HIPAA violation during day surgery prep

I had day surgery at the end of May and again a week later. This was minor and the surgery went without a hitch. I guess they are hoping that because they used drugs I have no memory of this incident. However, I do recall and the hospital’s outpatient surgery center, whoever is head of it, is getting a call from me this week.

Not to be nitpicky, but HIPAA violations are serious. My guess is that most of these fly over patients’ heads and are rarely reported because patients and their families (and staff!) are not perceptive enough. None of these witnesses or perpetrators of crimes and violations are aware of the potential harm that could be done by violating confidentiality.

Here is what happened. I was being prepped for surgery on my first eye. My friend was going to pick me up afterward and somehow showed up prior to the surgery. He found me in the room and popped in just to wish me well. I was dressed (or at least covered) and okay with that. We were joking around.

I had already informed them who was picking me up. They already knew I live alone and that I am unmarried and no children live with me. I told them that the person who is giving me a ride is “a friend.” No way did I say “husband” or “family member.” No way. He was a brand new boyfriend, new acquaintance. Not someone I knew very well. He was the only person who could really do this, and he had volunteered. He had time on his schedule. So he had shown up and was in the room.

The nurse came in and started asking me health questions, right in his presence. I didn’t expect this. Who did she think my ride was? Husband? Legal guardian? Why didn’t she do this when he was out of the room? She didn’t hesitate to bring up the kidney disease, right in his presence.

No way had I shared my personal health information with this guy. It was none of his business. We had gone out to eat, and all I told him was, “I do not eat salt.” Maybe he thought it was a crazy diet fad. Now what? A woman with a health condition. Oh no!

A few days later he called me up and broke up with me. I’m okay with it and I don’t regret any of it, and likely he did not break up with me due to “health condition” at all, but none of this excuses what the hospital personnel did. It does not justify a HIPAA violation, which is unethical and a violation of any federal policy that protects private protected information.

There are very few instances when a healthcare agency can disclose such information. If my “friend” was the FBI, then yes, they have to disclose. If my health information was subpoenaed, then they have to. They share with the insurance so they can get paid. You share to perform lifesaving treatment such as a blood transfusion, or putting a limb back on after a car accident.

None of the above were the case. The kidney disease had no relevance to the cataract operation. I shut down the conversation very fast. It was too late. My friend had heard, and what had been said could not be taken back.

I have one more “checkup” to make sure my eyes are okay. I hesitate to show up, seeing the appointment as money in their pockets, but I suppose I will. I can always call and tell them, “Work called me in.” Not that I hold the doctor or his office responsible. It was the hospital personnel that did the violation. Still, I only wanted my eyes done. They’re done. I don’t need the expensive superfluous rigmarole, especially since I value my upcoming day off.

Your HIPAA protection, under law, as “mental patient,” and my own experience

Here is the extent of YOUR HIPAA privacy, spelled out:

http://www.hhs.gov/ocr/privacy/hipaa/faq/ferpa_and_hipaa/520.html

What does “serious and imminent threat” mean? How is “serious and imminent threat” determined? 

You’d think that a person would have to demonstrate said “serious and imminent danger” to self or others, right? Guess who decides? A psychiatrist, social worker, or law enforcement personnel. 

Here are some examples of how such “serious threats” are determined:

1) The patient is interviewed for about five minutes. If there is any fear of liability (oops, this person might die under our care and we’ll be held responsible) the person is deemed “danger to self” for the protection of the health care provider’s reputation. So after a mere few minutes talking to you, you  lose all HIPAA rights.

2) The patient uses the word death or suicide, or various related keywords. The context doesn’t matter. The patient could be talking about a friend’s suicide. Still, Anyone’s HIPAA rights can and will be obliterated based on one or two words taken out of context. They will do this for their own convenience and to protect their reputation and they can and will do whatever they want.

3) The interviewer can determine a patient  is “danger to self or others” based on flimsy evidence, or no evidence whatsoever. The interviewer might note, for instance, hair style, or a style of dressing, or perhaps a tattoo. Race, religious background, family status, living situation, age, “handicap,” sexual preference, and nationality will immediately cause bias in judgment here. If they find a black male teen wearing a hoodie don’t think for a minute that kid won’t be judged in biased manner. If NSA, which is supposedly a professional entity, can profile anyone who has dark skin or appears “Arab,” of course this profiling happens anywhere, especially in health care.

4) Any person can call the cops and claim you are “danger to self,” demanding a “wellness check,” and at that point, you could be subject to any of the above.

