Friday, November 16, 2007

A Doctor's Obligation

As we've ventured farther in our exploration of the brain and theories of the mind in "The Echo Maker," questions of ethics in writing and artistic license have troubled me. First there are the dilemmas that rise within the story itself - to what degree is Weber's work exploitative? Is he primarily a writer with neurology as a subject, or a neurologist who writes? and can his subject ever really consent to having their stories told publicly? - and then there are dilemmas concerning Powers. Is Weber really supposed to be Sacks? How can we know the difference? And if he is supposed to be Sacks, are we supposed to interpret a negative portrayal of Weber's work as criticism of Sacks?

As always there are the questions of identity, memory, and consciousness, but the above questions interested me more. I had never before considered Sacks' work to be exploitative. To put it this way - I had never thought to myself, "Is Sacks' work exploitative?" and said, "No," rather I had not even considered it. But naturally questions of exploitation SHOULD arise whenever the author of work based on other people's experiences is making so much money. Sacks has made thousands - millions? - off of his writing about patients. Doubtlessly his own talent and insight have been key to his success. But he would be nowhere without his material - his patients. I think about people like Jose, stuck in an institution for the rest of his life while Sacks makes money off of his story, and it does seem a little wrong. Sacks mentioned that Jose could have a career in art with the amount of talent he has. Well, why hasn't Sacks done more to build that career for him? It might require as little work as connecting Jose with the right publicist, like Stephen Wiltshire has, or sending his art to a few significant people who might be interested in selling or buying his drawings.

In our class, we value Oliver Sacks' stories for the questions they raise about the meaning of identity and consciousness. But it may be true that most of Sacks' readers are in it simply for the "freak show" element, especially considering that Sacks writes for a mainstream audience. Should we be concerned that people might pick up "The Man Who Mistook His Wife for a Hat" simply to read about all the fascinating freaks in it?

I was a little disturbed by Weber's abuse of doctor/patient confidentiality. Perhaps once you have published your patients' stories for the whole world to see, it seems like nothing to tell your wife and your publicist absolutely everything about a new patient - but it is a breach of that special agreement between doctor and patient. I'm not saying that Weber isn't allowed to tell other people - especially his wife - anything about the work he does. However, I would expect any doctor to use much more discretion when it comes to giving out identifying information about the patient and his symptoms. It's especially worrisome to me considering that Mark lives in an extremely small town in Nebraska, and that he has an extremely rare condition. Weber would not have to give away very much detail about him in order for a LOT of people to know exactly who he was talking about. How many people in Nebraska have accident-induced Capgras? Or even in the Midwest? I would guess only Mark does. Surely most of the people in his town know that he's been "off" since the accident, seeing how word gets around in Kearney. However, everyone does not know that Mark is prone to paranoid delusions about conspiracies and thinks that everyone in the town might be impostors - this is information only his close friends, Karin, and Weber know. Weber needs to keep his mouth shut, or else the whole town will think that Mark is "crazy" - and then it will be very hard for him to face his neighbors, much less return to his job or function normally.

I suppose I'm very concerned with this because my mother works in medicine, and she has always been much more discrete about her patients than Weber is. She can't tell me, my dad, or anyone ANYTHING that she experiences. I can't believe that Weber - or Oliver Sacks, really - has never faced a lawsuit from either his patients or the families of patients that recognized themselves in his writing. I do believe that he asked them for their consent, but like Weber's interviewer, I am skeptical as to whether all of his patients really understand what they are doing in consenting. I don't mean to undermine any of the patients' intelligence, but surely people like Greg - who was in the story "The Last Hippie" in "Anthropologist on Mars," which I don't believe was assigned but I read anyway by mistake - who was extremely mentally handicapped by a brain tumor cannot fully understand the implications of consenting to being part in a book by Oliver Sacks. In addition, some of Sacks' patients are children. Completely neurotypical children are not considered capable of consent to many things by law. The parents may consent on behalf of the child, but it is the child who will ultimately face the consequences of that decision later on.

It is not that I don't think that Sacks' work is important, that is encourages empathy towards victims of brain disorders and disease, or that it should be publicized. It's just that reading "The Echo Maker" has raised questions for me about ethics in Sacks' work that I hadn't considered before.

Furthermore being a neurologist and writing down cases you have encountered is one thing, but what if that writing becomes so popular that you find yourself engaged in the business of tracking down the most interesting cases in order to write about them? It troubles me because it seems that Weber is only concerned by the most "out there" cases. As a neurologist, isn't he obligated to take on more than just the patients that interest him? No other doctor would consider it ethical to turn away a patient simply on the basis of their condition being to "boring." "I'm sorry, Mr. Smith, but your heart disease is simply too common for me to treat you. Come back when you have something interesting and rare like those patients they have on 'House.'"

Or more simply put, what happens when a doctor's main goal is not to CURE his patients, but to write about them to make money? Surely this is what has happened with Mark. It is a doctor's job to treat his patient's illness to the best of his ability. But Weber didn't even stick around to see if the treatment he recommended would work. HIS job is simply to write about illness. There is nothing in it for him in seeing Mark cured. I used "House" an example above, but at least on that show the doctors are only satisfied when they are able to successfully treat whatever "out-there" disease is featured each week. Weber is satisfied simply by finding the "out-there" disease. Treating it holds no added benefit for him.

