Chapter 5 Speaking For, Not With No matter how committed health professionals are to treating patients with empathy and to respecting them as people, as individuals who have identities and lives beyond their health conditions and who have their own complex and powerful stories, interactions with patients often do not go as planned. In In- ferno: A Doctor’s Ebola Story (2017), Dr. Steven Hatch recognizes that despite his best efforts to be a “sensitive and caring physician” in the eyes of Josephine, a young girl who died of Ebola four days after being diagnosed, he was “a monster – her own personal monster.” Hatch also believes that by separating mother and daughter, as he had no choice but to do to prevent Ebola from spreading further, he “facilitated a horror from which Josephine’s mother will never fully recover” (2017: 145). Hatch had done his best to ease Josephine’s transition from the “suspect ward” to the “confirmed [Ebola] ward,” having first “reviewed [to myself] all the lessons I have ever taught my students about how to make a connection with patients,” including trying to make them feel as comfortable as possible being conscious of nonverbal signals; speaking with them slowly, gently, and at eye level; and holding their hands (144). But Jose- phine would have none of this, instead recoiling into her mother’s arms, a per- fectly understandable reaction considering both her age and Hatch’s protec- tive gear, which made him look like “a monster, a faceless creature in yellow whose eyes were the only part visible, and barely so, hidden behind the mist of the goggles” (144). Hatch admits that his misplaced smugness regarding his ability to communicate with his patients and earn their trust continues to gnaw at him years later. Similarly, the sixth part of Serbian writer Zoran Živković’s (Зоран Живковић, 1948–) mosaic novel Sedam dodira glazbe (Seven Touches of Music, 2001) de- scribes a physician, Dr. Dean, doing his best to care for a hospitalized terminal patient, whom the narrative identifies only as “the professor” (profesor). Dean stops by his patient’s room every evening near midnight after his regular shift, and he does his best to appear relaxed and cheerful, to make his patient feel at ease, even though both he and the professor know the end is near. One stormy night, speaking to his patient, Dean tells the professor how fortunate he is to be in bed already, while Dean still needs to travel home in inclement weather and then attend to a list of obligations before he can go to bed himself. Dean im- mediately recognizes his mistake: “He had intended to cheer the professor up, to give him some hope, even if unfounded, but it seemed he had inadvertently © koninklijke brill nv, leiden, ���� | doi:10.1163/97890044�018�_010 Karen Laura Thornber - 9789004420182 Downloaded from Brill.com10/02/2021 12:25:03AM via free access <UN> 284 Chapter 5 gone too far” (Doduše, namjeravao je ohrabriti profesora, pružiti mu nadu, ma- kar i neosnovanu, ali izgleda da je nehotice pretjerao; 2002: 118). And it is only then that he looks at his patient directly. To be sure, the professor does not take offense. Prepared for death, which he believes will come that night, “He did not expect any consolation, nor did he need it” (119). But Živković’s Seven Touches of Music is another sober reminder of just how difficult it is, even for health professionals who strive to be considerate, to do right by their patients.1 Much global literature highlights even more than do Hatch’s Inferno and Živković’s Seven Touches the challenges of communication between patients and health professionals, particularly the tendency for health professionals to speak for their patients, rather than with their patients as people.2 Certainly Evan Handler’s Time on Fire: My Comedy of Terrors, Jean-Dominique Bauby’s The Diving Bell and the Butterfly, J.M. Coetzee’s Slow Man, and Nawāl al-Saʿdāwī’s Memoirs of a Woman Doctor – analyzed in the previous chapter – address this phenomenon. But health professionals who speak for patients rather than with patients as people are an even greater a concern in Coetzee’s Life and Times of Michael K (1983), British-Pakistani writer Mohammed Hanif’s (1964–) Our Lady of Alice Bhatti (2011), Japanese writer Ogawa Yōko’s (小川洋子, 1962–) Hakase no aishita sūshiki (博士の愛した数式, Equations the Professor Loved, 2003), and Pakistani American writer Bapsi Sidhwa’s (1938–) Ice-Candy-Man (Crack- ing India, 1988). These novels are some of the many creative works published 1 Seven Touches of Music contrasts Dean with the nurse Mrs. Roszel, who also cares for the professor “not only conscientiously but with affection” (2001: 119). Roszel is depicted as hav- ing a better sense of the professor’s needs than does the physician, but she too is said to avoid looking at him. 2 This tendency is exacerbated by the fact that the notes of health