narrative ethics, narrative structure

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S32 January-February 2014/ HASTINGS CENTER REPORT B y 1999, when Atul Gawande’s essay “Whose Body Is It, Anyway?” appeared in The New Yorker, 1 pa- tient autonomy had largely trumped physician paternalism in American medical practice. Gawande at- tributes this “dramatic shift in how decisions are made in medicine” 2 to the widespread influence of Jay Katz’s The Silent World of Doctor and Patient, published fif- teen years earlier, a judgment that Alexander Morgan Capron affirms in his foreword to a recent reprinting of the book. 3 Katz “made his case” for patient autonomy in medical decisions, Gawande notes, by “using the stories of actual patients.” 4 So, too, does Gawande use the sto- ries of actual patients, including his daughter, to attempt his counter case for physicians’ “talking patients through their decisions.” 5 Toward the end of his essay, Gawande acknowledges that “many ethicists find this line of reason- ing disturbing,” but he reassures his readers that “the real task isn’t to banish paternalism; the real task is to preserve kindness.” 6 As a surgeon whose essays often consider ethical issues in medicine, Gawande is practicing a familiar kind of nar- rative ethics by using the stories of particular patients to argue for an ethical position. In this essay he is also advo- cating another kind of narrative ethics by insisting that physicians should talk patients through their decisions. When he acknowledges that ethicists may find his reason- ing disturbing, he implies that they may find his ethical position for a negotiated paternalism disturbing. What troubles me, however, is not so much the ethi- cal position Gawande takes but the way he structures his narrative to support his position. How does he go about the kind of narrative ethics he is practicing? How do the stories he selects and the way he orders those stories rep- resent his moral reasoning? “Whose Body Is It, Anyway?” offers an important example for close scrutiny because, in my experience, it so effectively engages readers—especial- ly medical students—and persuades them to accept the ethical position it puts forward. Yet Gawande’s own reflec- tions about this issue do not stop with this essay. As he has gained clinical experience, he has continued his ethi- cal reflections, and the stories that he tells have changed significantly over the years. I will argue here that close reading and careful narrative scrutiny can alert those who read this essay apart from Gawande’s later work to some of the pitfalls in this kind of narrative ethics. To elucidate the structure of Gawande’s moral reasoning and illustrate my concerns, I will begin with the three stories he uses to frame his argument—the ones he places at the beginning, middle, and end of his carefully crafted essay. “Whose Body Is It, Anyway?” begins in medias res with the story of a man Gawande calls Joseph Lazaroff, who appeared at first to be already dead. As a first-year surgical resident, Gawande had been assigned the task of getting Lazaroff’s signature on the consent form for his surgery the next morning. Since he was diagnosed some months earlier with untreatable cancer in his liver, bowel, and spine, Lazaroff had “deteriorated rapidly,” losing in “a matter of months . . . more than fifty pounds. As the tumors in his abdomen grew, his belly, scrotum, and legs filled up with fluid.” 7 Things got worse: “Then he took several bad falls; his legs had become unaccountably weak. He also became incontinent. He went back to his oncolo- gist. A scan showed that a metastasis was compressing his thoracic spinal cord. The oncologist admitted him to the hospital and tried a round of radiation, but it had no ef- fect. Indeed, he became unable to move his right leg; his lower body was becoming paralyzed.” 8 Narrative Ethics, Narrative Structure BY ANNE HUDSON JONES Anne Hudson Jones, “Narrative Ethics, Narrative Structure,” Narrative Ethics: The Role of Stories in Bioethics, special report, Hastings Center Report 44, no. 1 (2014): S32-S35. DOI: 10.1002/hast.267

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Page 1: Narrative Ethics, Narrative Structure

