Friday, September 21, 2012

2012-09-19_22-51-20_702.jpg
Click to enlarge

What you see above is an entry for a patient in a hospital ledger. But it's not from just any old hospital -- it's from a mental hospital.

The ledger entry is part of an album of materials and paperwork from the now-shuttered Central Islip Psychiatric Center on Long Island. The album is currently in the hands of a PermaRec reader, who took the photo you see above. The reader, who prefers to remain anonymous, is sending me the entire album so I can have a closer look at it. (The story of how he obtained it in the first place is interesting, but I'll save that for another time.)

I'm excited about being able to see the album, which I'm sure will be fascinating, but I'm also a bit uneasy about it. And I'm especially uneasy about the prospect of writing about it. I've wrestled with lots of privacy concerns -- some legal, some ethical -- while telling the stories of the Manhattan Trade School report cards (I addressed some of those concerns here), but medical records strike me as being a lot dicier than report cards. And psychiatric records seem diciest of all.

My general feeling is that old documents always have valuable things to teach us and compelling stories to tell. But if I end up telling those stories, I want to do so in a way that respects the dignity of the people and families involved. For now, as you may have noticed at the top of the page, I've dealt with this by blurring out the patient's surname in the ledger photo. What do you think of that -- was it the right thing to do? Should I have left the surname alone? Or should I not have posted this photo at all, in any form?

I'll have more to say about all of this once I receive the hospital album in the mail. For now, though, it's good food for thought.

14 comments:

  1. Tough call. At some point the privacy issues should clearly no longer be of concern. For example, if psychiatric records from 1750 were found, I cannot imagine this being nearly as worrisome. For people who could potentially still be alive, and who could easily have children or grandchildren who remember them . . . hmm.

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    1. I went through precisely the same train of thought with the report cards. "Well," I thought, "if these were from, say, the 1870s, I wouldn't think twice about publishing them. But they're from the 1920s and ’30s, so...."

      As you know, I eventually decided to publish the report cards. I also got some legal advice to make sure I was on safe ground. (I was.)

      In the case of the psychiatric records, I'm told that they're all from the 1920s-50s, so the patients are likely deceased. But there's still the issue of their families.

      It's worth noting that the Census Bureau makes full census data available on roughly a six-decade delay. As you may have heard, for example, all the date from the 1940 census is now fully available and searchable. The census data from 1950 should be available 10 years from now, and so on. So that's one yardstick to use.

      But again, psychiatric records are a lot different than census records. Like I said in today's entry, all good food for thought.

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    2. US Census records are delayed 72 years. thus the 1940 cebsys was only available this year (2012). However, in other countries such as the UK, Census records are delayed 100 years

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  2. Paul, What if you blurred out the face as well as the last name? I realize seeing the faces is part of the impact of looking at the old records. By blurring it out maybe you can still publish and save some families potential embarrassment at the same time?

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  3. Agreed. Losing the faces does lose some impact, but definitely adds privacy. Maybe a black bar across the eyes? That would mask identity, but leave some facial expression.

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  4. What if you got in contact with the family members of the people in the album.
    As a psych student with a keen interest in abnormal psych I would love nothing more to read about what the patients went through ie treatment, conditions, etc.
    Naturally I have a bias, but if its such a moral/ethical issue maybe contacting the families would be the best bet. I realize that is a large task but it could be used as a learning tool or just a general insight as to how medical/psychiatric treatment has evolved (or not)

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  5. Darby Penny and Peter Stastny wrote _The Lives They Left Behind: Suitcases from a State Hospital Attic_ (Bellevue Literary Press, 2009). I've read the book and was fortunate to see the traveling exhibit upon which it's based. I don't remember which years the materials encompassed, but I do recall that one patient profiled in it died in 1973. Perhaps the authors can advise you on those sensitive matters of confidentiality.

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  6. I'm still trying to get the records of my family member, Martin Farrell, who died at Central Islip Hospital, December, 1904. I submitted every bit of info available beginning with Martin's birth in Co. Roscommon, 1839 to my birth...quite a large packet of info was submitted to Albany in 2014. I have yet to hear anything re the records...entry docs, diagnosis/treatment docs etc. I was under the impression that via state legislation, these records are now accessible to the public. Any help or direction would be much appreciated. Thank you.

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    1. Unfortunately, Martin is not listed in the ledger that I have, and I don't know what else to tell you regarding Albany. Sorry.

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  7. Thank you, Paul. Do you anticipate ever gaining possession of the records for that time period? Earlier on, I contacted Pilgrim hospital as I was told that they had the CIH records. They continued to tell me that Martin Farrell was not a patient at CIH which I took as "we're not interested in helping you" Lo and behold...it was shortly after that when I obtained the death cert from the vitals office in Islip and it confirmed Martin's death there in 1904. Thanks again. GB Jersey Shore

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    1. I have no plans or expectations regarding acquiring additional records. Sorry.

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  8. Psychiatric records are confidential forever. Federal law has adjusted the standards for Federal HIPAA policies but defers to the individual states for final say. If the State standard is more stringent than that is the rule to follow.
    As there is still so much stigma and exploitation of mental health conditions, there is no change slated for the near future. Even though the patient may be long past, the stigma can still effect the survivors, especially in small communities.
    Additionally with mental health conditions being viewed as character deficiencies and fodder for humor and entertainment by small minds and ignoramus's who are entertained by an others malities, the privacy should continue to be forever.
    We live in an unsettling, perverted and voyeuristic/exhibissionistic time, where too many of us need to disparage others to make our selves feel better about our own short comings or we overshare our own issues in an attempt to feel validated.
    Those who suffered and died after living with their traumas, malities and pain, should be left to rest in peace without having their most intimate selves exposed to the world to satisfy someone else's agenda or need to be entertained.

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  9. I'm looking for information on an aunt, entered CI around 1940, her name Myrtle Rorke. She died in 1993 and I am unsure if she was there in her final years. Any chance she's in your book?

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    1. Unfortunately, the records I have are all from the 1920s. Sorry.

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