This American Life and Stigma

Update: TAL has made a clarification. Please see this post for more.

Let me begin by saying how much I absolutely adore This American Life. I listen to it religiously. I particularly had been looking forward to the most recent pocast episode of TAL: Dr. Gilmer and Mr. Hyde. As the episode's blurb teases, "Dr. Gilmer and Mr. Hyde" concerns a doctor — Benjamin Gilmer — who takes over the rural South Carolina practice of Vince Gilmer (no relation). Vince is no longer available to see patients because he is serving a prison sentence for killing his father. As Benjamin gets to know Vince's — and now his — patients, he forms a picture of Vince that's at odds with his status as a convicted father murderer. How could this doctor who was so devoted to his patients have so brutally murdered his own father?

This episode is right up my alley. True crime? Check. Forensic psychology? Check. The intersection of law and medicine? Yes, please. So when I awoke yesterday morning at 5 am and couldn't go back to sleep, I eagerly cued up the podcast. The episode recounts, in TAL's  typically-riveting fashion, the story of Benjamin's search for the truth behind Vince's murder of his father. I enjoyed every minute of the episode until the last five minutes or so, when I became troubled by one critical omission.

Spoilers  follow after the jump; listen to the episode first.

Hopefully, you've listened to the episode. You should; it's good. But if not, here's the gist, based on my memory of listening to the episode casually in the wee hours of the morning (read: some details may well be off).

The day in 2004 that he killed his 60-year-old father, Dalton, 41-year-old Vince picked him up at a psychiatric hospital to transport him to a nursing home. It's not clear what his father suffered from, but whatever it was, he was dependent on a walker or wheelchair, required help with basic daily functions like dressing, and was on antipsychotic medications. Vince would later say that before dropping him off at the nursing home, he had promised his father that they would go kayaking at a favorite lake several hours away, and he had brought a kayak in the truck for that purpose. But his father had sexually abused his sister and him from the ages of 6 and 3, respectively. (The TAL reporter says that it's the most horrific case of abuse she's ever heard. Vince's sister would later confirm the abuse, although she disappeared before the trial and hasn't been seen or heard from since.) And somewhere en route to the lake, his father had made an inappropriate sexual comment or grope, and a compelling voice in his head told him to kill his father. He used a piece of rope to strangle him, tugging harder and harder until the man stopped struggling. He then moved the body to the bed of the pick up and drove around for hours trying to decide what to do with the body. Eventually, he took it to Virginia, where he used a small saw to to amputate the tips of all ten of his father's fingers before dumping the body, to prevent it being identified. He then drove home. The next day, he went to work, where he told everyone that he had taken his father home, but that Dalton had wandered off and he had filed a police report. He acted perfectly normally the rest of that week, seeing patients and socializing with colleagues.

Until the police called on him. The body had been quickly discovered (still warm, in fact). And it had been quickly identified (Dalton's shirt was stamped with a name tag, "D. Gilmer," that Vince himself had arranged for). And police, not surprisingly, quickly decided that Vince was their guy. Vince told police that he had brought his father home to live with him, and that his father had gone outside to play frisbee with the dog before wandering off, something police knew couldn't be true. Police say Vince wasn't scared or agitated. Instead, he threatened to have the detective's badge. Police also learned that he had a one-way ticket to Alaska scheduled for around the time of the killing. And he had stopped paying his father's bills at the psychiatric hospital, and owed over $200,000. Before police could get an arrest warrant, Vince fled.

When police caught up to him, he finally confessed. Despite mounting a defense that hinged on severe cognitive disability, he insisted on representing himself at trial, where his behavior, according to court transcripts and observers, was a model of disordered thinking (his court-appointed attorney described it as akin to "watching someone try to commit suicide with a butter knife"). His defense centered on serotonin depletion. He had been on an SSRI to increase his serotonin, after struggling with anxiety for years, but had abruptly stopped taking it a day or two before the murder, rather than tapering it off as he surely knew he was supposed to do. As some do, he reacted very badly, he says, becoming extremely irritable, hearing compelling voices, and generally feeling "mentally retarded." In the courtroom and, at least occasionally, in prison as he awaited trial, Vince displayed odd grimaces and shaking. He repeatedly asked prison officials for 80 mg of Celexa, uncrushed.

