Does HIPAA Help or Hurt?

Late on June 8, 2005, my elderly mother was taking her bath. Since she had the habit of falling asleep while bathing, I would check her regularly. That night, she was having difficulty in getting out of the bathtub, and though she was thin, I couldn't lift her – it was like trying to lift deadweight.

I went to ask my night owl neighbor for help, and on returning to my apartment 10 minutes later, we found my mother out cold in the bathtub. Unable to awaken her, I called 911. My mother was hospitalized for what may have been a mini-stroke; although, I never learned exactly why she had passed out as she had.

At the hospital, while the doctors and nurses asked the multitude of questions that are always asked when someone is being admitted, I was very vocal in expressing my concerns about my mother's condition. But what I was saying had nothing to do with this incident; it was about my mother's deteriorating medical and psychological conditions, which had been progressing long before that night, and which I felt weren't being properly diagnosed or treated.

The major reason for this situation was, I believe, the HIPAA privacy laws.

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Everyone in healthcare is aware of the HIPAA privacy laws, initiated as the Health Insurance Portability and Accountability Act of 1996 by the US Department of Health and Human Services, but I doubt if many have read the laws in their entirety. The Summary of the HIPAA Privacy Rule is a mere 25 pages long, but the HIPAA Administrative Simplification Regulation Text has 101 pages. One has to be, as the saying goes, a Philadelphia lawyer to understand either. But in my lengthy attempts to get proper care for my mother, I was to become fairly familiar with HIPAA.

For at least one condition had become quite apparent to me during the last few years of my mother's life: She was demonstrating all the classic symptoms of depression. She lacked any kind of motivation, took no interest in anything, not even simple things, such as reading or watching TV. Once, my mother had been an accomplished artist who loved to paint in oils; now she didn't even want to do the simplest pencil sketches. As time passed, I noticed that she had stopped talking to her friends on the phone, and was beginning to avoid any unnecessary contact with the outside world. When she did go out, however, she was a supreme actress and appeared completely "normal."

In 2001, I suggested that she seek professional help, and she agreed, and began attending a clinic at the hospital she would be admitted to on that night in June 2005. She saw a psychiatrist and a social worker. Although I did not know it at the time, as my mother started therapy, something failed to occur that I believe impeded any true help that she may have received: She never signed an authorization allowing disclosure of her protected health information (PHI) or her highly confidential information (HCI) to me.

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From 2001 when my mother began therapy, I tried unsuccessfully to have a voice in her care. I knew that my mother did not express her true feelings well, not even to me, so I seriously doubted if she was revealing her issues to relative strangers – her psychiatrist and social worker, who saw her only once every few months. I lived with my mother, saw the changes in her, and knew what was going on in her world, so I recognized that she had a lot of problems. But I was not able to say a word because of HIPAA.

The most serious issue arose in 2003, when my mother, who had always been overweight, began losing a lot of weight. I saw that she was exhibiting bulimic behavior, and I tried to alert anyone I could about this, sending lengthy letters to her medical doctor, therapist, and social worker – and even the executive director of the hospital. All I ever got back were 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 …

Out of utter frustration, I began reading up on HIPAA. I began to understand that PHI could, for the most part, be disclosed to third parties, particularly relatives, close friends, and other caregivers without written consent or authorization. It was the HCI, such as information pertaining to psychiatric care, which could not be disclosed to any third party without a patient's signed consent.

But I didn't want information disclosed to me; I wanted to be able to tell those who could help my mother what I, her daughter who lived with her and saw her behavior on a daily basis, knew about her situation.

After writing to agencies connected with HIPAA, including the Office of Civil Rights and the National Alliance for the Mentally Ill, I learned that the hospital may have misinterpreted the laws. I received responses explaining that while information may not be disclosed to me, my mother's doctor, social worker, and therapist should have at least acknowledged what I was trying to inform them about and investigated to verify what I had been saying.

For as it turned out, there was an explanation for the bulimic behavior I had been observing since 2003. The battery of tests that accompanied her June 2005 hospitalization showed a cancerous tumor in her esophagus. I do not know how long my mother may have had the tumor, but I can't help but feel that if someone had listened to me when I first tried telling of her bulimic episodes, that perhaps tests could have been conducted to see if the behavior was psychologically or physiologically based.

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In what would be my mother's last few months of life, she signed the authorization allowing me to participate in her care, and I went with her to what ended up the last of her infrequent therapy sessions. I conveyed everything I knew about my mother's emotional issues, especially the depression she had experienced for years. The doctor said, "Oh, your mother doesn't look very depressed to me." Sitting right next to me was my mother, with a big, radiant smile on her face. In my frustration I angrily thought, "He's basing this conclusion on the fact that she's smiling and is able to put on a show when she wants to?" He prescribed a mild antidepressant that day.

Not long after, my mother passed away due to complications of pneumonia.

I'll never know for sure the full extent of my mother's psychological problems, but that isn't the issue. I believe that if my mother had signed a consent form that permitted her information to be disclosed to me and permitted me to participate in her care when she began therapy, her healthcare providers would have been able to provide better care for her.

So while I understand the principles behind the HIPAA privacy laws, I can't help but think they need some serious reconsideration when it comes to family members. For in the case of my mother, I don't feel that these laws protected her, but that they prevented her from getting the help she truly needed.

For More Information on HIPAA: • HHS Office for Civil Rights – HIPAA • HHS "About the Privacy Rule FAQs" • CMS HIPAA – General Information • HIPAA.org

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