The Iron Coffin – Eastern State Hospital Cemetery

Phil Tkacz, President of the Eastern State Hospital Cemetery Preservation Project in Lexington, Fayette County, Kentucky, is confronting the same problems with the federal HIPAA Law that many other concerned groups in the United States are dealing with concerning identification of deceased patients of former State Hospitals (Insane Asylums) and Custodial Institutions. What I find incredible is that many states will now be able to access LIVING INDIVIDUAL’S medical records (profiling) in order to comply with the new gun control legislation but the identities of patients who have been dead for over a century cannot be revealed because they lived with a mental illness, epilepsy, or developmental disability. When these folks were buried in the nineteenth century, the states and counties would not provide the money for headstones and instead marked their graves with numbers. In many cases, the cemeteries have been lost with the passage of time or we discover that the cemeteries and the graves themselves were never marked or recorded. The states spent huge amounts of tax payer dollars supporting and caring for these people while they were alive. In the nineteenth century, government agencies actually had budgets. It would have been considered an extravagance for the states and counties to also provide engraved headstones as this dependent group of human beings were considered to be the dregs of society. My question is, why is this particular group of people still being punished for illnesses over which they had no control? When will someone who knows what they are talking about at the Department of Health and Human Services come forward and explain why these people cannot be honored or remembered with dignity? And, why is this group of people being given more privacy protection than the living? Why?

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Phil’s note along with photographs, concerns an iron coffin believed to be from the 1840s that is engraved with a name. The name cannot be revealed because of the HIPAA Law. Why would a family take the time to engrave their loved one’s coffin if they didn’t want anyone to know who that person was? What about the unfortunate individuals who were buried in thin, wooden coffins or just tossed in the dirt wrapped in a shroud? Why can’t we know who they were? Why can’t we have access to their medical records? THEY ARE DEAD AND HAVE BEEN DEAD FOR OVER A CENTURY. The federal government has no problem releasing our medical records, sending them over the internet, and allowing physicians to take home flash drives containing patient information that can be easily accessed or lost. So, what’s the problem? As citizens, we don’t know who is looking into our medical histories or why. This whole issue is ridiculous and the HIPAA Law is a joke! HHS is solely responsible for this fiasco and the stigma that they are perpetuating because no one knows how to interpret the damn law!

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“In 2008 the state announced it would convert the Eastern State Hospital into a community college, BCTCS. At the same time, ESH would move to a new facility. Our group began meeting with all involved in order to discuss what would be done when graves were to be found on the hospital property as construction progressed. University of Kentucky Archeology attempted to do a survey of as many areas as possible to find possible graves, but found none. In January of 2011, I received a call from the state, they said 30-50 graves had been found in an area close to the entrance off Newtown Road & University of Kentucky was going to start exhuming the remains soon. Work progressed slowly due to weather, but was finished by late April 2011.

We met with the state, University of Kentucky Archeology, and others, to discuss what they had found later in 2011. The summary was, the actual number was about 170 remains of former patients had been found and that there were more in the same area but there wasn’t enough money to continue into that area. It was decided by them, that they would exhume those remains when construction got to that area. The timeline for re-burial was about 1 year and we would be kept up to date when necessary.

Fast forward to January 2012. I was told by a reliable source that there was an Iron coffin found the year before and there were photos. Also the coffin has a plaque on it with a name, unfortunately the last name is unreadable in the photo. I contacted the person we had been talking to for updates and asked why this was never mentioned to us. We were told that they kept it from the media to “preserve the dignity of the person in the coffin and to protect their privacy.” Why our group was not told was never explained though. Even the University of Kentucky said they could not release the name.

Attempts were made to have the name released but to this day we are told that the name is protected by HIPAA. A request was made to have a headstone erected over the grave where this coffin will be re-interred later this year and were told, again, that it wouldn’t be legal under HIPAA. We are still trying to find a way to have the name released, our main argument is that A) Patient privacy does not apply, and B) Common sense would tell you that having the name put on the coffin was done in case this happened and it was later exhumed.”

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20 thoughts on “The Iron Coffin – Eastern State Hospital Cemetery

  1. Something just isn’t right with their argument. I have read that HIPAA does apply to the deceased; however, it was written in 1996 and it was intended for people living in the 20th century. It does not make sense to try to apply it retroactively to cases that happened so long ago. Particularly since the census records in those years did record cause of death for people who had died during the census year. And of course those census records have been available to the public for decades.

