Sufficient Scruples

Bioethics, healthcare policy, and related issues.

March 16, 2008

A Long Night’s Journey Into Day

by @ 9:34 PM. Filed under Autonomy, BioLibri, Biotechnology, Child-Rearing, Disability Issues, General, Global/Community Health, Healthcare Politics, Medical Science, Personhood, Provider Roles

There is a terrible tension in healthcare – medicine, especially – between the use of expert knowledge to serve and heal those in need, and its use to aggrandize those with the knowledge and to control, mold, dictate to or torture those who fall into their hands. Knowing what can help another can easily be mistaken for “knowing what is best for them”, and historically has been so mistaken throughout the entire history of medicine as a profession. Today, it’s hard to hear the phrase “Doctor knows best” without an ironic smirk – the same smirk we conjure up for the parallel slogans of wrongheaded patriarchal oppression “Father knows best” and “Trust your government”. But it was not long ago that that slogan was the entirely literal creed of the most respected profession in Western society, and the work of challenging that creed and establishing the primacy of patient values and autonomy was lengthy and hard-fought. Its path was marked by the graves – quite literally the graves – of too many martyrs.

The most entrenched redoubt of medical power (though least well-grounded in research and knowledge) was psychiatry. Not only did the head-shrinkers lay claim to the most occult knowledge of human functioning and health, but they stood against a patient population that was inherently and societally almost unable to defend itself. Members of, possibly, the most severely and unsympathetically stigmatized stratum of society, mental patients were given no credence, and often had no recognized legal standing, to assert their own values and choices in treatment. And it is true that in many cases, patients with mental illness could not in fact act for their own interests or competently manage their own treatment and caretaking. But the presumption that no such patient could have a valid opinion about their own care, coupled with the prejudice that they were unfit for “normal” society, and likely dangerous, meant that virtually anything could be done to anyone, if advocated by a doctor armed with a diagnosis of mental illness. The things that were done were in many cases almost unthinkable.

Howard Dully spent over 40 years thinking about what was done to him. It took him a full life of hardship and failure to finally understand his own fate, and to come to terms with it. That anyone could have survived, let alone found peace and stability, after having lived his story, is an amazement in itself.

Dully is the author (with a professional co-writer) of My Lobotomy: A Memoir. The subject of the book is exactly what the title suggests. The story it contains is heartbreaking.

Dully’s life is difficult to summarize, except to say that it was unremittingly harsh almost from birth. Dully was born in California in 1948; his father was a hard and unemotional man who was driven to work excruciating hours, sometimes at as many as 4 or 5 low-skill physical labor jobs at the same time, partly by the need to support his family, partly by his own obsessive work ethic. Howard grew up a big kid (he’s now 6’7″, 350 lbs) who picked on his younger brother; when he was 4 his mother died after giving birth to a baby brother with a severe neurological deformation – the baby was placed with relatives and never spoken of again within the family. Howard and his family bounced around various friends’ and relatives’ homes as his father struggled to earn a living, and Howard suffered constantly both from missing his mother and from the severe discipline he suffered in some of these homes. Things really got bad when his father married again, to a woman with two sons of her own. Dully claims that she simply resented and hated him; from reading both his own stories of his home life, and some of his doctors’ notes, it is easy to believe he is correct. Howard, in the meantime, was legitimately a handful for any parent: he was apparently flightly and unreliable to an extreme degree, was aversive to school work, discipline, and hygiene, and often fought with his brothers, though they had a generally good relationship. As he got older he began doing stupid kid pranks – shoplifting and stealing items from cars, and playing hooky. As a huge and growing boy, he was constantly hungry, but was not allowed to eat between meals and was beaten for taking snacks. His step-mother also had some sort of obsession with her furniture and household trinkets, and would beat Howard for touching anything in the house, sitting on the parlor furniture, or using the front door. His step-mother would beat him for any infraction, and for things that weren’t infractions; later his brothers confirmed that she did indeed beat him for things she did not mind when done by her own sons, and would rave at him for no reason at all. When his father got home, he would get another beating – his father made him choose a piece of firewood to be beaten with, and Howard developed the skill of picking ones that were flexible enough to hurt less but strong enough not to break (which would encourage his father to continue the beating with his bare hand). Between his actual behavioral problems, his pre-adolescent awkwardness, the fact that his step-mother did seem to truly want him dead, and his father’s absence and emotionally and physically violent treatment, Howard seemed doomed to a life of misery no matter what might have happened. What actually did happen is unbelievable.

