Tuesday, 20 November 2018

Eugenics & the 2014 Murphy Bill

BonniebelleBy Bonnie Schell (Originally posted here)

Sterilization of the “unfit” and proposals to help families with a mental health crisis may seem to be disparate topics, certainly one historically more repugnant than the other. Yet, the two “solutions” have several things in common:

  • The absence of choice by the individual affected
  • The paternalistic assumption that those with power know what is needed
  • Both serve the interests of families, caretakers, guardians, and conservators
  • Both proceed out of good intentions.

Both the Murphy Bill (H.R. 3117 of 2014) and the eugenics movement were unfortunate solutions to real problems. What are the problems of the family with a diagnosed mentally ill “loved one”?  Relatives of a family member in emotional and/or cognitive distress can’t get a crisis response for a relative who is currently or likely to be violent toward self or others or likely to deteriorate until the family member can no longer care for himself. They can’t get the family member to admit she is ill or to take recommended psychiatric medications. They are unable to find out the whereabouts of the family member in the “system;” they don’t know if their family member has been mugged on the street or is “safe” in a hospital bed. They can’t get civil and human rights organizations to acknowledge the rights of the family. They can’t get timely professional services (due to personnel shortages and Utilization Management Departments of Managed Care Organizations) and instead are offered peer services by persons they believe to be under educated and once “crazy” themselves who mislead their family member to hope for recovery.

The intent of the Murphy Bill is to offer solutions to these problems.  To do this confidentiality and choice have to be compromised. “This bill has great intentions,” writes Morgan Shields. “However, it seems to be driven by fear, and is constructed to persuade the public that this bill will protect them from violence…this bill would impose treatments that are not reliably effective and are possibly harmful.” (The Murphy Bill: Ethical Considerations for the State of Mental Health Care and its Consumers,” Harvard Public Health Review, February, 2015)  Likewise, Ian R. Dowbiggin in Keeping America Sane, (Cornell Studies in the History of Psychiatry), tells the story of eugenics in North America as one of human fallibility, of good people advocating abuses of basic human rights for the very best reasons.

A sterilization  bill around 1920 might have been called Helping Families and the State with a Reproduction Crisis, precipitated by a fear of immigrants and crime. This bill would have addressed the problem of getting women, not men, to do family planning. It would have addressed the difficulty of getting jobs, housing or personal care for needy people (before SSI, SSDI and The Great Society). Disabled people included those with mental illness, mental retardation (idiocy), epilepsy, those with vision, hearing and mobility impairments, and those who masturbated. The offspring of these “unfortunates” were often exposed to neglect, trauma or domestic violence. Disabled women did not stay in marriage relationships. Some took to their beds after childbirth and did not care for their babies. Families worried that there would be no one around to care for the offspring. All of these conditions were believed to be hereditary and to cause degeneracy. By far most sterilization in the U.S. was performed in psychiatric hospitals and homes for the intellectually challenged (Philip Reilly, The Surgical Solution, John Hopkins Press, 1991). Sterilization was not banned from correctional facilities in CA until September 2014.

From the few records that still exist, 62,000 people were sterilized between 1920 and 1979. “Mentally ill patients were sterilized without their consent, and sometimes without their knowledge, while they were contained in hospitals so as to prevent them from interacting or mating with ‘normal’ people” (Robert Whitaker, “Deinstitutionalization and Neuroleptics" (2009) in Y. O. Alanen, A. S. Silver, et al, Eds. Psychotherapeutic Approaches to Schizophrenia Psychoses: Past, Present, and Future, p. 346-356). As late as 1995, I knew a lovely woman named Clara who was diagnosed with schizophrenia and loving another teenager. She became pregnant. Upon delivery the baby was placed up for adoption because Clara couldn’t hold a baby bottle properly and the young woman was given a hysterectomy for “female problems”—a common diagnosis of many homeless and mentally ill women in the Bay Area of CA. Clara went to work as receptionist in a drop-in center, played the cello in the University orchestra and gave up smoking. Clara never married or was hospitalized after age 22. She “divorced” her parents for ignoring her hard work on her own recovery and testifying behind her back at NAMI meetings that thank goodness she couldn’t have children and was a Clozaril success story—until she had bone marrow failure.

While the solution of the Eugenics Boards across the country was forced sterilization, since deinstitutionalization the solution for insufficient community programming has become forced inpatient or outpatient treatment and compulsory disclosure to families of the diagnosis and treatment details of their family member. This is only true for mental illness and sexually transmitted diseases. (Partners must be notified). No one would bat an eye if a white male with late stage cancer or heart disease asked his doctor not to disclose his diagnosis or prognosis to his children or even his wife. Long before HIPPA, this confidence was part of the doctor-patient relationship in which the family does not have access to information about the patient unless he consents.

