S28 January-February 2014/ HASTINGS CENTER REPORT

When stories Go WrongBy hIlde lIndeMann

stories do many different kinds of moral work. Because they can depict time passing, feature cer-tain details while downplaying others, draw con-

nections among their internal elements, display causal relationships, and connect themselves to other stories, they are particularly well suited to the task of modeling a puzzling clinical situation. A story maps the situation’s contours, picking out the details that, together, constitute the moral reasons for doing what may or must be done.1 the story’s backward-looking elements explain how the situation has come to the point where it now needs moral attention. sideways-looking elements set the situation in its social and political location, connecting it to the other contemporaneous events and circumstances that help make it mean what it does. And forward-looking ele-ments represent possibilities for resolving the situation, laying out the courses of action by which the resolution could be achieved. When moral deliberators construct a story of this kind, they come to understand the situation in a certain way, and that, in turn, guides their sense of how they should act in or with respect to it.

But stories don’t just represent situations—they can also misrepresent them. they can distort the moral con-tours, provide faulty explanations for how the situation came about, feature the wrong collateral events and cir-cumstances while papering over the relevant ones, and depict ways of moving forward that would be morally di-sastrous. For that reason, if we are to use stories as guides to action, we have to be sure we get them right. in what follows i offer three clinical situations that are either about to be or have already been narratively misrepre-

sented. i’ll explain how the stories go wrong, point out the undesirable consequences of acting on them, and of-fer alternative ways of depicting the situations that could bring them to a morally successful resolution.

Harry’s LVAD

You said it would let me lead a more active life,” gasped Harry v, “but i’m so tired i can’t do anything

except sleep. i’m so weak i can’t even go to the bathroom by myself and i hurt all the time. And now you tell me i can’t get any better?”

Dr. s smiled and shook his head. “i’m terribly sorry, Harry. Your heart just can’t pump enough blood into your body, even with your LvAD’s help. i’d hoped that by now you’d show distinct signs of improvement, but here we are, and this is what we’ve got. i’m afraid there’s nothing more we can do.”

Harry was silent for a few moments, eyeing Dr. s thoughtfully. then he said, “You can turn off my LvAD.”

“No, Harry. if i did that, you’d be dead within a cou-ple of hours.”

“i know. But i’ve been thinking about it, and i just—i don’t want any more treatment. i want you to admit me to the hospital so you can turn the thing off. this is—” He blinked hard. “Well, i told my wife this is no life at all anymore.”

“No, you don’t understand,” Dr. s was eager to ex-plain. “Once you left the hospital, the LvAD stopped being a medical treatment and became, in effect, a part of you, much like a transplanted organ would be, or even a natural one. Just think about that for a minute. We wouldn’t remove your biological heart simply because you didn’t want to go on. And it would be the same thing if we disabled your LvAD.”2

Hilde Lindemann, “When stories Go Wrong,” Narrative Ethics: The Role of Stories in Bioethics, special report, Hastings Center Report 44, no. 1 (2014): s28-s31. DOi: 10.1002/hast.266

“

S29SPECIAL REPORT: Narra t ive Eth ics : The Role o f S tor ies in B ioeth ics

Left ventricle assist devices, once employed only as bridges to heart transplantation, are now also used as permanent therapies for cardiac patients like Harry, who are ineligible for transplant. After Harry’s was implanted, chronic wound infections, sepsis, and kidney failure kept him in the hospital for five months, mostly in the inten-sive care unit. He’s been at home now for another three months, and he’s had enough. He’s just so tired. too tired to go on, and yet the device forces him to. so he and his wife have thought it through carefully, and as they tell the story, the LvAD is like a respirator or a kidney dialysis ma-chine or any other life-sustaining treatment, and he has the right to have it withdrawn.

