Same law, divergent practice. Why is that?

files-and-foldersLast week a friend described a recent visit to her home by an emergency medical team. Her 20 year old daughter, who lives at home, has a longstanding heart condition. Her treatment wasn’t working, she needed emergency medical help and a decision about inpatient care. Upon the arrival of the emergency team, they consulted with my friend, gathering information about when her daughter had eaten, if she’d taken her medication, what symptoms she’d shown and so on. They considered this good medical practice and so did she. In fact, so did her daughter, maybe in part because she’d always been told that this was the best way to make sure she got the most effective care.

But that’s not the way it goes in the mental health world.

When another friend, this one with a 19 year old son who has bipolar disorder, called the mobile crisis (mental health) team, her experience was vastly different. They arrived at her house and told her, “We can’t talk to you.“ They refused to hear that her son had discontinued his medications the week before or that he was barely sleeping or even that he was threatening suicide. Instead, they interviewed her son, who argued that he was fine. After they left, her son slammed out of the house and was picked up by the police a few hours later. “Why didn’t you tell them what was going on with me?” he asked his mother. “None of this would have happened.”

There is a federal law in this land called HIPAA or the Health Insurance Portability and Accountability Act of 1996. HIPAA protects the privacy of our health information in all its forms (verbal, written, electronic) and mandates that providers of care, payers of care (insurers) and health care clearinghouses comply with it. HIPAA also gives us all rights – the right to see, access and correct our medical records and to decide to share or not share our health information. Overall, HIPAA is a important law that ensures our privacy. Before it was enacted, some doctors and pharmacies sold patient lists to pharmaceutical companies. In Florida one disgruntled public health worker sent the names of more than 4,000 people who tested positive for HIV to two newspapers.

But HIPAA seems to play out differently for young people with mental health needs and those with medical conditions. That difference in practice has an enormous impact on families, especially those where young people are living at home.

Today, record numbers of young adults are living at home with their parents. That includes young people with mental health needs like my friend whose son is 19. Data from 2012 shows that more than 32% of young adults 18 to 34 are living at home. A lot has been written about how young people (18 to 29) are generally taking longer to grow up and neuroscience tells us the part of the brain which affects planning and decision-making is not mature until the mid-20s. What’s also important is that young adults have a strong instinct to push against authority and forge their own way. What we end up with is a perfect storm consisting of the need to make good treatment choices, a still developing brain and a desire to push back against anyone telling them what to do.

Now add a discussion of rights into the mix. Once young people become 18 – and sometimes before that – many conversations about mental health care seems to begin with a discussion of their rights. They often hear they have the right to keep information private, refrain from consulting parents or other family members about health decisions and the right to refuse treatment. Unlike my friend’s daughter with a heart condition, they usually don’t hear that involving their parents and others can help get them better care. I used to think the goal was to make good medical and mental health decisions. Sometimes you would think that that was not true; that instead the goal is to make decisions bereft of the input of family and friends.

When my son was 19, he needed an adult primary care physician, a transition many parents dread. The one person who has known your child since infancy is replaced by stranger who you hope will care just as much. I went on the web, found 3 doctors that met his criteria – male and under 40 – and I called each one (with my phone on speakerphone) to see who was comfortable with serious mental illness. We debated and my son chose one and made an appointment. After some discussion we agreed that I would be there to share the family history, then he would finish the appointment. It worked out well. When his mental health problems are acute, my son needs someone to help figure out what might work since his critical thinking skills go out the window. Sure, the line can be a thin one between making the decision for him and laying out the options. But parenting teens and young adults is often about walking a fine line. Parents get pretty good at it.

Last year the U.S. Department of Health and Human Services clarified that HIPAA does not cut off communication between health care providers and the families and friends of patients. In their online guide it is clear that health care providers do not have to unnecessarily withhold a patient’s health information from their family or others involved in their care. The caveat is that this guideline applies only if the patient (read young person) does not object. When we talk about communication between providers and a young adult’s parents, is our starting point going to be a recital of your right to decide by yourself (or refuse treatment) or is it a discussion of the way to get the best care and support?

Knowing when to stand alone on your own and when to accept help comes with experience. We’ve all let someone else talk us into something we weren’t comfortable with or simply confirm what we already knew. We’ve also had the experience of feeling like you know just the right thing to choose without help. We usually have a default that works for us – some combination of asking others to help us or pulling up the drawbridge until we are ready to listen. For decisions where the stakes are high, such as making a choice about crucial care, most of us consult with those who know us best. HIPAA isn’t supposed to prevent this. Why can’t mental health providers see that?

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15 Responses to Same law, divergent practice. Why is that?

  1. Marcy Ravech says:

    I hear what you are saying Lisa but we have actually had this same thing happen with medical providers. Working in the behavioral health field I do see that behavioral health providers often misunderstand HIPAA and seem to be more resistant about sharing information without a written consent even with other members of the patient’s treatment team (which is allowed). Our solution: I keep a written consent on hand signed by my 20-year-old son that permits all health and behavioral health providers to talk with me, and me with them.