S32 January-February 2014/ HASTINGS CENTER REPORT

By 1999, when Atul Gawande’s essay “Whose Body is it, Anyway?” appeared in The New Yorker,1 pa-tient autonomy had largely trumped physician

paternalism in American medical practice. Gawande at-tributes this “dramatic shift in how decisions are made in medicine”2 to the widespread influence of Jay Katz’s The Silent World of Doctor and Patient, published fif-teen years earlier, a judgment that Alexander Morgan Capron affirms in his foreword to a recent reprinting of the book.3 Katz “made his case” for patient autonomy in medical decisions, Gawande notes, by “using the stories of actual patients.”4 so, too, does Gawande use the sto-ries of actual patients, including his daughter, to attempt his counter case for physicians’ “talking patients through their decisions.”5 toward the end of his essay, Gawande acknowledges that “many ethicists find this line of reason-ing disturbing,” but he reassures his readers that “the real task isn’t to banish paternalism; the real task is to preserve kindness.”6

As a surgeon whose essays often consider ethical issues in medicine, Gawande is practicing a familiar kind of nar-rative ethics by using the stories of particular patients to argue for an ethical position. in this essay he is also advo-cating another kind of narrative ethics by insisting that physicians should talk patients through their decisions. When he acknowledges that ethicists may find his reason-ing disturbing, he implies that they may find his ethical position for a negotiated paternalism disturbing.

What troubles me, however, is not so much the ethi-cal position Gawande takes but the way he structures his narrative to support his position. How does he go about the kind of narrative ethics he is practicing? How do the

stories he selects and the way he orders those stories rep-resent his moral reasoning? “Whose Body is it, Anyway?” offers an important example for close scrutiny because, in my experience, it so effectively engages readers—especial-ly medical students—and persuades them to accept the ethical position it puts forward. Yet Gawande’s own reflec-tions about this issue do not stop with this essay. As he has gained clinical experience, he has continued his ethi-cal reflections, and the stories that he tells have changed significantly over the years. i will argue here that close reading and careful narrative scrutiny can alert those who read this essay apart from Gawande’s later work to some of the pitfalls in this kind of narrative ethics. to elucidate the structure of Gawande’s moral reasoning and illustrate my concerns, i will begin with the three stories he uses to frame his argument—the ones he places at the beginning, middle, and end of his carefully crafted essay.

“Whose Body is it, Anyway?” begins in medias res with the story of a man Gawande calls Joseph Lazaroff, who appeared at first to be already dead. As a first-year surgical resident, Gawande had been assigned the task of getting Lazaroff ’s signature on the consent form for his surgery the next morning. since he was diagnosed some months earlier with untreatable cancer in his liver, bowel, and spine, Lazaroff had “deteriorated rapidly,” losing in “a matter of months . . . more than fifty pounds. As the tumors in his abdomen grew, his belly, scrotum, and legs filled up with fluid.”7 things got worse: “then he took several bad falls; his legs had become unaccountably weak. He also became incontinent. He went back to his oncolo-gist. A scan showed that a metastasis was compressing his thoracic spinal cord. the oncologist admitted him to the hospital and tried a round of radiation, but it had no ef-fect. indeed, he became unable to move his right leg; his lower body was becoming paralyzed.”8

Narrative ethics, Narrative structureBy anne hudSon JoneS

Anne Hudson Jones, “Narrative ethics, Narrative structure,” Narrative Ethics: The Role of Stories in Bioethics, special report, Hastings Center Report 44, no. 1 (2014): s32-s35. DOi: 10.1002/hast.267

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S33SPECIAL REPORT: Narra t ive Eth ics : The Role o f S tor ies in B ioeth ics

A few years earlier, Lazaroff ’s wife died of emphysema af-ter an extended stay in an intensive care unit on a ventilator, and he made it clear to his son on several occasions that he did not want to die like that. His options at this point were palliative surgery or hospice care. At best, the surgery could only slow damage to his spinal cord and temporarily re-lieve his paralysis and incontinence. Risks of complications were extremely high. Yet despite the serious reservations of the oncologist, the neurosurgeon, Gawande himself, and Lazaroff ’s son—all of whom tried to ensure that he fully understood the risks of the procedure—Lazaroff adamantly insisted on the surgery. Gawande reports that the surgery was a “technical success”9 in removing the spinal metastasis but a disaster for Lazaroff, who suffered respiratory fail-ure, ended up on a ventilator in the iCU, and developed increasingly severe complications over the next two weeks, until his son finally asked that treatment be stopped.