Howard’s step-mother apparently conceived the idea that she could get rid of Howard if she got the weight of professional opinion on her side. She began visiting a series of psychiatrists to complain about her son’s behavior, but none of them would agree he had to be institutionalized or removed from the home. Several wrote consulting notes to the effect that they were convinced her harsh treatment was the problem and that she should moderate her behavior toward the boy. She moved from doctor to doctor trying to find one that would agree with her. Finally she stumbled onto Dr. Walter Freeman.

Freeman was the pioneer, in the US, of the new treatment of psycho-surgery. He actually coined the word “lobotomy”, and popularized the use of that treatment in this country. He was the first US physician to see the procedure, after it was developed in Europe just before WWII; Freeman brought it back to the States and traveled the country in specially-modified vans or station wagons that he called his “Lobotomobiles”, giving demonstrations of both electro-convulsive therapy (using a machine he built himself; when it broke down, he simply held the bare wires against the patient’s head for as long as he felt was appropriate, with no mechanism for monitoring voltage or current) and lobotomy. According to the Dully, relating reports of academic researchers who studied Freeman’s career, Freeman was a constant self-promoter and showman: he would perform several lobotomies in a day, every day, in front of medical audiences, liked to demonstrate how easy it was by sometimes using ordinary household implements rather than surgical tools, and developed a signature two-handed bilateral technique in which he would insert “leucotomes” (the lobtomy knife) into both lobes of a patient’s brain and then simultaneously jerk them both through the tissue with a flourish. At times, his death rate ranged upward of 20%. Nobody seemed to think this was cause for alarm. Patients were operated on without their own knowledge or consent, and authorization was freely obtained from courts or patient guardians after reassurances from Freeman that the procedure would solve all the patients’ problems. Often, no precise psychiatric diagnosis was attempted before the lobotomy was performed; lobotomies were used for conditions ranging from headaches to schizophrenia. More than a few were performed on minors, even pre-teens; there were questions about such cases, but little organized opposition. Freeman was profiled in popular magazines, and sometimes hailed as a god, delivering sufferers from their misery. There were many detractors in the medical community, but the great benefit of lobotomy was that it often made patients docile enough to live with their families without monitoring, meaning they could be discharged from the large state mental institutions that were commonplace then. This made the procedure wildly popular with the managers of those institutions, whose patients had no effective representation to oppose the treatment plans made for them by others.

After a few years, Freeman heard about, and again pioneered, a variation of the lobotomy procedure called “trans-orbital lobotomy”, often referred to as “ice-pick lobotomy”. In that procedure, a long, sharp, thin instrument was pushed along the eyeball parallel to the nose, and through the back of the eye socket (“orbit”) into the skull, and into the frontal lobe of the brain. The instrument could then be levered back and forth, and up and down, to tear through the frontal lobes and disrupt their neural circuitry. There was no method for visualizing the exact placement of the instrument in the brain, or the location, depth, or extent of the lesions created; the method was simply to stick the metal rod in through the eye socket and wiggle it back and forth to tear the brain tissue randomly. The effect was almost as dramatic as an open-skull lobotomy, but there was no external wound, and it could be performed under mild anaesthesia. The procedure could be done in an ordinary doctor’s office, and took about ten minutes. In many cases, the surgical instrument used was, in fact, an ice pick. (Freeman’s personal lobotomy instrument was labled “Uline Ice Company”.) Patients were sometimes sent home afterward in a taxi cab.

Freeman began popularizing the trans-orbital lobotomy, sometimes performing as many as two dozen procedures a day on patients in mental institutions and hospitals. In some cases, patients were operated on against their consent; after the procedure, they lacked the drive and wherewithal to sue. After some years traveling the country in his Lobotomobile, he finally settled in the South San Francisco Bay Area, near where Howard Dully’s family were living. Eventually, Dully’s step-mother asked to see him.

