Patient H.M.

by Luke Dittrich

  Behind a heavy door in an adjacent room, Corkin and her colleagues stared at a computer screen and watched with excitement as ghostly cross sections of Henry’s brain began to appear, providing the best view anyone had had of it since my grandfather made his cuts four decades before. During those four decades, scientists performed hundreds of experiments with Henry, amassing what was already the most extensive amount of clinical data of any human research subject ever. The through line of all this research was an attempt to connect what they learned about Henry’s amnesia and other deficits to what they knew about Henry’s brain lesions. Finally they had a chance to see and measure those lesions rather than just depend on my grandfather’s best guess about their size and scope or squint at the blurred images produced by more primitive neuroimaging technologies. After decades of measuring the effects that my grandfather’s operation had on Henry’s mind, they had their best opportunity yet to look at the lesions themselves, the causes of those effects. The biggest initial surprise of the scans, incidentally, was that the lesions appeared to be substantially less extensive than my grandfather had estimated in his postoperative report. Whereas he had described destroying all of Henry’s hippocampal structures bilaterally over a distance of approximately eight centimeters, the MRI images indicated that there were at least two centimeters of preserved hippocampal tissue on both sides, a little more in the left hemisphere than the right. The scans also revealed that Henry’s cerebellum, the part of the brain sitting just above the stem and responsible for general motor skills and coordination, was shrunken and in poor shape, presumably a result of the high levels of antiepileptic drugs Henry had been taking during most of his life. In addition, my grandfather’s suction catheter destroyed most of Henry’s olfactory cortex, which might have explained his pronounced and extensively documented difficulty in distinguishing between different scents.

  As excited as Corkin and her colleagues were to see these scans, however, they were also somewhat frustrated by them. MRI was the state of the art in neuroimaging technology at the time, but it had limitations. The resolution was still far from ideal: A human brain typically contained about 1 billion neurons, while an MRI scan image had a resolution of only about 65,000 pixels. Areas that encompassed entire constellations of neurons and axons and dendrites were reduced to a few pixels.

  You could spend a half century testing somebody—examining, poking, prodding, feeding—and come up with all sorts of theories to explain your findings. You could even put that person in an MRI machine and study the blurred images that appeared on your screen. But the brain, nestled in its fortress of bone, doesn’t give up its secrets easily.

  Eventually, Corkin knew, to truly understand the dimensions and effects of the cuts that my grandfather made in Henry’s brain, another cut would have to be made.

  —

  On November 13, 1992, six months after that first MRI scan, Henry received two visitors at Bickford. One of them, Edward McGuire, was an attorney. The other was a man named Thomas F. Mooney. The purpose of their meeting was to help McGuire determine whether Mooney was a good candidate to become Henry’s conservator, a role that would give Mooney legal control over Henry’s medical care, among other things. A conservator is required when people have a debilitating condition such as dementia, schizophrenia, mental retardation, or, as in Henry’s case, profound amnesia, which makes it impossible for them to make informed decisions regarding their own well-being. In most such cases, a parent acts as a de facto conservator. Henry’s father had died decades before, and his mother had died in 1980. For the twelve years prior to this meeting, Henry was without a conservator or legal guardian of any sort. Suzanne Corkin, as well as some of the lawyers at MIT, were concerned about this.

  Central to their concerns was the principle of informed consent. This was a principle that had evolved slowly over the course of the twentieth century, in fits and starts, often spurred forward by horrors such as those documented by the Nuremberg trials of the 1940s or the revelations about the Tuskegee Syphilis Experiment in the 1960s. By 1992, there was a clear consensus, not to mention a legal mandate, that required scientists who worked with human subjects to ensure that those subjects fully understood and agreed to any experiments they took part in. When research subjects had a condition that made providing their own consent difficult, that consent had to be obtained from a parent, conservator, or other legal guardian.

