Johns Hopkins University Press
Abstract

This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the practice of medicine. Eighteen individuals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives.

Keywords

Illness narratives, bioethics, clinical consultation, narrative symposium

Ten years ago, I decided that I needed a built–in CD player for my old Toyota. A careful consumer, I consulted on–line sites and magazine reviews, and finally took myself to the local retailer, where I was confronted by a stunning array of options. I listened to a bunch, compared prices, talked with the salesperson, and eventually made my choice, paying for the device and the installation. I picked up my car two days later, eager to punch the buttons that would surround me with sparkling sound. A block later I pulled to the side, utterly dismayed. To my astonishment, my dashboard now sported a light show, with colored bars that shimmered and grew with the pitch and decibel of the music. I was appalled.

I did a U–turn back to the dealer, loudly complaining that I hated this device and would never have knowingly bought such a thing. Why hadn’t he told me, I demanded. He was taken aback. I had never asked, he said. Of course, the monster device had been installed and could not be removed without a great deal of expense. I finally put masking tape over the disco show and learned to live with it.

Three years later, a thief broke into the car and stole the CD player. Hallelujah! A second chance! I took myself to a different retailer and chose another player, obsessively asking about light shows and other forms of visual ambush. Two days later I drove smugly home, my dashboard no longer channeling Saturday Night Fever. All was well. Until, that is, I turned off the car and prepared to exit. Beep! Beep! The new device was emitting an irritating, high–pitched electronic tone, that ceased only when I slammed the door shut. U–turn. Back to the dealer. [End Page 8] What the hell was this, I demanded (my distaste for light shows exceeded only by my hatred of electronic beeps). Oh, the clerk reassured me, that’s your anti–theft device. It will go off every time you exit the car, unless you remove part of the CD player and take it with you. No, it is not possible to disable it. Why didn’t I warn you? Well, you didn’t ask.

I am now the happy owner of a Mini–Cooper, with a built–in CD player that blessedly does its job and nothing else. But I often think of this experience when I think about informed consent. And I especially think of it when recalling my own fairly recent experience with consent for elective surgery.

A few years ago, I made up my mind to have my breasts reduced, something I had been thinking about for decades. Although my breasts were disproportionate enough that insurance covered the procedure, in fact I was never physically uncomfortable; I disliked the way I looked and was fed up with the difficulty of finding clothes that fit. I scheduled an appointment with the head of the relevant department at my local hospital. I had a long talk with this lovely man, took an information sheet, went home and thought about it some more. A friend had undergone the procedure; she told me it hurt like hell for the first 24 hours, which turned out to be about right. I also worried about the anesthesia; this would be my first experience of being “out.” I pondered for a few weeks and finally made an appointment for surgery a few months hence. Before the actual surgery, I had a number of minor appointments to check my general health, take pictures for the insurance company, and one final chat to make sure I understood what the procedure entailed and my likely breast size afterward. In fact, when the day finally came, the last thing I remember before I “went under” was the surgeon checking with me one last time about my future cup size.

So . . . 24 hours of pain, two days of West Wing reruns, weeks of careful showers, a return visit to make sure everything was healing nicely, and eventually I could give up the soft post–surgery bras for a trip to the mall for the real thing. For the first time since early adolescence, I could buy lacy bras at reasonable prices in the same stores as my friends. Well, not exactly.

Turns out, after surgery my nipples are permanently erect, and show through most bras and even opaque turtlenecks. Every time I get dressed I have to check the result and weigh the advisability of inserting nipple shields. Otherwise I will be walking around campus looking like a coed in a wet t–shirt contest. I have traded one self–conscious hassle for another. Would I have done it anyway? Probably, but that’s not the point. The point is that I wasn’t warned about a result that, now that I’ve traded stories with lots of women, turns out to be quite common, common enough that I should have been told.

Two years later, I had another surprise. A “lump” I discovered on my breast was diagnosed as a cyst and I was told that cysts on the scar lines were fairly common after surgery. Having that information probably would not have deterred me from the operation, but it certainly would have saved me 48 very anxious hours.

Bioethics literature is full of writing about the difficulties patients encounter when trying to assimilate complex medical information while they are ill, tired, and scared. Often, the patient’s psychological challenges become the platform for a subtle attack on the value of autonomy or a belittling of the value of informed consent. My story is interesting precisely because those barriers were largely absent. I was not anxious or ill, was encouraged to ask questions, and had all the time in the world. Nor can I accuse the physician of paternalism; I think he was truly neutral about whether or not I should have the surgery. Nonetheless I was blindsided by things that I could not have asked about because they would never have occurred to me.

Heather Gert (2002) has pointed out that placing information in the context of informed consent has the unfortunate effect of encouraging physicians and ethicists alike to talk “as if physicians are required to provide all and only information necessary for securing informed consent” (p. 23). Informed consent focuses on information a reasonable person needs to make a decision, but there is much more information that most prospective patients need and want. As Gert explains, there are few facts that would deter most people from [End Page 9] deciding to have a broken leg set, but there is much more that the patient needs and wants to know. How long will she be in a cast? When can she drive? Can she get the cast wet?

Part of the problem, as I have written elsewhere (2010) is that the concept of informed consent arose out of litigation. Since the patient can only win a suit if the missing information would have caused her to make a different decision, it is that information that tends to take precedence. In our society, law and ethics tend to merge in people’s minds, and legal standards are often taken to be ethical standards as well. But law is just one important (and minimalist) expression of what constitutes good physician–patient communication. “If we say, time and again, that physicians must provide information for the purpose of gaining informed consent, and don’t say anything more, it may be too easy to slip into thinking that a certain bit of information can be passed over because—as anyone really would agree—there is no chance that information about this fact will alter the patient’s decision” (Gert, p. 24). A better standard is the one suggested by Gert: reasonable patients want whatever information will keep them from being surprised. And if, in the end, the patient is surprised, that should only occur if the physician is surprised as well. “In other words, the physician should ensure that the patient undergoes no unsurprising surprises” (Gert, p. 24).

Would my physician be surprised to hear of my experiences with the sequelae of breast–reduction surgery? I suspect not, but I don’t really know. The carefully orchestrated set of encounters between me and the medical staff did not include an opportunity for the patient to report back. Perhaps I’ll send them this essay.

References

Davis, D.S. (2010). The ambiguous effects of tort law on bioethics: The case of coctor–patient communication. Journal of Clinical Ethics, 21, 264–271.
Gert, Heather J. (2002) Avoiding surprises: A model for informing patients. Hastings Center Report, 32, 23–32.

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