Mark, a California minister, says the day he was first shut out of all treatment discussions regarding his mentally ill teenage son "was the first time we really started to feel hopeless." Credit: Jenny Gold/Kaiser Health News
This story raises important ethical issues about how parents and family members can support a loved one experiencing mental illness. If you've had to deal with this issue personally or as a clinician, what do you recommend to frustrated family members?
The horrifying mass shooting in Isla Vista, Calif., last month brought up many questions. What could parents have done to prevent the tragedy? And what did they actually know about their son's mental illness?
A privacy law called the Health Insurance Portability and Accountability Act was created in part to protect patients' information. But the law, called HIPAA for short, also presents a dilemma for families of people with serious mental illnesses like schizophrenia. HIPAA restricts what family members can find out directly, leaving them to wonder how they can help a loved one who won't share treatment details.
Mark, an ordained minister in Moraga, Calif., struggles with the problem almost every day. His son Scott, 24, has schizoaffective disorder and has been hospitalized a dozen times for the hallucinations, mania and depression that it brings. (Kaiser Health News and NPR aren't publishing the family's last name to protect Scott's identity.)
What little information Mark and his wife get about Scott's treatment comes from their insurance company, since Scott is still on their plan. The family hasn't spoken to any of Scott's doctors since that first hospitalization, even though one of their most pressing questions is whether it's even safe for Scott to come back home. Mark still has scars on his head from an altercation with Scott the last time he was home.
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 caregiver, protector, provider, whatever — I've watched this kid grow up — and yet I'm out of the circle?"
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