  During the first two decades of experiments with Henry, consent was usually provided by Henry’s mother, Elizabeth, or his father, Gustave, with Henry co-signing. By 1974, Gustave was dead and Elizabeth had dementia, so Lillian Herrick, the woman who’d been boarding Elizabeth and Henry at her home, started signing Henry’s consent forms whenever she dropped him off at MIT. This unusual arrangement—Herrick was not Henry’s conservator but, in a sense, his landlady—continued until Henry moved out of Herrick’s home and into the Bickford center in 1980. From 1980 until 1992, the only person who signed Henry’s consent forms was Henry himself.

  Was Henry, on his own, capable of providing informed consent?

  On the one hand, he was a bright individual, with an above-average IQ and intact reasoning abilities. On the other, the missing parts of Henry’s brain affected him in ways that many experts would say made true consent impossible. For one thing, Henry could only hold on to the present moment for extremely short periods of time. This meant that a researcher attempting to gain consent from Henry faced the challenge of introducing herself, introducing the proposed experiment, explaining its methods, elucidating any possible risks, explaining the concept of informed consent, and then getting him to sign the consent form before any of that information flew out of his head. In addition, as soon as Henry signed the form he would forget everything about it, including the fact that he had consented at all, which meant that he would, some would argue, need to continually reconsent, over and over, as the experiment unfolded.

  When it came to informed consent, however, an even more fundamental problem than Henry’s amnesia was his passivity. Despite his occasional outbursts, Henry was, as Corkin and other researchers described him, almost always a docile and tractable man, and this docility and tractability surely was a result of his brain lesions, specifically his missing amygdala. My grandfather’s operation had made Henry neurologically predisposed to consent to anything.

  Many of the researchers who worked with Henry at MIT didn’t appear to know much about what process was followed to obtain informed consent in his case. Instead they simply trusted that Corkin, the principal investigator, had made sure to follow proper protocol. “I’m sure Sue did,” the psychologist Nancy Hebben told me. “But I didn’t have to specifically do something. There must have been a consent form of some sort.” Hebben was in charge of running the tests in the early 1980s on Henry’s pain thresholds, tests that left little mysterious burns on his chest and forearms that Henry would later ask his nurses to explain. When I asked if she believed that Henry was capable of giving informed consent for those experiments, or any others for that matter, Hebben shook her head. “My guess is it would not have been Henry signing. How could you consider that informed consent? Because he wouldn’t remember. I mean, he could understand. He wasn’t a stupid man. So you could explain it and he could say, Oh yeah, I agree to do that. But then he wouldn’t remember that he had agreed to do it….I mean, how could he possibly give informed consent?” Hebben assumed Corkin had arranged for somebody else to provide consent on Henry’s behalf, but she was wrong. For at least a decade, including the period when Hebben did most of her work with him, Henry was the only person signing his consent forms.

  By 1992, as Corkin described it later, Henry’s “difficulty in retaining new information raised the nagging question of how we obtained informed consent.” In July of that year, Peter Reich, the chief of the psychiatry department at MIT, was asked by Corkin to interview Henry, and afterward Reich wrote a reassuring letter in which he said that Henry “appeared to understand the nature of
the procedures he has been undergoing as a CRC subject and expressed his willingness to undergo these procedures.” This was not enough, however, to allay everyone’s concerns. The standards governing human research, not to mention governing the funding of human research, had changed considerably in the decades since “the MIT Research Project Known as the Amnesic Patient H.M.” began. By the time Reich interviewed Henry, Corkin had already initiated the search for a conservator, someone who could provide the rock-solid informed consent that Henry himself could not.

