Read Patient H.M. Online

Authors: Luke Dittrich

Patient H.M. (12 page)

In other cases, however, the experiments that led to medical breakthroughs were more troubling, and the calculus becomes murkier.

In 1845, a South Carolinian physician named J. Marion Sims undertook a four-year-long program of experimental surgeries on fourteen black women, all of whom were slaves and most of whom he had purchased and installed on his property as live-in test subjects. His surgeries were aimed at developing a treatment for vesicovaginal fistula, a potentially fatal complication of childbirth that was common at the time, and he operated on some of his slaves as many as thirty times each. Anesthesia was still in its infancy, and he didn't use any. After much trial and error, and many deaths from infection, Sims developed an effective surgical approach. Only then did he begin operating on white women. Sims went on to become president of the American Medical Association and is widely considered the father of modern gynecology. To this day, visitors to Central Park in New York City can see the larger-than-life bronze statue of him standing right across the street from the New York Academy of Medicine.

And in 1932, the U.S. Public Health Service launched the Tuskegee Syphilis Experiment, a long-term study that over the next four decades monitored the effects of syphilis on a group of black Alabaman men who were never told they'd been infected. Syphilis is fatal when left unchecked, but easily treated: The researchers could have saved many lives with a few prescriptions of penicillin, but they chose not to, preferring to observe the disease rather than cure it.

For most of human history, our attitudes toward human experimentation were strictly utilitarian. If the scientific benefits were great enough, then almost any cost was justified. In an 1895 article called “The Relative Value of Life and Learning,” a prominent University of Chicago chemist named E. E. Slosson summed up this attitude when he wrote that “a human life is nothing compared with a new fact in science.” He scoffed at those who held that “the aim of science is the cure of disease, the saving of human life,” and argued that “quite the contrary, the aim of science is the advancement of human knowledge at any sacrifice of human life.”

But the horrific experimentation laid bare during the Doctors Trial at Nuremberg demonstrated the “moral degradation” that such a mindset could lead to. And to those who cared to look, Nuremberg also cast a harsh light on the ethics of scientific research being conducted elsewhere. Indeed, the chief defense of the Nazi scientists was to argue that what they did was, at a fundamental level, what scientists had always done, and that while their experiments may have been uniquely brutal, human experimentation of one sort or another was ubiquitous. It was hard not to concede that they had a point.

On August 20, 1947, the tribunal delivered its verdict. To the surprise of no one, all twenty-three defendants were sentenced to die by hanging. However, in a concession that the Nazi experiments were perhaps only different in kind, not character, from medical research conducted elsewhere, the tribunal's verdict also included a new declaration of the fundamental principles that they believed should govern research on humans from that day forward. The rules became known as the Nuremberg Code, and although the code did not itself hold the force of law, it was a vastly influential template and inspired a spate of new laws related to the conduct of medical experiments worldwide.

This is the Nuremberg Code:

1.
Required is the voluntary, well-informed, understanding consent of the human subject in a full legal capacity.

2.
The experiment should aim at positive results for society that cannot be procured in some other way.

3.
It should be based on previous knowledge (like an expectation derived from animal experiments) that justifies the experiment.

4.
The experiment should be set up in a way that avoids unnecessary physical and mental suffering and injuries.

5.
It should not be conducted when there is any reason to believe that it implies a risk of death or disabling injury.

6.
The risks of the experiment should be in proportion to (that is, not exceed) the expected humanitarian benefits.

7.
Preparations and facilities must be provided that adequately protect the subjects against the experiment's risks.

8.
The staff who conduct or take part in the experiment must be fully trained and scientifically qualified.

9.
The human subjects must be free to immediately quit the experiment at any point when they feel physically or mentally unable to go on.

10.
Likewise, the medical staff must stop the experiment at any point when they observe that continuation would be dangerous.

While the Nuremberg trials were still in process, Charles Burlingame invited a man named Dr. Nolan Lewis to give a talk to his staff at the Institute of Living. Lewis was the “psychiatric adviser” to the international war crimes tribunal, and the talk he gave, which took place on January 15, 1947, was titled “Impressions of the Psychological Factors in Nazi Ideology.” Lewis, in his analysis of the Third Reich, took the long view.

“In order to understand any ideology or social development one must return to the operation of primary laws or elementary principles,” he said. “Anywhere along this great cosmic chain of evolutionary events…pathological events can and do happen. We detect and study pathological patterns in cells, tissues, organs, and in individuals, at chemical, physical, and psychological levels, and in higher cultural and political fields the so-called social pathological phenomenon appears often in actively destructive ways, throwing some parts of normal evolution either into a cul-de-sac or into an actual regression process, which retards or actually destroys some portion of civilization, the amount affected depending upon the size and virulence of the pathological tendency. The Nazi ideology was one of these pathological streaks.”

