“We were shut out of the conversation,” says Mark. “And I think that was the first time we really started feeling hopeless. As long as we could feel we were in a conversation with them, we had a sense of hope. All of a sudden there was a wall that went up and that was gone.”
What little information Mark and his wife get about Scott’s treatment comes from their insurance company, since Scott is still on their plan. Mark still has scars on his head from a recent altercation with Scott.
Mark is a gentle and deliberate man with round glasses and a rosy complexion. His tidy suburban home is filled with photos of his children and piles of books about faith. But, he wonders, “why am I as the one who is a primary care giver, protector, provider, whatever-- I’ve watched this kid grow up, and yet I’m out of the circle? I can’t be there to be of help.”
“I hear this all the time from families who are very frustrated,” says Dr. E Fuller Torrey, a psychiatrist and founder of the Treatment Advocacy Center, a nonprofit that works to tighten treatment laws for mental illness. He says the problem is that HIPAA wasn’t written with mental illness in mind.
“When someone has cancer, you can make the assumption that their brain is working normally so that they can make an informed decision as to whether or not they want their loved ones to know exactly what the details of the cancer is,” Torrey says. “You can’t make that assumption about people with schizophrenia or bipolar disorder.”
Often, he says, sharing information with the family can be crucial to a patient’s care, helping to ensure that they stay with a treatment plan and prevent readmission to the hospital. This is particularly important for mothers and fathers, he continues, who “still continue to provide the primary care for many, many of the people who are severely mentally ill.” Torrey supports a bill in Congress, sponsored by Rep. Tim Murphy (R-Penn.), that would alter HIPAA to make it easier for families to access information for patients with severe illness.
Tue, Jun 03 2014