Dr. s understands the situation differently. in his ver-sion of the story, Harry has the right to the withdrawal of life-sustaining treatment, but the LvAD isn’t a treatment—it’s a vital organ. turning it off would be like taking out a transplanted heart Harry was tired of. No doctor would do that. it would be murder, and Dr. s is no murderer.

i see at least two narrative problems here. the first is a missing story that Harry and Dr. s should have created jointly, with help from Harry’s wife and other members of the health care team, before the LvAD was ever implanted. it would have had backward-looking elements that ex-plained the need for the device and how it would help but also, crucially, sideways-looking elements that displayed so-cially shared understandings of what kind of thing it is and, perhaps even more crucially, forward-looking elements de-picting permissible and impermissible courses of future ac-tion with regard to it. Had a story been constructed that was responsive to the moral reasons visible in the situation at that time, the present impasse might have been averted.

the second problem has to do with a sideways-looking element in Dr. s’s story. this element is a simile, an as-sertion that an LvAD is like a transplanted organ, and it connects his story laterally to socially shared stories about how transplant recipients must be treated. While similes are highly useful, especially for helping us to make sense of something new or unfamiliar, they must be deployed with caution, as by their very nature they compare things that are in some respects different, even if in other respects they are the same. A mechanical heart may perform some of the same functions as a biological one, but it doesn’t wear out in the same way or begin to shut down when the rest of the body starts to shut down, and because of that, it prolongs

the patient’s dying. in these respects, the LvAD is more like the implantable cardioverter-defibrillator, whose with-drawal has caused little ethical controversy.3 Dr. s’s feeling that in deactivating the LvAD he would be committing murder might be assuaged by reflecting on the stories sur-rounding the use of the iCD.

What is needed now is a story that allows Harry to see how hard it is for Dr. s to perform an act that will result in Harry’s death while simultaneously allowing Dr. s to see that Harry’s narrative construction of his predicament is a reasonable one. Once those elements are in place, it should be possible for Harry and Dr. s to co-construct the for-ward-looking elements that can resolve the moral conflict.

While my first story concerns a new use for a technol-ogy about which there aren’t yet settled moral understand-ings, the second one centers squarely on the patient’s own agency.

Ted’s Moral Injury

We was after the sniper!” ted R wails, holding his head between his hands and rocking from side to side.

the purplish scars on the inside of his forearms from his three suicide attempts are still recent and raw. “We had to flush him outta the house, and there was all this gunfire and noise and dust to where i couldn’t breathe, and every-body was screaming, and i ran in the door shooting, and the next thing i knew, they was all dead. the baby and all three women, lying there in their own blood.”

“And the sniper?” asks Dr. L quietly.“there wasn’t no sniper. Just dead women and blood.”Dr. L, a psychiatrist at the vA hospital in Nashville,

has been working with the young marine for two months, employing the exposure treatment that is standard for pa-tients with post-traumatic stress disorder. the idea is to foster sustained engagement in the raw experience of the traumatic event, focusing on the feelings connected with it. When the patient stays in the moment long enough, this focused emotional reliving allows his or her beliefs about it to become articulated and explicitly discussed. Facing these painful emotions and processing them, rather than avoid-ing or burying them—or subjecting them to the ultimate negation that ends all experience—causes their frequency and intensity to decrease naturally, via the mechanism psy-chiatrists call extinction.4

As co-constructors of stories, clinicians and patients and their families need to examine their stories critically, testing their

accuracy against their moral knowledge and the knowledge of others.

S30 January-February 2014/ HASTINGS CENTER REPORT

some psychiatrists have recently begun to suggest that colleagues such as Dr. L might be acting on the basis of the wrong story. they contend that the exposure treatment narrative, if it alone is used to guide the interaction with patients like ted, is likely to do more harm than good.5 the reason is that this sort of patient is traumatized, not by what others have done to him, but by what he has done to them. With ordinary cases of PtsD, what needs fixing are the awful feelings that accompanied the traumatizing event. in cases like ted’s, however, what needs fixing are not just the bad feelings, but the patient’s own violation of the moral order.