All this is supposed to protect individuals and society, but what happens is that people who are NOT DTO/DTS end up losing their HIPAA rights. There are people out there who are indeed threats to others but these people slip right by, again and again.

I can give you examples from my own experience. Perhaps you can relate, perhaps not.

1) I was in a family session. My entire family, including my brothers, were present. I was discussing future plans in this meeting, mentioning a friend of mine whom this therapist knew. Immediately, the therapist interrupted me. She revealed to my entire family that this friend was currently “in the hospital.” This was a clear violation of my friend’s privacy, HIPAA or not. I was furious. I didn’t know what to do nor how to respond. I knew what she was doing was wrong, though, and I said so right then and there. I walked out of the session, completely pissed off. God knows what else was revealed after that.  I then had a moral dilemma: What do I say to my friend?

I had to think quickly on this one. I knew this was going to upset her. Maybe I should just keep it to myself. I knew, though, that my mother had a way of running off at the mouth. I knew that “tact” wasn’t my mother’s strong point, and most likely she would say something to my friend.

I decided to tell my friend precisely what had occurred and how I felt about it. I told her I knew what had occurred was wrong. I was glad I revealed this to my friend, because sure enough, my tactless mother blurted out, “I’m so sorry you were in the hospital.” You can imagine my complete embarrassment! My friend was also embarrassed, but I had already told her that this therapist had blown confidentiality.

I confronted the therapist, who justifed everything she did. Her supervisor backed her.  The excuse was flimsy at best. I know the therapist had done this not for viable reason, but because she made a bad mistake.  Back then, it was easy to get a lawyer, so that’s what my friend did. Looking back, I admire this friend’s actions. What the therapist did embarrassed the hell out of both of us and affected my quality of life and my friend’s quality of life for the remaining years of our friendship.

2) I showed up at an  ER. I’d never been hospitalized before, and had no clue what I was in for. The person who accompanied me clearly told the ER staff that I did not want my parents notified. I was almost 25 years old and since the age of 17 had mostly lived independently.  I didn’t have a legal guardian, and I was financially independent from my parents. I signed no papers at the time allowing the staff to disclose information. 

They were in a quagmire then. They didn’t want to give me free care even though at the time, this was the law. Free care to yet one more patient would mean the hospital would lose money. I was well aware of the law. At the time, it was called the Hill Burton Act. I had recently been unexpectly laid off. I’d had a temporary position and was told when I was hired that my job would end January 15. This turned out not to be true and I was let go December 15. I was stuck with no job and was looking around for another, living on meager unemployment payments until I found something. The job hadn’t provided health insurance. I was uninsured and unable to pay out of pocket. 

So that’s why the hospital immediately broke my confidentiality. HIPAA or not, what they did was not legal at the time because I wasn’t a minor. They called my parents and told them to “come get me.” Why? The hospital wanted me out of their hair and they figured my “rich Jewish parents” would drive three hours in the middle of the night up to Vermont (it was the dead of winter) and this would successfully avoid yet another patient receiving free care.

This didn’t happen. They had called my parents at 11:30 at night, or possibly later. My parents were shocked to hear I was in such a state. At that point, my parents made the decision to hold off and wait to hear from me. I ended up admitted but the hospital still wanted my parents to immediately take me away. I was aware of this. Of course I was! I was embarrassed, too. I phoned my parents as soon as I could, rather apologetic. I told them not to take the trouble to show up. I knew they were worried but I was insistent. I confronted the doctor and informed him that I was aware of Hill-Burton. The doctor was shocked that I knew this law. I could tell he felt awkward. He tried to justify why they informed my parents of my whereabouts, saying my parents were my “nearest living relatives.” I pointed out that “nearest living relatives” would be informed if I was dead, not if I showed up at an ER. He admitted I was right and admitted the existence of Hill Burton and that I could get free care since I was unemployed and uninsured. I was put on Medicaid, which covered my stay retroactively. The breach of confidentiality caused embarrassment for me, and caused undue panic and confusion for my parents.

