Introduction Person-Focused Care – Advocacy, Respect, Compassion, Empathy, Healing
Superstar Hollywood actress and director Angelina Jolie (1975–) made head- lines in May 2013 by announcing that after a positive test for a brca1 gene mutation and learning that she had a significant chance of contracting breast cancer, she had chosen to have a preventive double mastectomy and breast reconstruction. Jolie wrote confidently in the opinion pages of the New York Times that “there have been many advances in [breast reconstruction] in the last few years, and the results can be beautiful” (2013). Jolie was correct, and knowing that breast reconstruction, whether prosthetic or autologous, is a vi- able option can make some women more comfortable with undergoing cancer screening. For a woman as dependent on her appearance for professional suc- cess as Jolie to declare, “I feel empowered that I made a strong choice that in no way diminishes my femininity” can give women the courage to be tested and also, if needed, to take preventive measures (ibid.).1 Insurance companies in the United States long argued that breast recon- struction following mastectomy was a “cosmetic procedure” and “medically unnecessary,” thus not eligible for coverage. This changed with the Women’s Health and Cancer Rights Act (whcra) of 1998, and health plans that cover
1 The British Medical Journal reported a spike in brca testing after Jolie published her editorial but no accompanying spike in mastectomies, suggesting that women who had themselves tested after reading Jolie’s editorial had in fact “a lower probability of having the brca muta- tion than women tested before the editorial” (Desai et al. 2016). In The Body Papers: A Memoir (2019), Filipino-American writer Grace Talusan describes the difficult decision to have pre- ventive surgery after testing positive for the brca mutation. She also reveals the condescen- sion with which this decision is received in the Philippines, where a physician says to her, “What does your husband think of this mutilation? You should have waited … God has a plan.” Her response: “I did the right thing…. And as for my husband, he prefers me alive” (2019: 244). For a compelling family narrative on the changing options for women experiencing breast cancer over the twentieth century, see Janet Reibstein’s (1946–) Staying Alive: A Family Mem- oir (2002). Reibstein’s mother and aunts all died of breast cancer, while she had what she thought was a preventive mastectomy, but during the operation surgeons determined that she too had cancer. Reibstein speaks of the isolation and stigmas that her family members faced. She describes her Aunt Fannie, diagnosed in 1947, as submitting “to doctors, to the si- lence, to impotence as a woman and a patient because she had no choice” (2002: 35). See also Wegenstein for a list of writings and films on breast cancer (2016: 384).
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2 As key sponsor of the bill, Senator Alfonse D’Amato (1937–) declared on the Senate floor on October 21, 1998: “Imagine the shock and horror of being told by your hmo that surgery fol- lowing the removal of your breast is cosmetic. That is outrageous.” Some women would of course agree with D’Amato, but not all, given that not all women believe breasts are an es- sential part of their bodies. D’Amato also reported that the medical director of an hmo with whom he had spoken had justified denying coverage because “replacement of a breast is not medically necessary … This is not a bodily function and therefore can not and should not be replaced” (Congressional Record 1998). 3 Many women in the United States still do not have health insurance, and the number is likely to increase. In addition, whcra does not apply to Medicare and Medicaid, although Medi- care covers breast reconstruction if a woman has had a mastectomy because of breast cancer, and Medicaid benefits vary by state. Moreover, insurance companies are not required to cover the procedure in full; they are required only to cover the same percent of it as they do other surgeries, including mastectomy (Cancer.org 2019). 4 As one woman describes the procedure, “You’re thrown into a world of wounds and drains and aspirating syringes that look like something you’d use to impregnate livestock. Tissue dies, incisions refuse to heal and your body can be racked by infections that can last for weeks, even months” (Mapes 2013). Many women report not being informed of possible complications, including loss of sen- sation. They reveal that their doctors promise them that their breasts will look better than ever but are vague about the potential side effects of the surgery. Most strikingly, unbe- knownst to many women with breast cancer, when surgeons reassure women that the new breast will “feel” like a natural breast, what they mean is that it will feel like a natural breast to the woman’s partner, not to the woman herself. As Memorial Sloan Kettering’s Dr. Andrea L. Pusic noted, “What it feels like to the woman has been a kind of blind spot in breast sur- gery. That’s the next frontier” (Rabin 2017a). One woman responding online to Rabin’s New
