Who’s to Blame?
After nearly a year’s dithering hiatus, talk of MDs on the NY Times has driven me back here. Well, better late than never, as the kids say.
This is the provoking article: Are Patients in Part to Blame When Doctors Miss the Diagnosis?
Discussion here: Well: Who’s to Blame for a Missed Diagnosis?
The thing that bothers me here is actually a throwaway line:
It turned out that Marla was like my mother, a preventive health and alternative medicine enthusiast. …Two years earlier, Marla had noticed a pebble-sized lump in her left breast. Her primary care physician scheduled her for a mammogram, but Marla wanted first to try alternative remedies, so she skipped the appointment. She never went back to see her doctor because she felt that as soon as she began talking about other treatment options, he “shut down.”
The writer, who is of course a doctor, then goes on to deplore the various personal and systematic causes that contribute to missed diagnoses. The gist of the piece seems to be that doctors maybe sometimes make mistakes but aren’t responsible for patient stupidity or laxity. But it fails to consider legitimate reasons patients might not schedule follow-up care, many of which are later raised in the blog post comments — factors like cost, scheduling, job security, family responsibilities, fear, and (real or perceived) disrespect from the physician in question. While the others are more practical and logistical issues, the last is the most difficult to quantify and maintain.
Respect is important. Yeah, trite self-help book statement alert!, but a lot of people lose sight of this very simple fact (or maybe my exposure to the stockbroker/lawyer zone of the Loop has skewed my perception). And respect seems to be lacking in a lot of doctor-patient interactions. Marla’s original doctor refused to even consider alternate care options; he or she couldn’t even be bothered to hear about them from Marla or weigh her concerns about medical science. (Before you make too many assumptions, note that Marla clearly had SOME faith in medical treatment, or she wouldn’t have been visited a doctor at all. So don’t climb up on that “homeopathy is a total crock, medical science FTW” high horse just yet.) I think what Marla really needed, more than herbal remedies or surgery, was respect, and this point, which jumped out at me (and a lot of the commenters) was just kind of skimmed over by Dr. Chen. She doesn’t pause to consider the intangible way this patronizing dismissal influenced the patient’s decision about future care. Granted, Marla clearly shouldn’t have skipped out on that mammogram; but she might have been more receptive to the idea if the doc’s response ran more along the lines of “Well, why don’t we confirm what’s going on here, and then I’ll give you information on chemo/surgery/radiation and I’ll look into the alternative remedies you want to try” instead of “Just get the mammogram, you crazy dumb hippie.”
The best experience I ever had with a doctor was with a gynecologist I saw a few months ago; it was my first interaction with a doctor who listened to me. That’s not to say she didn’t correct me on some points or clarify some others, but she treated me like a whole person instead of a walking medical history to be drugged into medical homogeneity. She answered my questions and explained all the things my previous doctor couldn’t be bothered to. And when I told her the medication the last doctor prescribed caused a very unpleasant reaction, she suggested — gasp! — a natural remedy, which worked beautifully AND without any side effects.
I think a lot of doctors don’t realize how offensive it is to just dismiss a patient’s suggestions and concerns, carried along by that “doctor knows best” arrogance. As a patient I have the right to an explanation — why should I fill a scrip or submit to an invasive/painful/expensive test without a good reason? Yes, you have years of highly specialized medical training and experience. That’s why you’re wearing the lab coat and I’m huddled in this drafty gown. But this is my body. I’ve been living in it my whole life. We’re both fallible human beings here — it’s hard to argue that one of us is more fallible than the other. I’ll admit to the possibility of a mistake if you will.
Why, no, I don’t entirely trust the medical establishment. But that’s another post entirely. If I had it in me that might be a whole ‘nother blog.
Almost Achieving Inspiration
Okay, so I’m a bit late to the party, but really, what else is new, right? Being late to the party is the story of my life. I suffer from a sort of existential tardiness, always behind developmental schedule, wondering where everybody went. I imagine it’s how my brother felt when he had to repeat the 5th grade and all his friends went on to middle school, except it’s my life, there’s no syllabus, and all I can tell is that I’m somewhere behind where I’m supposed to be. Maybe that’s the real reason I can’t embrace open-world racing video games — they fail as escapism.
Anyway, to return to the particular lateness at hand: a few months ago, there was all a lot of web buzz about some “last lecture,” a funny and inspirational talk delivered by a comp sci professor at Carnegie Mellon. Really Achieving Your Childhood Dreams was delivered by Professor Randy Pausch on September 18, 2007. (Near as I can tell, the buzz came a few months later. I’m not that late. Usually. Sometimes.)
So I listened to the talk*, and I have to say — I’m not that impressed. Maybe I missed something, maybe I’ve already read too many Chicken Soup stories, maybe I’m just too depressed to appreciate the value of his advice. Professor Pausch has certainly led a remarkable and exciting life; he is clearly an intellectually formidable man in possession of creative powers, but the talk itself just wasn’t that impressive. It was kind of anticlimactic, really. It seemed too easy and pat for him to be giving that advice about brick walls existing to test how much you want something and gold being at the bottom of the crap barrel when he himself has led such a privileged life. He doesn’t seem to realize how much those privileges made possible, how many doors were opened to him before he had to learn how to reach for the knobs. Like an old acquaintance of mine, in youth he grew complacent and arrogant, imagining his good fortune to be his own doing instead of the happy roll of some third-party dice. Pausch admits to being introduced to this arrogance by a very wise man who would go on to become his mentor, but more than vestiges of it remain. This is one aspect of the talk that didn’t sit well with me.
