’t you? It’s not like they were off in left field here; they were pursuing the course of treatment set by her original medical team.
I feel like I’m fear mongering, but other parents should be scared by this story. Any referral to a new medical provider could change everything in an instant. I’m not trying to scare parents out there by inventing a make-believe story about a make-believe horrible thing that happened to a make-believe family. This actually happened. Hospitals, doctors and judges actually do have the power to do things like this to families like the Pelletiers, and yours, and mine.
As Christian parents our vocation in its most basic sense is to take care of our children’s needs, which include their physical health. We do this in many ways: making informed decisions, carting kids to appointments, following prescriptions or at-home therapies, brushing their teeth every night, and so on.
In reality, our parental vocation to protect our children also includes the animal instinct to fight to the death against anything we perceive as threatening to our young. As Christians, we must balance this instinct with our vocation of neighbor to all the other people we encounter. We are called to show loving-kindness toward our neighbors, who include our children’s doctors, with whom we may disagree, or even DCF personnel, like those involved in the Pelletier case.
How opposite these callings can be! The God-given vocation of parent supersedes that of neighbor in primacy, though. Our service to others should always be organized by those closest to us receiving priority; our spouse, children, and parents should always come before our obligations to civil authorities.
Ironic Hostility Toward Involved Parents
Parents who want to make informed choices about their children’s care are theoretically the kind of parent the medical establishment wishes all parents to be. However, it is this kind of parent who often intimidates or offends some doctors when they ask for information to further understand their child’s treatment plan. I’m grateful we’ve personally had many wonderful doctors who, gladly and patiently (and sometimes repeatedly), offer explanations to those of us who didn’t choose to go to medical school.
However, it’s that one doctor who scares me: the one who wants the parent to sign off on consent forms without reading or asking questions. (Why are they always surprised when I want to read the forms before signing?!) The doctor who scares me is the one thinks that his two decades in school supersede the legal rights and protective instinct (and, honestly, the intelligence) of the parents. It is this type of doctor who ironically accused Lou and Linda Pelletier with “medical neglect,” when they were anything but neglectful.
Don’t Be Scared, Doc.
It’s not that we parents don’t hold our kids’ doctors in a high esteem; believe-you-me, I’ve seen first-hand how their decisions have repeatedly saved my child’s life when she was extremely ill.
It’s just that medicine isn’t really black-and-white. We’re talking about possibly the most quickly-evolving realm of knowledge out there. New evidence is constantly churning out of scientific journals, new discoveries are always being made, and new statistics are continually piling up. “Best practices” can change from one day to the next, when the groundbreaking study of yesterday gets eclipsed by today’s even more groundbreaking study.
So, it’s not that parents have no trust in the two-decades-long education their kids’ doctors undertook, it’s that we want to know that these same doctors have the most up-to-date facts about the treatment they want to recommend for our children, not the child of ten years ago. Parents want to understand why a particular course of treatment is appropriate for their child. That is all. We really will believe you, Doc, but sometimes you have to present your case to us. We’re not superstitious, we believe in science just like you, Doc. We want statistics and facts, too. That is why we ask questions, not to challenge your status as Almighty Knower of All Things Medical.
In light of the charge God has given parents to care for their children, parents should not just lay down and let medical professionals do what they want with children. Parents should expect to be informed, and legally a doctor must have parental permission. This authoritarian claim of “medical abuse” is the medical establishment’s free pass to steal away rights from parents. Parents must actively and forcefully guard against such unfounded claims.
Lou and Linda Pelletier are a wonderful example of strength for other parents. They stood up for their daughter and the diagnosis they believed to be accurate. This diagnosis, by the way, was proven to be accurate as Justina’s health deteriorated significantly for the 16 months she was a ward of the state and was left untreated for mitochondrial disease. How sad that this young girl entered Boston Children’s walking and dancing and left in a wheelchair.
The Pelletier’s example warns us, though, that standing up to those in the medical establishment can cause heartache, financial hardship, emotional trauma, and countless other unseen costs. I pray Lou and Linda Pelletier have the strength to continue fighting for “Justina’s Law,” which will help prevent this type of tragedy from occurring to other families. Until then, parents must beware and guard their children, even in the doctor’s office, of all places.