ABSTRACT: While the Hipaa Privacy Laws are supposed to protect a patient's rights, in my mother's case they only hindered her from getting proper help.
CONTENT: (©2007-Melanie Neer. This article is the original un-edited version of the article that appears on the Medhunters Website)
During the years of 2005 and 2006, I had two addresses, my own apartment, and that of the nearby hospital. On June 8, 2005 my elderly mother was taking a bath late at night at around 11:00 p.m. Since my mother had the strange habit of falling asleep while taking her baths, I would check in on her on and off to make sure she was all right. Well, that particular night, that wasn't to be the problem, instead, she was having difficulty in getting out of the bathtub. Now my mother wasn't a heavy-set woman, in fact the opposite, she was thin. But when I attempted to help her get out of the bathtub, I just couldn't lift her, it was like trying to lift dead-weight.
Knowing that my neighbor, who was bit of a night owl, was still awake, I left the apartment, and rang her bell to ask her if she could help me with my mother. I had to wait about ten minutes, as she wasn't properly dressed, before she could leave her apartment and assist me. By the time the two of us got into my apartment and into the bathroom, to my horror I saw my mother was out cold, she had passed out. I yelled her name, slapped her face to wake her up, but nothing, no response, so I made a dash to the phone and called 911. Within about fifteen minutes, both a police car and an ambulance came. It seems that even the cops and the paramedics were having difficulty in bringing my mother back to consciousness but finally they were and got her out of the bathtub and helped her to a nearby chair for her to sit down for a few minutes then helped her while the paramedics then strapped my mother in one of those portable chairs to bring her to the ambulance. Both my neighbor and I went with my mother in the ambulance which was to take us to the hospital's ER.
The ER that particular night was crowded with other emergencies, but it was evident that my mother would have to be hospitalized for what may have been a mini-stroke, though I was never exactly told just why she had passed out cold like the way she did. It was about eight hours later that she finally got a room, and my neighbor and I went with her to her hospital room where doctor after doctor came in, as well as a multitude of nurses, asking both my mother and myself all those questions that are always asked whenever a patient is admitted to a hospital.
I have to admit, I was rather vocal in expressing myself to the doctors and nurses about my mother's condition. It had nothing to do with this particular incident, but due to my mother's deteriorating condition, not only medically, but more particularly her emotional and psychological problems that she had had long before that 2005 June night, and which I feel weren't being properly treated due to the Hipaa Privacy Laws.
I will never know the full extent of my mother's emotional or psychological problems as she, in my opinion, was never properly diagnosed. I did know, however, that at least one condition that became quite apparent to me during the last few years of her life, and which was most noticeable by around the year 2001, was that she was demonstrating all the classic symptoms of severe depression. She lacked any kind of motivation, took no true interest in anything, not even the simplest of things, such as reading, or watching TV. At one time, my mother had been quite an accomplished artist and loved to paint in oils; now she didn't even want to do the most simplistic of pencil sketches. Little by little I noticed that she didn't even want to talk to any of her friends on the phone, and was beginning to alienate herself with any contact with the outside world unless it was absolutely necessary. When she did, however, she was the supreme actress and appeared completely "functional".
I therefore, suggested to her that she seek professional psychiatric help and it just so happened that there was a clinic over at that very same hospital she was to later be admitted on that June 2005 night. She agreed to it and began seeing not only a therapist at the clinic, but also a Social Worker. However, there was one big major problem that was to arise and impeded any true help that she may have benefited from. My mother never consented to sign a written authorization that would have allowed me any disclosure of not only her protected health information (PHI) but more importantly her "Highly Confidential Information". Little did I know at that time, the battle I was in for in trying to get my mother the proper help she really needed.
Now, while everyone connected with any health care profession is of course aware of the Hipaa Privacy Laws, which was initiated the the U.S. Department of Health and Human Services and as the Health Insurance Portability and Accountability Act of 1996 and later revised several times, I seriously doubt if anyone has read the Laws in their entirety. While the Summary of the Hipaa Privacy Law, published by the United States Department of Health & Human Services (HHS) is a mere twenty-five pages long, the Hipaa Administrative Simplification Regulation Text (D18_Privacy_and_Security_Final_Rule.pdf) also published by HHS is one-hundred and one pages long, and in either case, one has to be, as the saying goes, a Philadelphia lawyer to understand. Neither make for enjoyable, light bedtime reading. Yet believe it or not, I was to become fairly familiar with the Laws since I was rather desperately trying to get proper care for my mother's medical and emotional/psychiatric conditions. (1)
From the years 2001, when my mother first began her therapy, I was trying to have a voice in my mother's care, but without any luck. I knew, for instance, that my mother wasn't exactly great in verbalizing how she truly felt, not even to me, her own daughter, so I seriously doubt if she was revealing her emotional issues with a relative stranger, her therapist or Social Worker. So, the bottom line was that any true psychological problems remained hidden. The only person who recognized that there were a lot of emotional problems that my mother had was myself. I was the one person who could tell just what was going on in my mother's world, and here I was, not being able to say a word because of those Laws. Another frustrating factor, was that unlike most therapists, who see their patients on a weekly basis, my mother's psychiatrist only saw her once every few months. How can a therapist therefore make any kind of proper diagnosis of any emotional problems with such infrequent visits?
