You Can’t Fix What Ain’t Broke: Combating the Dangers of Reparative Therapy

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

Earlier this week, the New York State Assembly overwhelmingly voted to pass a bill that would ban the use of so-called “reparative” or “conversion” therapy – treatments that aim to change sexual orientation – on minors. During the time I wrote this commentary, the New York State Senate had yet to vote on the bill. They have until the end of today, when the 2013-14 legislative session officially closes, to pass the bill. Should it pass, Governor Cuomo is expected to sign the bill into law. This would make New York the third state – following California and New Jersey – to outlaw efforts to turn gay kids straight.

Over 250 organizations around the country currently offer reparative therapy to adults and to minors. Many insurance plans, including Medicaid, also cover the costs of mental health counseling and treatment for homosexuality. This is despite the lack of evidence that conversion therapy works.

Most of the scientific studies conducted to date show that conversion therapy is ineffectual and even harmful. In 2009, for example, the American Psychological Association’s Task Force on Appropriate Therapeutic Responses to Sexual Orientation conducted a comprehensive review of all available research on reparative therapy. That group concluded that a person’s sexual orientation could not be changed. While some people are able to change their sexual behaviors —by becoming celibate rather than having a relationship with a partner of the same gender — their physical and emotional attraction to members of the same sex remained. Other professional organizations, including the American Psychiatric Association, the American Counseling Association and the National Association of Social Workers have reached similar conclusions about the efficacy of reparative therapy.

Of the few studies that actually suggest that conversion therapy works, most are fundamentally flawed. For example, there is the oft-quoted study from famed psychiatrist Dr. Robert Spitzer. That study, which interviewed a small group of gay men and women about their sexual feelings and behaviors before and after reparative therapy, concluded that, “some people can change from gay to straight.”

But participants in that study were recruited through groups like the National Association for Research and Therapy of Homosexuality (NARTH), an organization that actively promotes the use of reparative therapy. Most of the participants described themselves as deeply religious, and many were politically active ex-gay advocates. The results of that study are thus heavily biased. Dr. Spitzer himself retracted this study in 2012, stating that he “owed the gay community an apology”. Nevertheless, this study is still cited by NARTH and other anti-gay organizations as conclusive proof that homosexuality is a malleable lifestyle choice rather than an immutable biological fact.

Being gay is not an illness, and it doesn’t need to be treated through therapy. What should be treated is the erroneous belief that people can (and need) to be cured of their homosexuality. When a group like the Texas Republican Party adopts a platform that, “recognize[s] the legitimacy and efficacy of counseling, which offers reparative therapy and treatment for those patients seeking healing and wholeness from their homosexual lifestyle,” they demonstrate their ignorance of facts.

Opponents of legislation that bans reparative therapy, such as Cathie Adams, president of the conservative Texas Eagle Forum, like to describe this as an issue of freedom. Ms. Adams spearheaded the effort to get Texan Republicans to endorse reparative therapy because she does not think that, ”homosexuals are born as homosexuals.” She believes that gay men and women should have the right to seek out reparative therapy and thus be rescued from an immoral lifestyle choice.

What folks like Cathie Adams fail to understand, however, is that endorsing conversion therapy doesn’t promote freedom. Rather, it does the exact opposite. It allows (and even encourages) parents to force risky and unnecessary treatment on children and teens that they see as “sick”. It also reinforces dangerous but socially accepted stereotypes that gay men and women are mentally ill or physically diseased, and thus contributes to the continued and destructive stigmatization of sexual minorities in the US.

Such stigmatization and discrimination is why gay men and women are more likely to be the victims of harassment, bullying and violence. It is also why they have higher rates of anxiety, depression, substance abuse and suicide. This is particularly true of gay men and women who undergo reparative therapy, which explains why groups like the American Psychiatric Association and American Psychological Association openly condemn attempts to change an individual’s sexual orientation.

Quite simply, reparative therapy is wrong and should be banned. It should be banned for everyone, not just for teenagers as California, New Jersey and (hopefully) New York have done.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 19, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Forgiving Fred Phelps

by Sean Philpott, Director of the Center for Bioethics and Clinical Leadership

Fred Phelps, one of the most reviled men in the United States, died last week. Mr. Phelps was the founder of the Westboro Baptist Church, a virulently homophobic organization known for its “God Hates Fags” slogan.

Members of the Westboro Baptist Church have been conducting anti-gay protests since 1991, but the group gained national prominence in 1998 when it picketed the funeral of Matthew Shepard. As most people know, Mr. Shepard was a young man from Wyoming who was robbed and beaten to death by two men who targeted him because he was gay. His murder and the subsequent trial of his assailants, dramatized in the award-winning play The Laramie Project, helped to raise public consciousness about anti-gay bullying and hate crimes against sexual minorities.

