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July 31, 2013 | Posted By Marleen Eijkholt, PhD

You are mid 50ties, you have several university degrees from top universities, you have a PhD in Chemistry and are happily married. You seem to have a great life, but for one thing: while your legs are fully functioning, you do not want them. And it is not even that you just do not want them; you feel that they do not belong to you. They give you great suffering.

Earlier this week, the Huffington Post reports on Cloe Jennings who suffers from her healthy legs. Reportedly, she suffered from her legs since she was 4 years old and has held the desire to have them amputated or to be paralysed from that time. Jennings is raising money to travel to a surgeon who has offered to help her.

Jennings suffers from a condition called Body Integrity Identity Disorder (BIID). Blom defines this as: “there is a mismatch between the mental body image and the physical body. Subjects suffering from BIID have an intense desire to amputate a major limb or severe the spinal cord in order to become paralyzed.” The prevalence of BIID, reportedly, is rare, but it is recognized as a condition under the DSM, although its classification is ambiguous.

The ethical question is clear, and is reflected by the title: When can cutting off healthy limbs be ethically acceptable (if ever)? I see a tension between three prominent ethical principles: autonomy, beneficence and non-maleficence or do no harm. While I find an initial yuk-reaction perfectly understandable, I find that the answer to the question may not be as clear cut as the question when thinking about the contents of these three principles.

Beneficence and non-maleficence or do no harm, for example, can work on both sides of the discussion. On the one hand, it may not seem right for a doctor to remove healthy parts of a patient’s body; body parts that we overall perceive as quite instrumental and essential to a good-life and well being. Amputation of the healthy legs could easily be perceived as contrary to facilitating health. Moreover, amputations entail risks, which are easily avoided by not performing ‘unnecessary’ surgery. Yet, on the other hand, BIID individuals are noted to be suffering from their healthy limbs. Reports have suggested that they may be hindered in their professional and social life, and that quality of life can be significantly enhanced by surgery. So amputation may actually be the beneficent action, and refusing to remove the legs an obstacle to well-being and, arguably, a harm. Furthermore, surgery can also be perceived as preventing potential harm. Jennings, for example, is reported to embrace the risks of skiing, hoping for an accident that will paralyze her or require amputation. Obviously, this risky behaviour could entail many more potential harms, which could extend beyond paralysis of her legs, i.e. result in death or quadriplegia. Literature reports about individuals considering doing their own amputation, who burn themselves to force a doctor or even attempt suicide. Surgery could offer a solution to this behaviour, thus offering arguments for the amputation.  

Autonomy could equally work as a principle to justify or object against surgery. Surgery could enhance autonomy, as the individual is allowed to finally be who they feel they are supposed to be, and they may be relieved from suffering. But questions have been raised whether these requests for amputation can really be autonomous. Some have suggested that they may result from a brain disorder, so that requests should be dismissed. I have heard arguments that autonomy is irrelevant here, as the physician is not merely an engineer who needs to bow to the wishes of the patient. Without empirical and hard evidence that amputation wishes are really solved by surgery, and that these wishes come from an authentic self, amputation should not be considered. Yet another autonomy related objection to surgery comes from the idea that an individual cannot provide an informed consent to such procedure. 

So who would think it’s ethical to perform such a procedure? The literature reports about a surgeon in Scotland who has helped people like Jennings, and who I had the pleasure to meet a couple of years ago. For what it matters, I have no idea if he is the surgeon that offered to help Jennings, but that is beyond the question here. I found the surgeon very thoughtful; very much concerned about the well-being of patients. His presentation at the time revealed that he had a genuine impression that surgery helped, and meanwhile some empirical evidence demonstrated improved quality of life outcomes, though only based on a small patient population. Does this empirical evidence make the surgeon’s actions more ethical? And how much empirical evidence do we need before we deem such an action ethical? 

An ethical course of action stands for doing the right thing.  Yet what one deems as right, may vary per person. I think there the above paragraphs contain good arguments why amputation can be ethically justified. But I am still glad that in my role as a clinical ethicist, I do not have to perform the procedure. Some surgeons are pioneers and some people suffer from rare conditions that lead to unusual requests.  I am glad that I am not in their shoes. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

2 comments | Topics: Beneficence, Mental Health, Neuroethics, Nonmaleficence, Patient Autonomy, Patient Care

Comments

sheila otto

sheila otto wrote on 07/31/13 3:23 PM

Imagine that you are a PHD and happily married.....except that you suffer from having your legs. At the risk of sounding flip, My gut says "deal with it" and that means without drawing a surgeon into your problem. I can see no ethical justification for putting the pt at risk, let alone for subjecting a health care team to participation in an action that is likely not what they signed on for. And let's not even introduce financial costs or complications. Everyone suffers from something; life is not perfect.
Don Johnson

Don Johnson wrote on 08/24/13 8:21 AM

The unfortunate Ms. Jennings suffers from a psychiatric disorder. By definition, the problem here is a misperception of the body - not a medical disorder of the body. By what accepted psychiatric principle or approach do we ever consider altering reality to match the disordered perceptions of the patient?

Certainly, a paranoid patient may be relieved to some extent to "discover" that the CIA really IS tracking her movements. Is it acceptable as part of her treatment to hire actors to portray for the patient what she irrationally fears?

I would want to hear the opinion of the patient's psychiatrist/psychologist and get a second opinion from a consulting psychiatrist/psychologist about how this proposed procedure (amputation) fits in the plan of care for the patient's underlying dsorder.

In this case, it is noted that the patient engages in risky behavior in order to bring about the bodily changes she desires. The so-called "solution" to this problem is to bring about those changes surgically. Rather than medical care intended to maximize benefit and minimize risk, this seems to me to be medical care intended to actualize risk, and is thus ethically unaccetable.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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