  2. Lisa says:

    As someone who has worked in the mental health field for 32 years, as well as having family members with mental health challenges, I have heard the line “we can’t talk to you” from crisis providers. My response is – You may not be able to talk to me, but I can talk to you and tell you what I have seen is happening for this person. I have never had any crisis professional refuse to listen. They may not have limitations placed on them by HIPPA, but you as a family member do not.

    • Lisa says:

      Sorry – the last line should be – They may HAVE limitations placed on them by HIPPA, but you as a family member do not.

    • Barbara Worsley says:

      I have to say that my experience with our local crisis team at home or in the ER has been nothing but wonderful. I am the Mother of a young adult,, with schizo- affective disorder-the past 18 months on the “merry-go-round” of hospitalizations, no one has ever “not listened” to my input . I am often asked what has been happening, especially when the delusions are in the way of his straight thinking.And yes i have said “I can talk and you can listen”!!
      What a shame that HIPPA can get in the way of providing useful information for the team to hear?

  3. Lisa smith says:

    The prosecution in the murder trial in the American Sniper case is blaming the mother for things she should have said or not said to the victim before this horrible tragedy occurred. Where is the responsibility of his medical team, the physician who diagnosed the young man with schizophrenia. Was there a safety plan in effect before his Discharge and was the mother involved in his care? I do not know.
    Parents of young adults with mental health disabilities are not looked upon as helping/supporting your child but you must caused this in some way or the young disabled adult has full responsibility in their actions and behaviors (if they take their medication or not.)
    STIGMA exists with in the medical and mental health professionals- the people who should understand. Consent is a must if to be involved with care with a young adult.
    Views and feelings are improving but it is going to take a lot of thought, discussion and research.

  4. Phil Hadley says:

    Marcy is doing the right thing – have a release form in your pocket. If the provider- MD,agency -will not respect a release – send a written statement or email of your concerns. Keep a paper trail.
    The intent of HIPPA is to follow the state and federal laws of privacy — which has roots in the Constotution. HIPPA does give wide leaway to profesionals — they can decide to talk. They do in the heart case example. There is professional stigma! And they have lawlers and protect themselves from suits. Demand your rights to protect your person from harm by misunderstood HIPPA guidlines.

    • Susan Fendell says:

      The problem highlighted in the blog is not HIPAA; it’s a misinterpretation by providers. In the example in the blog, the clinicians could not provide information to the mother, but health care providers can always listen to information provided by caretakers or any other individual. Given the stigma associated with psychiatric illness, privacy is extremely important. Without it, many individuals would avoid treatment.

  5. Barbara Lamonde says:

    I am dealing with this right now and have been for a while. My child is 16 and since she turned 14 I have been getting the speech that she has to accept services and if she doesn’t want them she doesn’t have to take them. Even after a suicide attempt they told her if she didn’t want to be placed in CBAT she didn’t have to go. Every time we meet a new provider or have a care plan meeting, even when mobile crisis is called, they go over her right not to accept treatment or share info with us (her parents). They all agree that she has some serious issues and that her safety and the safety of our family is a concern, but if she doesn’t want treatment nothing we say will change that. I don’t know many teens (with or without mental illness) who WANT to do what they should be doing or need to do when they can refuse and do what they want. Now that she is almost 17 we are getting the speech that she is getting older and as soon as she is 18 we can’t have any say at all in her treatment, even though they agree she needs treatment and she has told them she threatens us all the time. Just because these kids physically turn 18 does not mean they are emotionally or mentally ready to make all their decisions. I have a almost 17 year old who wont walk into a store to get milk or bread on her own, she wont cook her own meal because she says she can’t do it by her self, but she has (and is reminded all the time) the right to refuse treatment and keep information from her family, which may end up putting her life and ours at risk. The times she needs treatment the most are the times she also refuses it.

  6. Lynn says:

    Sort of same scenario that Lisa initially wrote about. A family went away and asked me to
    look in on their Mother who has dementia but was not hospitalized for that reason but for a medical issue. I called spoke with the doctor and nurses about her care. Had no problems discussing issues or getting info from medical providers. My son is brought to a hospital and I find out and call. I get your son is over 18 we can’t even tell you if he is here. But if he is we will tell him to call you. Nurse hangs up on me. I try to give info when I called back 3 more times. Thankfully my son finally said to screener please call my mother she can tell you more than I can. The screener finally listened 7 hrs later.

  7. Patrick Bailey says:

    I agree with Barbara Worsley. I too work with a wonderful crisis team in a State with strict guidelines on privacy that do allow talking to caregivers, parents, teachers, etc. They are called collaterals. It only makes sense in a crisis situation for a clinician to be allowed to collect as much information as they can to make an informed decision for a proper diagnosis. It’s a shame that some states and agencies have taken the idea of HIPPA to the level I’m reading about.

  8. Carrie says:

    Parents of children with disabilities of any kind, medical, emotional or behavioral should be allowed to intervene. It is proven that even if typically developing children the brain is not fully functional until age 24 leading to impulsive actions and poor decisions.