The Westboro Baptist Church now conducts an average of six or more protests a day. Church members routinely picket the funerals of other gay men, particularly those who were the victims of hate crimes or who died of HIV/AIDS. They also protest at performances of The Laramie Project, at concerts given by musicians deemed to be LGBT-friendly, at Jewish and Muslim religious services, and even at the funerals of soldiers killed in Iraq or Afghanistan. Those wars, Church members believe, are divine punishment for “[our] evil nation for abandoning all moral imperatives that are worth a dime.”

Despite the fact that Mr. Phelps and his followers believe that my husband and I are directly responsible for all of the ill fortune that befalls Americans, I do not celebrate his death. While I am not going to mourn the passing of a hate-filled man such as Fred Phelps, I’m not going to take perverse happiness in it either. In fact, I find it sad that he left this world without a chance to find peace, love, redemption and forgiveness.

Many of my friends and family find this a bit shocking. When I posted this sentiment on Facebook, for example, one colleague commented that she’d have a hard time finding forgiveness for a guy who, by picketing the funerals of combat soldiers, put grieving families through so much additional pain.

I see it quite differently. People like Fred Phelps are exactly the ones that need our forgiveness. Moreover, forgiving those who have hurt us — particularly those who have done nothing to deserve forgiveness — gives us great power and strength. This is a lesson that I learned several years ago after having lunch with a remarkable woman named Eva Mozes Kor.

Ms. Kor is a Holocaust survivor. At the age of 6, Romania-born Eva and the other members of her family were sent to the infamous Auschwitz concentration camp. While there, Eva and her twin sister Miriam were the subjects of horrific medical experiments by Dr. Josef Mengele. Despite this, they both survived and were liberated by Allied forces near the end of the war. Eva eventually emigrated to the US while her sister moved to Israel. Together, they founded an organization called CANDLES (Children of Auschwitz Nazi Deadly Lab Experiments Survivors), through which they began to locate other survivors of Dr. Mengele’s research and to publicize the experiences of Holocaust survivors.

But Ms. Kor also did something completely unexpected and extremely controversial. Fifty years after the liberation of Auschwitz, on the very site where so many died, Eva announced publicly that she forgave the Nazi’s for what they had done to her. She didn’t deny that inhumane atrocities had occurred in the camps, nor did she believe that these crimes should be forgotten. She simply forgave those that had wronged her, freeing herself from decades of victimhood and suffering.

Hearing this story from Ms. Kor inspired me to do the same in my life. I forgave a former employer for a myriad of wrongs, letting go of my anger while still embracing the management lessons that I learned. I even forgave my former stepfather for a decade of mental and physical abuse, recognizing that my own compassion is a direct response to his lack of caring and concern.

I believe that Fred Phelps deserves the same. In fact, we should even thank Mr. Phelps and his followers for their hate-filled rhetoric. By taking the same rhetoric and opinions spouted by many ‘good Christians’ to the extreme — through slogans like “God Hates Fags” and “Thank God for Dead Soldiers” — the Westboro Baptist Church showed just how pervasive and perverse homophobic attitudes are. It’s even possible that many of the recent advances in gay rights wouldn’t have been achieved without Fred.

Thank you, Mr. Phelps, for being a role model for kind and caring people around the world. You and the others like you teach us what we should strive not to be. I only hope that you find the love and compassion in the next life that you so sorely lacked in this one.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 27, 2014. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Doctor Knows Best?

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

At one time or another we have all said something we regret. For Christina Schumacher that “something” happened last summer. Christina was in the midst of separating from her husband, claiming reasons of domestic abuse. At the time, she told her sister that if anything ever happened to her children she would kill herself. Christina and her husband had a 17 year old daughter and a 14 year old son.

On December 18th Christina’s estranged husband and their 14 year old son were found dead in an apartment. Dad had strangled his son and then hung himself.

The next day Christina went to her regularly scheduled appointment with her psychologist. Her doctor had decided, before she arrived, that she should check herself into the hospital psych ward and had the police ready and waiting in case Christina disagreed.

She didn’t agree, she wanted to be with her 17 year old daughter through their grief. This however, was not an option and she was taken to Fletcher Allen Health Care where she remained for the next 5½ weeks.

Christina was released, by order of a judge, about a week ago. The judge stated that he saw no legal reason she should have been committed or should remain in the hospital and ordered her immediate release.

Christina’s story raises some questions about the doctor/patient relationship in a mental health setting. What rights do psych patients have? How can we best assess their capability to make decisions? What is the line where involuntary commitment becomes necessary?

I understand the concern the psychologist must have felt, and how difficult it must be to determine if a patient needs to be committed. What if Christina had been unstable and harmed herself or her daughter? I am sure the doctor felt there was enough information from their past meetings to warrant the decision of commitment.

