My sister might still be alive

My sister, who was given a working diagnosis of schizophrenia this past summer after years of psychotic illness, recently took her own life. My father, who had just begun developing memory problems, and I had managed to have her involuntarily committed in Pennsylvania this past summer.

She spent about a month in a suburban hospital before being transferred to a long-term unit at a larger psychiatric hospital, where she stayed for about two months.

She had also been involuntarily hospitalized — deemed gravely disabled and at risk for suicide — for about three weeks the previous fall in California.

No one would talk

During her time in the long-term unit and after weeks on mandated antipsychotic medication, my sister showed signs of improvement. She’d gained weight — she’d been down to 99 pounds in July — and could hold a conversation.

Though we don’t live nearby, I and other family members visited her in the hospital numerous times, and I spoke frequently with nursing staff.

My requests to talk with a hospital psychiatrist went unanswered, however, and only once did the social worker speak with me. At some point, my sister had the wherewithal, I believe, to remove consent for me to be kept informed about her treatment.

Though she’d earlier asked me if I’d participate in a conversation with medical professionals regarding discharge planning (careful discharge planning is widely understood to be critical for people with severe mental illnesses), I was never invited to such a conversation.

I believe hospital staff spoke with my father prior to my sister’s discharge, but since my sister didn’t always tell the truth and my father’s memory issues complicated things, I couldn’t be sure. I wanted to know what treatment my sister would receive once discharged.

I wanted to make sure hospital staff understood that my father’s memory problems were increasing. I wanted to let them know that my sister would likely have access to guns when she left the hospital.

And no one called

But despite my calling her several times, the social worker never called me back, and my sister was discharged. Did the hospital believe that returning a family member’s call might violate the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule, or were they just busy?

Now, I’m grieving my sister’s death by pills, though police said when they found her she had three guns next to her head, and I’m angry about the failures of mental health care in the United States.

I know my sister had a right to privacy, and a right to take her own life, but our mental health care system made it easy for her to die alone in a basement, no one aware for days of her body hidden beneath the stairs. There, my sister had a folder of printed-out prayers in easy reach, a small duffel bag of pills, and those three guns, in case the pills didn’t work.

According to the Department of Health and Human Services Office for Civil Rights, “HIPAA in no way prevents health care providers from listening to family members or other caregivers who may have concerns about the health and well-being of the patient, so the health care provider can factor that information into the patient’s care.”

They needed a better plan

I imagine that mental health care workers are overworked and possibly overwhelmed with responsibilities.

Economic pressures on our healthcare system often cause health professionals, institutions, and communities to provide less care than research indicates is necessary.

Had someone called me back, though, had someone simply listened to my concerns without sharing any of my sister’s medical information, perhaps the hospital would have come up with a better plan than releasing my sister when and how they did. Maybe my sister would still be alive.

Please, hospitals, do more to help psychiatric patients and their families. Please listen to us when you can.