  Thomas Mooney was the second person to apply. A year earlier, in 1991, Corkin had arranged for a physician named John J. Kennedy to submit his conservatorship application to the Windsor Locks Probate Court, which oversaw such matters. Kennedy was on staff at the Bickford Health Care Center and was Henry’s personal physician there. The application required that Kennedy describe the “mental, emotional and/or physical condition which prevents respondent from performing necessary and proper functions for his or her well-being,” and Kennedy wrote that Henry “has had a lobotomy and is presently mentally unable to perform daily functions properly.” The application also asked Kennedy to list Henry’s closest relatives as well as any other “interested parties.” In Connecticut’s probate practice book, an interested party is defined as any “person having a legal or financial interest” in the proposed conservatorship. Apart from himself, Kennedy listed only one such party: Suzanne Corkin. He also wrote that Henry had “no close relatives.” After submitting his application, Kennedy received a confidential memo from the probate court, and shortly after that he withdrew his application. It’s unclear why, though his conservatorship might have been legally problematic at best, since a clear conflict of interest exists when a person’s physician is given complete authority over the patient’s healthcare decisions.

  A year later, at Corkin’s request, Thomas Mooney—the son of Henry’s old landlady Lillian Herrick—submitted his application. It was drafted on the same boilerplate form as Kennedy’s had been, though some of the information was different. Henry’s debility was described in greater detail as follows: “Henry G. Molaison has a neurological condition known as global amnesia, a severe memory impairment that prevents him from being mentally able to care for himself.” Also, while Kennedy’s application claimed Henry had no close relatives, Mooney’s application claimed that he himself was Henry’s cousin. One thing remained the same in both applications, however: Suzanne Corkin was listed as the only “interested party” apart from the proposed conservator himself.

  During the meeting between Henry, Mooney, and the attorney McGuire, Henry charmed McGuire. “I was impressed with Mr. Molaison’s congeniality and gentleness, his sense of humor and obvious native intelligence,” McGuire wrote afterward. Corkin had briefed McGuire extensively on Henry’s case prior to the meeting, speaking with him on the telephone and sending him a letter and a copy of a recent journal article, so McGuire was aware that Henry was, as McGuire wrote, “a unique person. He is apparently the most thoroughly studied and described neurological patient in the world.” McGuire remarked that during the meeting, Henry “spoke clearly of recollections from his youth, including his schooling, places where his family had lived, the injury when he was 7 years old which may have, at least in part, precipitated his epilepsy, and his work experience. His particular amnesia was also very evident, as he repeated his recollections several times, obviously not recalling that he had just said the same thing. However, each time he repeated a recollection, the details were the same. Mr. Molaison conversed easily and comfortably. When I asked him if he would like Tom Mooney to have the responsibility of making sure that he is well taken care of, his reply was that he would be glad to have the help, as long as it would not be too burdensome for Tom.”

  In paperwork filed with the court, Mooney was referred to alternately as Henry’s cousin and his nephew. Henry, when asked by McGuire, said he thought Mooney might be his second or third cousin. In fact, if Mooney and Henry shared blood ties, they were thin ones, undetectable even by following Henry’s family tree for several generations. Nevertheless, from McGuire’s account of the meeting, it’s clear he had been led to believe that Mooney was, as he put it, “Mr. Molaison’s only known living relative.” This was an important point, one that would make Mooney a suitable candidate for conservatorship. A person’s next of kin, after all, might be expected to take a sincere interest in that person’s well-being. The problem was, it wasn’t true. At the time of their meeting, Henry had at least three first cousins—Frank Molaison, Marjorie Ramsdorf, and Myra Crowley—living in Connecticut, all more closely related to Henry than Mooney. None of those cousins had been contacted.

  At one point during the meeting, Henry told one of his oft-repeated stories about a childhood trip he’d made to Buffalo. Mooney asked him if he’d seen Niagara Falls during his Buffalo trip.

  “No,” Henry said, “Niagara Falls cannot be seen from Buffalo. It is necessary to go to Niagara to see Niagara Falls.”

  Mooney and McGuire laughed, and four days later, on November 17, 1992, the Windsor Locks Probate Court officially appointed Tom Mooney as Henry’s conservator.

