patient education Archives - The Prindle Institute for Ethics

June 26, 2024June 26, 2024

Body Integrity Dysphoria and the Gustavson Case

Warning: This article contains graphic descriptions of bodily mutilation.

Early in 2022, I wrote a piece for The Prindle Post discussing the arrest of John Yalu for the suspected murder of Kalman Tal. The circumstances surrounding Tal’s death are unclear, but the initial facts appeared to indicate that he had paid Yalu to amputate his leg, despite Yalu having no medical training. Speculation was, and remains, that Tal suffered from Body Integrity Dysphoria (BID), a rare disorder which makes sufferers feel like a disabled person trapped within a non-disabled person’s body and for which there is no agreed-upon treatment.

In that article, I argue that if we are committed to the principle of do no harm, then all treatment avenues, regardless of how distasteful we may find them, must be considered. Failing to do so would abandon those with the disorder to their suffering and force them to consider dangerous, even life-threatening alternatives like black-market surgery or DIY operations.

Fast forward to May 2024 and London, where the criminal court sentenced Marius Gustavson, 46, to prison. Charged with, amongst other things, five counts of causing grievous bodily harm, Gustavson was given a life sentence, meaning he will serve no less than 22 years behind bars. The actions that warranted such a severe sentence have a Hannibal Lecter quality.

Gustavson, who called himself the “eunuch maker,” ran a highly profitable business providing body modifications to willing participants. This was despite neither Gustavson nor any of those assisting him having medical training. Additionally, these operations were carried out in non-surgical settings as seemingly innocuous as flats and hotel rooms. This, by itself, would be shocking, but it is not simply that operations were carried out by criminally unqualified individuals such as Gustavson. What elevates this into the realm of body horror is the operation’s nature, severity, and voyeurism.

As listed by the Criminal Prosecution Service, the 22 procedures in which Gustavson was involved included “the removal of the victims’ testicles, the amputation of penises, clamping of testicles with burdizzo clips (ordinarily used by vets in the castration of cattle), and the insertion of needles into genitalia.” It was not simply that these bodily parts were removed or mutilated, although that is itself horrifying, but that such tissue was then kept by Gustavson and his accomplices either as trophies, to be sold online, or in what might be the most disturbing fact of this case, to be cooked by Gustavson and ate.

To add another layer of horror to this case, Gustavson not only carried out these procedures but also ran a pay-per-view service where subscribers could watch him work. Altogether, between 2017 and 2021, Gustavson’s business earned him £223,229.43, $32,972.99 and €24,799 in profit.

What links this to the Yalu and Tal case is that Gustavson claims to have been suffering from BID. What’s more than this is that, according to his legal defense, Gustavson wanted to put “a smile on people’s faces by offering a service to those suffering, like him, from what was described as [BID].”

Now, whether Gustavson suffered from BID is a matter for debate. He had undergone surgical interventions himself to alter his physicality. This included, but is not limited to, having his penis removed in 2017 in a procedure carried out in a London flat and, in 2019, had to have his leg amputated after he deliberately submerged it in dry ice. Those who helped Gustavson in both instances also received jail sentences.

For my part, I doubt whether he had BID. His actions do not conform with the symptoms typically associated with the disorder. Most notably, those with BID rarely seek additional amputations or modifications once the part of their body which caused the initial distress has been removed. Gustavson, on the other hand, sought multiple modifications. Additionally, his desire appears to have begun to manifest after his divorce in 2016. Those with BID start experiencing symptoms in mid to late childhood. So, I suspect Gusatvson was using BID as a legal defense to lessen the likelihood or severity of his criminal sentencing. This did not work.

But, why does this matter from a philosophical and ethical standpoint?

First, it draws into question what the purpose of medicine is and what procedures fall under the umbrella of treatment. We typically accept that the amputation of a diseased limb to save someone’s life is acceptable. But is that the only circumstance? Might it be those other motivations, such as body modification or the improvement of the quality of life, could justify limb amputation?

Second, there are questions of justice and resource allocation. Who should pay for these operations and the ongoing support for the “willingly” disabled? Is it OK to amputate a limb if the individual pays out of pocket? What about access to benefits and social support? Should these be assigned to those who could have otherwise not needed them?

Third, we face questions about the limit of consent. Can you provide valid consent to such an operation, or are there certain things to which you cannot consent? Does this even matter in the case of such surgeries?

And fourth, can these interventions be legal? Is there any way that such an operation can be justified within the eyes of the law, or is the law’s very purpose to prevent such harmful acts, like these, from occurring?

But what I think both Gustavson and Yalu’s cases raise is the vulnerability of those suffering from BID. Those with the disorder have nowhere to turn to address the significant distress that they experience, which can last for decades, even entire lifetimes.

If the purpose of medical practice is to use knowledge of science and biology to improve the quality and length of life, then it seems clear that this will involve, in some exceptional circumstances, interventions which may be ethically troubling and socially distasteful. Indeed, many of the interventions and technologies which we might today consider ethically untroublesome or even mandated, like organ donation, were once viewed as affronts to the sanctity of the body and to nature itself.

This is to be expected as new knowledge and technologies extend the sphere of medical practice into realms which, for one reason or another, had previously remained outside its control.