the horrific outcome of this case made a deep impres-sion on Gawande, as it does on those who read his graphic and detailed account of it. He believes that Lazaroff “chose badly” both because “his choice ran against his deepest in-terests . . . as he conceived them”10 and because he did not understand, despite the doctors’ explanations, that surgery did not offer him a chance of life. Given Lazaroff ’s appar-ent failure to understand the limited benefits of the surgery and his choice to risk exactly what he had told his son he most wanted to avoid—a slow death on a machine in the iCU—one has to wonder why the doctors or the son did not question Lazaroff ’s decisional capacity. if he was un-able to understand correctly the risks and benefits of the procedure, should Lazaroff have been the one to make the decision? And why, in this very difficult circumstance, was a first-year resident who had never met the patient before sent to have the final conversation with Lazaroff about the surgery? instead of exploring these aspects of the case, Gawande concludes with the generalization that “a good physician cannot simply stand aside when patients make bad or self-defeating decisions—decisions that go against their deepest goals.”11

toward the middle of his essay, Gawande relates a per-sonal story about his infant daughter’s illness to explain how he came to understand that “patients frequently don’t want the freedom” that they have been given and “commonly prefer to have others make their medical decisions.”12

When his eleven-day-old daughter suddenly stopped breathing, she was rushed to the hospital and admitted to the iCU. Although the doctors thought she probably had a respiratory virus that her lungs were not yet able to handle (she was born five weeks prematurely), they would not know for sure until they had the results of the lab cultures, which would take a couple of days. Meanwhile, because of her repeated episodes of apnea, a decision had to be made about putting her on a ventilator. there were serious risks either way, which Gawande understood well and explains very clearly. As both a doctor and her father, he seemed the best person to make this decision about her care. But he did not want the responsibility and turned the decision over to the doctors. His reasons were personal: he “could not bear the possibility of making the wrong call” and “could not live with the guilt if something went wrong.”13

Later, in support of his personal decision, Gawande cites the work of Carl schneider, whose research has led him to conclude that physicians are better decision-makers in such situations because they have more experience with the medical condition, are emotionally detached and therefore more rational, and benefit from the disciplined scientific culture in which they have been trained.14 And the doctors’ decision not to put his daughter on a ventilator turned out to be right despite some scary reversals in her condition and a slow recovery time.

this story leaves me with three questions: How would Gawande tell the story had the doctors’ decision cost his daughter her life? Would he tell the story at all? And should he assume that because he does not want the responsibility for making the decision in his daughter’s case, other parents would not want to make the decision about their child’s care in a similar situation?

Gawande concludes his essay with another case from his internship year, that of a man in his thirties who was recov-ering in the hospital from surgery for an infected gallblad-der. three days after surgery, he went into respiratory crisis as a result of sepsis from a possible pneumonia. After do-ing what he could for the patient, Gawande paged a chief resident for help. she came quickly, assessed the situation, and told the man, whom Gawande calls Mr. Howe, that he needed to be on a ventilator for a couple of days while they treated his infection. Otherwise, he might die. Howe was adamant that he did not want to be put on a machine.

Narrative ethics requires careful selection of the stories to be told, close attention to their details, and meticulous structuring of an

argument in its entirety so that competing positions and stories are considered.

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S34 January-February 2014/ HASTINGS CENTER REPORT

When the resident asked what she thought her husband should do, Howe’s wife “burst into tears. ‘i don’t know, i don’t know,’ she cried. ‘Can’t you save him?’”15 she then left the room. After waiting until Howe tired out and lost con-sciousness, the resident intubated him, and they took him to the iCU, where he was hooked up to the machine that he had so adamantly refused. As the doctors expected, Howe improved quickly with antibiotics and ventilator support, and a day later they took him off the machine. the first words Howe said—the words with which Gawande closes this essay—were “thank you.”16 it is a powerful ending and one that hangs in the minds of medical students who read this essay. “Remember,” they remind me, “Mr. Howe said, ‘thank you.’”

