Privacy Law Frustrates Parents with Mentally Ill Adult Children

Mark, a minister who lives in the Bay Area, has not been able to communicate with doctors about his son, Scott, since Scott became an adult (Jenny Gold/ KHN).

Mark, a minister who lives in the Bay Area, has not been able to communicate with doctors about his son, Scott, since Scott became an adult (Jenny Gold/ KHN).

By Jenny Gold, Kaiser Health News

The horrifying mass shooting in Isla Vista nearly two weeks ago brought up many questions: What — if anything — could parents have done to prevent the tragedy? And what did they actually know about their son’s mental illness?

‘We were shut out of the conversation.’    

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, about 20 miles east of San Francisco, 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 KQED aren’t publishing the family’s last name to protect Scott’s identity.)

Mark first noticed a change in his son just before his high school graduation. “There was a deep aggressiveness that started to emerge,” he recalls. “We just thought, well, it was frustration with life or circumstances, things weren’t going well in school.”

And it got worse. In the middle of a standoff one day, Scott threw a small table at his mother. Scott was taken to a psychiatric hospital by the police. He was 18. Because he was still in high school, he was treated as a minor by the hospital. Mark and his wife met with Scott’s doctors and set up a treatment plan.

“We saw, OK, this is kind of the way it works,” says Mark, adding, “That was pretty much the last time we had that opportunity” to talk to any medical professionals about Scott.

The next time their son was hospitalized, he was out of high school. The doctors told the family that because of HIPAA, they couldn’t be part of the treatment discussion unless Scott granted permission, which he refused to do.

“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. 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?”

That’s something E. Fuller Torrey, a psychiatrist and founder of the Treatment Advocacy Center, a mental health advocacy group, hears all the time. 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,” he 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 stick with a treatment plan, and can minimize the need for readmission to the hospital. Torrey supports a bill in Congress that would alter HIPAA to make it easier for families to access information about patients with severe illness. That’s particularly important for parents who “still continue to provide the primary care for many, many of the people who are severely mentally ill,” he says.

Opponents of the bill, including Jennifer Mathis, director of programs at the Bazelon Center for Mental Health Law, says that weakening privacy protections would make patients less willing to seek treatment. “They need to know that it’s going to be kept confidential,” Mathis says.

There are already exceptions in HIPAA that allow providers to talk to family or caregivers when the patient is a danger to themselves or others, she says. But those exceptions often are not used. Sometimes, Mathis says, providers may be “hiding behind HIPAA,” so that they don’t have to deal with families, or because they are afraid of being sued.

Others problems include plain misunderstanding about what the law requires and allows.

But even for doctors who thoroughly understand HIPAA, the safety exemption can be too narrow. “The vast majority of situations families find themselves in are not life and death,” says Carolyn Wolf, who directs the mental health practice at New York law firm Abrams Fensterman.

The exemptions and possible changes to the law don’t help Pastor Mark much. “It has been a very arduous journey, and it continues,” he says. “It’s had its moments of extreme anguish, a lot of tears shed, a lot of prayers prayed, a lot of just absolute puzzlement at life itself.”

For now, as a father and as a minister, he’s relying on faith.

Kaiser Health News (KHN) is a nonprofit news organization covering health care policy and politics. It is an editorially independent program of the Kaiser Family Foundation.

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  • guest

    HIPPA doesn’t protect the patient from anything and is misused in mental illness. I have had the same experience with my adult child, even when he has tried to take his life, the doctors refused to talk to my husband or me. They have no problem accepting our insurance payment, yet they can’t talk to us. Maybe if more doctors had children who were mentally ill and their children shut them out, perhaps then they would understand how a family completely diminishes and falls apart due to inept medical communication and often over prescribed drugs that parents end up paying for. The entire mental health system needs to be overhauled.

    • Bright Blue

      The doctors may very well understand but cannot break the law.

  • L Anich

    Thanks KQED & Kaiser for covering this issue, and thanks all to parents who speak up about HIPAA. It happens that my husband & I were able to intervene when our daughter had a major crisis. How I wish every parent had that chance! But here’s the kicker for parents: after the ambulance comes to the aid of your 18-year old you’ve gotta scramble and connive to find out where she is in within the short span that profit-driven health care allots to recovery from acute psychiatric disorders. The more debilitating your adult son or daughter’s illness is, the less the law is on your side. What a perverse way to treat parents living their worst nightmare! Three years have passed since our daughter’s first hospitalization and she still struggles to improve her life. But some days I see how much opportunity there is to alleviate the suffering of mental illness, ironically, because stigma and fear are SO strong that we’ve not yet made the same concerted effort that has brought a measure of hope to those afflicted with AIDS and cancer. Take it from a mom whose experiences permit no complacency: reform of the HIPAA law is a golden opportunity.

  • bill gates

    Disgusting. An overwhelming majority of mentally ill individuals are perfectly capable of managing their medical information. The story focusing on a fringe case of someone who is regularly out of control and violent is not only giving an inaccurate impression of what we are like, but adding to the stigma that the mentally ill are dangerous and something to be afraid of.

    Most mental illnesses, even severe ones, are cyclical in nature. I have bipolar disorder and the majority of the time I am in a stable, sober state of mind. I am perfectly capable of making my own medical decisions – especially in regards to who can see my information. And I am not an isolated case.

    These types of arguments treat people with mental illnesses as incapable of self-care and make me sick.

  • Bright Blue

    I agree with bill gates, here. Just because one has a mental illness, doesn’t deprive them of their right to privacy. And, while it appears to make sense for an 18 or 19 year old, what about a 40 yr old with a mental illness? Do their parents still get to override their request for privacy? How serious does the mental illness need to be? Many people with schizophrenia live fairly everyday lives and are perfectly capable of deciding who they’d like knowing their information. So, it would hardly be sensible to take away their rights? So, at what point and for what reasons do we decide that privacy rights should be taken away? Perhaps there should be an allowance for a review by a court for access to information by family members for those who are so unable to care for themselves that they need family involvement. Or maybe parents should be allowed to be involved through a later age like 24? I think the “parent” angle is also odd. Should we not consider siblings or children in this as they are often also caregivers?

  • Bright Blue

    I also wonder about Dr Torrey’s point about HIPPA being written for diseases like cancer. Even cancer can impact the individuals ability to think clearly and many physical diseases can lead to loss of judgement or rise in paranoia or problems with self-care. So, were those writing HIPPA unaware that someone with dementia or problems with judgement after a stroke may still refuse to share information?

  • Dave from Capitola

    Dave from Capitola here…….As a parent who has been dealing with a 35 year son with Bi-polar disorder I fully understand the problem……Our son was diagnosed with this illness when he was about 20….Since then he has been in and out of hospitals at least 50 plus times……he has been 5150 dozens of times and has been conserved and forced into treatment…….The Doctors call us and ask questions but refuse to answer any of ours……When he is released from the Hospitals they frequently call and ask us what we will do for him……If we refuse to let him come to our home the Hospitals will give him $5 and a BART ticket to Berkeley and Dump him onto the street…..The article states that Jennifer Mathis opposes any changes to HIPPA…..Obviously she has never been a parent of an Adult Mentally ill child…..And even though she is employed by the Bazelon Center for Mental Health Law, she sure sounds like a lobbyist………The law does not work to the illness…..it only protects the Doctors and Hospitals…….Parents and siblings are left in the blind and are frequently put into situations that are frustrating and sometimes dangerous…….Mental Illness is the one illness that is being brushed under the carpet and ignored by society even though it is out in the open and in full site of everybody……