On Mental Health: How Medical Privacy Laws Destroyed Dad

I don’t normally write about such personal topics as family illnesses, but it is my hope that those who have gone through a similarly dark cooridor in their life – whether as a result of government control, or just plain ignorant doctors – would know that they are not alone in such frustrations, and to explain to the general oblivious public and incompetent lawmakers the consequences of their actions.

My father was diagnosed as a paranoid schizophrenic several years ago, and was recently re-diagnosed as schizoaffective by a team of doctors. The reason his diagnosis changed was essentially because his illness degraded his mind so far that he began manifesting other symtoms along with it, such as sudden mood changes and personality disorders. Over the past several years, his condition had worsened to the point where he was finally admitted to a psychiatric hospital after attempting to assault his neighbors for the third time – first with a knife, then with a hammer, and finally with a steel pipe. During this entire period, he would have been legally able to purchase a firearm as well. Thank God he didn’t. 

You may be wondering why a mentally ill person was allowed to run around his apartment complex threatening people, or why we (his family) did not act “more responsibly” in seeing that he got the help he needed before such paranoia escalated into violence. This is where HIPAA not only played a role, but quite possibly led to the condition he’s in now. HIPAA is the Health Insurance Portability and Accountability Act. HIPAA was passed in 1996 and includes many provisions to “protect the privacy” of hospital patients by rendering their personal information off limits to the public, friends, and even family. HIPAA uses a consent-based system, where the patient must consent to a certain individual’s involvement in their private life. HIPAA was designed, in part, to protect the civil rights of medical patients. The achilles heel, however, is the consent required by the patient. In the field of psychiatric health, consent can be a very tricky game.

My father suffers from both a medical and a psychological condition. His medical condition, varicose veins, is normally a treatable condition. Varicose veins are typically manageable with simple jobst stockings, elevating the feet, and medication. His psychological condition, Shizoaffective disorder, is a fusion of mood disorder and schizophrenia. It is certainly not the only illness which impairs an individual’s perception of reality, and it does have some interesting side effects. One of the biggest problems with the disorder is that it can easily alter one’s ability to make sound judgments. Without treatment, the individual with schizoaffective disorder may further worsen in their delusional thought processes and become further alienated from people and society. This was the case with my father; his perception of reality led him to believe that his doctors were trying to kill him, and believed that the medication he was taking was poison. This led him to stop taking medication that treated both his medical and psychological conditions, leaving him with irreparable ulcerations in his legs and a progressively debilitating psychological illness, left unchecked. All of this started many years ago, but became an issue after HIPAA.

Over the following years, my father would become more paranoid, believing the world (including his family) wanted to harm him. When in public, he heard voices of complete strangers which he believed were casting insults at him and threatening him. When all of this started, of course, the natural response from myself and his former wife was to try and seek help for him. Upon bringing these concerns to the resident mental health facility for our area (Center for Life Management), we were informed that, because of HIPAA regulations, we were not allowed to speak with his doctor, participate in his treatment, or even know who his doctor was – without my dad’s consent. By this time, of course, my father had regressed into believing that his own family wanted to harm him, and so naturally we were not allowed into his life. HIPAA gave my father the ability to do what others having his disease do: isolate himself from his family and society. See, HIPAA isn’t a human – it’s just a law. It has no common sense, no ability to discern special cases, or exception-making abilities – it’s just a piece of paper written by law makers. When you combine a license to shut people out with the general disregard for personal care or treatement by institutions such as Center for Life Management (CLM) in NH, you end up with the system letting people go untreated. The law makers in HIPAA’s case were seemingly very ignorant of psychiatric health that the mentally ill were afforded the protection to ultimately sink deeper into psychosis. Rather than protect privacy, the law, as it applies to psychiatric health, prevents a victim’s family from becoming engaged in assisting their loved one before they fall off the deep end.

You may be thinking that this is where guardianship would come into play, but there is a considerable expanse between the condition one must be in to make delusional judgments, and the condition one must be in to legally justify guardianship. My father started out on the edge of a very slippery slope; somewhere between delusions and guardianship, where there is no hope and no way to assist a victim of mental illness. Our current laws are designed to allow for such a person’s condition to worsen until they become a danger to themselves or others before they can get help.

