patient education Archives - Prindle Institute

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.

A recent study has drawn attention to the relatively poor medical reasoning capabilities of terminally-ill patients. When confronted with complicating factors, a group of terminal cancer patients demonstrated decreased appreciation and understanding of their prognosis in comparison to their healthy adult counterparts. More concerning, perhaps, is the study’s finding that attending physicians were not consistent in recognizing 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. These findings have important implications for our conceptualization of 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 in those cases where a patient’s decision 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 this liberty 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.