The lecture was dissatisfying because the advice he gave, although peppered with well-timed and well-told funny stories, was common and easy and pat. It was the sort of pablum parents and teachers tell children to get them to do unpleasant things, the sort of speech you’d expect from a self-help writer shilling for his book. It sounded very much like an agglomeration of disparate self-improvement book chapters; some of it was common sense, but a lot of it was just common.
It was also discomfiting to see a man so close to death (he has been diagnosed with pancreatic cancer) seem so — flippant is the wrong word, maybe casual is better — casual about it. You didn’t get the sense that he was in denial; more that he was in denial about the mystery with which he was confronted, as though his coping strategy were to distill his impending demise into a series of funny stories and PowerPoint slides. Far be it from me to criticize someone’s coping strategy, especially in such a daunting situation, but he didn’t seem to be coping. He seemed to be diverting, working through a meta-coping strategy, coping with coping, admitting to certain death but somehow maintaining a gulf between the coping and the mystery. The lecture had the air of an elaborate, practiced avoidance; something about his body language and his face just didn’t seem quite honest. It was like he was folding in on himself, hiding by revealing; he exuded the same unsettling aura of fervent belief and unidentifiable dissembling as a motivational speakers whose success is still so new and fresh that he believes what he’s saying.
Pausch mentions that his mentor called him an excellent salesman. I think this is the most honest moment in the talk. He radiates this unsettling mix of earnest and disingenuous, and for that reason I can’t really take anything he says seriously — either I’ve heard it before, or it’s too pat. If your brain is that big, and you’re that confident and crafty, and you’ve had a stable family and a steady income and indulgent parents…. Well, you get the idea. There are so many reasons, so many variables beyond his control that governed what opportunities he had and what he was able to do. Of course, in the face of this final variable, the pancreatic cancer, the same one that took my grandfather (may he rest in peace) — what can he say? What is there to say? Man, say something. Don’t just stand there and talk about how we can achieve our childhood dreams as though talking your way onto NASA’s anti-gravity plane is something anybody can do if they just try hard enough. This is its own kind of evangelism, and there was something stripped and missing from the talk, and if anybody else can help me articulate it, or explain to me what and how I’m missing out, please, do.
*Those of you familiar with spiritual retreats — Christian ones, anyway — will remember “talks” as speeches about spiritual journeys and personal struggles. They generally revolve around an example of faith or courage, or the writer/speaker’s failure to set one, and the lessons, strength, and inspiration that can be drawn from that experience. Basically, “how to be in awe of/emulate X good person” or “how not to be a shmuck like me” and how God can help you with that. But this would better fit in another entry.
UPDATE: I realized what was so unsettling about his delivery — it’s not just that Pausch was casual or flippant, as I had previously attempted to describe him — it’s that he seemed so emotionally unavailable, as though turning this experience into a lesson were his means of coping with unfortunate facts he has accepted only cerebrally. I mean, what will his kids think, watching this video a few years from now, realizing that their dad couldn’t address them directly and so resorted to pretending to address a large crowd of mostly strangers instead? But it’s late; more on this later.
There Has Been Blood
There’s a lot of fur and blood (hah) flying over Aliza Shvarts’s senior “art” project. To sidestep the debate over what constitutes art and what does not, and the inevitable discussion over the arbitrary rules designating canon and “real” art, let us assume that the piece is, in fact, art. From there let us consider whether it is the profound artistic statement she and her defenders have made it out to be, a piece of “performance art” that forces us to re-evaluate our positions on reproductive freedom, their roots, and our definitions of the messy biological elements implicated therein.
It is of course possible to ascribe an intellectual discourse to Shvarts’ project, but as The Cat in the Hat Essay shows us, it’s possible to do that with almost any text. One thing I learned in college is that you can do or say anything in the undergraduate bubble and pronounce (or denounce) it as a “statement.” Even now, several years removed from undergrad, generating “statements” regarding people, clothing, art, and events remains one of my favorite games, primarily because a text’s susceptibility to interpretation/analysis/criticism does not automatically legitimate it, its stated purpose/message, or any subsequent analyses.
[Disclosure: I was taken in by the initial hoax, as Yale as resorted to calling the project, although Shvarts insists that everything she initially stated was true, and that it is entirely possible that her project harbors somewhere the shattered remains of a proto-embryonic cellular clump. I attribute my gullibility to the fact that I skimmed a blog post about the project at work; as any cubicle slave can tell you, you can’t process reading material properly when your ears are cocked for footsteps and your hand is twitchily poised to switch to a legitimate screen.]