Lewis explained to the audience that the social pathology of Nazism led to a remarkable transformation in the German people, leaving them with “a complete absence of human compassion as we understand it.” He described how they were thus able to commit their crimes “indifferently, without undue emotional reactions,” and that they were so morally debased that “the mud and other filth of the concentration camps affected the Nazis much more than human suffering.” He then told the asylum staff that any attempts to understand the Nazis by seeking slivers of common ground were doomed to fail.

“We must stop thinking,” he said, “that these Nazis are anything like us in their attitudes, thinking, or feeling.”

After Lewis's talk, the employees of the Institute of Living went back to work, tending to the asylum's guests. In some ways, things had changed since the end of the war. There were no longer mandatory periodic blackouts, and the budget had expanded, allowing for the hiring of new staff and the launch of new construction projects. In other ways, however, things were the same as they'd always been. The asylum remained a place of constant activity, and Burlingame continued to encourage a multipronged approach to the treatment of his guests, prescribing the widespread application of heat, water, and electricity, not to mention the cold steel of my grandfather's surgical tools. He also continued to embrace new experimental treatments whenever they arose.

For example, at around the time of Lewis's visit, Burlingame hired a new staff psychiatrist named M. Marin-Foucher, who had recently developed a novel therapeutic technique. It involved a coffin-shaped cabinet much like the one in the Pyretotherapy Room, but in this case it was designed to have an opposite effect. Guests would be made to lie in the cabinet, strapped down between layers of blankets that contained rubber tubing. A freezing solution would then be pumped continuously through the tubing while a thermometer placed in the guests' rectums monitored their temperature. Once it dipped below 93 degrees, guests tended to remain unconscious until they were removed from the cabinet, between forty-eight to seventy-two hours later.

Marin-Foucher considered the treatment to be promising though inconclusive, and he eventually published his results in the asylum's in-house scientific journal. His paper was titled “Hypothermia: A New Treatment for Mental Illness,” and like most academicians, he was careful to credit the relevant work by prior researchers. In this case, his scientific antecedents were clear: In the first paragraph of his report, he noted that he had been inspired by “the studies of the Germans on hypothermia in World War II.”

THIRTEEN
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D
r. John Fulton sat in his book-stuffed office at Yale, speaking into his Dictaphone. He'd purchased the device, a primitive voice recorder that allowed you to temporarily preserve audio on wax cylinders, in 1927, and it quickly became a treasured possession. It allowed him to maintain an impressive correspondence with hundreds of friends and colleagues all over the world, ranging from Robert Oppenheimer to Thornton Wilder to Alfred A. Knopf. Most evenings, accompanied by a good bottle of Madeira wine, he would spend three to four hours dictating letters. The next morning one of his secretaries would transcribe them, then bring them to him for his signature. On this particular evening, August 24, 1948, Fulton was composing a letter to Max Zehnder, a young Swiss physiologist. Zehnder had visited Fulton's primate lab two years prior and had expressed interest in pursuing research there. His special area of expertise was the examination of “brain vessels under various pathological conditions,” such as exposure to toxic chemicals. Fulton had not been able to accommodate Zehnder then, but a new opportunity presented itself.

“My dear Zehnder,” he began. “I have a proposal which I think may appeal to you. It is this: The neurosurgical group at the Hartford Hospital, with the backing of Dr. Charles Burlingame, Director of the large psychiatric nursing home (the Institute of Living) at Hartford, is prepared to give you a staff appointment for a year which would guarantee your room and board during 1948–1949 with the understanding that you would be free to study their cases of frontal lobotomy.”

Fulton sweetened the pot by offering Zehnder a simultaneous staff appointment at Fulton's own laboratory at Yale that, while unpaid, would look good on any young scientist's résumé. Mostly, though, he stressed the remarkable nature of the research opportunity at the asylum. “Dr. Scoville, a well trained neurosurgeon, has developed techniques for undercutting the orbital surface for removing the anterior cingulate and for undercutting Brodmann's areas 9 and 10. Dr. Burlingame has given Scoville unlimited access to his psychiatric material. They plan to carry out these procedures on several hundred cases during the year and they are eager for collaboration on the physiological side.”

The next morning one of Fulton's secretaries transcribed the letter, and before presenting it to Fulton for his signature she made a mimeographed copy; that copy eventually migrated into the possession of the Yale archives, which stored it alongside Fulton's other Z-surnamed correspondents in a gray acid-free box; that box was placed in front of me on a long wooden table in a hushed, high-ceilinged reading room one afternoon six decades after the letter was written.

—

Institutions have memories.