  —

  Mooney stayed Henry’s conservator for the rest of Henry’s life. It was not, as Henry had fretted it might be, an overly burdensome position for Mooney: All of Henry’s day-to-day needs were handled by the nursing home, and Mooney had few responsibilities and did not appear to go one step beyond what was required. Indeed, when the probate court conducted a mandated follow-up review of Mooney’s conservatorship four years later, in 1996, an attorney named Mary T. Bergamini submitted the following report:

  “Mr. Molaison’s condition has not changed in any significant manner. He is currently a resident at Bickford Convalescent Home. He has been a recipient of Title 19 benefits as of 1992 and Bickford currently receives both his Social Security and State payment directly. He is given $30.00 per month on account for his personal needs. The records indicate that Thomas F. Mooney was appointed Conservator on November 17, 1992. I attempted to contact Mr. Mooney without success. The nursing home has indicated to me that they also have had no contact with Mr. Mooney. However, it appears that Mr. Molaison’s financial and personal affairs are cared for by the administration at Bickford. There is certainly the need for a continued Conservatorship of Mr. Molaison. The question appears to be whether or not Mr. Mooney should continue in this capacity. I have no objection as the respondent’s current situation is stable; that is both his personal and financial affairs are taken care of.” After a brief hearing on the matter, a probate court judge agreed to Mooney remaining Henry’s conservator, despite Mooney’s lack of involvement in Henry’s life.

  In one important respect, however, Mooney did remain diligent: From the beginning of his conservatorship until the end of Henry’s life, he never failed to provide consent to Suzanne Corkin for the continuation of “the MIT Research Project Known as the Amnesic Patient H.M.” Whatever experiments Corkin and her colleagues wished to conduct, Mooney always signed the consents. Likewise, when the question arose of whether scientists could continue to experiment on Henry after his death, Mooney raised no objections. In fact, just one month after becoming Henry’s conservator, Mooney returned to Henry’s nursing home for another three-way meeting. This time, the third party was Suzanne Corkin. She explained to Mooney that now that he was Henry’s conservator, he could legally authorize, in advance, the posthumous donation of Henry’s brain to MIT and Massachusetts General Hospital. She’d brought along all the necessary paperwork, including an “Authorization for Brain Autopsy” form. At the bottom of the form were the following lines:

  I, Thomas F. Mooney, am the court-appointed guardian of the person of Henry G. Molaison. I also presently am Henry G. Molaison’s closest living next-of-kin, and as such I am entitled by law to control Henry G. Molaison’s remains upon his death. I hereby authorize the removal, retention and use of a whole brain specimen for diagnositic and/or research purposes
by the Massachusetts General Hospital and the Massachusetts Institute of Technology’s Department of Brain and Cognitive Sciences (or other agents), in the interest of determining Henry G. Molaison’s cause of death and of advancing medical knowledge.

  Mooney signed.

  —

  In 2002, Suzanne Corkin hosted a dinner party at her apartment in Boston’s Charlestown neighborhood for the first of a series of meetings to determine precisely what should be done with Henry’s brain after he died. Although Corkin was a neuropsychologist, she was not accustomed to working with actual brains. The wet work of neuroscience, the examination and analysis of those mysterious three-pound engines in our skulls, was not her area of expertise. The group she assembled that night was meant to address this deficiency. Present were neuropathologists, systems neuroscientists, and neuroanatomists, all more experienced than Corkin at working with gray matter itself rather than just analyzing the behavior the gray matter produced.

  Some of the subjects the group debated were very specific. For example, it was clear that Henry’s brain should be scanned again in an MRI machine after his death, but the precise number of scans, and the power of the machines used to scan it, was a matter of contention. The strength of the magnetic fields in MRI machines is measured by units known as teslas, and the machines available to Corkin ranged in power from one to seven teslas. While the higher-tesla machines were capable of producing more detailed imagery, they also produced greater amounts of heat in the tissues they were scanning. The team planned to scan Henry’s brain for many hours to obtain the most accurate images possible, but they also wanted to make sure they didn’t heat it so much that its physical integrity was damaged. At the same time, they wanted to scan it fast while it was still in Henry’s skull, to be able to harvest the brain before any decay had begun to set in. There were clearly going to be trade-offs.