But when prison officials videotaped him in the prison courtyard, they noticed that his twitches and shaking seemed to conveniently come when prosecutors were in sight and go when they were not. And the rest of Vince's story was fishy, too. He claimed that the killing wasn't premeditated, but the plan to go kayaking made little sense given Vince's father's immobility, the fact that he had not brough a walker with him in the truck, and the fact that it was getting dark. And Vince had come to pick up his father prepared with both the rope and the saw (sometimes referred to in the episode as pruning shears). The jury took an hour to conclude that he had been faking his symptoms and found him guilty of 1st degree murder. The judge sentenced him to LWOP.  

Benjamin can't accept the idea that the kindly family doctor he's come to know through their shared patients suddenly turned into a premeditate murderer of his own father. He begins to investigate, and variously pursues both Vince's own hypothesis, serotonin depletion, as well as personality change due to a traumatic brain injury Vince suffered about a year before the murder. But in the end, Benjamin, on a hunch, wonders if Vince -- and, for that matter his father -- might have been suffering from a rare genetic disease, Huntington's. Once called Huntington's Chorea (for the dance-like movements most sufferers exhibit), Huntington's Disease (HD) is perhaps best known as having killed Woody Guthrie. As the TAL reporter says, HD is "a horrible condition, one of the worst, like a cruel trifecta of Alzheimer's, Parkinson's, and Lou Gehrig's Disease rolled into one." Its progressively severe physical, emotional and cognitive symptoms invariably lead to death, generally within about 20 years. HD is caused by an excessively long trinucleotide repeat (CAG, in particular) on the huntingin gene, on the short arm of chromosome 4. Genes code for proteins, and excessively long strings of trinucleotides code for excessive amount of protein, where it wreaks havok in the brain. Anyone who has 40 or more CAG repeats will get HD within a normal lifespan, and each of their children has a 50% chance of inheriting the allele (which may or may not either contracted or expanded below or above the parent's CAG repeat length).

By this point in his investigation, Vince has been moved to a psychiatric ward within the Virginia prison system after he threatened to commit suicide, and Benjamin and the TAL reporter suggest that give him Vince the genetic test for HD, which they do via a simple blood draw, apparently after a psychiatrist counsels him. It comes back positive: one copy of Vince's huntingtin gene has 43 CAG repeats. (One oddity is that it appears that the diagnosis was emailed to Benjamin, who then, some weeks, later, broke the news to Vince by phone, portions of which were recorded and included in the TAL episode. HIPAA, anyone? And of course, as TAL notes, Vince's diagnosis suddenly means that his (missing) sister is at 50% risk of having HD, and her kids are at 25% risk. One wonders what they think of that information being public.)

In terms of the mystery of why Vince killed his father, the episode pretty much ends there. HD can lead, among other things, to serotonin depletion, so it's possible that, in a way, Vince's theory of his own crime was right all along. Indeed, following the diagnosis, his psychiatrist has prescribed the exact 80 mg of Celexa that he had been requesting for 9 years, and he reports feeling less anxious. The final few minutes of the episode turns to the injustices done to Vince, and how they might be redressed. Benjamin and the TAL producer rightly note that at the very least Vince, who exhibited symptoms of HD at the time of the killing, should never have been allowed to represent himself. As for releasing him from prison, UVA Law's Richard Bonnie suggested that instead of making that argument in court, they pursue compassionate release.

