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Breta Meria Conole was in a state psychiatric hospital for more than two decades. But the reason why is a family mystery.<\/p>\n
Debby Hannigan, her great grandniece, tried for years to access Conole\u2019s medical records, because she thought they might hold clues to mental health issues in her family, including her oldest daughter\u2019s depression.<\/p>\n
Hannigan twice wrote to the state of New York for the records. The second time she included a supporting note from her daughter\u2019s therapist, who said the details would help \u201cto know their family medical history better.\u201d Both times she was turned away.<\/p>\n
Her experience is hardly unique.<\/p>\n
Frustrated family members and others have been pushing for law changes in New York and other states that would allow the release of mental health records of long-dead ancestors. Their efforts have resulted in access policy changes in some states, including Massachusetts and Washington, but elsewhere reforms are happening slowly or not at all.<\/p>\n
\u201cIt really does piss me off that we couldn\u2019t just say, \u2018Hey, we\u2019re the descendants, here\u2019s the proof, now tell us what you know!\u2019\u201d said Doug Clarke of Alfred, New York, who tried unsuccessfully to get records of a great-grandfather. The records might help explain the depression and bipolar syndrome seen in his generation of his family, he said.<\/p>\n
Here\u2019s a look at the problem and what people are doing about it.<\/p>\n
The cruel history of state mental institutions<\/p>\n
In the 1800s, the U.S. saw a boom in state institutions for the confinement of people with mental illness; every state had at least one by 1890. They were called lunatic or insane asylums, but the reasons for admission ranged from \u201cbrain fever\u201d and \u201cgrief and anxiety\u201d to \u201claziness,\u201d \u201creligious excitement\u201d and \u201ddesertion by husband,\u201d according to historical records.<\/p>\n
Conditions varied, but some asylums gained reputations as brutal, overcrowded warehouses where patients were neglected and restrained. Asylums gradually became psychiatric hospitals, but practices didn\u2019t necessarily improve: In the 1900s, they were the settings of since-discredited treatments including lobotomies and induced comas.<\/p>\n
But staff at the hospitals often took extensive notes, with detailed descriptions of patients and their symptoms. They also took photographs and had other materials, said Dr. Laurence Guttmacher, a former clinical director of one of New York\u2019s state hospitals, the Rochester Psychiatric Center.<\/p>\n
Records at some facilities were likely damaged, destroyed or lost through the years. And the surviving documents may not be well organized or cataloged. But a lot of information still exists, Guttmacher said.<\/p>\n
\u201cWe had this incredibly rich trove of records\u201d at the Rochester hospital, he said.<\/p>\n
How old records can be helpful today<\/p>\n
Such records have drawn the interest of some people whose families are struggling with depression, suicide or other issues.<\/p>\n
\u201cWould you want to know if your grandfather died of a heart attack?\u201d said Dr. Christine Moutier, chief medical officer for the American Foundation for Suicide Prevention. \u201cIt\u2019s information that you can use to understand how vigilant to be.\u201d<\/p>\n
An untold number of patients died at state hospitals, and some were buried in unmarked graves. Some families haven\u2019t been able to establish when a relative died, let alone how, said Alexandra Lord, a historian writing a book about suicide in her family. She struggled to gain access to New York state records about her great-grandmother.<\/p>\n
Guttmacher said: \u201cAbout twice a month I would get a request from a family member to get access to records, to try to learn the story of their families.\u201d State officials told him he couldn\u2019t release that kind of information.<\/p>\n
Patient privacy protections can last decades<\/p>\n
A federal law enacted in 1996 protects the privacy of each patient\u2019s health information, including diagnosed conditions and what care they received. The law, known as\u00a0HIPAA, protects health information for 50 years after someone dies.<\/p>\n
Some states have similar guidelines.\u00a0Ohio law\u00a0allows the closest living relative of a deceased patient to request information from state mental health facility records, and they can be requested by anyone 50 years after a patient\u2019s death. Maine also offers fairly easy access to records dating back that far.<\/p>\n
But many other states are more restrictive. New York allows such records to stay sealed \u201cin perpetuity,\u201d according to a statement from New York\u2019s Office of Mental Health. Records can be released to patients and their immediate family members, but generally not to more distant descendants. They also have been released to medical professionals \u201cwith a justification,\u201d and to historians who agree not to name individual patients, state officials say.<\/p>\n
Massachusetts was similarly restrictive, but a reform push resulted in a new law last year that made public state hospital records that were at least 75 years old, plus records for people dead at least 50 years.<\/p>\n
The change followed\u00a0a report\u00a0from a commission that discussed state institutions\u2019 history of abuse and neglect, including patient sterilizations at a state hospital in Monson. One of the commission\u2019s members, Alex Green, suggested the state\u2019s nondisclosure of records amounted to a \u201ccover-up\u201d of the decades of abuse disabled people endured.<\/p>\n
Now some are working to change New York\u2019s law. This year, state Sen. Pat Fahy introduced a bill that designates records and information relating to a patient who has been deceased for 50 years or longer as historic records \u2014 no longer subject to privacy protections.<\/p>\n
Fahy noted New York\u2019s psychiatric facilities have their own troubled history. She cited the Willowbrook State School, a Staten Island facility where developmentally disabled children once lived in deplorable conditions.<\/p>\n
\u201cIf the person is deceased, there should be an availability of these records to help give the family closure,\u201d said Fahy, a Democrat from the Albany area. \u201cLeaning from our history is one of the best ways to give us insight into how we do better in the future.\u201d<\/p>\n
How to find records on institutionalized ancestors<\/p>\n
Families do have some other routes to information on ancestors\u2019 mental health history, according to historians.<\/p>\n
Online services such as Ancestry.com provide \u2014 for a price \u2014 access to old records, including census information that can reveal if someone was in a state institution at the time a census was taken.<\/p>\n
Veterans\u2019 military pension files have contained details on a person\u2019s mental health.<\/p>\n
Old newspapers were packed with items about residents, including about when people were sent to state institutions.<\/p>\n
There may be many more people interested in family mental health history than is commonly realized, said Ryan Thibodeau, a St. John Fisher University researcher who has been involved in the push to change New York\u2019s law. In the 1950s, at the peak of institutionalization in America, more than 500,000 people were in state hospitals.<\/p>\n
\u201cTheir descendants are everywhere,\u201d he said.<\/p>\n
___<\/p>\n
The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute\u2019s Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.<\/p>\n
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