Some institutions, such as Yale, do a good job of keeping those memories alive, preserving their documents and allowing the particulars of their pasts to be called up and reexamined days or years or decades later. This doesn't mean that their pasts are easy to understand or that their institutional memories are laid out in any sort of coherent narrative. They're not. But that's part of what makes archival research stimulating. It's an active process, and to get anything out of it, you have to put a lot in. The “finding aids” that help you navigate an archive are only rough guides, and you never know what you're going to unearth until you start looking. Sometimes you can get a little lost. I once spent most of an afternoon reading through yellowing newspaper clippings that Fulton had taped into a scrapbook, most of them chronicling recent scientific “discoveries,” such as the following Associated Press report from April 24, 1935:

“The old idea of [the] impassive, unemotional oriental was upheld by experiments described by Dr. G. M. Stratton of the University of California. He found white native Americans much more likely to react to their emotions than Chinese or Japanese. Emotions were tested by having a large, heavy hammer strike a hard blow within a few inches of the hand of men of each racial type. The Americans, generally speaking, had much less control over themselves when the hammer struck. They exhibited keen tendency to jerk their hands away, their blood pressure rose, their breathing speeded up, their pulse raced faster.”

But sometimes those chance encounters reveal unexpected connections, and if you follow these connections from one to the other, they'll start to form a framework. In that way, institutional memories are just as subtly and complexly interconnected as human ones.

—

Max Zehnder accepted Fulton's offer, but he didn't last long at the Institute of Living. On January 6, 1948, about four months after taking up his position at the asylum, he wrote a letter of resignation to my grandfather, which he cc'd to John Fulton. Zehnder's English was imperfect, but it's clear that tensions between the Institute of Living superintendent, Charles Burlingame, and the Connecticut State Hospital superintendent, Benjamin Simon, had flared into some sort of turf war and that Max Zehnder had become either a pawn or a prisoner, depending on your perspective.

“Dear Dr. Scoville,” Zehnder began, “I take the opportunity to thank you for all your kindness extended to me during my stay at Hartford. You are well informed about the situation and some of the difficulties encountered and as a foreigner I do not wish to interfere in these questions as I am unaware of the background in which I had no interest to penetrate.” Among the difficulties Zehnder mentioned was that Superintendent Simon “declared me that I never could give any publication in connection with the Institute of Living in Hartford,” after which Superintendent Burlingame “declared me that I should not leave the Institute even not for going over to the Hartford Hospital unless Dr. Scoville would ask for permission.”

Most of Zehnder's complaints, however, had to do with the research he had come to America to conduct. Some of the problems he'd encountered appeared to result from simple miscommunication. For example, one of the first things Zehnder did after arriving was to take a full survey of all the patients who'd received lobotomies, making “abstracts of all their histories writing by long hand and without help.” Then, after toiling for nearly a month, he discovered that “this whole survey was already made by the Connecticut Committee of Lobotomies,” making his own survey valuable only as “an excellent Exercise in English, but not as scientific work.”

More troubling to Zehnder was what he found when he reviewed the research being conducted in the Connecticut asylums. As far as he could tell, the lobotomy experiments lacked one of the cornerstones of the scientific method: proper controls. That is, the neurosurgeons and the neuroscientists who were cutting into patients' brains had been trying to glean the effects, and potential benefits, of the operations by studying only those patients and failing to conduct crucial comparative studies on similar patients whose brains they'd left intact. Zehnder stressed that “all observations before this time lack of any objective control necessary for real scientific work” and that for “exact investigation of effects” future lobotomy researchers would “need a simultaneous registrating control.” As it was, Zehnder complained, “with the results of my work and the means employed I could not even reach the required standard of a scientifically serious publication.”

After reading Zehnder's letter, I wanted to learn more about the apparently dysfunctional relationship between the two asylum administrators, Simon and Burlingame. I knew that Burlingame and Fulton were close—in one of the letters Fulton wrote to my grandfather, he referred to Burlingame as “Burlie”—and I wondered whether letters between them might shed light on the matter. So on my next visit to the Yale archives, I requested to see box number 28, which contained Fulton's letters to and from B-surnamed individuals.

His correspondence with Burlingame turned out to deal mainly with scheduling the guest lectures that Fulton occasionally gave at the Institute of Living and shed no light on the tensions between the two old asylums. Frustrated at hitting a dead end, I rifled through some of the other folders in the box, which is how I stumbled upon Fulton's correspondence with a man named Paul Bucy.