However, we never really know how we will react to tragedy. We often say things like: “I could NEVER do that.” Or “I would flip out if that were me.” I am no stranger to this kind of thinking, before my dad ended up in the hospital last fall my internal monologue was: “I wouldn’t be calm talking about taking someone off of a ventilator…especially someone I loved…I would be a puddle…there wouldn’t be enough tissue in the world…” Yet, there I was, in the exact situation I most feared, calm, collected, and making the tough decisions with tissue to spare. 

What we say we will do and what we do are often worlds apart. Christina’s psychologist would have been wise to keep this in mind during her appointment that December day.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on February 2, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

In Sickness and In Health

by Sean Philpott, Director of the Center for Bioethics and Clinical Leadership

Just two weeks ago, the US Supreme Court struck down the Defense of Marriage Act, which barred federal recognition of same-sex marriages even if they took place in one of the 13 states or in the federal district where such weddings are legal. In a 5–4 decision, the Court ruled that key sections of the Act were unconstitutional because they deprived same-sex couples of liberties protected by the Fifth Amendment.

The Defense of Marriage Act, or DOMA as it is colloquially known, was passed in 1996 when it appeared that Hawai’i was about to legalize same-sex unions. Fearing that other states would be forced to recognize those marriages, Republican and Democratic politicians alike quickly and overwhelmingly voted to limit the federal definition of marriage to unions of heterosexual couples. The Act also allowed states to refuse to recognize same-sex marriages granted in other states.

Despite Congressional haste in passing DOMA, same-sex marriage did not become legal in the US until nearly eight years later. In May of 2004, Massachusetts became the first state to allow such unions. So it was only then that the law’s effects became apparent. Specifically, the federal government provides nearly 1,200 different rights, benefits or privileges to married couples, including health insurance, pension and disability benefits, financial aid, immigration status, and survivor benefits. Until last month, these rights, benefits and privileges were denied to same-sex married couples.

One thing that supporters and opponents of legalizing same-sex marriage can agree on is this: the institution of marriage matters. The federal rights, benefits and privileges denied to same-sex couples until last month are important. Should I need to, my husband of 5 days – yes, I got married this past Saturday and yes, I married a dude – can be put on my health insurance plan without my paying a financial penalty. Should I be confined to a nursing home or long-term care facility in my later years, he will also have full visitation rights. And when I die, he will inherit my albeit-meager estate without being forced to pay inheritance taxes.

But getting married has benefits that go above and beyond what the government offers. For instance, married couples tend to be happier. A recent survey of nearly 100,000 couples found that getting married had a greater positive effect on individual happiness and wellbeing than religious faith, a stable job, or having children. On average, married people were happier than those who are cohabitating, single, divorced or widowed.

Other studies have found a strong correlation between marriage and mental and physical health. People who never marry are far more likely to die at a younger age. They are also more likely to suffer from cardiovascular disease, diabetes, cancer, long-term illness and disability, mental illness or substance abuse. This is true even for couples that live together for a long time but never marry. Cohabiting couples don’t see the same health benefits as those who wed. There’s just something about being married.

There are any number of reasons to explain why this may be the case.  For example, married couples tend to have greater economic and financial stability, which is not only less stressful but enables them to eat better and see a doctor regularly. Because most health insurance plans cover spouses, marriage increases the likelihood of having insurance. It also reduces the likelihood of becoming uninsured after a job loss or other major catastrophic event. Finally, married couples have higher levels of social support, both within the relationship itself and from family and friends. This may encourage them to make healthier choices, but also provide a mental and emotional buffer when dealing with personal challenges.

Of course, correlation is not causation. Moreover, it’s the quality of the relationship that matters. A troubled or tumultuous marriage can adversely affect the wellbeing of those within it; it’s no misnomer to call these relationships ‘unhealthy’.  For most of us, however, marriage is likely to lead to better health and a longer life.

Most of us marry for love, some of us marry for money, and still others marry for a variety of personal and family reasons. I got married because I love my husband and because I want my friends, family and the rest of society to recognize that commitment. I didn’t get married for the government benefits. Nor did I get married for the boost to my health. That’s just an added bonus and, since I want to spend the rest of my life with the man of my dreams, gives me that many more years to enjoy his company.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 11, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Kudos to This American Life

by Michelle Meyer, Bioethics Program Faculty

A few weeks ago, I blogged about a recent episode of This American Life (TAL), “Dr. Gilmer and Mr. Hyde,” about the quest of one Dr. Gilmer (Benjamin) to understand why another, beloved Dr. Gilmer (Vince), had brutally murdered his own father after hearing voices that compelled him to do so. The episode ends (spoiler alert) with the revelation that Vince suffers from Huntington’s, a rare, neurodegenerative disease that causes progressive physicial, cognitive, and psychological deterioration.