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Nevertheless, these women often are under considerable pressure to have reconstructive surgery: pressure from loved ones, society, and health profes- sionals who assume having breasts is vital to a woman’s feeling “whole again” and who celebrate that women can “even go up a cup size” (Rabin 2016). Nearly forty years ago, African American lesbian feminist writer Audre Geraldine Lorde articulated in The Cancer Journals (1980) her anger at society’s failure to recognize women’s importance beyond their appearance:
To imply to a woman that yes, she can be the “same” as before surgery, with the skillful application of a little puff of lambswool, and/or silicone gel, is to place an emphasis upon prosthesis which encourages her not to deal with herself as physical and emotionally real…. This emphasis upon the cosmetic after surgery re-enforces this society’s stereotype of women, that we are only what we look or appear, so this is the only aspect we need to address…. With quick cosmetic reassurance, we are told that our feelings are not important, our appearance is all, the sum total of self. (1980: 57–58)
Lorde likewise decried how society denied women autonomy over their own bodies. Returning to her breast surgeon ten days after her mastectomy, Lorde was told by a disapproving nurse that the office would prefer if she wore a pros- thesis, not only because it would make her feel better but also that her failure to do so was “bad for the morale of the office.” This request outraged Lorde, who remarked, “this would be only the first such assault on my right to define and to claim my own body” (60). She also asked why it was that Israeli military leader and politician Moishe Dayan (1915–1981) could address parliament and appear on television with “an eyepatch over his empty eyesocket [and] nobody tells him to go get a glass eye, or that he is bad for the morale of the office,” but she is stigmatized for failing to hide her surgery (60).
York Times article “After Mastectomies, an Unexpected Blow: Numb New Breasts” (2017) speaks of having a similar experience with her hysterectomy and demands that physicians “LISTEN to patients. CARE for us.” Interestingly, other online letters criticize women for not doing adequate research before the procedure, one remarking “I do have to wonder how a person undergoes this type of surgery without doing any research.” Many women do their research, but for countless others the trauma of the breast cancer diagnosis is so overwhelm- ing that it stands in the way of proceeding deliberately. Ultimately, the responsibility for in- forming a person of the possible risks lies with the physician, and many physicians do take this responsibility seriously. For more on breast implant-associated anaplastic large-cell lym- phoma, about which very few physicians have heard until recently, see Grady (2017).
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Today, although the website of the American Society of Plastic Surgeons no longer declares “Breast Reconstruction: Helping You Become Whole Again,” some physicians use this as an advertising slogan.5 Other physicians go further, including Dr. David H. Song, former chief of plastic surgery at the University of Chicago Medicine and former president of the American Society of Plastic Sur- geons, who has promoted the surgery as increasing a woman’s attractiveness: “The aesthetic result can be better than the native breast…. Patients can come out the other end looking more youthful, with a better aesthetic in her breast than before” (Rabin 2016). Enthusiasm for the procedure and the belief that without it a woman will be incomplete or not appear as “youthful” as she could leads some health professionals to be less than forthcoming about the risks. One cancer survivor four years into what she sarcastically has dubbed her “boob job” remarks, “There seems to be this almost paternalistic undercurrent to it all…. That we as women can’t handle the truth about what is really going to happen to our bodies and our breasts” (Mapes 2013). Of course, “aesthetics” are subjective, and for many women having their breasts look “more youthful” or going up or down a cup size is not a priority or even desired. As many health advocates have emphasized, rather than automatically shuttling women from