3) I saw a psychologist named Tom Alkoff. My parents were delighted that I was seeing Jewish doctors. My parents were like that.  Sadly, the doctors did many unethical things in their practice. My parents were paying Alkoff in part and my father wasn’t happy due to  Alkoff’s billing practices. I slowly became aware that Alkoff was revealing to my parents just about all of what I told him in my sessions with him. I found out that my parents questioned Alkoff’s expertise. They found out his home phone number somehow and used it to communicate with him. I’m sure he found this awkward, but this was back in the day when you couldn’t block calls and most people didn’t have answering machines. Voicemail, call waiting, and caller ID had not yet been invented. I never had Alkoff’s home phone and he didn’t give this out to patients. But my parents, who were paying him, were therefore privy to any information they wanted to squeeze out of him. He didn’t keep any confidentiality whatsoever. After a time, he started ending our sessions 20 minutes early (after he’d started ten minutes late). I asked him why he was doing this. He said he was asking me to leave the office so he could “call my parents and tell them what I’d said to him.” These phone calls occurred on my time during just about every session. Years later, my parents verified that this in fact had been happening. They weren’t aware that these discussions were taking place during what was supposed to be session time they were paying for, nor did they realize that even though they were my parents, what he was doing was unlawful. One day, I figured it all out. I was in shock, dismayed, confused about what was happening and questioning why Alkoff had certainly not cured my eating disorder, but made me worse. I knew he was a liar and a faker with a Messiah Complex. I went and tried to confront him. I also told him I intended to kill myself. He ignored what I said, assuring me I was “doing great.” I saw no evidence of improvement whatsoever. I stopped at a store and purchased a can of diet ginger ale and a bottle of Tylenol. That’s what I used, as soon as I got home, to swallow all the Imipramine and Thorazine in my possession and as many Tylenols and I could before I passed out.

Alkoff worked with a married couple, Carl and Ronnie Burak. My friend was also a victim of this trio of fakers. She died of suicide a few years later. There were many wrongful deaths. The trio left town, of course.

4) I later saw various shrinks in the Boston Area and elsewhere. There were countless violations. HIPAA didn’t exist yet but even without HIPAA, there were confidentiality laws that should have protected me. Due to monetary concerns, the shrinks acted as buddies to my parents, ensuring that my parents were informed. They wanted my parents’ unquestioning faith in them so they’d continue to siphon money right out of my parents’ wallets. Our family was profiled as “rich Jews” whom they could take advantage of. It was so unnecessary, and embarrassing for me. I felt patronized. Slowly, my self-worth crumbled, because I felt like a pawn in the situation. Over the years I was losing my voice. I wasn’t aware of this and assumed I was getting “expert care.” I regret that my parents and I were taken advantage of.

5) After my dad took sick, and eventually died, my parents were suddenly out of the picture. I’ll be honest: this was an incredible relief for me! You can see why I felt this way, can’t  you? I was sick of being talked over, treated like a child in grade school who was being discussed in regular parent-teacher conferences. It was so demeaning! After my father’s death, I went back to college. I was doing well, too. By then, HIPAA was in existence as was the Americans with Disabilities Act. I didn’t ask for nor require accommodations, and I never went to their disability services. The only time I did ask for accommodations I was not required to file paperwork. All I did, in January 2000, was to call the school and tell them I’d broken my leg that November and was still on crutches. I asked for classrooms that I could get to without using stairs. I was granted this and that’s the only time I asked for anything like that.

I had my one decent therapist at that time. In 2001 she was laid off and after that I had crap for care. While it was true that having my parents out of the picture gave me independence, I also lost my dad’s advocacy. My boyfriend, Joe, stuck up for me whenever he could, but he had far less clout than my dad did. Joe died in 2003. After that, I had no one. I had no one to confide in and no one to advocate should I have any conflict in “care.” Of course, the care then worsened. I became a pawn of the System. They could do whatever the hell they wanted and I had no one to come to my defense.

6) HIPAA laws are meant to protect. They don’t.  Care for me after Joe’s death got more abusive and my confidentiality was broken whenever they felt like it. I’d get sectioned on a whim, again for convenience. My most abusive, manipulative, power-hungry therapist, Maria Mellano, most likely was well known to local police in many towns around Boston. I can’t imagine how many times she used her sectioning power, or threat thereof, as scare tactic. She even sectioned by accident! Yep, she told me she’s phoned the Watertown cops asking to do a “wellness check” on me. Instead, the police took me in on a “section” that she claimed she never ordered. She said they misinterpreted what she’d told them. I recall I was at home, heard that familiar sound of a stretcher being wheeled down the hall, asking myself, “What now? What have I done? Nothing!” They didn’t ask questions, they just took me. I developed so much fear due to Maria’s threats, which were increasing in frequency. It was getting scarier, since the police knew me now, as did the EMT’s. I was often relieved if I was sectioned on a weekend, which meant the EMT’s and police were the “weekend guys” who didn’t know me, therefore didn’t judge me based on Maria’s abuse. The weekend guys were noticeably more respectful. I felt like I was a criminal. But I wasn’t! I only wanted my eating disorder to go away, which is the reason I went to therapy in the first place. My condition, over the decades, had seriously worsened due to “treatment.” I suffered multiple medical harm from medications alone. I no longer was employable since I’d been out of work for so long. I was physically ill. This happens to many “mental patients,” this gradual deterioration that otherwise wouldn’t occur.

