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February 25, 2013 | Posted By Marleen Eijkholt, PhD

As a new clinical ethicist in training, I’m allowed to take some looks in the metaphorical kitchen of the hospital where things really happen: seeing research and treatment in practice. This is an amazing experience, as I always thought of myself in the court room (my primary degree is in law) and I had never pictured myself in an operating room. Thanks to all the compassionate and generous physicians in this hospital, who allow me to peek in their kitchen (as long as I don’t function as the ethics police), I get an understanding of the difference between the ivory tower of academic (bio) medical ethics and the real ethical issues of the work floor.  

Not too long ago I observed a WADA test in the epilepsy department. The WADA test is used to establish where language and memory are located in the brain; in which hemisphere do these capacities ‘reside’. (When we think simplistically and typically, a right-handed individual has memory and language on the left side of the brain, but there are a lot of exceptions and mixed brains). During the WADA test, doctors try to mimic a stroke of the brain; while the patient is awake, one hemisphere is temporarily sedated (around 2 minutes) and a series of tests are done to see how the patient memorizes and describes objects, based on the functioning of only 1 side of the brain. Subsequently, the other hemisphere is sedated and a similar test is performed. These tests are done, for example, to assess what would happen if a particular part of the brain is surgically removed; i.e. the area that contains the origin of the epileptic episodes.

I started to theorize and hypothesize about the following scenario, with me as the patient: What if the tests comes back and suggest that I have half my language and memory capacities reside in my left hemisphere but the other half of my capacities reside in my right hemisphere? Meaning that if my epilepsy episodes start in the left side of my temporal lobe, which would have to be surgically removed for my seizures to stop, I compromise half of my memory and language capacities in exchange for a lack of seizures. Is this something that I can 'reasonably' choose as a patient? Can my physician offer a surgical intervention on ‘reasonable’ grounds? Are these risks acceptable? 

My musings go further: the tests look at memory and speech. If the test reveals that I would have hardly any memory left, it would unlikely be offered. But most of the time the test will not come back with black and white results and the test will leave a lot of uncertainties; the test might show memory on both sides, and thus a potential loss of memory. I.e. it is uncertain how much memory and language will be left after the surgery, and it is uncertain how much functions will be absorbed by the side that would not be removed. I wonder: if I lose my memory, or half of it, who will I be? Will I be the same person if I have less memory, or less functional memory? Does my identity depend on my memory and speech, and who would I be with an altered memory and speech? If I relay on my identity in terms of memory and speech; how much of my identity am I willing to trade off against the surgery? Am I concerned with neuroessentialism, which holds that –I am my brain and nothing more -, or is there more to Me than my brain? Such identity struggles may be more commonly acknowledged for individuals with Parkinson’s or Alzheimer’s, whose identities constantly change, or may come up in discussions around Deep Brain Stimulation, where individuals risk identity alterations in exchange for tremor reductions . They do seem, however, also to play a part in the epilepsy context, where I am assessed as a surgical candidate based on my brain function. The surgeon decides either or not to offer me surgery if my memory test fails (I would lose a substantial amount of memory due to the surgery). Does the WADA test implicate that there is nothing more to me than my memory and language?

Of course a set of caveats make my musings are merely academic than practical; it is clinically naïve of me to suggest that there is a real choice here, because life with serious seizures that affect my memory are terrible. There is no ideal outcome and considering all, the picture is not black and white. There are many shades of grey. Further, no one knows what either future, with or without surgery would encompasses, so that an informed consent always remains questionable. What is a ‘reasonable’ decision is thus always uncertain. Finally, the functions of the brain, the lateralization of the two sides, and how memory works, are still being investigated and there is a lot of controversy and uncertainty, so that my questions may be deemed unhelpful. 

The reality of the WADA test is a seriously affected individual, who will need to make a difficult decision of going into surgery or not. Do my musings anything to help a patient? What is the use of me asking if there is more to a person than his/her memory or language?  The ethicist in me considers the theoretical musings here, purely in the form of questions, as basic research, which at some stage might inform translational research. My questions are existential. They may not serve at the clinical level now, but can perhaps help us to inform where we are going. At the same time, perhaps these theoretical questions can help to bring us back to reality, where one of my appreciated clinical colleagues describes the real dilemma in the under-appreciation of epilepsy as a condition:  “The moral dilemma is that patients are deferred from a curative decision for decades on account of access dilemmas, unenlightened MDs, or physicians that won’t refer so as not to lose clientele.”

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: Clinical Ethics, Neuroethics

Comments

sheila otto

sheila otto wrote on 02/25/13 4:12 PM

Excellent questions raised. Such a proposed intervention needs to be explored by the individual with exactly these kinds of prompts.
Athene Aberdeen

Athene Aberdeen wrote on 02/28/13 7:25 AM

Informed consent is just that. I agree or disasgree based on all the information that is given clearly and with no omissions. If that is done, ethicists will have their work cut in half.

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