cancer surgeon to plastic surgeon, assuming breast re- construction to be the logical next step, physicians and other health profes- sionals need to discuss the various options and risks with their patients, listen- ing attentively to their preferences and concerns and working with them to determine the optimum course of treatment for them personally.6 Breast re- construction surgery after mastectomy must be understood as a choice, at least for women medically eligible for it whose insurance companies cover it or who can otherwise afford it. Not all women need breasts to feel whole, and in fact, studies suggest that women who do not undergo breast reconstruction after mastectomy tend to enjoy an equal or even slightly better quality of life than those who have reconstructive surgery (Clara Lee et al. 2009).7 Every woman is
5 See, for instance, the website of Dr. Eric Weiss of the Northeast Florida Plastic Surgery Center (Eric Weiss 2019). 6 This of course is true of mastectomies themselves, as well as of other forms of care, particu- larly given the rise of immunotherapy, which has been spoken about as “God’s gift, the cho- sen elixir, the cure for cancer,” but whose side effects can be deadly. The point of such treat- ments is to stimulate the immune system to attack cancer as it would bacteria and viruses, but this can result in a severe autoimmune response that causes multiorgan failure (Richtel 2016: 1, 26). 7 Whether to follow through with a recommended mastectomy can be just as difficult a deci- sion as whether to have breast reconstruction. This dynamic is highlighted in the Hong Kong romantic comedy film Tian sheng yi dui (天生一對, 2 Become 1, lit. Perfect Match, 2006), based loosely on the published diary Aidao rufang (哀悼乳房, Mourning the Breasts, 2003)
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of celebrated Hong Kong writer Xi Xi (西西, Zhang Yan [張彥], 1938–), which features Bin- go, a woman in her thirties who hesitates to have the radical mastectomy of her left breast that is strongly recommended by her surgeons. The topic of breast reconstruction comes up in this film, with one physician telling Bingo, “After this [mastectomy], you can consider breast reconstructive surgery. No one can tell the difference,” to which she wryly responds, “Sure, if I’m wearing clothes.” But the real decision for Bingo is whether to have the mastec- tomy in the first place. The final minutes of the film feature Bingo on the operating table, about to go under anesthesia, the words “Bingo’s left breast, 1976–2006” appearing on the screen, suggesting that she will not have breast reconstructive surgery; the final image of the film is Bingo many years later taking her daughter shopping for the girl’s first bra. 8 The terms person-centered care and person-focused care are increasingly being used to refer to “a holistic and integrative approach designed to maintain well-being and quality of life for people with dementia” and people in rehabilitation settings (Sun Kyung Kim and Myonghwa Park 2017: 381). See also Heinemann et al. (2016) and Waring (2012). I prefer the nuance of the term person-focused to that of person-centered. The term person-focused is meant to be inclusive. When a person enjoys wellbeing, they are in a far better position to care for others, their communities, and ultimately the planet. The reverse is also true – a healthier environment enables individual healing; person-focused care includes care for health professionals and other caregivers, as well as care for the planet, upon whose health we all depend.
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1 Calls for Patient-Centered Care
Patient advocates have long sought to adopt what they have termed a patient- centered (or, less frequently, patient-focused) approach, in which health profes- sionals attentively engage with patients and understand them as individuals
9 Medical therapeutics – emotions and personal relationships between doctors and pa- tients, in addition to pharmacological interventions and surgical experiments – changed little between the early years of the Common Era and the beginning of the nineteenth century, but by the end of that century, they had been fundamentally transformed (Rosenberg 1992: 10). Rosenberg rightly notes that this transformation is significant not only to the history of medicine but also to social history. 10 This quotation is frequently cited, including by Anne Fadiman (1953–) in The Spirit Catch- es You and You Fall Down (1997: 275), referenced later in this chapter, and by British neu- rologist and bestselling writer Oliver Sacks (1933–2015), another early proponent of person-focused care, in his epigraph for the collection An Anthropologist on Mars: Seven Paradoxical Tales (1995).