As his condition worsened, you would think that laws governing psychiatric evaluations would kick into gear, but I was surprised to find that I was just as powerless as a police officer would be if they couldn’t obtain warrants to gather evidence. The evaluation and admission laws in my state were written long before HIPAA laws were, and so they rely on an abundance of information being available that simply isn’t there in a post-HIPAA world. The IEA (involuntary evaluation admission) process is undertandably designed to be difficult; it protects an individual’s rights by preventing an involuntary admission without reasonable cause. It also makes it exceedingly difficult just to get an evaluation, and thanks to HIPAA, the evidence required for an evaluation is impossible to assemble unless the individual has become violent or tried to assault someone. An evaluation requires reasonable cause, which today cannot be established when the individual has been afforded the protections in HIPAA to isolate themselves from their family. In other words, there was no way to get a doctor to testify to my father’s failing mental health because we were not permitted to even know who his doctor was, or to talk with the doctor about his condition (or how to improve it). We could not even speak to my father for a time, because the law prevented anyone from giving us his new phone number (which he changed, out of paranoia). We were unable to find out what prescriptions he was (or wasn’t) taking, so we could not prove that the giant, oozing holes in his diseased legs were caused by his unwillingness to take anibiotics, or to definitively establish that he was neglecting prescribed anti-psychotics. Evaluations require information like this (and more) to show that a patient is incapable of caring for themselves, but this information is no longer available, thanks to HIPAA, even to loved ones. Evaluation: denied.

Shortly after hitting this brick wall, my father became exceedingly paranoid. We were unable to call to check on him or talk to him for several months, and would not let us in the door to his apartment. During this time, the only way we were able to check on his status was by reading the dispatch logs from the local police station. He began calling the police almost nightly with hallucinations of witches breaking into his house to kill him, escaped mental patients moving into his complex, and enemies sending ultrasonic waves through his house to penetrate his body. Over this period, I am told 15 different police officers had been responding to his various calls. We asked, but due to HIPAA, the police were not even willing to give us his new phone number to speak with him, due to HIPAA regulations.

Things eventually came to a head – and with his family isolated per federal law, my father slipped into a state of violent paranoid delusions. He began wielding weapons to protect himself, and had been found running through the halls of the apartment complex with them (a complex with small children in it). Within the next several days, we would attempt to have him IEA three times.

As I mentioned, the IEA process was written before laws like HIPAA, and so we failed twice to even have him evaluated. Yes, I said evaluated. We were instructed by CLM that the only way they would evaluate him was if it was voluntarily. In spite of all of the reports from the dispatch logs, concern for his violent behavior, and some of the very strange messages we had managed to get recordings of, an evaluation would not be performed – we were told – unless he consented, per HIPAA regulations, and if he did consent, they would be unable to discuss the results with me – again, due to HIPAA regulations. To evaluate him involuntarily, we were told that he would have to make threats or assault someone. A few more days went by and his condition worsened even more, to the point where he was calling the police multiple times per day. A very intelligent police officer convinced him to get a voluntary evaluation.

This is where you’d probably expect to hear that he was immediately committed and given some shiny new pills. Unfortunately, after spending an entire evening of filling out paperwork and speaking to psychiatrists, watching him fight off nurses that tried to look at his necrosing legs, and seeing first hand just how incoherent and paranoid he had become, to the point of making pro-active threats against others, he was sent home. We were informed that he would have to assault someone to be admitted. Attempt one.

The next night, he chased his neighbors upstairs with a heavy steel tube. The police placed him in “protective custody” and took him themselves to be evaluated again. I received a phone call from CLM informing me that they would send him home because he hadn’t actually assaulted anyone – but only threatened them, and took him on his word that he wasn’t actually going to hurt anyone. In fact, the only reason they called me was because he had asked for a ride home from the hospital; otherwise, they wouldn’t have been able to call. Psychology is a soft science, but I was starting to believe at this point that the social workers at CLM might actually be less sane than my father, who very clearly needed help at this time. In addition to chasing the neighbors around with a steel pipe, he was regressing back to my childhood, taking on different forms of speech (accents, etc), and was babbling uncontrollably. This apparently wasn’t enough for an initial admission. Attempt 2.

By his third visit to the hospital, which eventually led to his committment, he had become so paranoid that people wanted to kill him that he was afraid to return to his house. The world my dad lives in is a world of evil and constant fear of being murdered. His illness did not come over night, it occurred over many years, and could have been treatable had his family been able to participate in his therapy, or engage in a course of action with his former doctor. HIPAA allowed my father to seal himself off from his therapy, his family, and anyone else who may have been able to help him. I am confident that HIPAA contributed to the worsening of his condition, and the reason that he is now in a psychiatric ward, rather than having treated his illness early on.

