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Elective Disability and Body Integrity Dysphoria

image of human x-ray collage

Last month, Queensland police arrested 36-year-old John Yalu under suspicion of murder after he allegedly used a circular saw to cut off the leg of 66-year-old Kalman Tal, who died from his wounds soon after. Passers-by discovered Mr. Tal’s body in his car in a park in Innisfail, Australia, where the incident is believed to have occurred, and alerted the authorities to the situation. Mr. Yalu is currently in custody, and the case has been adjourned until June. Now, it seems that the men knew each other, and while this is not unique in murder cases, it does indicate that the death didn’t result from an indiscriminate, deadly assault. What does make the case distinctive is that, according to news reports, Mr. Tal paid Mr. Yalu $5,000 to use the circular saw to amputate his leg. Mr. Yalu didn’t lunge at Mr. Tal like a slasher-pic serial killer, but instead carried out a service of which Mr. Tal was aware. Indeed, local news reports that Mr. Yalu assisted Mr. Tal back to his car after sawing off his leg below the knee before departing on foot.

At this point, you’re probably wondering what on earth drove Mr. Tal to commission such an act? The simple answer is, currently, we don’t know. However, while police are still unearthing the facts, Mr. Tal’s family have theorized that he suffered from a condition known as Body Integrity Dysphoria (BID), also known as Body Identity Integrity Disorder.

According to the ICD-11, the diagnostic manual published by the World Health Organization and used as the global standard for categorizing health information and causes of death, BID is characterized by:

an intense and persistent desire to become physically disabled in a significant way (e.g., major limb amputee, paraplegic, blind), with onset by early adolescence accompanied by persistent discomfort, or intense feelings of inappropriateness concerning current non-disabled body configuration. The desire to become physically disabled results in harmful consequences, as manifested by either the preoccupation with the desire … significantly interfering with productivity, with leisure activities, or with social functioning … or by attempts to actually become disabled have resulted in the person putting his or her health or life in significant jeopardy.

In short, those with BID suffer due to a discrepancy between their self-perceived identity and their bodily construction (typically a limb); they see themselves as disabled people trapped in the body of non-disabled people. In the case of Mr. Tal then, it seems his family believe that he paid Mr. Yalu to undertake the amputation as a DIY treatment for his undiagnosed BID. The presence of the limb in question caused Mr. Tal suffering to such an extent that he felt he had no other option but to have it removed.

While the ICD-11 recognizes BID, it does not provide any recommended treatment. Indeed, the appropriate treatment option for the condition is disputed as it’s highly resistant to traditional interventions such as psychotherapy and medication management. From the small-scale studies and anecdotal evidence available, it seems that amputation is the only intervention that provides long-lasting and consistent relief from suffering.

However, as I’m sure you can imagine, the prospect of medical professionals deliberately disabling otherwise healthy people to cure them of their mental anguish is one that strikes many as inherently wrong. As the prominent bioethicist Wesley J. Smith writes:

These sufferers deserve our empathy, support, and intensive mental health interventions. But it should go without saying — but no longer can — that doctors should never be allowed to remove healthy limbs or snip spinal cords, which would be, by definition, to cause harm in contravention of the Hippocratic Oath.

Now I don’t begrudge Smith for holding this view (even though he’s criticizing a paper I wrote). The idea that doctors should heal, not hurt their patients is a powerful one, and it is one with which I wholeheartedly agree. Doctors who deliberately harm their patients – such as Simon Bramhall who branded his initials onto two anesthetized patients’ internal organs and Ian Paterson’s numerous bodily mutilations during his time as a public and private surgeon – do act unethically, do breach the Hippocratic Oath, and should face the consequences. I also have some limited sympathy for the idea that one’s intuitions act as a warning against unethical actions, what Leon Kass calls the Wisdom of Repugnance.

However, if the available evidence suggests that interventions that deliberately disable people alleviate the suffering of those with BID, are we not doing more harm by letting our aversion to the prospect guide our judgments? If we’re denying people the chance to access a potentially effective treatment simply because we find the idea of it distasteful, are we not causing them harm? There are multiple accounts of people with BID who, having no access to safe, medical amputations, have taken actions into their own hands. This includes people pouring bleach into their eyes to blind themselves, damaging a limb so severely by freezing it so that a surgeon has to amputate, or seeking out black-market amputations.