Resisting calls to even investigate the effectiveness of amputation in BID cases cuts off potential treatment options for those with the disorder. This, in turn, means that those with BID feel betrayed, unseen, or misunderstood by the medical profession. So, they seek out alternative treatments, making them easily exploitable by the likes of Gustavson, who conducted these “surgeries” not to provide any therapeutic benefit but to satisfy his own desires and to make money.

It may be weird. It may be unbelievable. But until a better alternative comes along, amputations conducted under proper surgical conditions may be the best way to help those with BID. After all, who is likely to cause more harm, a trained surgical professional working with the proper tools in the right environment or someone like Gustavson, selling the spectacle of quasi-surgery and eating what he takes?

March 9, 2022December 14, 2022

Elective Disability and Body Integrity Dysphoria

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.

June 5, 2019July 23, 2024

The Inherent Conflict in Informed Consent

photograph of doctor's shingle with caduceus image

A recent study has drawn attention to the relatively poor medical reasoning capabilities of terminally-ill patients. These groups continue to show a marked lack of understanding of their condition and their future care. More concerning, perhaps, is the study’s finding that medical staff consistently failed to recognize these deficiencies in competence. Ultimately, the study supports mounting evidence that the bright line we draw to separate individual autonomy from institutional paternalism is too simplistic. Patient competence is overestimated and physicians’ impact is underappreciated. And this has important implications for how we see informed consent.

Informed consent is a process, made up of the many communications between a doctor and a patient (or clinical investigator and research participant). Details regarding the purpose, benefits, and risks of, as well as alternatives to, a given treatment are relayed so as to enable potential clients to deliberate and decide whether the medical intervention offered aligns with their interests. As a patient has all the freedom to decide what should or should not happen to her body prior to undergoing a clinical trial or medical procedure, the decision is to be made free from coercion; the doctor acts so as to facilitate patient decision-making. Achieving this requires adequate, accurate information be provided in terms the patient can easily understand.

Legally, informed consent represents a basic threshold of competency that a patient must be assisted in meeting in order to legally acquiesce to a medical procedure. It exists to safeguard bodily integrity — the right of self-determination over our bodies. It grants legal permission and protects healthcare providers from liability.

Morally, informed consent is a compromise between epistemic merits and welfare interests. Informed consent balances doctors’ medical expertise against patients’ unique knowledge of their preferences. While physicians might know best how to treat injury and combat afflictions, they are less equipped to make determinations about the kind of risks a patient is willing to take or the value she might place on different health outcomes. As patients must live with the consequences of whatever decision is made, we tend to privilege patient autonomy. Once properly informed, we believe that the patient is best-positioned to determine the most suitable course of treatment.

The trouble, as studies like this show, is that patients are not the autonomous healthcare consumers we assume them to be. They are often dependent on the doctor’s expertise and medical advice as many suffer from some combination of informational overload and emotional overwhelm. Patients’ weak grasp of their medical prognosis is offset only by the trust they have in their physician and a general deference to authority.

This means that informed consent is, in many cases, simply not possible. Patients who are very young, very ill, mentally impaired, or even merely confused are not capable of demonstrating sufficient competence or granting meaningful permission. Unfortunately, patient literacy is overestimated, communication barriers go undetected, and patient misunderstanding and noncompliance continues. Findings suggest that thorough assessment of patient competence is rare, and patients’ comprehension is questioned only when their choice deviates from the physician’s recommendations.

An increased focus on patient education may not be enough to combat these problems. Efforts to present information in a more accessible manner may bring some improvement, but there are many medical situations where the sheer complexity or volume of the information involved outstrips the decision-making capacity of everyday patients. Some types of medical information, like risk assessments, use probability estimates that would require formal training to fully appreciate and thus overburden patients’ capacity to adequately comprehend and reasonably deliberate. In such cases, no amount of dialogue would allow a patient to attain the understanding necessary for informed decision-making.

In the end, the possibility of an equitable doctor/patient consultation is rarely a reality. As Oonagh Corrigan explains,

There needs to be a realisation that the type of illness a patient is suffering from, her anxiety about the likely trajectory of her illness, her expectations about treatment and, in general, her implicit trust in the doctor and medical science mean that ‘informed choices’ based on an adequate understanding of the information and on careful consideration of the potential benefits and risks, are difficult to achieve in practice.

We cannot maintain our idealistic divide between autonomous decision‐making on the one hand, and autocratic paternalism on the other. From framing effects to geographic bias, a physician is bound to have a greater hand in decision-making than our common conception of the dynamic allows.

Some may say that the trouble is sufficiently curtailed by the Hippocratic Oath. A doctor’s duty to the health of a patient is thought to limit the possibility of abuse. But the physician’s obligation to do no harm offers little guidance on the ground. The duties of nonmaleficence and beneficence share no necessary tie to the particular social and cultural values of patients. They would, for example, recommend the administering of blood transfusions to patients whose deeply-held religious beliefs disallow it.

Finding a suitable middle ground between individual autonomy and institutional paternalism is particularly tricky. The territory of informed consent is already a political battleground. One need look no further than the dispute concerning mandatory pre-abortion counseling or talk therapy for transgender patients. While we may wish physicians to take a larger role in the care of those who genuinely lack capacity, this would inevitably lead to the silencing of legitimate interests. Any acceptable resolution of this tension is bound to be hard-won.