I'll leave others to common on the criminal law aspects of the case. I want to talk about something else. The implication of the episode (and its unfortunate title) seems to be that Vince Gilmer killed his father because he has HD. TAL speculates, not unreasonably, that Vince likely inherited HD from his father. And so the epsiode also implies that Dalton Gilmer may have brutally abused his children because he, too, had HD. Either or both of those things may well be true. But although the occasional incidents involving people with HD who kill themselves or others make for splashy news and riveting human interest stories, the fact is that the vast majority of people with HD are not dangerous to themselves or others. Although psychosis is one of many possible manifestations of HD, most don't experience that particular symptom and, again, of those who do, very, very few end up harming themselves or others.

People with HD are instead much more likely to be the victims of violence. They were burned at the stake as witches in Salem and sent to the gas chambers during the Holocaust, for instance. Less dramatically, they are routinely turned away from public accommodations or arrested because their chorea is mistaken for drunkenness. Many who are at risk for HD choose not to be tested, not only because they don't want to know, but also, in many cases, because they fear the consequences of an HD diagnosis for their employment and insurance status (GINA notwithstanding), on top of the risk that others will respond to them with irrational fears and prejudices.

Thanks to highly popular portrayals of HD like that in "Dr. Gilmer and Mr. Hyde," the public has associations with HD that the already-horrible reality of the disease doesn't bear out as typical, and they will likely project those associations on those with or at-risk for the disease. As TAL's explanation of the basics of HD during the episode suggests, many, perhaps most, TAL listeners, educated though they are, likely know little or nothing about HD. The episode offers a needlessly misleading introduction to the disease that has the potential to harm those already suffering from it.

 Although, as noted above, I have some qualms about how Vince was tested and about the privacy implications for his relatives of so widely broadcasting his diagnosis, I don't object to telling the story of a person with HD who killed his father -- not even to the telling of the story of a person who filled his father because he has HD. In its own way, Vince Gilmer's story is an illustration of how we can and should do much better in diagnosing and managing HD and its sequelae (along with similar illnesses). The episode tells the story of a doctor falsely painted as evil, when really he was just sick.

But in the course of exonerating Vince Gilmer of culpable murder, TAL paints everyone with or at risk of HD as extremely dangerous. Responsible science communication requires that Vince's story, as important as it is, be much better contextualized to reflect how unusual it is. I have written to TAL to ask that they consider adding a brief comment to that effect to the podcast version of the episode, to any rebroadcasts of it, and to its blog. I'll update this post if I hear back from them.

[Cross-posted at Bill of Health.]

Comments

[Anna]

Thanks for the thoughtful post, Michelle. I just listened to this podcast last night and it reminded me of a wonderfully humanizing documentary made about families with a history of Huntington's Disease and the traumatic decision to get tested. It's called, "Do You Really Want to Know". Website here: http://www.doyoureallywanttoknowfilm.com/the-film/ I'd highly recommend it to anyone interested in learning more about the disease.

[Tate]

Kurt Vonnegut used Huntington's Disease prominently in one of his novels, and I've heard of it outside of literature, but I've never heard of it being used as a defense in a court case.

[Michelle Meyer]

@Anna: Thanks. I also highly recommend Mapping Fate: A Memoir of Family, Risk, and Genetic Research (1996), by Alice Wexler, whose mother died of HD and whose sister, Nancy Wexler, and their father, Milton, discovered the HD gene. HD was the first genetic disease whose gene was discovered. Alas, 10 years last week after the completion of the Human Genome Project, and still no cure or treatment. It's great personal memoir combined with an inspiring scientific story. Of more recent vintage is Robert Klitzman's Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing (2012), which reports the results of the author's interviews with 64 people who have or are at-risk for Huntington's Disease, breast/ovarian cancer, or Alpha-1 antitrypsin deficiency.

@Tate: Well, HD is a rare disease, and people with HD who commit violent crimes are rarer still, in part because soon enough, they are too physically and cognitively disabled to get around to whatever crime their behavioral disturbance might lead them to commit. So that may be the biggest reason why you've never seen the "HD defense."

