Refused Consent: How HIPPA Can Hurt the Families of Adult Children with Mental Illness

A first year graduate student interviewed me last week for a paper she was writing for her law and ethics class. She asked me what was the most challenging legal or ethical issue I have yet to face in my work as a therapist. I thought for a moment about so many of the challenging issues I face in my work with clients. These are not simple answers. When you are sitting alone in an office one on one with a variety of different clients, presenting with their own unique struggles, a myriad of things come up all the time. As a therapist, I must be mindful of my legal and ethical obligations as almost a second nature. I have found that this gets easier hour after hour sitting with another human being but is never uncomplicated.

I thought about her question to me and reflected back on some of the hardest legal/ethical issues that have come up. Some hurdles I’ve had to navigate have to do with the mandatory reporting of child abuse cases, the sometimes strange laws surrounding minors engaged in mutually initiated sexual acts, and the moral dilemma about taking clients rights away to place them on a 5150 hold (due to their threats of harm to self or others). As intense as these issues are, however, these legal and ethical challenges are not the toughest to deal with for me because I can feel an internalized sense of “right or wrong” in handling them.

What I have struggled with the most has to do with the limitations that HIPPA (the Health Insurance Portability and Accountability Act) places on the families I work with who cannot participate in the care of their loved ones if they have not been given consent by their adult child .  Historically this act was put into place in 1996 with the best of intentions around protecting health information and allowing individuals to have privacy around the medical care they seek.  To use an extreme example, if you are suffering with HIV, HIPPA allows you to have confidential treatment that your workplace, who handles your medical insurance, has no access to.  This has freed up many individuals to safely seek medical attention and care for issues that they may otherwise want to keep hidden.  It has been a really powerful ally in client’s rights; however, like many of the mandates that are put into place, there have been consequences to the righteous  limits of HIPPA that may or may not have been anticipated, but nonetheless, have been heartbreaking for some of the families I work with.

At the age of 18 we are deemed “adults” in the eyes of the law.  This adult status allows us to choose who we do or do not share medical information with.   The challenge this brings up for the families I work with is that they may have an “adult” child (over 18) who is suffering greatly with a severe and persistent mental illness,  who may even still lives in their home, and is in need of more intensive services or care.  If that adult child does not sign a consent form giving their loved ones the ability to share in the treatment of their illness, the parents cannot have access to any information regarding their child nor can they seek out treatment for them even if it is in their child’s best interest.  In extreme cases, I have worked with families who have an adult child living in their home in the midst of a psychotic episode in which they are extremely paranoid.  This paranoia extends to believing that their parent is “out to get them” and they are unwilling  to have their family member speak to their Psychiatrist or Psychotherapist to coordinate the best possible care.  Or even more detrimentally, they may not be receiving treatment at all and the parent is unable to initiate services for them without their permission.

This can be an issue for a variety of clients, for example, consider an adult child suffering from Major Depressive Disorder who chooses to leave their family out of the loop deliberately and refuses consent as a way to isolate from their parents or punitively keep them unable to get involved with trying to support treatment.  Keep in mind that this is an adult child still living in the home causing distress to the entire family as they are refusing treatment for their illness.  This family is trying to stand by their adult child and keep them safe in the home. Families are left frustrated, hurt, and helpless.  Mothers and fathers sit back and watch their cherished son or daughter spiral downward and feel unable to do anything to intervene. Of course, there is always calling the police if their child gets out of control, or forcing the adult child to move out of the home,  but the fear of their child living on the street, or in a homeless shelter, keeps them shackled in a vicious cycle of trying to manage a volatile situation with very few tools on hand.  This situation forces them to tirelessly try to stand by their son or daughter as their symptoms continue to worsen in a tragic manner. Often families will bring in their adult children to therapy in hopes of getting them help.  Sometimes they have to threaten to kick them out of the house unless they come.  As a therapist, this is not always the easiest client to engage with as you are their “punishment” in order to stay in the home.  

As someone who used to work in a county contracted mental health organization, I am familiar with the resources available in the community and the many ways to work with these individual clients and also their family members.   As a provider, without a client’s consent, I am able to receive information from these families so they call me to vent or let me know how their child is doing.  However, I can share no information in return regarding the progress, interventions, or work we do together in session.  I have had parents cry in frustration, lose sleep out of fear, and yell at me from worry for their child, and I still cannot offer any comfort.  I can not share with them that things are getting better, their child is learning new tools, they are finding hope in their illness, that they love you more than anything.  I can say nothing.  It is the hardest part of my job, this inability to provide comfort.

I often wonder if it is because I too am a mother.  I know that mental illness strikes at any time to anyone.  I know that I could just as easily be sitting on the large couch vs. on the therapist chair begging for more information because my child is hurting and I can’t help them.  My child is in pain and he/she won’t talk to me, won’t let me in, won’t sign a simple piece of paper that will allow me to find out how they are doing.  I must speak in generalities, not specific  to their child.  I can teach them about different diagnosis’ and provide education while making no personalized statements that may be meaningful to them.   I am grateful I have learned of something to offer these families.  I  refer them to the best program I know for families of children who are suffering from a mental illness:  NAMI’s Family to Family Program.    It is a program from the National Association of Mental Illness that is taught by families for families  in a small support group format.  It teaches them all about how to be as empowered as possible about caring for their family member as well as how to have self-care and compassion towards themselves.  The families I have referred say it has saved their sanity and given them some strength in what can feel like a vast vacuum.

As a final note, I think it is important to mention that not all families have the best interest of their adult children at heart and can actually be pretty harmful at times in provoking their adult child who is suffering from a serious mental illness.  There are families that have mental illness throughout the genetic lines and a parent who is suffering from a mental illness cannot always be a strong advocate for their child without first doing their own work.  In my experience this is the exception and not the rule in the families that I work with, but it does exist.  Some families have the potential to be toxic and enabling of each other in their illness or addictions.  However, 99.9% of the time, the families I work with are loving, concerned, desperate and short of hope.  This is the toughest legal issue I work with as a therapist.  I wish there could be built- in exceptions to consent forms that took into consideration that just because an individual turns 18 does not always mean they know what is in their best interest or how to best care for themselves.

Yours in Health,

Stacey Neil


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