Listeners, it seemed to me, could naturally conclude from the episode that it was Vince’s Huntington’s that had caused him to murder his father. That might or might not be true in this particular case. Huntington’s can cause behavioral and mood changes, including irritability, aggression and belligerence. It can also cause (less often) psychosis. But even if Huntington’s caused Vince to murder his father, or somehow contributed to the murder, the extreme violence that Vince displayed — strangling his father, then sawing off his father’s fingertips to preclude identification — is in no way typical of the Huntington’s population as a whole. And so what most troubled me most about the episode was its failure to note just how rare this kind of extreme violence is among those with Huntington’s, just as it is very rare among human beings generally. And so I wrote to TAL, requesting a clarification.

I’m happy to report that the TAL producer for the episode, Sarah Koenig — who had not intended to suggest any causal link between Vince’s murder of his father and his Huntington’s, much less between murder and Huntginton’s more generally — has issued a clarification on the show’s blog, and promises to make a similar clarification in the episode itself, should they ever re-air it. Kudos to TAL, and many thanks to Sarah for being incredibly gracious in our exchanges.

One clarification deserves another. In my earlier blog post, I also worried that some listeners might  conclude that Vince’s father was similarly driven to commit horrific acts of sexual abuse on Vince and his sister because he, too, was (presumably) suffering from Huntington’s (an autosomal dominant genetic disease). Although I think that a listener who didn’t know better could reasonably conclude that Huntington’s causes people to become sexual predators almost as easily as they could conclude from the episode that Huntington’s causes people to become murderers, nothing in the episode suggests that Sarah, Benjamin Gilmer, or anyone else at TAL believe that Huntington’s causes sexual abuse, or that they intended for listeners to reach that conclusion. I regret anything in my earlier post that suggested otherwise.

Again, I’m very grateful to Sarah and everyone else at TAL for hearing me (and other listeners) out and for agreeing to make the clarification — and just in time for HD Awareness Month!

[The contents of this blog are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

This American Life and Stigma

by Michelle Meyer, Bioethics Program Faculty

UPDATE: This American Life has made a clarification. Please see Prof. Meyer’s latest blog post for more.

Let me begin by saying how much I absolutely adore This American Life (TAL). 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 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 brought 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 life in prison without the possibility of parole.

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, University of Virginia School of Law’s Richard Bonnie suggested that instead of making that argument in court, they pursue compassionate release.

I’ll leave others to comment 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.

[This blog entry is adapted from one originally posted on the blogs Bill of Health and The Faculty Lounge on April 18, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

We’re All Mad Here.

by Sean Philpott, Acting Director of the Center for Bioethics and Clinical Leadership

One of my favorite movies of all time is ‘As Good as It Gets,’ which stars Jack Nicholson as a grumpy, obsessive-compulsive writer. In one classic scene, he tells his neighbor’s housekeeper to “sell crazy someplace else, we’re all stocked up here.”

This will soon be true, at least for most Americans. There are plenty of crazy people out there: Aurora shooter James Holmes, Philly abortion doc Kermit Gosnell, and the individual who bombed this week’s Boston Marathon. But the ranks of the mentally ill will soon expand dramatically.

The belief that we’re all a little bit nuts is nothing new. In the 1865 novel ‘Alice in Wonderland,’ the Cheshire Cat tells Alice, “We’re all mad here. I’m mad. You’re mad.” Come the summer of 2013, this will indeed be the case. Over 50% of Americans will, under new diagnostic and treatment guidelines, suffer from some sort of mental disorder in their lifetime.

In May, the American Psychiatric Association is scheduled to release the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V). Often called the ‘psychiatric bible,’ the DSM provides a set of standard criteria for determining whether or not someone is suffering from a mental illness.

The DSM is widely used in the mental health community. Clinicians use it to diagnose patients. Insurance companies use it to determine whether they will pay for treatment. Pharmaceutical companies use it to set drug prices and plan marketing strategies. Policy makers use it to make decisions about which mental health programs to fund and who is eligible to receive government assistance. Lawyers and judges use it to determine if a criminal can be held responsible for his crimes or whether a mother should be granted custody of her kids.

Obviously, there is a strong incentive on the part of many stakeholders to make the DSM as broad as possible. For example, physicians want to get paid for seeing patients, but often can’t if the patient doesn’t have a recognized illness. Similarly, drug companies want to convince patients that they have a treatable condition so that they will pester their doctors for a prescription.

So, while only 5% of Americans will have a severe mental illness in a particular year, under the DSM-V nearly a quarter of us will have a treatable disorder at any given time.  Half of us will need treatment at some point in our lives. That’s a lot of doctors to see and pills to take.