My first problem with the project is its biological improbability. Miscarriages are highly unlikely in such a closely spaced sequence, because of the way egg fertilization/zygote implantation/hormonal agents affect a reproductive cycle. In addition, Shvarts used “herbal” abortifacients of questionable potency; if aborting were as easy as buying a few herbs from the local health-foods store, women wouldn’t have to cross picket lines at clinics or fight for prescriptions of RU-486. Shvarts also offers the suspect statement that she ingested the abortifacients just before she was scheduled to menstruate, so that it would be unclear whether the ensuing material contained a zygote/embryo/fetus. Any woman who pays any attention to her body, even if she is on birth control, will know when she is about to get her period. In much the same way that stomachs growl when they’re hungry and healed bones ache before storms, the female reproductive system sends out signals before it discards that cycle’s unused construction materials. Her statements are also suspect for the common-sense reason that if she really were concerned that she had been impregnated she would have turned to more, ahem, reliable means to ameliorate the situation, if for no other reason than to obtain reliably controversial material for the art project. Nothing says controversy like an aborted embryo or fetus in plexiglass. Cow carcasses, move over, ‘cuz there is a new kid (ha!) in town.
I was surprised to discover, in the midst of this firestorm, that some more extreme pro-lifers have trouble distinguishing between ordinary menstruation (in which the unfertilized egg is discarded with the now purposeless endometrial lining) and abortion. The argument goes that women taking birth control might be aborting zygotes that fail to implant, expelling them during menstruation and never the wiser of their loss (and, of course, the consequent loss to the seething, burgeoning ranks of humanity). When you add to that the medical fact that many zygotes do fail, for one reason or another, to implant in the uterine lining, a sexually active woman might be aborting, not menstruating, every month.
Shvarts claimed that her project was designed to expose how ludicrous this sentiment is, to provoke a re-evaluation of common definitions of women’s reproductive/destructive power, reproductive rights, and conceptualizations of the organs and biological material implicated therein. She also claimed that she wanted her project to inspire dialogue in and between the pro-life and pro-choice communities about these definitions.
But I don’t buy it. I’m not even sure she believes half of what she’s saying, but since we’re getting into hermeneutic territory here, we’ll just say that the artist’s intent isn’t necessarily relevant to our analysis/criticism/interpretation of the work in question. This project strikes me as a cheap ploy for attention, for her gratification or for career-planning reasons. It reeks of the thoughtless, self-absorbed academic pretension rife in many liberal elite institutions (my alma mater included), to which I was not immune, and from which I have had to wean myself when confronted with the pressures, demands, and grittiness of the real world. This is the exactly the sort of pretension that derides anyone who finds fault with it project as “close-minded,” “(hetero)normative,” “hegemonic,” or “oppressive,” as though agreement and support were prerequisites for admission to a circle sufficiently erudite to “appreciate” the work; the sort that flaunts Emperor’s New Clothes and refuses to acknowledge that even if a sentiment is absurd and empty-headed, an equally absurd and empty-headed assault is not legitimated solely by virtue of its opposition.
For these reasons, the project initially struck me as offensive, but on further reflection I realized that it was not so much offensive as vulgar and insensitive. Especially in its repeated use of the word “miscarriage” to characterize the video of the artist bleeding and the products of her attempts to induce abortion, Shvarts (intentionally or not) trivializes the loss of women who have miscarried and the personal, emotional, and legal obstacles faced by women who have aborted. And by thrusting her own reproductive functions into the spotlight, she invites (or dares) third parties to comment on her (supposedly ambiguous) experience, in the process subverting the argument that the decision to terminate a pregnancy is the private and exclusive domain of one person. Shvarts’ performance is an invitation to scrutiny that pro-life activists will expand to include all women seeking abortions, and so sabotages the very mission she claims to support.
Which brings me to my next problem with the piece and its stated purpose: Whatever she claims her intentions where, the project does NOT promote meaningful dialogue within, let alone between, the specified camps. Shvarts subscribes to what I’ll call “liberal academic fallacy,” that is, the assumption of many bright-eyed, idealistic, zealous undergraduates that anything that incites controversy promotes dialogue in support of a pet liberal cause (or against a comparable conservative one). But engaging in outrageous and inflammatory behavior doesn’t help anyone; it serves only to further alienate and isolate opposing camps from each other’s perspectives. Such performances also reinforce the popular perceptions that academics and artists are elitists who are more interested in speaking at people instead of with them.
What if a group decided to “make a statement” using racist or sexist language? Many people would waste no time (rightfully) denouncing the action as narrow-minded and destructive. While Shvarts’ project is not hate speech, it delusively suggests that it is possible to leverage inflammatory actions, exploit public credulity and paint detractors as stupid in order to promote healthy, honest, constructive dialogue. It may not be hate speech, but the results and intent are similar; both groups would say they are just trying to make a point, but really, their sole intent is to proclaim their moral and intellectual superiority and their sole achievement is to alienate potential allies. Shvarts’ project is insidious and infuriating because it reeks of self-aggrandizement, liberal smugness, and ignorance of the way her own outrageous actions will impact the lives of others. She makes us all look bad, and she’s not doing herself any favors, either.
