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The Origins of My Mother's Mental Illness
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Massachusetts Psychosurgery Task Force Report (1977) - part 1

6/23/2016

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I was able to get a copy of a Task Force report from 1977. The Task Force was assembled to propose regulations for conducting psychosurgery in the state. There had been some controversy in the early 1970s when Vernon Mark and colleagues received a grant to set up a psychosurgery clinic at Mass General Hospital (Harvard) to investigate violence and brain function. They linked violence with the race riots of the time and their racist rhetoric and proposal to screen and conduct psychosurgery on the brains of "violent" individuals ignited a strong response from advocacy groups and advocates. Vernon Mark and colleagues lost their grant funding but continued to perform psychosurgery on patients with mental illness. It was estimated that at least 30 patients per year received psychosurgery but the number was really incalculable because there were few regulations and surgeons in private practice were also conducting these surgeries. This post deals with this report.

First two pages of the report. 

Picture

A couple of short videos of me starting to read the document. I talk about the Task Force Chairman, Dr. Alan Stone. I am trying to figure out if he is a "good guy" or a "bad guy." He was a psychiatrist and lawyer / professor at Harvard University. 

My notes on the task force report. 


​​In 1977 Massachusetts had a taskforce led by Alan Stone review regulations and practices for psychosurgery in the state.
 
The task force broke into majority and minority opinions. Their disagreements were so irreconcilable they drafted a majority and minority report. The biggest point of contention was whether there should be an outside doctor appointed to approve psychosurgeries for every case in the state. The minority group vehemently disagreed with this stating there was no precedent in other areas of medical practice and that it would destabilize the doctor / patient relationship.
 
For the most part the majority group saw psychosurgery as experimental, with little evidence, and they make the recommendations for regulations because that’s what they were asked to do (not because they agree with the use psychosurgery). Their feeling was that there was so little evidence for benefits of psychosurgery in the literature and in practice that it should ALWAYS be deemed investigative / experimental. In doing so, then every hospital conducting psychosurgery would have to follow human subjects review protocols. The regulations proposed by the majority cover the requirements for hospitals doing psychosurgery. Because the majority called it experimental the regulations set forth by the majority say there has to be a two tiered review process before conducting any psychosurgery. The staff qualifications must be reported to the dept of mental health. The patient’s history needs to be submitted to the dept. of mental health.  Get baseline behavioral information on the patient (because it is designated as experimental).  Informed consent. Basically Alan Stone created an argument that psychosurgery is not just a “procedure” it is experimental and falls under the same requirements / regulations as research studies. The majority proposed regulations included the appointment of a physician to exercise the right make the decision about a psychosurgery.
 
The minority report has a different tone. They state they agree with many of the conditions in the majority report they feel humane and scientific research can best proceed using the standard guidelines for medical investigation and human studies. They strongly disagreed with the notion of appointing an outside physician to have control over clinical decisions (i.e., psychosurgery) for a patient. They said the decisions about clinical care should remain between the physician and patient. Many of the other regulations were similar with regard to informed consent and hospital regulations. The tone of the minority report seemed to support the use of psychosurgery and leaving control in the hands of the doctors.
 
Final regulations left me with a few thoughts.
  1. were these regulations adopted mass law 220.12
  2. it seemed like approval time was not fast. Maybe that explains why mom said she was in the hospital for 6 weeks. If she did have psychosurgery, it wouldn’t have likely been just taken in, given surgery, and sent home. It seems like it would take time (one part of the regulations said 30 days) to obtain approval. It had to be a team of specialists that agreed (neurologist, psychiatrist, psychologist, social work). They needed baseline data on behavior. They needed medical records and at one point it was proposed that the staff talk with family members. So this makes me think that maybe mom was taken to the hospital. Held for observation. The doctors maybe talked with dad about the possibility of psychosurgery. They ran tests. Maybe they called the relatives prior to the surgery and they too were involved in the process. If that were the case Aunt Brenda would know. HOWEVER, this seems like a BIG secret and a BIG mess up. It was interesting to me that when dad had his stroke because of his brain tumor they took him to St. Lukes and he immediately found another hospital. And, when I was in a psch hospital at 17 and they wanted to keep me and medicate me I made him agree to have me released against medical advice. I also wonder why dad stayed with mom so long. I know I’m just putting pieces together based on limited information but some of this seems plausible. I THINK THERE IS DEFINITELY MORE TO THIS STORY. I think it did go on for 6 weeks like mom said. But, I think she was hospitalized BEFORE the surgery and for a shorter period after. Where mom said she had surgery “died” and was on her way to heaven when she woke. I think she was held under psychiactric care and had tests done, observed. I think they were getting dad’s consent and then the relatives were called BEFORE the surgery. I think they knew and agreed and then they did the surgery and she recovered for 2 weeks – I don’t know why I think her recovery would have been so long, that isn’t consistent with things I’ve read about recovering from these kinds of psychosurgery. It’s just that she didn’t come back home with a shaved head and bandages. Her hair had grown about half an inch. What was the story she always, always retold me. She said I was so afraid I would tell people she had a shaved head. She said she’d scare me as a joke “don’t tell anyone momma had her head shaved.” She said she would pretend to be upset when I got home “who did you tell about my head.” And, one day I had told the teacher and I came home crying. She thought that was so funny.
  3. The Mass Dept of mental health was in charge of the hospital (and patient0 records –would that information be available?
  4. The proposed regulations said not to do these on people under 30 b/c their brain was still growing—there were exceptions with pretty subjective criteria.
  5. Other orgs to follow up with: American Board of Neurological Surgery, Dept. of Public health (certified hospitals for psychosurgery), Department of Mental health commonwealth of Massachusetts.
  6. Task force committee member names (research if they were affiliated with New Bedford Hospitals in any way). One of these task force members was the superintendent of worchster state hospital.
    1. Majority
i.Irving Allen, M.D.
ii.George Annas
iii.Sissela Bok
iv.Edward Hanfy
v.Alan Stone
vi.Richard F. Thompson
vii.Laurence Tribe
viii.Constance Williams
  1. Minority
i.Dietrich P. Blumer, M.D.
ii.Shervert Frazier,Jr. M.D.
iii.Bernard Levy, M.D.
iv.David J. Myerson, M.D.
v.Leon N. Shapiro, M.D.
vi.William H. Sweet, M.D.
**2008 article by alan stone brings up the fact that the mass dept of mental health and all the other MDs on the task force rejected having an outside appointed doctor to review the case. This became the standard in other states and the 2008 article provides a compelling argument for protection of patients by having an outside doctor reviewing the process. 
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    The Project

    
    ​​In this serialized investigation, I research the possible origins of my mothers severe and chronic psychosis. My mother died of leukemia in early 2009. She had lived with severe mental illness (depression, anxiety, psychosis) almost continuously since 1970, the year my mom underwent brain surgery. I believe  my mother's brain surgery caused her to become permanently 
    ​psychotic. There is evidence that my mother had been a different person prior to the surgery. However, that evidence rests in memories and relatively few family artifacts--neither of which tell the whole story. My hypothesis is that my mother underwent a lobotomy that caused brain damage and resulted in personality changes. My sister and brother are helping me with research and reflection about what happened to our mother. I will post video diaries, journal entries, archival materials, and interviews on wattpad and also on my website donnabarrowgreen.com.

    You can find out more about me on my
    Amazon Author's Page
    amazon.com/author/rosegluck


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