Are we really any crazier than we were a generation ago? Perhaps. Some reliable studies suggest that the incidence of conditions like anxiety, neuroticism and narcissism have increased over the past couple of decades. However, much of the increase in disease prevalence can be explained away.

We’ve also gotten a lot better at detecting mental illness, with doctors more aware of the signs and symptoms of common illnesses like depression, attention deficit hyperactivity disorder, or substance abuse. Increased awareness leads to increased diagnosis. In addition, while there is still considerable stigma and shame associated with mental illness, it has decreased in recent years. People suffering from psychiatric disorders are more likely to seek treatment and to be open about their illness. These are good things.

But what worries me is that the DSM-V also classified conditions that are physical not psychological in nature – such as caffeine withdrawal and obstructive sleep apnea – as diagnosable mental illnesses. It also drops Asperger’s as a separate disorder, lumping it in with other autism spectrum conditions. Soon, people living with Asperger’s will have a new diagnosis, which will affect both treatment and their ability to receive services.

Moreover, we will soon be pathologizing behaviors that would, in the past, be seen as quirky but not necessarily unhealthy. For instance, the DSM-V will include paraphilias – atypical sexual interests like bondage or sadomasochism – as diagnosable conditions. What is for some a natural albeit unusual expression of human sexuality could now affect child custody, employment and insurability decisions.

No wonder then that some prominent physicians have described the forthcoming release of the DSM-V as, “a sad day for psychiatry”. Diagnosing and treating mental illness is a challenge, but it’s a challenge that the American Psychiatric Association’s new guidelines fail to meet. The only thing that these guidelines do is to make us all a little bit crazy.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on April 18, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

A Suicide Attempt, Part 2

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)

*All names are false. This is my narrative surrounding a case consultation I had conducted as a part of my job as a clinical ethicist. This post will discuss the more clinical details surrounding the case. In particular it evaluates the process ‘we’ followed during the case. The thoughts and opinions are my own, and do represent those of any other health care professional, or of any institution.

We were all relieved to know that Bonnie* would die soon. I don’t say that lightly, or in jest, or in some inhuman or discompassionate sense. But we did things to her body, things that we all thought, with confidence, she did not want us to do. So when that decision was finally made, the weight of air left the room. It was a heavy air. Heavy on Jack and Alison, who had to exercise a type of patience that is so rare, for situations just like this. Heavy on Dad, whose emotions for his recently passed wife had to be paused and set aside, so that he could discuss how he was so sure that his own daughter wanted to die. And so we arrived, to the family meeting to tell the family that Bonnie’s condition had not improved, and had in some sense deteriorated. We needed a new plan for Bonnie’s care, and since we couldn’t talk to Bonnie herself about them, we went to the family. We knew what they would say. They seemed relieved when they could say it, this time with the authority they believed all along that it had: Bonnie would not want any of the present interventions, that she should be put on a comfort care plan and be allowed to pass.

Perhaps the most tragic part of this story is that her dad and Alison even found her in the first place. Dad acknowledged that to me in my first conversation with him. “What if we had been another ten minutes later? Would we even be in this situation?” he asked, slightly angry at his own instinct to rescue his own daughter and the subsequent cascade of events.

But there we were, in this cascade of events that was on an odd sort of autopilot. Known as the ‘rule of rescue’, this standard of medical practice is invoked when patients arrive to a medical facility with unknown context regarding their ability to consent to what we are about to do to them. This rule of rescue is very uncontroversially used in emergency departments. If a patient presents to the ED- unconscious and bleeding- following an auto accident, we automatically treat the person and attempt to treat the injuries without first attempting to obtain their permission. Technico-legally, we are providing justification against future potential charges of medical battery. In the absence of adequate knowledge to the contrary, our medical obligation is to provide full measures of treatment.

Suicide attempts are a bit trickier. The context of the injuries tend to be less obscure. The car accident in the above example doesn’t necessarily correlate to the patient’s wishes to accept or refuse life saving treatments, but a suicide attempt is a little clearer. It is not a logical feat to say that because Bonnie tried to end her life, she would also not anyone else to do things to keep that life going. Some suicide attempts are indeed an act of last resort for a person to get the attention and subsequent help that they need. Depression, reactive to an event or prolonged and intractable, untreated or untreated, could be a cause of the suicide attempt. The suicide attempt is instead a clinical manifestation of an underlying condition, one which has not yet been medically optimized, and therefore an injury that we are obligated to treat as well.