Do any mental patients thrive? These are held up as model patients, however, they are the exception and not the rule. Often, these model patients, later in life, fail due to effects of long term medication use. Their bodies break down long before they ordinarily would. While they were once outspoken, they then are hidden from public view. You want to know “Where are they now?” You won’t find them thriving anymore. Whatever harm has occurred is covered up. 

6) After this complete breakdown of all respect for me, I  had no HIPAA rights whatsoever. I was subject to illegal searches. I was barged in on by police illegally countless times. They can only do this legally with a warrant for arrest. I was taken to hospitals on anyone’s whim. No proof of DTS/DTO was necessary, only a doctor’s or social worker’s word.

In 2012, I reported that i had been raped. I suggested to police how they might find evidence of this man’s wrongdoing. I told them others were at risk. The police told me that he was protected by law from search and seizure without a warrant. 

What am I supposed to think of that? It’s okay to violate the rights of a “mental patient” with no warrant, no evidence whatsoever, but god forbid do an investigation of a rape by a non-patient. A rapist was immune. I wasn’t.

You can imagine how I felt at that point. Completely invalidated. I was totally worthless in anyone’s eyes. This is a story of serious neglect and abuse. At that point, my peers doubted my word, townspeople who had previously been my friends doubted what I was telling them, and my life seriously was falling to pieces. My brothers had long since removed themselves from my life and I couldn’t turn to them at all, even though one lived only an hours’ drive away. Anything I said was immediately doubted, even though I was telling the truth. They could get away with this, and they did. I recall I was told the psych unit I’d been on “didn’t exist.” I was told things that occurred hadn’t happened, yet they did. 

I wasn’t claiming there were microphones in my TV, nor a secret transmitter placed inside my body. I wasn’t claiming that I could communicate with aliens.  I was well aware of CCTV cameras in my building because there were signs stating that these cameras had been placed there for safety of the residents. There were several such cameras that I can recall where such notices were displayed. One in the elevator, one at the front entrance, and in the vestibule areas right outside the elevator where people waited for its arrival. Police had ability to illegally break into any apartment in the building at their whim. This was done regularly, in fact. I recall once I went out and then, while outside and about to re-enter, witnessed the arrival of the ole familiar police/fire/ambulance crew that showed up once or twice a day at my place to haul someone off. I was scared because by then, I’d developed fear of uniformed personnel due to horrible experiences. I circled around a block and then came in my back entrance. I decided to wait a bit until they left because I didn’t want to be around them. I entered via my rear entrance, which meant if there were any cop cars remaining, I wouldn’t have to walk past them.

Guess what? My door had been opened and had been left not only unlocked bu wide open. I had no clue what had happened nor why the police had broken in, willy-nilly, like they owned the place. I was so scared! What the heck had I done now? Why did they treat us so disrespectfully, like we didn’t matter. This was spring 2013. I was so fearful by then. The police were supposed to protect. Instead, they were treating me like a criminal!

So they justified breaking in to the apartment of a known “mental patient” time after time, yet they refused to investigate a rape. Great hero cops, eh? These are the same cops who were praised by townspeople. I sure didn’t worship them! I was so disgusted every time I saw those words “Watertown Strong.” What a complete farce! If I ever mentioned “rights” or my disdain for police, I was immediately accused of paranoid delusions. Again, this is the further breakdown and degradation of the dignity of a human being who hadn’t committed a crime nor was paranoid or delusional. I was scared for legitimate reasons! Why did this happen? I was scapegoated again and again. This happened because I was voiceless, and no one came to my defense even when I asked anyone to do so. People could get away with it, and they did just that.

****

As you know, I fled my town. I am safe now. I am no longer in a terrible situation. My life has completely changed. I suffer the aftereffects of trauma. And after all those years, the one thing I went to therapy for in the first place, my eating disorder, was barely addressed nor solved at all.

I don’t know what will kill me first, the permanent kidney damage that resulted from years on lithium, or my eating disorder. All I can do is do my best to survive now. I am doing much better being away from the oppression. But the aftereffects are still with me. I try not to worry about it. I hope to accomplish what I can with the time I have left.

Thanks for reading, Julie and Puzzle