Joann: Encounters with the Healthcare System

During Jacob’s first hospital admission, Joann told mental health staff about their family history with mental illness—a grandmother with schizophrenia, an uncle with bipolar illness, and a grandfather with depression. Jacob defensively protested, “I’m nothing like my uncle!” The staff explained Jacob needed a 72-hour hold at the hospital.

Note: A 72-hour hold is an emergency hold used to keep a person hospitalized who is believed to have a mental illness that places them at risk for harming self or others. Depending on state laws the person may be admitted to the hospital for a minimum of 72 hours for evaluation.

They’re experienced. They’re coming from a mental health standpoint. Me—I’m going from a physical standpoint because I knew no better and it just came out of the blue to me. It took me by surprise. . . They have people evaluating—kind of watching. In hindsight I can see how that helps them evaluate and then observe more. But I didn’t know what was happening then. What’s happening? Just let me know. I see now that there’s a reason for all these things. But I didn’t know that then.

Joann soon encountered the HIPAA barrier in her efforts to find out information about her son.

Note: HIPAA, the Health Insurance Portability and Accountability Act of 1996, established privacy rules about health information in the United States. HIPAA rules protect communication of health information.

Because Jacob is over 18, health organizations and professionals cannot give his parents health information unless he gives permission for the organization to do so. For Joann, HIPAA rules were “punches in the gut.”

This is my child. He’s under our insurance. Why can’t we just find out this information? Then finally getting in to see him and going through all of those emotions and then him holding it against me. I’m the one that brought him to the hospital. That was my idea, so it’s my fault. Then the guilt that you hold with that and then processing that. There are so many different stages you go through in such a short amount of time. You can’t do it all at once. You take a step back and you’re going, wow, I have just done all this in a week’s time. My son went to the hospital. I’m bawling uncontrollably. I’m looking for resources. I go to a support group. I’m learning more. My son hates me and we can’t get any information from the hospital. What am I doing wrong? I’m the mom. I’m supposed to fix it. I can’t fix it.

Joann wished staff had informed her about HIPAA rules during Jacob’s intake at the first hospitalization. She discovered she could share information with staff but they could not share information about Jacob unless he signed a release of information.

She wondered if health care staff and police respond to Jacob’s behavior negatively because he is African American; Joann is white. Mental health staff suggested that Jacob appears threatening because he is a large, tall black man. Police have stopped all of her sons while they were driving. She wonders how responses to her son’s race and physical status affect his mental health. When Jacob experiences manic symptoms, his interactions may promote suspicion, since his facial expressions during manic episodes come across as “mean.”

Joann pointed out that mental health staff and police have been helpful. Although Jacob initially refused to take her phone calls during his first hospitalization, staff encouraged her to keep calling because the next time he might be willing to talk. One time a police officer followed Jacob’s car when he sped off from home. Jacob had jumped in his car and yelled, “All I want to do is to be loved.” Joann yelled back, “Jacob, I do love you.” She later heard from Jacob’s brothers that a police officer who was close by followed Jacob and spoke with him at the local park. The police officer told Jacob, “Well, your mother loves you” and did not give him a ticket.