—

Dr. Paul Bucy was a neurosurgeon and neuropathologist at the University of Chicago, but as a postdoc in the late 1920s he had spent six months in Fulton's lab at Yale. The two stayed in touch, and as their relationship deepened, their letters acquired a sort of breezy informality and warmth that was lacking in a lot of Fulton's other correspondence, which tended toward terseness. Bucy, unlike many in the scientific community, seemed unintimidated by Fulton and was willing to talk straight to him. For example, in 1948, Bucy sent Fulton a letter advising him that
The Precentral Motor Cortex,
a textbook Bucy had edited that included chapters by Fulton and a variety of other contributors, was being reissued. The letter was a boilerplate request for any revisions that Fulton might want to make. As a form letter, it was addressed “Dear Doctor,” and at the bottom there was a stamp instead of a real signature. Fulton immediately wrote back:

I have your bedbug letter signed with a rubber stamp about the new edition of your monograph on
The Precentral Motor Cortex.
Dear heavens, have you so many contributors that you are unable to write a personal letter and sign it yourself? You are really too young to go in for this sort of impersonal superficiality. If I weren't so fond of you I wouldn't have answered the letter.

Bucy responded with a pointedly handwritten note:

My dear John, It must be nice to feel that you have so many friends that you can afford to throw gratuitous insults at the few loyal ones who remain. Believe me, I remain, sincerely yours, Paul.

It was not surprising that they'd become close. Their scientific interests were in line: Both of them were devotees of the lesion method and believed the best way to illuminate brain function was by destroying portions of the brain. Like most people in Fulton's lab, Bucy participated in the neurological lesioning of scores of primates while there—“I don't know that anyone ever accomplished quite as much as you did in six months,” Fulton once wrote to him, “or who used so many monkeys”—and once Bucy left the lab he continued to mine the same vein, sectioning monkey brains in the service of science. At the University of Chicago, he teamed up with a similarly inclined German neurologist named Heinrich Klüver, and the two embarked on a fruitful campaign of vivisection, culminating in what they would declare, at the 1937 meeting of the American Physiological Society, to be “the most striking behavior changes ever produced in animals.”

Their breakthrough had come about almost completely by accident. Like many brain scientists then and since, Klüver was fascinated by mind-altering substances. This fascination wasn't only clinical: Klüver often used himself as a test subject, ingesting massive doses of various drugs and then taking copious notes. Mescaline was his hallucinogen of choice, and he recruited Bucy to help him investigate its precise neurological effects. Since Klüver had noticed that humans and primates tended to make compulsive chewing motions while tripping on mescaline, he came up with a simple, if brutal, experimental approach: He would inject a number of macaque monkeys with the drug, then have Bucy remove various parts of their nervous systems. If the removal of a particular area caused the chewing motions to cease, he would take that as evidence that it was that particular area that mescaline acted upon.

Bucy first targeted the trigeminal nerves. This had no effect. Then he went after the facial nerves. The tripping monkeys continued their compulsive chewing. Lesioning both their trigeminal nerves and facial nerves didn't do anything, either. Finally, acting on the vague hypothesis that mescaline-induced chewing motions might be etiologically related to the spasmodic mouth movements made by patients suffering from temporal-lobe epilepsy, Bucy opened the skull of a monkey named Aurora and removed most of her temporal lobes bilaterally, including her hippocampus, uncus, and amygdala.

Once again, this did not stop Aurora's spasmodic chewing motions.

What it did do, however, was remarkable.

Aurora instantly acquired what Bucy and Klüver deemed “psychic blindness.” The macaque, they wrote, “seems unable to recognize objects by the sense of sight. The hungry animal, if confronted with a variety of objects, will, for example, indiscriminately pick up a comb, a bakelite knob, a sunflower seed, a screw, a stick, a piece of apple, a live snake, a piece of banana, and a live rat. Each object is transferred to the mouth and then discarded if not edible.” Aurora also developed a markedly more placid emotional affect, coupled with a loss of fearfulness and “increased sexual activity involving forms of heterosexual, homosexual and autosexual behavior.” These results indicated that the temporal lobes, about which very little was known, seemed to be involved with the emotions and the sex drive. They also appeared to have an effect on memory, at least if a lack of memory was what caused Aurora's “psychic blindness,” her inability to recognize previously known objects. Still, it was difficult to know how to interpret these findings precisely. After all, Aurora couldn't talk.

While Bucy was conducting his mescaline research with Klüver, he received a letter from Fulton complimenting him on his latest paper, which chronicled Bucy's experimental lesioning of the carotid sinus nerve in human beings: “The observations are exceedingly interesting, and they illustrate, as so many of your papers do, the unusual opportunities which any alert-minded neurosurgeon has to do significant physiological work, if he only has the gumption.” Then Fulton gave his former student a piece of advice, suggesting that if he wanted “to start something new, ” he should look into the lobotomy, which Walter Freeman and James Watts had just begun performing in the United States. His advice had the phrasing of a hot stock tip: “I have an idea that in a year or so this will constitute one of the major phases of neurosurgery, and I think anyone in the field would do well to get in on the ground floor.”

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