Now, this is not to say that amputation is undoubtedly the right treatment option for those with BID. While existing evidence suggests the intervention’s effectiveness, this evidence is limited, and more clinical research needs to be undertaken before any firm conclusions can be made. But, categorically ruling out disabling people for therapeutic purposes simply because the prospect seems harmful does a disservice to everyone involved.

We can’t know for sure that Mr. Tal had BID because, as stated, he was never diagnosed with the condition. Furthermore, even if we did know this, we can’t know if the availability of therapeutic, elective amputation would have prevented him from acquiring Mr. Yalu’s services, thereby potentially preventing his death. What we do know, however, is that people do suffer from BID, and this suffering can exist to a tremendous degree. Therefore, if we are dedicated to the idea of preventing suffering, and if doctors are committed to the idea of doing no harm, then we need to at least consider elective disability as a treatment option based on the merits of the procedure, and not on whether we find the idea repugnant or not.

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Examining Medical Intervention and Gender Confirmation

Photograph of an exam room in a doctor's office

There has never been a time when a society was made up of people that “naturally” fit into any sort of gender binary. People have lived lives across a spectrum of societally constructed gender roles since humans lived in cultures that developed gender roles in the first place. In contemporary contexts, we have the ability to support people living according to their identities when they differ from the gender assigned at birth in new ways thanks to developments in medicine. However, there is debate about how to understand this support in terms of the role of medical intervention.

If we define appropriate medical intervention in terms of “treatment”, we are understanding medicine as fixing something that is wrong, balancing potential risk of further harm against present suffering. The appropriate role of medicine is a contentious issue, especially in societies where the costs of interventions are prohibitive when deemed superfluous in any way. A central distinction in this discussion is between treatment and enhancement. Treatment covers medical interventions aimed at making patients healthy and well, and enhancement refers to medical intervention that does not address deviation from health but rather makes the patient better than well. Insurance companies can try to rely on this distinction to determine what interventions to cover the cost of and to what extent, for treatments may delineate interventions that are “medically necessary” while enhancements typically do not.  

Cosmetic surgeries are thus deemed enhancements because there is nothing medically wrong with the patient and the intervention is taking them, arguably, to a state of “better than well”. The distinction isn’t a perfect one, as there are medical interventions that are intuitively appropriate but that don’t presume illness or deviation from health – such as contraception and obstetrics.

For individuals seeking medical intervention to alter their gender presentation, this distinction is important. Typically, in order to consider intervention necessary, a suitable illness or deviation from health needs to be identified and an improvement that will result from the intervention. For instance, if you have a herniated disc and seek surgery to improve movement and alleviate pain, this fits the common conception of medically justified intervention. Elective surgeries, such as cosmetic rhinoplasty, are not seen as having a medical justification and are pursued based on preference or whim, say, and insurance companies do not cover such procedures on these grounds.

While the World Professional Association for Transgender Health (WPATH) only requires informed consent before medical support for gender affirmation procedures including hormone therapies and surgeries, the reality in the US is more restrictive. For instance, in April of 2018, the AMA Journal of Ethics argued against a prohibition in place excluding medically necessary gender affirming surgeries for veterans.

In order to qualify for surgery, Aetna requires letters from medical professionals, documentation of persistent gender dysphoria, and, depending on the treatment, the individual must have lived as their identified gender for a year with hormone therapy. In order to obtain letters from medical professionals, individuals must convince these professionals of the genuineness of their identity.[1] This has historically lead to “gate-keeping” and pressure on individuals seeking gender confirmation procedures to fit a particular narrative of gender identity and expression that medical professionals will grant warrants medical intervention: a narrative that moves medical intervention into a category with broken limbs and cancer rather than with elective interventions like liposuction and cosmetic adjustments.

Whether you are cisgender, non-binary, or trans*, consider your experience in elementary school: there is no way all of your traits, preferences, characteristics, behaviors, etc. fit neatly into a category that society has determined is gendered according to whatever gender you were assigned at birth. This is relevant, because for individuals who identify as transgender, or individuals who seek to identify as a gender that is different from that assigned at birth (be they genderqueer, non-binary, etc.), there is frequently a heavy narrative burden placed on them to justify this identity in order to receive treatment.