ted has murdered four unarmed noncombatants—one of them an infant—and the atrocity weighs so heavily on his conscience that he can barely function. Repeated raw exposure to his deed will not make the bad feelings go away unless he also takes responsibility for what he did. He can’t bring his victims back to life, but he must fully own up to the enormity of his actions, make what reparation he can, firmly resolve to set a better course for the future, come to some kind of self-forgiveness, and reconnect with family and friends. And he must do these things because they are the right thing to do, not just to make himself feel better.

if Dr. L treats ted as if he had a standard case of PtsD rather than a moral injury, she would be letting the wrong backward-looking story guide her actions. so far, however, the story on which she acts has not gone wrong. By con-trast, the story that constitutes her patient’s self-conception seems to have gone very badly wrong indeed. As ted sees it, he is such a moral monster that he can’t stand to be himself, so his only way out is suicide. One flaw in this narrative is that he isn’t a moral monster: his very suffering proves that he is not. But another flaw is that the story papers over the distinction between the deed and the doer, so that he becomes murder itself rather than a moral agent. His identity is properly constituted by many different stories representing all his important acts, experiences, character-istics, roles, relationships, and commitments, not just this one foul deed. He needs a much more accurate story that restores his agency, so that, with Dr. L’s help, he can under-take the long and difficult task of moral repair.

the moral work that lies ahead of him requires stories too. it isn’t simply a question of, for example, weighing reasonably endorsed principles of national defense against reasonably endorsed principles of nonmaleficence and con-cluding that, in the heat of the moment, he got the balance wrong. Or of acknowledging that these victims’ right to life should have acted as a side-constraint on his goal of killing the sniper. to understand his situation properly, he must come to see that he was responsible for something that he couldn’t altogether control. He was caught up in the fortunes of war, where civilians are often killed with-out anyone’s ever deliberately intending them to die. His

problem, though, is that while these particular civilians were killed accidentally, their death was brought about by his own hand. And now he suffers—to an agonizing de-gree—from what Bernard Williams calls agent-regret.6 to appreciate fully how one’s moral responsibilities can some-times outrun one’s control and why it is appropriate to feel remorse all the same is a task for stories, not arguments.

My third story deals with yet another sort of problem: when does a true story go wrong by being told?

Samantha’s Pregnancy Test

she’s been vomiting, she doesn’t eat, she’s stopped going to soccer practice, and she’s missed almost a week of

school. i’m so worried.” Ms. K lays her hand on the exam-ining table for emphasis. samantha edges away, her arms wrapped tightly around her prepubescent chest, a scrawny little figure in a johnny that’s much too large for her.

Dr. J examines the child and asks if she could have a word with samantha privately. Ms. K opens her mouth, shuts it again tightly, gives Dr. J an old-fashioned look, and leaves the room.

“i need to ask you some questions that maybe you wouldn’t want to answer in front of your mother,” Dr. J be-gins. “You’re fourteen now, so you’ve started your periods?”

“Yeah.”“How old were you when you had the first one?”“eleven.”“When was the last one?”“Last month. Four weeks ago.”“Have you started having sex?”A nod of the head.“With a boy?”Another nod.“When?”“Right before my period. i’d never done it before, and it

wasn’t like i thought it would be. it hurt, kind of.”“Did you want to do it?”“Yeah.”“Did he use a condom?”“Well, yeah—it wasn’t his first time.”“it’s good that he used a condom. But even so, you

might be pregnant. Would you be willing to take a—”“i’m not pregnant! i took a test yesterday, and it was

negative, so i know i’m not pregnant.”“Okay, but i’d like to do the test again, just to be sure.