This slight obfuscation, though, is all it takes for suicide attempts to take a different trajectory than other treatment scenarios. Simply put, then: when a patient arrives following a suicide attempt, we aren’t sure they rationally wanted to end their life, or if this was a symptom of an underlying condition for which the patient could also be treated. The rule of rescue is applied here, then, as the window of time in which the patient is to be medically optimized.

Patients have a well established ethical principle in autonomy that ensures that a patient themselves can accept or refuse medical interventions. But in order for that to happen, we must have confidence that they can actually be in such a state as to express their autonomous choice. We call this decisional capacity. It means that the patient can understand and appreciate the proposed treatment, and that they can evaluate the risks, benefits, and alternatives, and can communicate a choice that is consistent with their values. The threshold for capacity increases with the increasing level of complexity of the medical decision. When patients lack adequate capacity to make the decision asked of them, we seek out others (known as surrogates since they are making decisions in place of another person) to make a substituted judgment, where we must ask the surrogate to make the decision as the other person would make it if he or she were able. (I must note that this is often misinterpreted as “deciding to let Mom die”, but that is for another time.)

In this case, Bonnie’s wishes, as interpreted by her family, were clear and consistent. She had written in a note prior to taking her “polypharmacy overdose” that explained why she no longer wanted to live, and requested that her family respect her decision. Her family reflected on the last few years. While she never said explicitly that she would not want to live without Mom, her actions and behaviors made it a predictable outcome. One of the first words I heard to describe Bonnie’s relationship with her mother was “dyad”. The other dominant word was “codependent”. Bonnie had little if any meaningful social structure outside of her mother. Bonnie had a negative self-image, but saw the tolerance in her mother’s relationship, which provided an insulation to anyone else possibly agreeing with her own self-critiques. While the effects of her cerebral palsy were fairly well managed, the diabetes and inability to maintain her weight caused additional problems (she classified as being morbidly obese). Her slow decline in health increased her dependence on her mother. Her mother had a correlative decline in health over the past few years, which increased her dependence on Bonnie for day-to-day tasks. The two of them were dancing each day around each other, very slowly, in a spiral of declining health. Their dance had become so intimate that the removal of either partner would result in the other falling down. This was the assertion of the family.

But our medical reply was the rule of rescue. We are obligated by the principles of beneficence (doing good- preserving life in this case) and non-maleficence (avoiding harm- potentially allowing a person to die who may not really want to) to be more confident, to pause and consider the possibility that Bonnie may have wanted to live. So pause we did. We were in the midst of the rescue event, without any clear timeline for how long it would last. The rescue event would last as long as her conditions upon admission were resolved- her pneumonia, her reliance on organ support for her lungs, and (hopefully) a psychiatry consult to evaluate possible depression. So pause we did.

Bonnie was in the ICU for over two weeks. During that time she was intubated, connected to a ventilator that was breathing for her. She had developed an aspiration pneumonia, which cleared and she appeared well enough to extubate her and removing ventilator support. Once she was extubated, she whispered, “My mom is dead”. That was all. Her breathing didn’t improve however, and had be re-intubated. She never spoke again. She developed another pneumonia. Throughout it all, she was agitated. Really, really agitated. She was restrained due to her repeated attempts to pull out her ventilator tube. She was never really “with it”, mind you; she never regained enough capacity to have an adequate conversation, although she was able to briefly follow simple “yes” and “no” commands. Her agitation declined into a delirium, a common side effect of prolonged intubations and ICU stays. It was at this point that her condition, the totality of her damaged condition, exceeded the raw benefit of establishing a psychiatric baseline. The rescue event was over. It was time to rethink her goals. It was time to have the family weigh in.

I understand the process we followed for this very challenging case. I can cognitively construct the logical course, the ethical justification, and the clinical trajectory of what I did. But what I can’t shake- not yet, at least- is that I was right all along. We were going to prolong this woman’s suffering so that we could be right. Because for us to be wrong would have meant that we violated such foundational principles of good medicine, that we allow to die a person that ought to have lived. I still struggle with that. Part of my struggle is that the process we followed, in my opinion, is flawed. I am early enough in my career to know what I don’t know, and the ethics of suicide attempts I don’t know. But in this case, which I consider a ‘standard’ case, plays out in my head as this: 1) Bonnie wanted to die. 2) Medicine got involved, and needed to be sure she really wanted to die, so she went to the ICU. 3) Her prolonged ICU stay led to complications. 4) The complications of her hospitalization became the primary cause of her hospitalization; her suicide attempt became secondary. 5) The rescue event ended; her goals of care should be revisited. 6) She is unable to participate, so we go to the family to obtain substituted judgment. 7) The family asserts that she wanted to die.

Bonnie got what she wanted, albeit later than she wanted. Medicine got what it wanted, albeit later than it wanted. Then why is it that I feel so broken over this?