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11 McWhinney cites Toombs (1992: 106). He outlines the centuries-long evolution of the clinical method. Some scholars and clinicians prefer the term client to patient. See, for instance, Hojat (2007: xv, 5). The term patient-focused is usually used to refer to an eco- nomic model rather than to the philosophy-based model of patient care discussed below (Marberry 2013). 12 Although the terms patient-centered and person-focused are often used interchangeably in English, many who write on these topics draw sharp distinctions between the two. For instance, Barbara Starfield argues, “In contrast to patient-centered care (at least as de- scribed in the current literature with assessments that are visit-based), person-focused care is based on accumulated knowledge of people, which provides the basis for better recognition of health problems and needs over time and facilitates appropriate care for these needs in the context of other needs. That is, it specifically focuses on the whole person” (2011: 63). The terms person-centered and person-focused also have been used to highlight the importance of clinician and caregiver welfare, in addition to the wellbeing of the patient. Stephen Buetow et al. (2016) argue that “privileging the welfare of the patient,” the es- sence of patient-centered care, “can deny the same attention to the welfare of others,” which could in turn compromise the wellbeing of the patient (2016). In her study of the psychological challenges facing physicians, Caroline Elton likewise critiques what she terms the “mantra of ‘patient-centered care,’” arguing that “patient-centered care only tells half of the story,” that “if a person feels uncared for, emotionally depleted, they will struggle (in some way or other) to carry the emotional burden of another person’s suffer- ing. They will struggle to care” (2018: 258–259). Koven (2010) discusses the sacrifices that physicians often make to their own health and comfort for the sake of their patients and the central role the physical and especially mental wellness of physicians needs to play in any discussion of healthcare reform. In truth, anything that compromises the wellbeing of the patient is by definition not patient-centered care; although not recognized nearly as frequently as it should be, the wellbeing of both clinicians and caregivers is vital to achieving patient-centered care. Furthermore, the term patient-centered does not deny the important role family and close friends play in illness, but it emphasizes that, when able to do so, patients are the ones who determine how “family-centered” their healthcare will be. The term family- centered care also refers to the support family members receive, especially as caregivers, whether of children or adults. For more on the family (understood broadly) and illness, see Part 3. And finally, the terms patient-centeredness, patient-centered care, and patient-centered communication are often used interchangeably (Ronald Epstein et al. 2005: 1517).
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Crucial to the development of the patient-centered approach was psychia- trist George L. Engel’s call in 1977 for a biopsychosocial model to replace the then-dominant biomedical model of disease, which assumed diseases “to be fully accounted for by deviations from the norm of measurable biological (so- matic) variables. It leaves no room within its framework for the social, psycho- logical, and behavioral dimensions of illness” (1977: 130). Instead, he argued, “arriving at rational treatments and patterns of health care, a medical model must also take into account the patient, the social context in which he lives, and the complementary system devised by society to deal with the disruptive effects of illness, that is, the physician role and the health care system” (132). Also vital to popularizing the patient-centered approach were volumes such as Moira Stewart and Debra Roter’s Communicating with Medical Patients (1989), which sought a “fundamental transformation of the traditional clinical meth- od and the social relations it fosters between doctor and patient … [into] a patient-centered clinical method” (18).13 In this volume, Ian McWhinney ar- gued that “the essence of the patient-centered method is that the physician tries to enter the patient’s world, to see the illness through his or her eyes.” This approach incorporates but does not prioritize the “traditional doctor-centered method,” where physicians “try to bring the patient’s illness into their world and to interpret the illness in terms of pathology” (1989: 34). McWhinney also
13 George Engel was not the first to make this call. See, for instance, John Stoeckle’s anthol- ogy of essays from the 1930s through the 1970s on means of improving patient-physician communication. Stoeckle opens the introduction by declaring that “Medicine’s task is patient care,” setting the tone for the volume (1987: 1). He likewise comments on the change in the 1970s, when “anger toward the doctor’s presumed expertise and asserted authority” began being expressed more openly (77). Also noteworthy is F.G. Crookshank’s 1926 article “The Theory of Diagnosis,” which laments that the early twentieth-century diagnostic method “strangely [ignores], almost completely, the physical” (McWhinney 2014: 27). Stewart and Weston (1995) discuss other early proponents of a patient-centered approach, as do Stewart et al. (2013) and McWhin- ney (2014). McWhinney (1995, 2014) outlines the development of the “traditional clinical meth- od,” which originated in France at the turn of the nineteenth century. In the words of Michel Foucault (1926–1984) in Naissance de la clinique (Birth of the Clinic, 1963), this in- volved “a reorganization of the hospital field, a new definition of the status of the patient in society, and the establishment of a certain relationship between public assistance and medical experience, between help and knowledge” (1994: 196). Foucault speaks at length on the clinical gaze. Rosenberg (1992) notes that many nineteenth-century American physicians were all too aware of the potential conflicts between the demands of science and those of clinical practice (29). See Chapter 6 below for examples of nineteenth-cen- tury literature featuring physicians who bemoan the development of the clinical method. For more on the biopsychosocial model see Frankel et al. (2003).
