There has been a story out there in the news media for close to a year now about a young girl who was seized by the state children’s protective services in Massachusetts after a medical disagreement between parents, doctors, and two different hospitals. The Justina Pelletier story.
As with any story that has been filtered, and the details are not all there – citing privacy and confidentiality issues. But the details that are available tell a chilling story about abuse of power. A child with a condition that is not well-known or understood, a disease that has no standard treatment plan or cure, and a lack of consultation with her treating physicians, can be taken from her parents, taken off all of her current medications and treatments, and kept in the psychiatric unit of a hospital with little to no visitation with her family or friends, and the parents accused of medical child abuse.
My visceral reaction is disgust at the doctors and staff who did this to this young girl and her family. I am astounded that there will be no repercussions to any of them for the trauma they have caused this young girl and her family. But my instinct kicks in, and despite the questions I have about what these doctors were thinking, and how could they do this, I start to think of our own situation.
Rare. Unknown. No standard treatment. Many specialists involved. Many medical institutions involved.
I wonder if this could have happened to our family when we were searching for a confirmed diagnosis for Kate.
Could this happen to other children who are rare, without a confirmed diagnosis, medically complex, medically fragile, or perhaps to parents who are not savvy about how to ‘behave’ within the system.
I am a strong advocate for Kate. I feel that I am part of her medical care team and have an equal voice at the decision-making table. I voice my opinion. I appreciate the doctors opinions, but I also take into account my own knowledge and expertise as the expert on Kate. That is patient engagement and patient and family centred care right? Am I naive about the rights that I have to make decisions as her parent?
What makes the Justina Pelletier case hit home for me is that Justina has mitochondrial disease. A disease that few know about, where little research is done, where donation dollars and support don’t flow, where the medical community is still learning, and where there are few experts.
How does something like this happen?
How could the system change so it doesn’t happen again?