I attended a court hearing where we had to establish reasonable cause to keep him admitted for more than ten days (one of the only reasonable protections in place for the patient). Two different doctors from the hospital testified that he is a danger to himself and others, and recommended he remain admitted for a period of two years.

It took years of being locked out by our federal laws, and watching his condition worsen in order to get him this far to receive help. He could have very easily killed a neighbor or a small child during one of his psychotic episodes. Our federal HIPAA laws have forced me to watch his meantal health degrade as if from behind iron bars – knowing that our federal government has rendered me helpess to do anything to help him pro-actively. He has hit bottom and become only a shell of the gifted, intelligent man I used to know him as. HIPAA has helped to destroy this man by affording him the ability to isolate himself, amidst a disease whose symptoms include delusions inciting isolation and paranoia, and has castrated families across the nation who are seeking to help their own loved ones in similar situations.

Since his two-year probate committment, he’s chosen to continue to isolate himself and somehow HIPAA allows him to prevent his doctors from talking to them, or assisting in his therapy at all. He believes the doctors have “poisoned” us against him, and his paranoia continues to leave him isolated. You would think that even after being committed, it would be determined that he does not have the sound judgment to make such decisions for himself, but our laws have been written so poorly that he is trusted with the “right” to cut himself off from everyone. As a result, he will likely be institutionalized much longer than he would have been had his family been allowed to play a role in his therapy.

I realize that patient privacy is important, and I’m also certain that this brief account does not relay the years of pounding the sand my family has faced as a result of HIPAA. While I am a strong advocate of civil rights, the discretion of a doctor to share information with loved ones must also be respected, especially when the patient’s judgment is impaired. HIPAA very strongly incapacitates a doctor’s ability to act in the best interest of his patient, rendering the doctor powerless and fearful of the law, no longer able to (or willing to) do the right thing, even if their oath conflicts with HIPAA. This seems to be especially true in psychological cases, and even if the doctor has established that the patient is unable to make sound judgments. HIPAA is certainly useful for preventing the abuse of patient data in a clerical sense, but needs an overhaul to give doctors much needed discretion. Ask yourself: do you really believe the federal government should be the deciding party in when your doctor can talk to your family?

Other Stories

The stories below were emailed to me. The sender(s) specifically requested that I post these on my website to highlight the epidemic nature of this problem, and the problems with HIPAA. If you want me to post something, email me.

October 3, 2008

Dear Mr Zdziarski, I read your article online about your problems with your father due to the HIPAA laws not allowing the family to help a chronically mentally ill person. I completely understand your plight since I have been having very similar problems with my daughter, who is 30 years old now, and has been chronically schizophrenic, anorexic and obsessive compulsive for the past 5 or 6 years. I spend every spare minute of my days calling various agencies, hospitals, police and psychiatric organizations to try to get her help, but I am never in the loop when it comes to diagnosis, medication, etc. But the worst thing is, as you know, one of the symptoms of the severely mentally ill, is that they don’t believe they are really sick, their delusions seem real to them, and they quickly learn how to avoid hospitalization and medication. I am more than willing to become my daughter’s conservator so that I can help her to get help, but the system requires that she first be hospitalized involuntarily long enough to be held for conservatorship. This is almost impossible to achieve, since my daughter simply tells anyone who is evaluating her that “I’m fine”, “I just ate”, “There’s nothing wrong with me”,etc and the PERT team or police who came out on a 911 call simply leave and tell me she doesn’t meet criteria. Meanwhile, she lives in isolation from the world, probably weights about 85 lbs (her normal weight should be 120), talks to invisible friends, is afraid to use a phone (it might be bugged), and is generally unable to properly care for herself (nevermind having a job – I gave up on that years ago). If I wasn’t adding $500 to $600 of my own money (that I really can’t afford) to her $870 / month SSI income, she would be living on the street with the zillions of other mentally ill people who are being passed over by the current system (not to mention the ones in jail). This is a terrible shame that our country, and the various states, are ignoring. I would like to help bring this very serious problem to the attention of more citizens in the hope of someday getting some kind of legislation to change this terrible system. Would you be interested in working with me on this? Maybe we can start a website and invite other people with similar stories to air their views? In the meantime would you please publish this email on your site?

Rena. (A doctor’s assistant at a cancer facility)