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14 See also Stewart (2003: 123). The first chapter of this volume outlines connections be- tween the clinical method and the “ideas that have formed the modern world” (McWhin- ney 1995: 1). 15 Articles on patient- and person-centered/focused care appear regularly in medical and other journals worldwide, including in Chinese, Catalan, Czech, Danish, Dutch, Finnish, French, German, Greek, Hebrew, Hungarian, Italian, Japanese, Korean, Norwegian, Per- sian, Polish, Russian, Swedish, Thai, and Turkish, as well as in English. 16 See also Charon (2008) and Charon and DasGupta (2011). Charon’s colleague Sayantani DasGupta (2008, 2014) argues for “narrative humility” as opposed to “narrative compe- tence,” acknowledging that the patient’s story is not an object that can be mastered but rather a dynamic and often ambiguous and contradictory entity that requires practitio- ners to engage in self-evaluation and critique regarding their own role in the story, their expectations, and their responsibilities, among other factors. Charon notes that in developing narrative medicine, she was inspired by the broad scope of biopsychosocial and patient-centered medicine (2001, 1897). Charon likewise
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recognizing “what narratives are, how they are built, how they convey their knowledge about the world, what happens when stories are told and listened to, how narratives organize life, and how they let those who live life recognize what it means” allows health professionals and others who treat the ill and disabled to listen to and thus understand better the needs of their patients and ideally provide them with more compassionate, appropriate, and effec- tive care (2008: 9). Charon and other proponents of narrative medicine be- lieve this practice can bridge the divides separating physicians from patients, themselves, colleagues, and society, offering fresh opportunities for “respect- ful, empathic, and nourishing medical care” (ibid.).17 Sayantani DasGupta sim- ilarly argues that “Narrative Medicine is the clinical and scholarly movement to honor the central role of story in healthcare…. We should hold in equal stead multiple ways of knowing – the scientific and the storied” (2014).18
built on the work of Arthur Kleinman, who in The Illness Narratives (1988) asserted that “the patient’s story is central to the role of doctoring” (96), that patients order their expe- riences of illness “as personal narratives,” and that “to fully appreciate the sick person’s and the family’s experience, the clinician must first piece together the illness narrative as it emerges from the patient’s and the family’s complaints and explanatory models…. Time must be devoted in the curriculum to teaching students how to interpret the illness nar- rative and assess the illness experience” (49, 255). And finally, Charon speaks of the im- portance of Oliver Sacks, as an “always-present presence for the worlds of literature, medicine, narrative and health,” whose “Sacks-ian writing” was a “neighbor” of narrative medicine. The two felt their kinship “as doctors interested in the lives of the persons we treat and also as doctors who find some path toward perceiving, through writing, how we could help our patients…. In the early days, he was one of the very few influential persons who permitted a professional interest in language and medicine … He gave us cover as we developed narrative medicine and health humanities” (2015). 17 Improving care of the sick has always been a central goal of narrative medicine. 18 For critiques of narrative medicine, see Downie (2001), who among others has pointed out that the term narrative conceals as much as it illuminates, given the brevity of many conversations between patients and physicians. Narrative medicine presumes the luxury of time, enjoyed by only a small subset of those suffering from health conditions. As the narrator of American writer Charles Brock’s (1969–) recent novel Alice and Oliver (2016) laments, as his wife’s physician informs them of her diagnosis of acute myeloid leukemia: “Medical personnel, doctors and nurses alike, talked in this clipped manner: short sen- tences, quick back-and-forth exchanges…. Time was a premium … In the medical realm … doctors pretended it mattered if the patient understood, before continuing to the next thing” (54). Moreover, storytelling is rarely as straightforward a process as much discourse on nar- rative medicine suggests. Many stories do not have a teller, a listener, a time course, a plot, and a point. In addition, in medicine the patient’s “story” generally is crafted by health professionals, adapted, sometimes significantly, from the patient’s own narrative. This is particularly true in psychoanalysis and other forms of psychiatry, where, as Peter Brooks has argued, the work of the analyst is largely a “recomposition of the narrative discourse”