Would you—”“No!” samantha starts to cry. “i already told you, the test

said i’m not! so just leave me alone.”“samantha,” Dr. J begs. “Just listen for a minute. if

you’re pregnant, you have options that we need to talk about. Can’t you just—”

S31SPECIAL REPORT: Narra t ive Eth ics : The Role o f S tor ies in B ioeth ics

But samantha shakes her head, gathers up her clothes, and runs out of the examining room.7

Of course samantha is pregnant. she knows it just as well as Dr. J does. And unless she terminates the pregnancy, it’s only a matter of time before her mother, her teachers, and all her friends know it too. so here we have a story—samantha’s—that’s gone wrong because it simply isn’t true. Yet by doubting the story and pressing samantha for evi-dence of its falsity, Dr. J may be doing something wrong herself.

Let’s look at this from samantha’s perspective. she doesn’t need another test to tell her she’s pregnant, since she already knows she is. so far, she’s the only one who knows for sure. But she hasn’t had time yet to get used to the idea. she confirmed her suspicion only yesterday, and this is very big, scary stuff. if she now takes the test Dr. J offers, then Dr. J will know for sure too. And she’ll want to start talk-ing about options and what to do and what not to do and should they tell samantha’s mom now or wait till later, and samantha will be forced into making all kinds of decisions she can’t cope with yet.

Dr. J is in something like the position of the boy scout who insists on helping the old lady across the street wheth-er she wants help or not. samantha knows perfectly well she will need help soon, and likely she isn’t averse to receiv-ing the needed help from Dr. J. But it must be forthcoming at the right time, and in the right way, when she is ready for it—not pressed on her so insistently that she’s forced into a lie.

the true story—consisting, so far, of the backward-look-ing one that yields the correct diagnosis—is unfinished. samantha and Dr. J are going to have to co-construct addi-tional sideways- and forward-looking elements that make it complete, but Dr. J’s attempt to start that process backfired because it was premature. Until samantha’s feelings have caught up with this huge new thing she knows, the story simply isn’t ready to be told.

And the Moral of the Story Is . . .

so here we have three vignettes in which stories either go, or threaten to go, badly astray. What can be learned

from them? the first lesson, perhaps, is that health care professionals must co-construct the stories they use to guide their interactions with patients. Patients and families must be involved in the storytelling so that, to the extent pos-sible, everyone sees the situation in the same way.

the second lesson, perhaps, is that clinicians and their co-constructors need to examine their stories critically, test-ing their accuracy against their own moral knowledge and the knowledge of others. Does the story capture all the moral reasons that are there? Does it get them in the right proportions, so that everything is in the right perspective?

And third, perhaps, is that clinicians need a good sense of when a story needs telling and when it isn’t yet ready to be told.

these three vignettes are only a tiny sampling of the way stories go wrong. stories are always doing it, either because they themselves misrepresent the shape of the situation or because they are used in the wrong way. Yet it seems we all need stories, for all kinds of moral purposes. As we can’t help telling them, hearing them, invoking them, correcting them, and otherwise employing them, it seems we’d all bet-ter cultivate whatever narrative competence we can.

Acknowledgment

i am once again indebted to James Lindemann Nelson for insightful comments on this essay.

1. J. Dancy, Moral Reasons (New York: Wiley-Blackwell, 1993).2. Retold, with many liberties taken, from J. R. simon and R. L.

Fischbach, “Doctor, Will You Please turn Off My LvAD?” Hastings Center Report 38, no. 1 (2008): 14-15.

3. R. A. Zellner, M. P. Aulisio, and W. R. Lewis, “Controversies in Arrhythmia and electrophysiology,” Circulation: Arrhythmia and Electrophysiology 2 (2009): 340-44.

4. My thanks to Keith Meador for suggesting this kind of story.5. B. t. Litz et al., “Moral injury and Moral Repair in War

veterans: A Preliminary Model and intervention strategy,” Clinical Psychology Review 29, no. 8 (2009): 695-706.

6. B. Williams, “Moral Luck,” Proceedings of the Aristotelian Society, supplementary volume 50 (1976): 115-35.

7. Retold, with slightly fewer liberties this time, from H. J. Bonifacio and A. Janvier, “Just Another test?” Hastings Center Report 40, no. 1 (2010): 13-14.