[This blog entry was originally posted on Mr. Dahlke’s blog on April 16, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

A Suicide Attempt, Part 1

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)

*All names are false. This is my narrative surrounding a case consultation I had conducted as a part of my job as a clinical ethicist. I will (likely) discuss at another time the more philosophical and ethical components of the case, and the dialogue and recommendations will be more objective. For now I find value in exploring simply the human side of it. None of this is fiction; it is, however, a filtering of the clinical information through my own perspective.

Bonnie*, 47, tried to kill herself. No one disputes that. That was clear from the phone call with her brother Jack*, the one in which her brother said that Dad and sister-in-law Alison* were coming back home to get her and bring her to the hospital. Mom wasn’t good, and they were going to move her to comfort care measures. She was going to die soon, and Dad and Alison were going to bring in Bonnie to say goodbye.

That was enough for Bonnie. She sat down and began to write. Her fingers still worked well enough for that, writing. The cerebral palsy may have taken away some, many, parts of her life, but she could still write down the kind of cat food to give Kit. She knew that she wanted to give away all of her clothes to the local Goodwill. She knew, and she wanted her family to know, that she had given this a lot of thought. Years. After all, everyone had that sense about Mom, she really had started to decline over the last two years. Everybody knew she wouldn’t be able to stay much longer. Bonnie knew that too. She also knew that she didn’t want to live without Mom. It’s not that she couldn’t, but that she wouldn’t. She wanted the family to know that, and to respect it. And so she wrote.

I can’t imagine finding my sister, or my daughter, not like that. Not when we are all supposed to go back to the hospital to say goodbye to Mom. I get that. I would have called 911 too. Probably even if I saw the note first, sitting calmly to read it and try to decide how best to understand and honor Bonnie’s last wish- to be left alone. I can rationally imagine myself doing that. But then I would look over, and see Bonnie, next the table where I found the note, dying before my eyes. I would call 911 too.

Once the medical team gets involved, an interesting thing happens. It becomes very, very hard to convince us to honor that last wish. Was she suffering from underlying depression? Was it undiagnosed? Untreated? Undertreated? Was this a rational decision, or an irrational one? How much confidence do we need from the family’s account to stop what we are doing, and to let her pass? I don’t presume to have the answers to, well, any of it. And yet, that is what is asked of me. And so we go, together, to try and find some answers.

Let’s begin medically. Bonnie is intubated, and sedated. She likely aspirated on some of the charcoal she was given to counteract all of the medications she ingested. She now has pneumonia, for which she is being treated with antibiotics. Medically speaking she is in the midst of what we refer to as a “rescue event”. This means that we are in one sense on autopilot. That is, our medical obligation is to complete the event, and attempt to stabilize her until we can ascertain the nature of her actions. For Bonnie, that means we are trying to treat her pneumonia, which will increase the chance we can get her to breathe on her own and remove her from the ventilator. Until that happens, we won’t be able to say with confidence that she didn’t simply react to the terrible news about her mother, and that while difficult, she really wants to live. Primum non nocere; first, do no harm. How harmful is it to withdraw everything at our disposal to let this woman die, if she really wouldn’t want to? No, we need to be more confident.

Bonnie didn’t really seem to enjoy her life the way the rest of her family did. She managed well enough with the recurrent kidney stones, with the mild epilepsy. She worked hard, to be sure, likely harder because of the cerebral palsy. She got her associate degree, and she worked with kids. She worked with three families’ kids – six in all – and was their nanny. From birth to school age, she helped to raise these kids. It sounds like she was pretty good, too. One, now 17, is having a hard time thinking that his “B” may be gone. She eventually couldn’t do it anymore, though, due to her CP.

The weight always seemed to bother her, too. She could never quite get her diet just right, and she seemed genuinely frustrated at the slow but consistent weight gain. It affected her self-confidence, too. Having a social life with cerebral palsy, she could do. Having extra weight may have been manageable too. But both, they both seemed to feed each other, and starve whatever positive image she had of herself, until there just wasn’t anything there. It would likely be hard to put yourself out there and trust someone, even socially, if they hadn’t been there through it all. Seen the slow burn of her CP never improving, of her rarely ever losing any weight and only gaining it. Of getting the regular Botox injections not out of vanity, but out of necessity. She didn’t have friends, then. None that she could trust with anything beyond the superficial. None like Mom at least.

Mom and Bonnie were described as a dyad. Codependent. Yin and yang. Jack and Alison acknowledged it. Dad admitted that he never had that relationship with either of them. He said it with perhaps the slightest tinge in his eye when he says it. Is it jealousy? Sadness? Anger? Regardless, it seemed self-evident that they had a relationship that was far more intimate with each other than with anyone else in their lives. They relied on each other for the day-to-day tasks. They went with each other to the doctor’s appointments. Their health declined together.