professionals, which until recently have generally not been accessible to patients, frequently become the patient’s story, even when the patient speaks eloquently. Writing on the occasion of the death of writer and neurologist Oliver Sacks, Christine Montross laments the falling out of favor of the case study, which has been replaced by data and the accompanying “precise biological and bio- chemical explanations of illness, evidence-based practices, and standardized approaches to patient care,” which do not always suffice, much less tell the most important parts of the story, at least from the patient’s perspective (2015: B10–12). Another factor contributing to the decline of the case study is concern over privacy. Montross ties these developments to the “voicelessness of so many who suffer from mental illness.” Exceptions include Ameri- can clinical psychologist and writer Kay Redfield Jamison’s (1946–) An Unquiet Mind (1995), American writer and professor of clinical psychology Andrew Solomon’s (1963–) The Noon- day Demon: An Atlas of Depression (2001), and American writer and law professor Elyn R. Saks’s (1955–) The Center Cannot Hold: My Journey through Madness (2007). In truth, Mon- tross cautions, physicians need to bear witness. Case histories do not necessarily trump a patient’s own narrative. Frequently, they give voice to those who cannot speak. Karen Laura Thornber - 9789004420182 Downloaded from Brill.com10/02/2021 12:25:03AM via free access <UN> Speaking For, Not With 285 worldwide that mock the assumptions health professionals and ultimately so- ciety writ large make about patients and health conditions more generally, that reveal how these assumptions lead to speaking for patients rather than with patients as people, and that expose the disturbing consequences of so doing, including impeding healing and wellbeing.3 At particular risk are patients who because of their age, health condition, education, socioeconomic status, or other factors are not able to converse readily with health professionals. Life and Times, Our Lady, Equations, and Ice- Candy-Man all feature characters who are less articulate than the protagonists of the narratives examined in the previous chapter. The novels discussed in this chapter bring to light a principal challenge of person-focused care: inter- acting with individuals who are (nearly) silent about their conditions and about their illness experiences more broadly. So many patients complain of being judged in the healthcare setting even before they have the opportunity to speak – falsely believed to be drug addicts, erroneously assumed to be gross- ly exaggerating their pain or even to be a hypochondriac, for example. But just as demoralizing and potentially harmful is the failure to be heard, to be as- signed a story rather than to create a story. Whereas Life and Times demonstrates how readily patients can be dehu- manized even when they are understood to have a story, namely a life outside the healthcare setting, Our Lady and Equations both caution that compassion- ate care is not necessarily person-focused and can readily overlook the needs of the patient. For its part, Ice-Candy-Man grapples with the medical and social emphasis on “cure” and normalization, an emphasis that defines certain (dif- ferent) individuals necessarily as disabled or diseased. Unlike the narratives 3 An important example from the United States is Margaret Edson’s (1961–) award-winning play Wit, which was first produced in 1995 and eventually adapted into an Emmy-award win- ning film; the play has been translated into dozens of languages and performed worldwide. Wit centers on Vivian Bearing, a celebrated professor of English and a John Donne (1572–1631) specialist, who has been diagnosed with terminal ovarian cancer. The disease quickly over- powers her preferred rational, logical, and academic approach toward life, with Vivian com- menting, “The young doctor, like the senior scholar, prefers research to humanity. At the same time the senior scholar, in her pathetic state as a simpering victim, wishes the young doctor would take more interest in personal contact…. Now I suppose we shall see … how the senior scholar ruthlessly denied her simpering students the touch of human kindness she now seeks” (1999: 58). Later, Vivian observes, “Now is not the time for verbal swordplay, for unlikely flights of imagination and wildly shifting perspectives, for metaphysical conceit, for wit. And nothing would be worse than a detailed scholarly analysis. Erudition. Interpreta- tion. Complication. (Slowly) Now is a time for simplicity. Now is a time for, dare I say it, kind- ness” (69). Vivian’s oncologist Harvey Kelekian is not unkind, but he speaks past his patient (see especially pp. 8–9 and 36–37); and Vivian’s primary nurse Susie Monahan must fight to have health professionals honor Vivian’s do-not-resuscitate order.