I have used Weber and Sacks interchangeably a bit, but the truth is that they are not interchangeable. They are certainly different. Even from the little I know about him, I would say that Sacks is much more of an oddball than Weber - and I use the word "oddball" in the most positive and affectionate way. Weber strikes me as any middle-aged career man. He might as well be a successful businessperson or a lawyer as a neurologist. I believe that Sacks' personality and idiosyncrasies lend him to the study of the mind and ITS idiosyncrasies much more than Weber's do.

And that being said, I really do like Sacks. I wouldn't tell him to stop writing on account of the ethical questions that hound his work. But I would tell him to consider them. That would probably be a moot point, as I'm sure has has considered them. Still, there is still much that we can consider about them, and "The Echo Maker" is surely a good avenue for that.


Ashley Leone said...

Of all of the readings (The chapters in Brain Fiction and the two parts of The Echo Maker), my mind continuously led me back to the same thing Madeline's been concentrating on. The character of Weber is so closely related to the Oliver Sacks we all know, that I can not help but feel like Richard Powers is personally attacking him. I do not really like Gerald Weber, he seems faulty and callous. But then I associate his character with Sacks and I wonder if Sacks is alike in these matters as well. When Weber stops remembering specific case studies or starts forgetting things altogether, I wonder if it's because of his lack of investment in his patients lives or a display of his own body's fragility, the eventual wear and tear.

I felt just as helpless as Karin when Weber decided to return home, leaving behind instructions for some standard procedure neurocognitive tests. I did not ever see such a problem with these case studies as I do now. They are studies, which millimeter by millimeter take us closer to understanding the brain and the self, but that does not mean any of the patients really get helped. They get watched, they are guided, and we attempt to understand them, but there is no treatment for more than half of these cases. It seemed that Weber just sort of stranded Mark and Karin (not that the man had no other obligations...), but it left me wholly sympathetic for the patients and their families. Imagine a famous neuropsychologist, doctor, what have you, coming to observe you in your time of need. Faith is partially restored, if not fully. You automatically think something can be done, treated, fixed, put back to normal. But people like Weber and Sacks are just human, not superheroes, which leave us to the despair of realizing once again how little we actually know about the brain.

The chapters in Brain Fiction were fascinating and reminded me of that video we watched in class in the beginning of the year (we should do that again, I really enjoyed that). Its amazing how interconnected the brain can be, but how independently left and right parts can function as well. Also, I love reading about the denial of illness confabulation cases because some patients have really good rationale behind their lies. They can be really convincing!

Lauren S said...

I too questioned how easily I accepted Sacks and his work while reading about Weber. It wasn't until I wrote my midterm paper for this class that I considered the possibility Sacks's stories are a bit like a freakshow, and when I thought of it at that time, it was only to immediately dismiss it. But when I first read THE MAN WHO MISTOOK HIS WIFE FOR A HAT nearly ten years ago, it was not for a class; it was to satisfy my curiosity about the freaky things our brains can do.

But maybe I'm confabulating, a thought that's been crossing my mind a lot these days (though, as an obsessive compulsive hypochondriac, I should be the opposite of a confabulator). I think, like the emotion missing for Mark when he looks at Karin, and the emotion missing from those with anosognosia, I would have felt some discomfort while reading Sacks if his intentions weren't good ones. I'd like to think that, anyway.

Stephanie said...

I know we can only speculate about Sacks, since we don't know him personally (and even if we did, then there are all of those questions these readings bring up, like: can you ever really know another person? what part of him would we know? etc etc). But I have such a different impression of Sacks than I do of Weber, and I think Richard Powers is taking a lot of license with this character. I mean, it's fiction - he can do that - but at the same time, I'm stuck on more of an ethical question with Powers than with Sacks. Powers lifts stories from many different sources, like Nabakov, without ever crediting where they are from. He writes about a fictitious character blatantly based on Sacks but then expects us to take it as fiction when he attacks his character.

One important point, in my mind, is that I never got the sense from Sacks that he was dismissive of neuroscience, of brain imaging and technology, of evolution, of anything like that. I think that he sees each of those things as components that add up to a story, although he considers the human element to be the most important. Science and humanity are not mutually exclusive, and I think Sacks proves that.

Also, I think it's misleading to question whether or not Sacks should be allowed to earn a living by writing books like these. Writing about neuroscience does not seem like a way to make easy money. Had he just wanted to exploit other people for profit, he could have worked on Wall Street and made probably triple what he makes now. I see a real ethical committment in his work, and I think he strives to educate by reminding people of the human element in illness or brain damage. I think that makes exploitation nearly impossible. He needs to give personal details for people to really understand. That's what I appreciate about his writing. And even if some people might read it for the "wrong" reasons, at least they're reading it, at least it's lodged somewhere in their mind, and maybe it will help them later on.

Anyway, I don't know Sacks, so these are only guesses based on the way he presents himself in print, but I feel a strange loyalty to him and can't help but resent Powers for his different interpretation.