Monday, July 1, 2013

Parents Denied Information on Their Children's Mental Health Care

Imagine being a parent of a child with serious mental illness. You’re anxious about your child’s well-being. You’re concerned about his future. You feel stressed out having to cope with his mood swings, meltdowns, tantrums, antisocial or violent behavior, etc. You’re disappointed that your child’s future isn't as bright as you once imagined. On top of these sources of anguish, what you don’t need is a mental health system that denies you information on your child’s treatment. This is what many American parents of mentally ill people are faced with, according to a recent Wall Street Journal article.

The article describes several parents of violent mentally ill men. Suzanne Lankford's adult son allegedly knocked her out with a blow to a head, participated in an armed robbery of a mall, and assaulted a nurse and law enforcement officer. He has exhibited paranoid symptoms, phoning in reports of people stalking him, and barricading himself inside a room to ward off imaginary assassins. Ms. Lankford is unable to get any information on her son’s treatment, due to privacy concerns.

Pat Milan's adult son, diagnosed with paranoid schizophrenia, had cut his throat and dug his own grave in his backyard. His son was admitted to a treatment facility in 2011, but released eight days later despite protests from his father. Professionals at the treatment facility noted homicidal and suicidal ideation, and that he had a suicide plan. Pat Milan was denied access to these treatment records. After being brought home, Mr. Milan’s son attached a shotgun shell to a steel pipe, put the combination in his mouth, and exploded the shell via a fuse (the article didn't say if he died).

Being denied access to treatment information isn't only a problem for parents of adult children. Pennsylvania has a law that allows a child as young as 14 to prevent his parents from receiving information about his care. Quoting Rep. Tim Murphy (R, Pa.), "So you have a seventh- or eighth-grader making decisions on their mental illness. I wouldn't let a 14-year-old decide much of anything."

What is the reasoning behind this denial of access to information about immediate family members? Ira Burnim of the David L. Bazelon Center for Mental Health Law, a Washington, D.C., advocacy group, says that confidentiality is vital to ensure that patients seek treatment. According to Burnim, "the current system discourages patients" from seeking care because of the stigma of mental illness. HIPAA is the legal framework that restricts access to protected mental health care information.

The article also talks about the obstacles to involuntary commit mentally ill individuals to treatment. Five states don’t allow involuntary mental health treatment at all, Nevada has a bill pending that would allow it in some circumstances, and the other 44 states have stringent requirements for involuntary treatment.

E. Fuller Torrey, founder of the Treatment Advocacy Center, estimates that 216,000 of the homeless population, or about 1/3, are adults with severe untreated mental illness. He also estimates that there are 400,000 untreated mentally ill adults in jails and prisons.

I think that immediate family members should by default have access to health information. Parents should be given access to their adult children’s mental health treatment records. This access should only be taken away if the child specifically requests it. There’s no reason to deny parents information. In most cases, parents are trying to do their best for their children. They need to be informed to either make decisions on behalf of their children, or assist their children in making the correct decision. Mental illness impairs judgment and rational decision making. People with mental illness need all the help they can get from their family.

I have a personal example to relate about this. When I was a freshman in college, I had some serious mental health issues. I saw someone at the student health center, who referred me to an outside therapist. To pay for this therapy I would have had to tell my parents about it, since I needed their financial assistance. I didn't want them to know about my problems, so I decided not to pursue treatment. I have no idea whether or not therapy would have been helpful at the time. But the rational decision would have been to try treatment, even if it meant that my parents would know that I was having problems. The problems eventually got worse, and my parents found out about them anyway.

Involuntary treatment is another issue. The article combines mental health information and involuntary treatment, but I see them as separate. I used to be in favor of involuntary treatment for the mentally ill. That was when I believed that drug treatment was effective and safe. I don’t believe that any more, after reading Anatomy of an Epidemic (which I review here). Drug treatment has never been proven to be long-term effective for psychiatric disorders. Depending on the drug, side effects can be severe and debilitating. Antipsychotics have some of the worst side effect profiles, with the older ones causing movement disorders like tardive dyskinesia, and the newer ones causing metabolic disorders like weight gain and type-2 diabetes. The people most likely to be involuntary committed are those with schizophrenia and other psychotic disorders. They are almost guaranteed to be prescribed antipsychotic drugs. I don’t think that people should be coerced to take drugs that have never been shown to improve their long-term functioning, and which have such serious side effects.

In conclusion, let’s allow parents to be informed about their adult children’s mental health treatment, but let’s not allow parents to involuntarily commit their children to forced drugging and hospitalization.


  1. Harry,
    I realize on seeing your latest post that I forgot to repost your blog from April on Congress taking action. What actually happened was that I forgot to check back to see if you gave me permission. Anyway, it's up now. And thanks for a good opinion piece.

  2. This is so sad but for me parents should know what's best for their children.

  3. Once mentally ill, a child for life eh?