Freeman met with her a number of times over a period of two months, duly recording her wild stories of Howard’s unmanageable behavior (some of which later turned out to be pure fabrications – such as the story that he had beaten his brain-damaged baby brother almost to death). From the beginning the step-mother openly solicited some kind of dramatic professional intervention. Freeman hesitated at first, insisting he would have to meet the patient and interview the other family members before coming to any conclusion. (What seems incredible is that he began formulating treatment plans with the mother for weeks before ever once meeting Howard.) He interviewed Howard’s father one time; the father gave a much more balanced report of Howard’s behavior, but Freeman didn’t pick up on the clue. He began to meet with Howard himself, and found him reasonably normal though somewhat uncommunicative (who wouldn’t be?). But he kept meeting with Howard’s step-mother, who still filled him with tales of how afraid she was of Howard, how her other sons were afraid of him and were constantly beaten up by him (they deny this), and finally how Howard had beaten up his baby brother in infancy (his entire family denies this – and note that the step-mother was not part of the family at that time). Freeman seems to have accepted everything she said, and viewed Howard’s truancy and other bad behavior through this fictionalized and delusional lens. After four meetings with the step-mother, only one meeting (ever) with Howard’s father, and four visits with Howard himself, Freeman recommended that they should attempt to “change his personality” with a trans-orbital lobotomy. Howard’s step-mother immediately agreed, and took the papers home for his father to sign, which he did without ever speaking to the doctor again. Freeman cautioned the parents not to tell Howard what would happen – only that he would be admitted to the hospital for “tests”. Howard excitedly looked forward to his night in the hospital, because he had heard they gave you Jell-O there. And they did. It was two weeks after his 12th birthday.

Freeman lobotomized Howard the next day. Howard has no memory of any of the events of that day. He contracted a fever and an apparent infection (Freeman was infamous for not sterilizing his instruments before surgery; you can see, in the actual photograph of Howard’s procedure,¬†[see photo at end, below the jump]¬†that he is not wearing gloves), but recovered soon enough.

The rest of his life was a disaster.

To make a long story short, the lobotomy did not placate Howard’s step-mother. She continued to persecute him, and to complain to Dr. Freeman about Howard’s behavior. Freeman claimed that Howard was improved after the surgery. His step-mother began demanding that he leave the house – at the age of 12 – and so he was sent around to a variety of relatives and foster-home settings. He found one family he liked, and who doted on him, but who were very religious. His father objected to their religion, and took him from the home. He continued to get into trouble at school, and was eventually sent to a local psychiatric evaluation facility, who found him normal and discharged him. He spent about a year on an adult psychiatric ward at the age of 14. At one point his parents seriously discussed simply giving him an allowance and telling him he would have to find his own apartment and take care of himself – at the age of 15. He began a downward spiral of increasingly anti-social behavior and lack of discipline, resulting in juvenile hall, then a state psychiatric facility for observation, then a children’s psychiatric residential facility, then a long-term state psychiatric locked facility – all before the age of 17. He was repeatedly told by the staff of these facilities that they knew he was not mentally ill – there was just no procedure for discharging him, and nowhere for him to go. His family refused to have him at home, and only his father visited, at intervals.

After reaching adulthood, he was discharged to a halfway house in San Jose, and began 4 decades of aimlessness, petty crime, and continual inability to maintain any semblance of a stable life. The lacunae and byways of his distorted life were too many to recount here, but the bottom line is that he suffered from two crippling problems: one is that his brain had been severely damaged by the horrendous procedure he endured, and the other is that he had never been socialized into living a responsible life. His development was cut off at the age of 12. He simply did not know how to do any of the things you have to do to live normally – how to feed himself, how to handle money, how to work at a job. He invented a “brilliant” check-kiting scheme that involved stealing other people’s tax refund checks, depositing them in a bank account under his own name, then writing checks on that account to buy merchandise which he would then pawn for 1/3 its value, giving his real name and address as security on the checks he had written; he was amazed when they caught him. He was homeless for long intervals, drank too much, had a succession of terrible relationships with people equally as strung-out and fucked up as himself, started businesses that he bankrupted by partying with the money out of the cash register, and in general had no way of planning for any future further away than his next bad decision. Weighing over 300 lbs and smoking three packs a day, he had a heart attack in his 40s. After many long, bad years, he fell in love with a woman who realized she had to get them both clean and sober, and into some kind of stable lifestyle, if they were going to survive – and, miraculously, they managed it together. He eventually found a job as a bus driver, and has worked consistently in that field for some years now.

