When her adult son was diagnosed with a schizoaffective disorder a few years ago, Laurie became his sole caretaker.
This reporting is made possible by the Northern Michigan Journalism Project, led by Interlochen Public Radio and Bridge Michigan, and funded by Press Forward Northern Michigan.
But because her son, Steven, is an adult in his early 40s, Laurie is often left out when he receives emergency care at different hospitals. He’s been released into the cold without proper clothing and released with illnesses Laurie didn’t know how to care for because the hospital refused to tell her what was going on.
While a signed disclosure form would give her access, such things rarely happen in the moment.
“If I go in and ask Munson (Medical Center), ‘Where is he?’, they won't tell me,” said Laurie, a 74-year-old retiree. “He came out of the hospital once with extreme diarrhea, extreme thirst, and he said his heart hurt. If you look at some of those medications, it’s a side effect .... When I call, they won't talk to me. They won't tell me what he's been on.”
That’s because of the Health Insurance Portability and Accountability Act, or HIPAA, passed in 1996 as the first set of national standards for the protection of health information. By restricting hospitals and insurers from sharing records without permission, advocates say the law helps maintain patient trust and ensures individuals have control over their medical care.
“She said, ‘We're going to release him because he's not a threat to himself or others.' I said, ‘Do you know why he's there?’ And she said, ‘No.’”LAURIE | northern Michigan mother and caretaker
But those protections can sometimes get in the way of care, some patient advocates say, as wary doctors withhold information out of fear of being sued.
Laurie, who agreed to tell her story if only her first name is used to protect Steven’s privacy, is now pursuing temporary medical guardianship, which would allow providers to speak with her directly — a step only recently made possible because of Steven’s frequency in and out of the system.
Munson’s executive director of behavioral health, Terri LaCroix Kelty, said she couldn’t comment on specific cases but noted providers have to be cautious — especially with mental illness.
“I want to be careful due to stigma that we don't equate mental illness with legal incompetency — those are two very separate things,” LaCroix Kelty said. “If we have a situation where we feel a person is not able to make informed consent, we reach out to our legal department and they help guide us and bring in any expert that's needed to really help make a decision. It's a pretty quick process, you know, that we can invoke if we need it.”
When individual crises become public concerns
It’s not just the patient's wellbeing at issue, Laurie said, but also the potential dangers to the general public when caretakers are left out of the conversation.
The last time Steven was hospitalized, police brought him to Munson’s emergency room after he choked his sister on a city bus.
That time, a social worker at Munson called Laurie.
“She said, ‘We're going to release him because he's not a threat to himself or others,’” Laurie said. “I said, ‘Do you know why he's there?’ And she said, ‘No.’”
One local mental health expert said such situations have recently become more common in northern Michigan.
“They can miss the psychosis if they don't go deep enough,” said Clark. “I have a friend who has a son with severe mental illness who was interviewed by a provider who was pretty convinced that he was doing OK. And the dad said, ‘Ask him about his toes.’”Jerri Clark, resource and advocacy manager at the Treatment Advocacy Center
“I think at one point there were a few weeks I had seven moms call with similar situations,” said Jessie Perez who is a behavioral health specialist at the National Alliance of Mental Illness Grand Traverse. “We need HIPAA. We absolutely do. But, in certain circumstances — especially mental health — it's a barrier for that person to get care.”
This summer, Michigan ranked 11th in the nation for the number of calls to the 988 national mental health crisis line. Each year, about 457,000 adults in Michigan experience a serious mental illness, and 1 in 9 adolescents report having serious thoughts of suicide.
Mental health care is improving in northern Michigan, advocates say. This year, a new mental health crisis center set up shop and the local United Way began offering children and their families free mental health support from licensed therapists.
But Perez said local systems still don’t talk to each other enough.
“I've had families write every (incident) date … long pages and pages,” said Perez. “They want that to go with the person — to the hospital or the ER or wherever they're going — so that a doctor or some provider can look at that. And I don't think it always makes it where it's supposed to go.”
Talking to families
It’s in crises that it’s especially important to talk with family members, said Jerri Clark, resource and advocacy manager at the Treatment Advocacy Center.
“They can miss the psychosis if they don't go deep enough,” said Clark. “I have a friend who has a son with severe mental illness who was interviewed by a provider who was pretty convinced that he was doing OK. And the dad said, ‘Ask him about his toes.’”
The family member, Clark said, was able to ask the right questions to uncover a delusion.
“He started to explain how his pinky toe was connected to aliens,” said Clark. “The provider was never going to get there on their own. They needed what the family had to share.”
Caretakers, Clark said, don’t need to be excluded from conversations.
“Federal guidance very clearly explains that health care providers may communicate with a patient's family members, friends or other persons the patient has involved in his or her care as long as the patient does not object,” said Clark. “That is really important, because what that says is that there does not have to be a signed release of information in order for the basic exchange of information.”
Clark said the fear of violating HIPAA — which can result in fines up to $1.5 million per year, mandatory corrective action plans, criminal charges and even jail time — has made providers overly cautious.
While several million records a year are compromised by unauthorized access or disclosure, most records are compromised by hacking, according to the HIPPA Guide, a health care privacy advocacy group.
“Provider training is loaded with fear and the strict non-disclosure policies of many health care providers are not necessary or required under HIPAA,” said Clark. “I think there's been a lot of misinformation about HIPAA and there's some very poor training around HIPAA. It's easier for providers to say, ‘I can't talk to you,’ and just not speak to families at all, than it is for them to actually (understand) HIPAA and what absolutely is allowed in the interest of good patient care.”
Better provider training and a shift away from fear-based HIPAA interpretations, said Clark, could help families stay informed without sacrificing privacy.
Steven is now stable after receiving long-acting injectable medicine and living back with Laurie.
“Had (Steven) had proper care right away, it would have avoided police, it would have avoided hospitalizations,” said Laurie. “He's very fortunate that he lives with me. There are a lot of mentally ill that have no one.”