Why quibble with what seems such a clear case of ap-propriate physician paternalism? there was no reason, as Gawande explains, to think that Howe would not want to live. But perhaps this is not a case of physician paternal-ism at all. Arguably, Howe might not have been able to think clearly because he was terrified and was not getting enough oxygen to his brain. if he lacked the capacity for decision-making, then his wife should have been given the opportunity to decide on his behalf. she was, and i believe she did. Her answer to the resident, which Gawande seems to interpret as an unwillingness to decide, seems clear and decisive enough: “Can’t you save him?”17 Of beneficence, there seems aplenty in this case. Of paternalism, i’m not so sure.

these three stories provide the primary scaffolding for Gawande’s narrative argument for physicians’ active in-tervention in talking with their patients to prevent their making what the doctors consider bad decisions. in his commentary around the stories, Gawande is always care-ful to qualify and balance his position: “[i]f having control over one’s life is to mean anything, people have to be per-mitted to make their own mistakes. But when the stakes are . . . high, and a bad choice may be irreversible, doctors are reluctant to sit back. this is when they tend to push.”18 And, he sums up, “Where many ethicists go wrong is in promoting patient autonomy as a kind of ultimate value in medicine rather than recognizing it as one value among others.”19 i agree with this conclusion, and i suspect that many ethicists do also. Principles and rules need to be interpreted thoughtfully and contextually, not rigidly fol-lowed or applied.

Yet there is a troubling dichotomy between Gawande’s commentary and the strong argument made by the cu-mulative effect of the exemplifying cases. the stage is set with the horrific outcome of Lazaroff ’s decision to have surgery. the message is that had the doctors stepped in to make the decision for him, or perhaps never presented him with the option of surgery in the first place, Lazaroff would have died peacefully at home. in the second case,

Gwande’s daughter’s good outcome is represented as a re-sult of his wisdom in turning the most important decision about her care over to her doctors, who were fortunately both lucky and good. Finally, that “thank you” at the end of Howe’s case seems to convey not only this particular patient’s gratitude to the physicians who put him on the ventilator against his will and thereby saved his life but also gratitude writ large, from all the patients who, Gawande believes, want their physicians to care for them with kind-ness as well as competence and to talk them through their medical decisions. But where is the counter story of a pa-tient who resisted doctors’ advice and came to no harm or of doctors who made the decision for a patient and caused the patient harm? Without them—that is, without the nar-rative counter arguments—the deck is stacked. No matter how moderate Gawande’s voice seems in his commentaries around the stories, readers leave the piece with the rhetori-cal power of that final patient’s “thank you” in their ears.

“Whose Body is it, Anyway?” is one of several New Yorker essays that were reprinted in Gawande’s first book, Complications: A Surgeon’s Notes on an Imperfect Science in 2002. those who read it there and continue reading the next (and final) essay of the book, “the Case of the Red Leg,” will immediately find one such counter story. tucked in almost as an aside from the dramatic main case of the essay, Gawande gives a one-paragraph account of an elderly widow who had an abdominal aortic aneurysm that seemed on the verge of rupturing. the physicians urged immedi-ate surgery as the only way to save her life despite the long recovery she would face. she steadfastly declined, saying she had lived a long life, was ready to die, and just wanted to go home. When Gawande tried to follow up with her son two weeks later to see how the family was doing, he was surprised that the woman herself answered the phone and said she was doing well. A year later, he learned that she was still alive. A small and modest story, it does provide one of the narrative counter arguments missing from “Whose Body is it, Anyway?” of a patient who did well even though she rejected her doctors’ advice.