A few years back, when Dully was well into his 50s and finally finding some (imperfect) stability, an NPR radio producer contacted him, saying he was putting together a program on the life of Walter Freeman, and had contacted a few of his old patients; they wanted to interview Dully for the spot. He agreed – but after he talked for some time with the producer and his assistant, they became so enthralled by Dully’s story that they changed their minds. They wanted to do the show about him – to get Dully himself to actually narrate the show and interview the other patients and participants, including his own father. They also told him that they had located Freeman’s personal archives – which he had donated to George Washington University in anticipation of the professional acclaim he was sure would come; as a former patient, Dully was entitled to ask to see his own medical records.

Dully desperately wanted closure on the pain and bewilderment that had haunted him his entire life. He was also terrified to, but eventually agreed to, interview his father for the show. He began travelling the country, interviewing former lobotomy patients or their surviving family members. Some said they did feel the operations had been beneficial; most said the results were debilitating or horrifying. One woman broke down in recalling that the operation had made her mother so childlike that she, her daughter, had never thought of her mother as her mother, or as the grand-mother of her children; she had never introduced her own daughter to her mother. Dully spent extensive time with his own father, trying to elicit some reaction to the fact that he had been lobotomized at the age of 12, and his father had signed the consent to allow it. At no point does his father offer anything that seems genuinely humanly emotional or authentic, and at no point does he acknowledge what was done to his son or how momentous it was.

The radio show was a smash. It was previewed to a select audience in New York, including experts in medicine and the work of Walter Freeman; they were left in tears, and responded with a standing ovation. Dully replayed the interview when he appeared as keynote speaker for the National Guardianship Association (a group for those who serve as legal guardians of mental patients); they had the same reaction, and he was mobbed for autographs and questions. When it finally aired on NPR, the station’s server immediately crashed with e-mail messages expressing how moved and admiring the listeners were. (I can’t imagine this book isn’t going to be made into a fantastic movie soon. It needs to be.) The show remains available on the NPR Web site; it is moving and at times horrifying. Dully’s book contains more material, and more elaborate context, for the interviews and sound bites heard on the program, which is only 20 minutes long. (His description of being awed by Frank Freeman, Walter’s son, describing in technical clinical terms his father’s brilliant successes, and claiming that he himself could perform lobotomies with the same instruments – and then seeing Frank pop out of his bedroom in his “work clothes” – a rent-a-cop security guard’s uniform – is priceless.) The aural impact of the people’s actual voices is unforgettable, however. You hear one poor woman chirpily singing “You Are My Sunshine” with her lobotomized mother who remained a little girl to the age of 93; she explains that, until that day, she had never brought her husband of 19 years to meet her mother, because she couldn’t face the fact of her mother’s debility. When Howard asks her what made her change her mind that day, she answers, “You. Do you know how many people you are championing?”

Howard Dully is still a bus driver in San Jose, CA. He is also a noted speaker on lobotomy and patients’ rights issues. He remains a champion. His greatest victory is summed up in his own final words from the book and the radio program: “I did feel, at last, truly at peace. . . . I had found my place. I was no longer ashamed.”

* * * * *

This story resonated strangely with me, when I realized that I could have met Howard Dully during his wandering years. I grew up in the Bay Area and attended San Jose State University, in San Jose, California, during the period that Walter was living in the same town at the lowest ebb of his life. I worked for a year in juvenile residential psychiatric facility similar to the one he lived in, and, as an EMT, I transported mental patients to Napa and Agnews State Hospitals, where Howard was incarcerated for long periods. (Basically minimum-security prisons for people who got on the wrong side of a psychiatrist, I wouldn’t wish those places on anyone – and sometimes felt conflicted about my role in placing people there, though I remember angrily defending myself against a radical professor who criticized my participation in the system.) I was there just after the great wave of “de-institutionalization” – patients’ rights advocates found an unexpected friend in Governor Ronald Reagan during the 1960s, who was perfectly willing to empty the large state mental facilities and dump patients on the streets with almost no support. The large concentration of halfway houses like the one Howard lived in, near the San Jose State campus, was the result of the closure of the long-term institutional centers. Just as Howard describes, the patients were forced to leave the halfway houses during the day to “socialize”, but were provided with no employment, therapy, or job training, and so would simply congregate downtown or on the college campus; I saw many of them in the vicinity as a student and later an EMT. Though it’s unlikely, one of them could have been Howard. I certainly recognize many of the places he mentions in the book (though I was never brave enough to go into the Saddle Rack – the redneck bar he frequented in those days). At one point we apparently lived within a few blocks of each other. I knew the rough outlines of that world, but Howard’s book lays bare the inside of the system, and the ease with which people can get caught up in it.