The real clincher however, came about, when around the year 2003, my mother began losing a lot of weight. My mother had formerly always had been overweight. Now I was witnessing a drastic weight loss with her, and with good reason: my mother was exhibiting bona fide bulimic behavior. You better believe I tried to alert anyone I could about this known psychological problem; her medical doctor, therapist, Social Worker...anyone! I even wrote very long, lengthy letters, not only to her therapist, Social Worker, but also to the Executive Director of the hospital. All I ever got back, were short, terse replies from the Director of Patient Relations, such as:
"Thank you for your letter of February 3, 2005, regarding your mother.
Please be advised that under the HIPAA Laws and NYS Patient Rights, your mother's clinical care may not be discussed with you.
Thank you for sharing your concerns with us..."
It was then, that due to my sheer utter frustration, I began looking on websites and reading up on the Hipaa Privacy Laws. I began to understand that protected health information (PHI) for the most part could often be "disclosed" to other third party sources, and in particular, relatives, close friends and other caregivers without written consent or authorization. It was the Highly Confidential Information, such as that pertaining to psychiatric cases that could not be disclosed to any third party without a signed, written agreement, like that of a proxy by a patient. In other words, a person could be a virtual siamese twin of a person, but without that signed agreement, information could not be disclosed.
And that was were a lot of frustration came. You see, I didn't exactly want information disclosed to me, I wanted to have the ability to give voice to anyone and everyone who would listen to me about my mother's true emotional conditions acknowledged and known. Who who better than myself, her daughter, who lived with her and saw her behavior on a daily basis would be able to provide such information? However, I was getting nowhere.
However, this is where the hospital was wrong, and maybe no doubt, may have misinterpreted the Laws. Now, I was starting to write letters to various agencies connected with the Hippa Laws including the Office of Civil Rights, and the National Alliance for the Mentally Ill, and I did receive a number of letters back indicating that while information may not be disclosed to me, that my mother's doctor, Social Worker and therapist, should have least in some way acknowledged what I was trying to inform them about my mother and make some kind of investigation, at least, to verify what I had been telling them.
As, stated, I knew my mother suffered from depression, but I also suspect she may have also have been bipolar as well, as once again, when I started reading up on the "symptoms" she had many of the same tendencies: the extremes in the highs and lows of mood swings, and extravagant spending habits. She may also been starting early stages of dementia, and then of course, was her bulimic behavior which I saw on a daily basis.
Well, as it turned out, there was at least an explanation for her bulimic behavior. After my mother was hospitalized on June 8, 2005, and after a battery of tests, it was discovered that my mother had a cancerous tumor in her esophagus. How long she may have had it, is anyone's guess. However, I can't help feeling, that if someone had listened to me when I was first telling of her bulimic episodes, that if some kind of investigation into my claims had been conducted, it could have been determined whether her bulimia was from a psychological standpoint or physiological. In my mother's case it was a medical problem: esophageal cancer. She no doubt began feeling the tumor in her esophagus, it irritated her to eat, and thus her purging of any food she ate.
It wasn't until, what would be my mother's last few months of life, that finally she consented to sign a written authorization allowing me to participate in her psychological, clinical care. You better believe that I went with her, to what would be her last therapy session, for as previously mentioned, he only saw her once every few months, rather than on a weekly basis. And still I had my frustrations. I was conveying anything and everything about my mother's emotional issues, including and especially her depression problems she had had all these years. He then proceeded to say to me, the most ironically stupid thing imaginable to me. "Oh, your mother doesn't look very depressed to me." Sitting right next to me was my mother, with this big, radiant smile on her face. I'm thinking to myself, he's basing his psycho-analytical evaluation of my mother that she isn't depressed, all because she's smiling? Is that why all these years, she was never properly diagnosed with any severe emotional problems all due to the fact, that she was capable of being "normal"? As I said, to the outside world she was the supreme actress and could come across so differently from the true persona I knew her to be.
The therapist did then proceed to give her a very mild anti-depressant, but by then it was too little, too late. In my opinion, she should have been number one, correctly diagnosed of her emotional problems from day one of her very first therapy session and perhaps given medications, years and years ago. And, she might have been properly diagnosed, if she had done one small thing: consented to sign that written agreement which would have allowed me to have not only her information disclosed to me, but for me to participate in her clinical care needs, both medically and psychologically.
I'll never know for sure the full extent of my mother's emotional and psychological problems. Just when I was finally able to have my voice heard about her problems, my mother passed away, not due to her cancer, but complications of pneumonia.
I can't help wondering therefore, if I'm the only one to have gone through the aggravations and frustrations I went through due to the Hipaa Privacy Laws. Yes, I can understand the principles behind them, for in today's society, when everyone is rather "sue" happy, everyone in the health care profession is trying to prevent lawsuits if anything is amiss in protecting a patient's rights. Yet, I can't help thinking that, all in all, a serious reconsideration should be made toward these Laws, especially when in connection with family members. As I view it, the Hipaa Privacy Laws did not protect my mother's rights, but because of the strict policies of what is allowable as far as "disclosed" information, only impeded her getting the proper help she desperately needed.
Websites about the Hipaa Privacy Laws:
http://aspe.hhs.gov/admnsimp/pl104191.htm
http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/privacysummary.pdf(1)
D18_Privacy_and_Security_Final_Rule.pdf (1)
http://www.hhs.gov/policies/index.html
http://www.hhs.gov/hipaafaq/about/index.html
http://www.hhs.gov/ocr/hipaa/finalreg.html
The edited version of my article as it appeared at the Medhunters website
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