I tried to imagine Bonnie’s world, to try to determine her choice could be rational. She made plans for the future. She was a pretty efficient knitter, even having limited function on her whole left side. She knitted stocking caps for kids in a local school. She was planning on making more. She had plans. But I think, I think, that she also knew that on this highway of life that she was on, there was an exit ramp ahead. She didn’t know how far out it was, but she would know it when she saw it. It would be when Mom died. But until then, what’s the point of sitting around and just waiting to die? She may as well knit something in the meantime.

[This blog entry was originally posted on Mr. Dahlke’s blog on April 8, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Bright Shiny Things

by Sean Philpott, Acting Director of the Center for Bioethics and Clinical Leadership

On Tuesday, the US Centers for Disease Control and Prevention (CDC) released startling new data on the incidence of attention deficit hyperactivity disorder (ADHD) in American kids. According to the CDC, over 6 million children between the ages of 4 and 17 have been diagnosed with ADHD. Despite coming on the heels of April Fool’s Day, those numbers are no joke.

Over the past ten years, diagnoses have skyrocketed. Eleven percent of all school age children in the US have received an ADHD diagnosis, nearly twice the number seen in 2001. Rates are even higher among older kids, with nearly 20% of high school age boys having a diagnosis. One in ten adolescent boys are currently taking prescription stimulants like Ritalin or Adderall to treat the condition.

The reasons for the startling increase in rates of ADHD among American children are unknown. One possibility is that physicians are becoming more knowledgeable about the condition, enabling them to recognize it in their patients. Perhaps, but one of the problems that doctors face is the lack of clear diagnostic criteria for ADHD.

Like other attention or hyperactivity disorders, ADHD is characterized by a diffuse set of symptoms. According to the current version of the American Psychological Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), symptoms of ADHD ranging from fidgeting to not listening, to talking excessively, to disliking mentally intensive tasks like schoolwork. But it is rare to find a school age kid in the US who doesn’t have some, if not all, of these symptoms, as so artfully suggested by the satirical cartoon South Park (an episode from season 4 entitled ‘Drug Free Treatment’ for those who are interested). Given the subjective nature of these diagnostic criteria, it is likely that the condition is over-diagnosed.

If I had been born thirty years later, I too would likely have an attention deficit diagnosis. In fifth grade, I was “problem child.” I didn’t pay attention, didn’t complete assignments, didn’t remain in my seat, and didn’t stay quiet in class. The reason was not that I had ADHD. The reason was that I was bored. The material being presented didn’t stimulate me intellectually. Luckily, I had a very astute teacher who recognized this. With my parent’s permission, he started giving me more challenging work to do, and my grades and behavior quickly improved.

Unfortunately, thanks to decades of budget cuts, teachers nowadays do not have the same opportunities to work with struggling students. An educator dealing with a classroom of 40 or more kids, while also being expected to write individualized student learning outcomes (SLOs) and to develop metrics and tools for assessing student achievement, cannot devote the time or effort necessary to figure out why a particular child is failing.

Parents may feel similar pressures. So when a kid is struggling in school or acting out in class or at home, frustrated parents and teachers might automatically label the child as ADHD rather than seek alternative explanations for their behavior.

Given the subjective nature of the symptoms – confirmed primarily by talking with patients, parents and teachers, all of whom have an interest in finding quick and easy answers to complex behavioral problems – it is easy to understand why many doctors feel compelled to prescribe medication. Moreover, some savvy kids may seek diagnosis and treatment on purpose, given that ADHD drugs are now popular as study aids on high school and college campuses.

Therein is one of the biggest problems: over-diagnosis leads to over-medication. This isn’t to say that some kids don’t benefit from treatment with drugs like Adderall or Ritalin. Those with severe attention deficit do benefit from treatment, developing the concentration and impulse control necessary to succeed in school and in the workplace. Untreated ADHD can also lead to problems later in life, including alcohol and drug abuse. But for kids with mild ADHD or who are misdiagnosed, pharmaceutical treatment can come with great cost.

In their advertisements and promotional materials, drug manufacturers tend to overemphasis the benefits of treatment while downplaying the risks. ADHD drugs can improve concentration and impulse control but can also have severe side effects, including anxiety, addiction and psychosis.

The CDC’s shocking statistics should serve as a warning to us all. Not that we are facing an epidemic of attention deficit disorders in the US, but that we are likely facing an epidemic of pathologization. What is normal childhood behavior has become, for harried parents, teachers and physicians, a medical condition to be treated with drugs. Increased public awareness and understanding of attention deficit disorders is a good thing, but we shouldn’t rush to the pharmacy for some Ritalin every time that Johnny fails a test or Sally talks back.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on April 4, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]