It has to be said that it’s hard, throughout the story Dully tells in his biography, to see exactly where the lobotomy fits into the picture. As he himself reports, his behavior was not well controlled even before the lobotomy – though it hardly seems like anything more than the usual ne’er-do-well kid stuff. His step-mother truly seems to be an unmitigated evil, and even if she hadn’t had him lobotomized, nobody would have come out of that situation whole and well, but his father’s seemingly soulless and disingenuous relationship to his own culpability, and his son’s desperate need for affirmation, can be understood as the product of his weird Christian Science upbringing (where he apparently learned that you don’t dwell on “negatives”, or show strong emotion). Howard’s later troubles, though harrowing, don’t seem that atypical of the lives of more than a few people who found they just couldn’t make it in the straight world, and wound up down and out, living hand to mouth and having trouble with the law. It doesn’t take a lobotomy to get into that position. But Dully had all that and a lobotomy – which complicates the picture, and also underscores what a triumph his life has finally become.

More than anything, this book illustrates how grinding, and how merciless, the system of antagonistic medical power can be. On the radio show, while reading, live, for the first time, Walter Freeman’s summary of his step mother’s libelous “case report”, and his father’s complacent acquiescence in their plans to cut his mind, Dully says heartbreakingly: “I was supposed to fight all this, huh? No way. A twelve-year-old couldn’t stand against all this. It wasn’t fair.” It surely isn’t.

The strange and harrowing history of psycho-surgery was a brief one. At one time it transfixed medical ethics as a paradigm case of the clash of values and the appropriate limits of medical authority. But as the horror stories began to seep out and the bizarrely unscientific nature of the procedures became more apparent, and especially as the patients’ rights movement grew some teeth, the issue simply disappeared. Such procedures came to a halt in the late 70s, about the time of Freeman’s own death (and that of his last hapless patient). In some jurisdictions they were banned outright, or placed under stringent safeguards of patient interest. The rise of effective psychological medications – not without their own significant side effects – also made the crudeness and destructiveness of the surgeries seem unnecessary. (To this day there is no known method for guiding or controlling the specific pathways, or predicting the consequences, of large-scale brain lesions like lobotomy.) They are simply not performed anymore, and the patient-autonomy pendulum has swung far enough, even in mental health, that such free and easy invasions, on such a scale, are not likely to recur. My own first textbook in medical ethics – the 1981 original edition of Mappes and Zembatty’s Biomedical Ethics – devoted two full sections to behavior modification and psycho-surgery; the current edition contains no mention of either topic.

But the larger issue this tale raises remains germane. The tension between expert opinion and patient values remains as acute as ever, even as patient-centered decisionmaking and autonomy have come to be watchwords in healthcare. And the terrible vulnerability of the mentally ill, or even anyone simply labeled mentally ill, remains. Once that label has been put on, it becomes impossible to get anyone – still less medical professionals – to see one’s behavior, values, or decisions through any other lens. And the temptation to substitute judgment for the mentally ill becomes insurmountable for too many people – a temptation that is indulged and ratified too easily by both the health and legal systems. We are unlikely to see many more 12-year-old lobotomy victims, but we are in no way unlikely to see more people caught in power struggles with doctors, parents, administrators, judges, and family members who “know best”.

Picture of Howard Dully, age 12, during lobotomy procedure, with leucotome inserted in eye socket.

UPDATE: The blog Neurophilosophy has an excellent review of the history of lobotomy as a procedure. Howard Dully himself contributes in the comments thread.

SECOND UPDATE: Moved photo per reader’s request.

4 Responses to “A Long Night’s Journey Into Day”

  1. cynders Says:

    Very moving ,thank-you for sharing this.
    Take care ,
    Cyndersx

  2. Dan M. Says:

    Very striking. I had to read this over a couple days in order to not be too disturbed by it.

  3. Dan M. Says:

    By the way, this seems disturbingly similar.

  4. Sarah Says:

    That was a fascinating, but very upsetting story.

    (If you wouldn’t mind moving the photo behind the cut, and including a warning, I’d appreciate it. That image was a bit too graphic and potentially triggering to be just sort of thrown out there without a chance for the readers to prepare themselves. Thanks!)

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