It's not clear what Benjamin Gilmer and/or the TAL producer believe should have happened, had the HD diagnosis been clear at the time of the trial. Minimally, they seem (rightly, I'd think) to believe that he shouldn't have been found competent to represent himself. Beyond that, they both remark that "he shouldn't be [in prison]." Neither one is a lawyer, so who knows, but perhaps they meant not that HD should have been an affirmative defense to the crime of murder, but only that his HD should have been a very significant mitigating factor in his sentencing after conviction (which seems right), and/or that he should be involuntarily committed to a psychiatric facility rather than to prison. Of course, he'd apparently already been moved to in the psych ward of the VA prison system, so maybe they want him entirely released (until he requires private care). It's possible that Gilmer/TAL would have Vince's HD operate as an NGRI defense. And under Virginia law, I suppose he could possibly meet the "irresistible impulse" prong of that defense. That was, after all, his lay testimony at trial (it's not entirely clear from the episode what his legal theory was), though he coupled that testimony with only his "serotonin-starved brain" theory, which, unlike HD (one presumes), may not have qualified as a bona fide "mental disease or defect." But of course then we run into the classic case of the double-edged sword of genetic/neuro evidence as simultaneously suggesting both reduced culpability and increased future dangerousness. HD isn't curable or treatable, though maybe anti-psychotics would have some effect on his irresistible impulses, and as he deteriorates, he'll sadly reach a point where he won't be capable of physically endangering others.

Anyway, leaving aside the stigmatizing omission about how rarely people with HD harm others, it was surprising to me that TAL didn't bring in anyone to discuss the legal implications of the HD diagnosis, especially since they ended with Benjamin dedicated to the idea of "becoming Vince's lawyer" in order to free/clear him.

[Brad Areheart]

Hi Michelle. Thanks for your post. I too listened to this episode (prior to seeing your entry here) and found it engrossing. It was a fascinating "investigation"/re-telling of a horrible set of criminal acts, humanized and made even more interesting by the Gilmer who was doing the investigating and seemed both incredibly honest and noble.

But to be candid, I really didn't take away from listening to this that Huntington's commonly causes people to be violent or lash out in unpredictable ways. The emphasis derived from the diagnosis seemed to be on those things you noted: that he wasn't competent to defend himself, that perhaps the remainder of his sentence should be changed in some way, etc. Nor did I catch the implication that HD may have caused Gilmer's father to abuse - but I may just have missed it.

I also didn't find it too surprising that they didn't spend more time on the legal implications of the HD diagnosis (though I would have been interested). I think the point of the show was something much more aesthetically limited and intriguing (spell-binding even?) ... to explore the mystery of this set of circumstances and potentially help solve the mystery of how a seemingly kind and generous doctor could have committed the acts he did under the circumstances that he did. (Though of course I don't think they ever spent time re-examining all of the things he did along the way that suggest it was premeditated, which the whole case seemed to hinge on when the trial took place.) All that to say, I don't share your worry at all, but I understand where you are coming from. I suppose they could have taken 5 mins toward the end to discuss how unusual such behavior is for someone with Huntington's but then again, I assume the average viewer would think the type of behavior at the core of this show - no matter the condition with which it is associated - is quite, quite unusual.

[Becky]

Thanks for this post. I am also a huge TAL enthusiast and I was really upset about this episode. I am a prosecutor and they totally missed / misled regarding whether Dr. Gilmer's mental issues could (1) bar him from representing himself and / or (2) mitigate or obliviate his criminal responsibility. Usually they have such great journalism, but I felt that this particular episode bordered on irresponsible, given the lame-o legal discussion at the end (they couldn't even interview a defense attorney? Review the jury instructions for mental defenses? Consult with a lawyer to find out why Dr. Gilmer was able to represent himself) and I, too, was concerned that they painted folks with Huntington's disease as dangerous. (Never mind the fact that they did not and could not prove whether the onset occurred prior to the murder.) Mental illness is not always a legal defense - lots of people have mental illness but still have control over their actions and know the difference between right and wrong. There is no indication that Dr. Gilmer lacked an appreciation of the difference between right and wrong or somehow lacked control. I expect better reporting.