    Since these were records of a government agency, maybe you could try filing a Freedom of Information Act request (FOIA) to the state of Kentucky. http://www.nfoic.org/kentucky-foia-laws

    Good luck and I will be interested to hear how it turns out.

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    • FOIL doesn’t work with medical records, I went that route. The sad thing is in most cases, we only want the names, dates of birth and death, and location of grave. Names of people buried in a cemetery should not be covered under the HIPAA Law.

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    • I was told in order to find my husband’s grandmother’s grave at ESH we would have to get a power of attorney established. We know she is there somewhere as they handled the funeral. I have a copy of her death certificate. She died in the 1930’s. She was there only 4 months before her death. From what I was told by David’s father before his death, that she had TB when they sent her there. Her death certificate states she also had a manic depression and psychosis. David’s grandfather had taken her there and left her and never returned for her remains.

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  2. FOIA has not been honored for getting the names of beloved dead at Willard in NYS. I think Linda’s comparison to the release of info that the gun control people will have and the LACK of info that people who want to honor and memorialize the dead is a great argument.

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  3. Unfortunately our request through FOIA with the state attorney general didn’t go anywhere. They cited privacy laws that apply to living people and their psychiatric records. The media tried as well but didn’t have any luck. Maybe with the reburial coming up this spring, we might get some answers.

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  4. What are they hiding? Are they afraid that if these people are identified that the tryth about what happened at Eastern State Hospital will finally be known? HIPPA is a convenient cover story to keep the disgrace of bad record keeping and undignified treatment of these poor souls hidden. Maybe those claiming they can’t give out the info due to the HIPAA law should volunteer to never have their names on their headstones.

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    • I wish I knew why they were so against discussing the issue with us. The company that runs the hospital investigated who took the photos and sent them to me. There were threats made of firing people, even though it was a construction worker, not obligated by HIPAA. That wasn’t a surprise though, when I took photos of work being done with the 170 graves they had found, I was told I wasn’t allowed to by someone from UK. He said it was, you guessed it, a privacy issue. I like your idea Russell, I might ask them that next time I talk to one of the state people!

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    • Thanks, Russell. All these problems stem from the Privacy Rule which I think was written for the living not the dead. I also think the people who have the records don’t want to bothered with compiling the information.

      “The Office for Civil Rights enforces the HIPAA Privacy Rule, which protects the privacy of individually identifiable health information; the HIPAA Security Rule, which sets national standards for the security of electronic protected health information; and the confidentiality provisions of the Patient Safety Rule, which protect identifiable information being used to analyze patient safety events and improve patient safety.”

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  5. Something to keep in mind, that most states wont tell people, is that records allowed to be viewed by the public prior to HIPAA must stay available. They can’t go back to old public records and say that they are now sealed. Also, one person I talked to that denied us records did say that if a facility shutdown prior to a certain date (late 1980s, I cant recall the exact year), those records don’t fall under HIPPA. In Kentucky they release death certificates publicly once they are 50 years old. They also have old commitment records from every county available, and those go into a lot of detail. The state has yet to prove to us that a name on a coffin falls under any part of HIPAA or state restrictions. I think it’s a matter of embarrassment. It’s interesting to see what some states have done, like Minnesota. They go out of their way to make information available, maintain cemeteries and even made a public apology for what happened in the past.

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  6. I had a meeting about the reburial for Eastern State the other day. It reaffirmed my opinion of politicians and state employees. While I was asking about the issues concerning the new HIPAA rules and the name on the coffin (I’ve done my research) , a certain employee of the Cabinet for Health and Family Services (Chuck Ammons) rolled his eyes and played with his iphone while I made my point at was given some sarcastic quotes. On the brightside of the issue, I can use this when the media asks our group for comments.

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    • Wow! People like that ought to be fired! But, then again, they know better than us, don’t they? I have to say that I was treated with respect by Senator Joe Robach’s staff. They introduced a bill at my request and never rolled their eyes. As a matter of fact, they were shocked that the NYSOMH wouldn’t give me the names. These issues take so long to be resolved, sometimes I want to give up but I’m in so deep and have spent so much time that I have to keep going. Thanks, Phil!! Maybe you can report this guy. I’m sick of elitists!

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      • I’m sure he (Chuck) was hired by someone with political connections as a favor. It’s obvious he has no business in a state department that deals with mentally ill people. I think your point illustrates that most politicians don’t know how bad it is until they are contacted. They probably assume it’s being addressed at a lower level. That’s why I encourage people to call or email their State Rep or Congressman. As a certain congressman told me, “no state has the right to keep your death a secret”.

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