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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?

Bucking Conventional Wisdom in Mental Health

strollercliffMy two hot buttons are pushed every time the topics of psychoactive drugs and forced treatment are brought up. The two are interrelated. First, there is an over-reliance and near worship of psychoactive drugs in our culture. The other is the problem of power and coercion, forced treatment intended to be helpful but ultimately damaging.

I am a single mom of two boys, both adopted as infants. They are now young men ages 26 and 20. My 26 year old, whom I’ll call Joe, has big gifts and big challenges. I’ve worked in and around mental health for over 40 years. Not as a clinician, but often in situations that created relationships with people with the life experience of mental health diagnoses and extreme states. As my son’s challenges began to come to light in kindergarten and first grade, I tried to call on that life experience and my optimism for his future. I confess I also tried to “fix” him although I would never have called it that. I thought surely if we get a handle on whatever is going on now, we’ll know what to do!

I came into this journey believing medication was a last resort, and I got a lot of lip service in that regard. However, I couldn’t hold on faced with the countless professionals in all manner of fields who believed medication would necessarily be part of any plan for him. We started medication in fourth grade, took a holiday in 6th, by the end of 7th he was back on them and remained so until he was about 23. I kept a running tally of medications tried for a long time. Not sure I got them all – but I have 27 on the list, often in cocktails of 3, 4 or even 5. He has had 13 years, literally half his life, under the influence of medications. He’s now been off all medication for 3 years.

I decided to write this after another blog about the Murphy bill. It opened with a brief story about a 19 year old stopping his medications wanting to know what he is like without them. I wanted to tell the 19 year old that he can find out what he is like off medication, just don’t go cold turkey. Seeing bad results in 12 days doesn’t mean you need medications for life! If you’ve been on as long as my son was, take a year or even more to come off.

My son’s last drug was clozaril . We both say the best thing about clozaril was it got him off everything else. As the psychiatrist was attempting to bring the dose up, my son began saying no, he wanted to come down. Eventually he just stopped. He calls it cold turkey because there was that final day of “I’m done!” but in truth it was a long, slow taper.

Life hasn’t been without bumps since then. But we have a much better class of problems and he’s experiencing a better range of feeling and functioning than he ever did on the medication – any of them. He has some very dark times that come on him suddenly, but he’s learning to manage those better and better. Connecting with others on the journey, learning about hearing voices (www.hearingvoicesusa.org) and alternative views about his experiences have been powerful and healing. Most important, these so called alternatives have revived hope.

I want to move to another subject and that’s the power dynamics in mental health, and in parenting into adulthood. I don’t feel 18 should be such a cliff. It’s not a surprise. We all know that it’s coming. Joe was the kind of kid who played power trips all along and so I had to adjust and find ways to avoid that. One way for 18 not to be a cliff is to release and become more of an observer and supporter earlier. For me the dance goes on — suggesting, supporting, cajoling and whatever other approaches occur to me along the way. I’ve found the most powerful thing I can do is just be present. We go for car rides in bleak and dangerous times. I might sit quietly in the room with him as he talks things out. It doesn’t have to make sense to me. But curiously, eventually, it does make sense.

Once when I was in an appointment –at Joes’ request– to hear an update on medication, the psychiatrist started talking to him very gently about how critical it was for him to stick with the (medication) program. She told him if he didn’t, he’d lose judgment…he might not even recognize that he was sick. Although this was a stage when I didn’t typically speak, I did speak up. “That hasn’t been my experience. Joe does know when he is struggling more and he reaches out for connection. Sometimes not in the greatest way, but he does know.”

I’ve thought about that brief conversation countless times, and it becomes more important each time I hear it in my head. I think it’s a terrible message to tell someone that they don’t know themselves, can’t know themselves – and believe me, I know when it looks like that! People can make sense of their experience and can be supported through extreme states without force. In fact, I believe force is tremendously damaging and I won’t play that card. No AOT or Roger’s Orders for us. There’s much more I’d like to say, but I’ll save that for another day.

Our guest blogger Marylou Sullivan is the parent of a young adult with mental health challenges. She is the Executive Director of the Western Massachusetts Training Consortium. Ms. Sullivan is a passionate advocate for people with disabilities.