People with high cholesterol, blood pressure and/or out of control blood sugar levels, obesity or chronic alcoholism cannot be forced to take medication or change their lifestyle even though they may die prematurely. In the case of mental illness, treatment in the public system  leads to death 10-35 (depending on source of data) years before the general population.  Dr. Peter Weiden, professor of psychiatry at the University of Illinois College of Medicine, maintains that “Society would not tolerate 20 years of lost life expectancy for other groups, even those that suffer discrimination like Latino or blacks or gays…. We are complacent because the lives of those with severe mental illness do not matter to us.” (As quoted in “Having a Severe Mental Illness Means Dying Young,” Huffington Post by Allen Frances, professor emeritus at Duke University and chairman of DSM-IV committee)

The projection  that 1 out of every 5 Americans needs mental health treatment is a boon for the pharmaceutical industry. At the same time fewer medical students choose psychiatry as a specialty because it has become the practice of prescription writing. Most psychiatric medications are now prescribed for people without a diagnosis, particularly those in nursing homes and foster care (Deborah Brauser, Medscape Medical News, September 12, 2013). The more Americans get treatment, the more money Big Pharma makes.

It is instructive sometimes to follow the money. Even the birth control pill development was motivated by a desire to prevent mental illness from being passed down in families. Margaret Sanger introduced Katherine McCormick to Gregory Pincus and his research on fertilization and hormones and development of a contraception pill. McCormick funded Pincus’s work because her husband Stanley had schizophrenia. When he died in 1947, his vast fortune for the invention of the McCormick Reaper went to Katherine who never wanted his malady to be passed on. The birth control pill was licensed in 1960. Not only did the Pill allow women, for the first time, to plan the course of their lives, but the pill, patch and implants have been used as a condition of welfare, food stamps, public housing, treatment programs, and parole.

Pharmaceutical companies, some of the largest corporations in the US, heavily fund the National Alliance for Mental Illness, which began as a family-focused organization and is now a major lobbyist for the Murphy bill. Big Pharma has contributed to Tim Murphy’s campaign and that of other congressmen who signed on as sponsors. Why do these corporations, several convicted of personal injury and illegal marketing, care about the Murphy Bill or helping families in mental health crisis? The U.S. mental health system, unlike most of Europe, operates under the Medical Model which says that mental illness is the result of chemical imbalances that a lab can’t measure as yet and can only be treated by psychiatric medications. No one is sentenced by a court to forced talk and listening therapy or forced psychosocial rehabilitation programs or forced trauma counseling.  One side effect of anti-psychotic medications besides weight gain, elevated triglycerides and cholesterol, extremely dry mouth, gum disease and tooth loss (a doughnut is easier to eat than raw carrots or apples) is hyperprolactinsemia or sexual dysfunction. Even psychiatric medications have the same effect as forced sterilization.

It is a weakness of an entire society that we prioritize medical solutions over social reconstruction. Patients with medication and talk therapy fare far better than those with medication alone. From my personal observations, patients placed in safe “Housing First” environments have faster positive outcomes than those on medication alone. Patients with an apparent need for repeated Electro Convulsive Therapy do less well over time than those afforded trauma therapy. The Consumer Movement and some renegade psychiatrists propose that the medical profession ask “What has happened to you?” instead of “What’s wrong with you?”

The public discourse in the wake of acts of violence by individuals both with and without mental health treatment weighs the cost of mental health treatments and hospitalization against other human needs. Indeed, it was probably the costs of implementing the Murphy Bill and not its detractors that kept it from coming to the floor of Congress for a vote. School mathematics books in Nazi Germany posed such questions as: “The construction of a lunatic asylum costs 6 million marks. How many houses at 15,000 marks could have been built for that amount?” (Brochure, United States Holocaust Memorial Museum). State legislatures try to prioritize the needs of disabled people against housing and education costs, unemployment benefits, raising the minimum wage, and cleaning up coal ash spills.

Is the solution to the problems addressed by the Murphy Bill a moral one? Most citizens are familiar with the Golden Rule. It is shared by many religious traditions. The traditional Golden Rule in its negative form says “Do not impose on others what you do not wish for yourself.” Neither sterilization nor forced psychiatric treatment has ever been applied across all gender, race and class lines. Proponents of sterilization or the “abnormal” and forced treatment can cite some cases where the solution was the perfect “fix”, instead of outreach, compassion, and information.

The Principles for the protection of persons with mental illness and the improvement of mental health care adopted by the United Nations General Assembly of December 17, 1990 addressed diagnosis and confidentiality and autonomy. Principle 4 says “Family or professional conflict, or mere conformity with moral, social, cultural or political values or religious beliefs prevailing in a person’s community, shall never be a determining factor in diagnosing mental illness.” Principle 6 states that “The right of confidentiality of information concerning all persons to whom these Principles apply shall be respected.” “The treatment of every patient shall be directed towards preserving and enhancing personal autonomy” maintains Principle 9.