A more important counter story comes several years lat-er in the essay “On Fighting,” which appears in Gawande’s second book, Better: A Surgeon’s Notes on Performance.20 the opening story of this essay is as harrowing as that of Lazaroff, but this time the tables are turned. A seventy-two-year-old patient, Mr. thomas, was dying of Cushing’s syndrome. surgery to remove his adrenal glands offered the only chance to save his life, but thomas was afraid of the surgery and hesitated. Following the advice of his own ear-lier work, Gawande pushed hard because the stakes were so high: thomas would die in a matter of months with-out surgery. He persuaded thomas to take the chance and have the surgery. As in Lazaroff ’s case, the operation was technically successful but disastrous for the patient. seven

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months later thomas had still not recovered sufficiently from a cascade of postsurgical complications to go home.

to his credit, Gawande tells this story of what he per-ceives to be his failure. even chastened by such an outcome, however, he continues to maintain in the essay that patients want doctors who will keep fighting to save lives when they are in extremis. He concludes, “in the face of uncertainty, wisdom is to err on the side of pushing, to not give up. But you have to be ready to recognize when pushing is only ego, only weakness. You have to be ready to recognize when the pushing can turn to harm.”21 sometimes, as his story has shown, the recognition comes too late.

Gawande’s experience as an oncology surgeon, his con-versations with hospice workers, and his current interest in checklists in medicine have all influenced his clinical and ethical thinking over the years. His ethical stance on patient autonomy, especially for patients near the end of their lives, now seems surprisingly close to that of Jay Katz, against whose position he structured his earlier narrative argument. His essays “On Fighting” and “Letting Go”22 and current projects using checklists to help patients make their own decisions about end-of-life care23 are probably too far removed, temporally and spatially, to offer effective narrative counterbalance to “Whose Body is it, Anyway?” unless they are purposefully juxtaposed. it is much more likely that those who read “Whose Body is it, Anyway?” apart from the context of Gawande’s continuing work will not encounter these later counter stories and counter ar-guments. indeed, the powerful rhetorical structure of that early essay may actually keep them from further ethical reflection by encouraging them to think that the issue of talking patients through their decisions was resolved with that closing “thank you” from Mr. Howe.

Because “Whose Life is it, Anyway?” is such a memo-rable essay, it serves well as a cautionary example for both

writers and readers. Using stories responsibly in narrative ethics requires careful selection of the stories to be told, close attention to their details, and meticulous structur-ing of an argument in its entirety so that competing posi-tions and stories are considered. similarly, reading stories thoughtfully requires careful attention to their selection, details, and narrative structure, as well as sympathetic resis-tance to too compelling a case.

1. A. Gawande, “Whose Life is it, Anyway?,” The New Yorker, October 6, 1999, reprinted in Complications: A Surgeon’s Notes on an Imperfect Science (New York: Henry Holt/Picador, 2002), 208-27.

2. ibid., 210.3. J. Katz, The Silent World of Doctor and Patient, with foreword by

A. M. Capron (1984; rpt. Baltimore, MD: Johns Hopkins University Press, 2009).

4. Gawande, “Whose Life is it, Anyway?,” 211.5. ibid., 217.6. ibid., 224.7. ibid., 209.8. ibid.9. ibid., 214.10. ibid, 215.11. ibid.12. ibid., 219, 220.13. ibid., 221. 14. C. e. schneider, The Practice of Autonomy (New York: Oxford

University Press, 1998).15. Gawande, “Whose Life is it, Anyway?,” 226.16. ibid., 227.17. ibid., 226.18. ibid., 218.19. ibid., 223-24.20. A. Gawande, “On Fighting,” in Better: A Surgeon’s Notes on

Performance (New York: Henry Holt/Picador, 2007), 154-65.21. ibid., 164.22. A. Gawande, “Letting Go,” The New Yorker, August 2, 2010.23. A. Gawande, interview with Charlie Rose, Charlie Rose, August

6, 2013, at http://www.dailymotion.com/video/x12si5p_charlie-rose-atul-gawande_news, accessed December 1, 2013.