There is not a univocal experience for individuals who identify differently from the gender they were assigned at birth. This makes creating objective or universal standards for when gender confirmation procedures are “medically necessary” or “treatment v enhancement/elective” particularly difficult. As Andrea Long Chu articulates for The New York Times, the experience of dysphoria and the stakes of getting confirmation surgery are complicated in a way that perhaps bears more nuanced deliberation. In, “My New Vagina Won’t Make Me Happy…and it Shouldn’t Have To”, she puts pressure on the utility and justice of applying the standard cost/benefit analysis to medical intervention for gender dysphoria. As she points out, when physicians can rule out intervention considering their assessment of the risks of the procedure and the possibility that the individual will continue to experience pain and discomfort of dysphoria, it can become more difficult to justify medical intervention.  

The appropriate role of medical intervention is a politicized issue due both to the power of health insurance companies who have strong incentive to withhold coverage for intervention as well as the (too often radically) slow advance of our cultural understanding of the lived reality of members of society.

 

[[1]]  According to the AMSA, “There is much controversy surrounding transgender identity and the field of mental health. At the moment, transgender people often receive medical care under the diagnosis of ‘Gender Dysphoria’ found in the Diagnostic and Statistical Manual of Mental Disorders V, while in the past being diagnosed with ‘Gender Identity Disorder,’ now considered an outdated and incorrect term. Many people believe that transgender identity is NOT a mental disorder and should be a medical, rather than psychiatric, diagnosis. Some physicians use the diagnosis, ‘endocrine disorder otherwise unspecified,’ to avoid using a psychiatric diagnosis altogether.”

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The Ethics of Human Head Transplants Explored: Part One

Doctor inspecting a patient on an operating table

They are not just plot points in bad horror films anymore. Real surgeons and medical doctors are currently exploring the feasibility of human head transplants. In fact, surgeons Sergio Canavero and Xiaoping Ren claimed in November 2017 that such a transplant was “imminent.” The surgery did not happen, but these two surgeons still claim they intend to perform a human head transplant.

Theoretically, in a human head transplant procedure, a special blade made from diamonds would be used to sever the spinal cord of the donor and recipient as cleanly as possible. The detached human head would be kept alive for a period of time at a very cold temperature and hooked up to pumps for oxygen and blood flow. The spinal cords from the donor and recipient would then be fused together using polyethylene glycol. Vertebrae, blood vessels, muscles, and organs would then be stitched together as well. The person would then be placed into a month-long coma, while blood and nerve networks are re-built, in hopes that the body does not reject the new head (or vice versa).

This whole proposal may sound absurd to you; multiple surgeons and doctors have also questioned on scientific grounds Canavero’s and Ren’s proposals for the procedure. Dean Burnett, neurosurgeon and columnist for The Guardian, writes, “The human body is not modular. You can’t swap bits around like you would Lego blocks, take a brick from castle and put it onto a pirate ship and have it work fine.” Burnett argues that one’s brain develops along with one’s body; as such, a relatively unique interface develops between the two. Simply put, no one knows what would happen between a brain and a body that do not share this interface that was built up through years of growth. The results may be traumatic and tragic.

What’s more, the experimental testing and preparation for a human head/body transplant by Canavero and Ren is quite weak. Canavero and Ren have conducted experiments transplanting rat heads onto rat bodies. Disappointingly, one of these studies involved 60 rats, but only 14 survived for any period longer than 36 hours. They have also claimed to have successfully re-fused the severed spinal cords of a dog and a monkey, but scant evidence has been published to back up these claims. Burnett notes that, in the monkey head transplant, the monkey never regained consciousness after the procedure and only survived for twenty hours after the procedure.

Numerous ethical questions, obviously, emerge from the prospects of human head transplants. As Paul Root Wolpe on Vox suggests, would attempting the surgery on humans at this stage be tantamount to murder? The attempted surgery would likely result in death for the human patient (or at best life in a persistent vegetative state), should it fail. Given the paucity of experimental evidence backing up the safety and efficacy of the surgery, one has little rational justification for believing the surgery, at this stage of development, would even succeed. Defenders of the doctors might reply that the proposed head transplant is offered as a last chance procedure for someone suffering from a degenerative terminal neurological disorder. The intent of the surgery is not to end the life of the person, but rather to save it. As long as the doctors do not manipulate the patient to consent to this radical procedure when other safer options still exist, a human head transplant would be as ethical as any other Hail Mary last chance medical procedure.