It was Adolf Hitler and German nationalism that willed all disabled people be exterminated  to make sure disability would be wiped out of the Aryan race and to rid society of the burden of caring for the “less fortunate.” Poverty was characteristic of genetic inferiority.  His Eugenics methods and theories came from a manual put out in California (Edwin Black “Eugenics and the Nazis – the California connection” San Francisco Chronicle, November 9, 2003). Few human beings are not horrified by the extent of the Holocaust. We see this in retrospect. Yet it is possible that we look with narrow angle vision in the present at forced treatment for emotional and cognitive disturbances. It would have been a great loss if Winston Churchill, Virginia Woolf, John Nash, Lionel Aldridge, Meera Popkin, Nijinsky, Alan Turing, or Emily Dickinson and so many others had been subjected to forced treatment.

“A person with a mental illness can be committed in most of the 37 states that have Involuntary Outpatient Commitment laws without any finding of imminent dangerousness to self or others. Even without any dangerousness requirement, a number of states explicitly allow police forcibly to pick up and detain people for mental evaluations if they have failed to comply with any provision in an IOC order, “particularly black males” (“Forced Treatment Policy Documents,” 2014, Bazelon Center for Mental Health Law). It is believed and frequently said in print that depriving people of their liberty surely has been shown to be effective and in the individual’s  best interest. Sponsors of the Murphy Bill and leading advocate groups funded by pharmaceutical companies seem to believe that this is true, despite evidence to the contrary.

The mental health system as a whole is a poor judge of its performance. Outcome studies on individuals involuntarily committed do not look at the individual’s well-being a year or two after the commitment is over. In a mid-1990’s study at Bellevue Hospital in New York City, before Kendra’s law, “on all major outcome measures, no statistically significant differences were found between the two groups -- IOC and control groups” (Steadman, H. et al, Assessing the NRC Involuntary Outpatient Commitment Pilot Program, Psychiatric Services. 52(3): 330-336). Outcome measures included re-hospitalization, arrest, quality of life, symptomatology and treatment compliance. The RAND Corporation in 2001, studying IOC in eight states found that “There is no evidence that a court order is necessary to achieve compliance and good outcomes” (The Lancet, Early Online Publication, 26 March 2013). The literature when reviewed showed that “alternative community-based mental health treatments can produce good outcomes for people with severe mental illness.” Comprehensive services are effective, not IOC. A field study in North Carolina by Jeffrey Swanson and colleagues found that IOC was effective only if combined with other intensive treatment, but the study is cited as proof that IOC is effective by itself. The 32 million budget for New York’s Kendra’s Law in 2005-06 included an additional $125 million for expanded case management services and other supports. IOC and AOT (Assisted Outpatient Treatment) are proposed in the Murphy Bill as a desperate means of preventing violence by mental health patients even though research shows they are more likely to be the targets of violence. The leading expert on Kendra’s law, Dr. Swanson of Duke University told Behavioral Healthcare that people who understand what outpatient commitment is would never say this is a violence prevention strategy (“AOT cost effectiveness study stirs national debate,” August 22, 2013 Behavioral Healthcare).  Failing to pay attention to these studies is an example of motivated reasoning (wanting to believe that the things we do make a difference) which was true of the solutions by psychiatry and institutionalization in the past: bleeding, sweating, vomiting, electro therapy, focal infection, the spinning chair, ice baths, insulin and malarial comas, lobotomies.

Failing to pay attention to studies that show IOC and AOT do not achieve the results sought or are not the only means of doing so is a confirmation bias (the tendency to look for evidence that supports what we think we already know and to ignore the rest.) There are alternative solutions to family problems in a Mental Health crisis. For instance, families could be told if a “loved one” is safe and off the streets. It is much easier for the provider to simply refuse to communicate with families at all and not even ask the patient if they have permission to communicate with family members.  Hospitals need to find beds for those patients trying to take care of themselves by seeking voluntary treatment or safety, the original meaning of “asylum.” Better gun control laws could be enacted. Each problem family members face needs to be unpacked rather than seeking one sweeping solution that has the potential like Eugenics to snowball into future tragedy.

If the American public moves with fear and hysteria into supporting the new Murphy Bill, including its budget cuts to rights organizations, grants for recovery programs, and its medical model treatment bias, we may someday look back in shame on the means of forced treatment we use to justify public safety. While those with physical disabilities struggle with barriers of architecture, those diagnosed with mental illness face barriers of attitude. Sterilization, mental hygiene, and forced treatment (including restraints and seclusion) and exclusion from mainstream society speak to our narrow concept of human diversity. The widest range of human variations in race, genders, ability, socio-economic status and interdependence is part of democracy's promise of social justice for all.



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