  9. Lisa,
    Thank you for writing this post, and everyone else for the thoughtful responses. We are just beginning to face some of these looming realities. Our son is closing in on 15, and as he gets older his psychiatric challenges–which have been around since he was 4!–have gotten ever more complex and difficult for us to triage. (Right now he is residential but home most weekends–which we LOVE but also worry about.) Looking ahead is a pretty scary, for all kinds of reasons–including the ones around medical and mental health care discussed above. I always think the best thing we, as a community, can do is keep the conversation going–publicly, privately, in whatever ways feel right. I’m so glad I found this one!

    To end with a question: has anyone found that obtaining guardianship helps in any significant ways? Thanks!

  10. Martha says:

    I recall when my daughter was 19 and homeless. The only way I could reach her was to call a day shelter. I would call and be told that “we cant confirm or deny that your daughter is here”. I would then say she is expecting my call, and was able to speak to her. So this shelter was able to work around the issue and I am thankful as this was the only way I knew that she was alive. When my son recently turned 18, his pediatrician sent a release requesing him to sign (which he did). I think the provider approach to the subject is key. For example if this is made a routine part of care and explained to the young adult as an important part of their overall care, instead of emphasising the “power” that they have to accept or reject services, then perhaps there will be less resistance.
    I agree with Lisa about the double standard of involving family input in medical vs. mental health cases. Providers are afraid of repercussions on this issue and it does to be clarified. During a crisis medical or mental health, these standards need to be revisited as mental health crisises can be every bit as deadly as a heart attack. When DCF has a 51a filed, they are allowed an exemption for release signing , why cant crisis workers do the same? With the stringent fines HIPPA attaches to violations, it is understandable why mental health providers are reluctant to talk to people without a release. This as an issue that needs to be addressed and providers trained is how to iclude the familyor other trusted people (it’s not always the family who support the young adult best.) in the care of young adults. That is wraparound is it not?

  11. Jeanne says:

    As a parent of two adult children with “special needs”, one more cognitively/developmentally based and one more mental health based, I can attest to the divergent practices. I am rarely asked for “consent”, let alone a copy of the guardianship decree for my oldest daughter who has severe cognitive impairment. However, many, many medical professionals for my son with MH issues initially fed him and us the same line that he had these “choices”, they bought his line of BS that it was “just” substance abuse as he wanted them to believe as he felt it more acceptable to having MH issues for many years. I challenged each and every one of them, feeling as if I was the crazy one sometimes, until I found a psychiatrist who would listen and worked with us when he was 17 and assured us things wouldn’t change when he was 18. And they haven’t. My son is now doing very well and we meet weekly with his psych MD. First we meet together, then my son leaves and I (or my DH) can share freely and then we come back together to discuss, process and plan. It is the reality that I/we add to his treatment that has provided the success he is experiencing. As well, as my son’s assurance that we are never giving up on him. So, keep looking for the medical/mental health team that is the right fit for you and your family. Great article Lisa! I know our situation is not the norm. Thankful that we persisted and prevailed.

  12. frisby says:

    Hell on Earth. In February our college student son, 19, began behaving in grandiose and extreme irritability, one suicidal fit. We were deer in headlights. He left the house Feb 18 with a backpack. On March 13 a sorority house 2 hours away demanded we come get him. With campus police we got him at 2 am. by 4 am he was Ohio “pink slipped” to a hospital and then transferred to Ohio Hospital for Psychiatry in Columbus. Within days Hipaa laws prevented our involvement.
    He was released to the streets March 24 without even a drivers license! Called me in angry demanding I bring him clothes and money, was going to sue us and OHP — had been released to a patient that he met at OHP!! ( a registered sex offender for sodomy under the age of 18, 2001 age 50)
    4 days later we worked with sheriff to get him back into a hospital– he then tested positive for marijuana.
    He has been at this psychiatric hospital 14 days and the psychiatrist would not sign for guardianship. He probated him involuntary civic. We had lawyer, we were in lobby. no one let us speak. And then, the very next day he called us saying that they were releasing him soon and we needed to come and talk to the doctor. Thursday we were told that yes, they wanted to release him and have with one day a week therapy saying that if we had any “problems” “all” we had to do was just call the sheriff and he would be hauled back into the psych ward. we hate that idea!
    8 weeks ago this young man was home here with his brother and they were both accepted to Ohio State in the Fall Autumn 2015.

    First hospital said no drugs in system and said he was “paranoid” and delusional.” This psychiatrist says “bipolar, manic episode” no scans nor blood work were done. We really dont know whats wrong or how to help him.
    This is about 50% of the whole nightmare and no end in sight because the experience itself has caused him so much mental confusion he now thinks his life is ruined and he should apply for Social Security. He has developed a strange attitude against woman referring often to Eve ate the apple and told me yesterday that I was possessed (?) I just dont see how on earth releasing him to our home with one day a week therapy makes any sense especially since we both work and he would be here alone most of the day!
    Please God in the Name of Jesus Help our family!