Terminal patients may have other life-affirming and important choices to make that would be forsaken should they choose to gamble with such a radical procedure, such as saying goodbye to loved ones, making psychological peace with death and oneself, and having control over ending one’s life in a personally dignifying manner. The doctors advocating for trying this surgery on a degenerative terminal patient might not have the patient’s best interests at heart. In addition, it is not clear if the decision to volunteer for this procedure (at its current stage of development) could be considered rational. While respect for a patient’s decisions is generally important, some obviously harmful and irrational decisions do not accord such respect. A patient who believed that an obviously harmful action would cure him a disease, say ingesting large amounts of a strong poison, should probably be stopped from carrying out this action. Having your head cut off in hopes of a successful head transplant may be considered analogous.

Another important moral question concerns fairness and the allocation of organs. There is a severe shortage in viable transplantable organs in the United States. According to the United Network for Organ Sharing (UNOS), twenty people on average die each day while waiting for an organ transplant. What’s more, one organ donor can save up to eight lives. If a person were to donate their whole body for transplant, rather than their individual organs, that would theoretically deprive seven needy people of viable organs. Another allocation issue concerns cost: the head transplant procedure’s cost was estimated at $100 million USD. It may seem unfair to spend that much money on the vanishingly small likelihood of saving one person, considering what this amount could do for many more people.

Presume, now, that the above moral and scientific questions are overcome, and head transplants become a real (if not regular) part of the medical community’s transplant procedures. We are still left with an intriguing metaphysical question, one that would have serious ramifications for morally and legally fraught issues. What person would emerge from the procedure? The assumption is that the person to whom the head originally belonged is the “recipient” of the transplant, and the person from whom the body came “the donor.” But, is this correct? Is there any basis for conceiving of it the other way around? More intriguingly, it may be that the resulting person after the procedure is a third person metaphysically distinct from either the donor or the recipient. These issues will be discussed in a follow-up post.

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The Ethics of Short-Term Medical Missions

Photo of a doctor giving an eye exam to a child.

According to NPR, doctors and medical students in the United States are increasingly seeking out programs that enable them to spend a limited amount of time (from weeks to months) in developing countries providing free medical care. This sounds like an unmitigated good thing, given the amount of need for medical resources in many parts of the world and the opportunity to save and improve lives that this represents. However, as has been a common refrain in discussions concerning foreign aid generally, helping residents of poorer countries can have numerous unintended consequences, and short-term medical missions are not exempt from this insight. The NPR article provides several examples of these unintended negative consequences:

Continue reading “The Ethics of Short-Term Medical Missions”

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Who Should Decide Charlie Gard’s Fate?

This article has a set of discussion questions tailored for classroom use. Click here to download them. To see a full list of articles with discussion questions and other resources, visit our “Educational Resources” page.

Charlie Gard is an 11-month-old boy suffering from an inherited and terminal mitochondrial disease. He cannot move his arms and legs or breathe unaided. At the time of writing, Charlie was still in intensive care at a UK hospital. Charlie’s parents decided that Charlie should be brought to the United States to receive an experimental treatment that may help alleviate his condition. However, the doctors at the UK hospital decided that the experimental treatment would not likely improve Charlie’s quality of life. Since the parents and the doctors disagreed on what would be in Charlie’s best interests, the courts got involved.  The UK legal system has so far ruled that receiving the experimental treatment would not be in Charlie’s best interest, and Charlie should be removed from life-sustaining treatment to receive palliative care; the legal process is still in process concerning Charlie’s ultimate fate.

Continue reading “Who Should Decide Charlie Gard’s Fate?”

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The Wrong Reasons? Refusing Elective Abortion Coverage

This week, Community Health Options, Maine’s largest provider of health coverage on the Affordable Care Act’s online marketplace announced that they no longer will offer coverage for elective abortions. The CEO, Kevin Lewis, cited economic considerations, as the co-op has suffered losses that it hopes to make up by cutting some coverage. Continue reading “The Wrong Reasons? Refusing Elective Abortion Coverage”

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Learning How to Die: Lessons from Oliver Sacks

During my first year at DePauw, I was assigned a reading from a book called A Man Who Mistook his Wife for a Hat. My interest was so piqued by the assigned snippet that I couldn’t help but read the entire book. I was captivated by the accessible and insightful way the author, Oliver Sacks, relayed unique patient case studies that he had encountered in his career as a neurologist. Sadly, Oliver Sacks, who touched many people through both his medical practice and his writing and who made many lasting impacts in his field, passed away last Sunday, August 30, of terminal liver cancer. Continue reading “Learning How to Die: Lessons from Oliver Sacks”