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Narrative medicine, with its emphasis on the patient’s particular story and on practitioners engaging with patients on an emotional level, resonates with aspects of patient-centered clinical methods. But Moira Stewart and colleagues have argued that one difference between narrative medicine and a patient- centered approach is that narrative medicine “separates itself from the tasks of conventional medicine, in contrast to the patient-centered clinical method, which attempts to integrate its work with the medical tasks” (2014: 10–11). Thomas Freeman likewise believes that the narrative format advocated in nar- rative medicine “lacks the structure desirable in transmitting important knowl- edge quickly in clinical settings.” In contrast, Freeman claims, the patient-cen- tered approach does more to bridge the thick description of the narrative approach and the thin description of the traditional case presentation (2014: 294–295).19 Nevertheless, narrative medicine shares with the patient-centered approach an ideal of care that prioritizes patients and their voices. In the introduction to the third edition of Patient-Centered Medicine (2014), Moira Stewart and her colleagues assert that there is today, some two decades after the publication of the first edition of this volume, “an emerging interna- tional definition of patient-centered care.” At the core of this understanding is the integration of “the relevant aspects of health, disease, and illness experi- ence into a synthesis completely unique for each patient” (3). In this latest ver- sion of Patient-Centered Medicine, Stewart and her colleagues have refined the six components of their vision of the patient-centered clinical method into four: 1) Exploring Health, Disease, and the Illness Experience; 2) Understanding the Whole Person (Individual, Family, Context); 3) Finding Common Ground; and 4) Enhancing the Patient-Clinician Relationship.20
(1986: 73). And finally, as Angela Woods has argued, there are real constraints to narrative; although narrative and other forms of storytelling can foreground “those qualities of per- sonhood so often thought to be excluded from the narrow biomedical approach to medicine and disease … [they] are not the only one[s]…. If we limit ourselves to specific forms of narrative, and to narrativity per se, we run the risk of both isolating and distress- ing people” (2011: 77). 19 Charon (2001) and other proponents of narrative medicine argue that narrative skills are precisely what physicians need given the shrinking time available for conversation with patients (1899). 20 Components 4 and 6 from the 1995 edition (promoting prevention and being realistic) are incorporated into the four components outlined in the 2014 edition. Much discourse on patient-centered care focuses on the patient-physician relationship, but enhancing rela- tionships between patients and other health professionals is also vital. For additional
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2 Person-Focused Care – Empathy, Cultural Humility, Compassion, Healing
Empathy in particular has been deemed central to patient-centered care.21 In most versions of the conventional clinical method, physicians especially were to be calm, detached observers and prescribers of treatment; unlike nurses, who were expected to have empathy, physicians were to build protective walls between themselves and their patients and to “remain uninvolved” (Spiro 1993a: 2; Levasseur and Vance 1993: 76; Stewart et al. 2014: 145). But proponents of a more patient-centered approach regularly have called for increased empa- thy, arguing that empathy should “frame the skills of all professionals who care for patients” (Spiro 1993b: 7). Empathy has been defined in many different ways, but it can be understood most succinctly as “an openness to, and respect for, the personhood of another” (Levasseur and Vance 1993: 83), as “the ability to see and feel from another person’s perspective” (Ofri 2013: 10), and as having affective, behavioral, cognitive, and moral dimensions (Jeffrey 2016: 450).22 As physician Danielle Ofri has described, in the healthcare setting empathy mani- fests as “recognizing and appreciating a patient’s suffering” and involves “being attuned to the patient’s perspective and understanding how the illness is wo- ven into this particular person’s life … [and] being able to communicate all of this to the patient” (2013: 10).23 Acting effectively on one’s understanding of the patient is also vital to empathy. Stewart W. Mercer and William J. Reynolds ex- plain that clinical empathy includes the ability to understand the patient’s situation, perspective, and feelings; to communicate that understanding; and to act on that understating in a therapeutic way (2002: S11).24 Vital as well is
models of patient-centered care, see Paul-Savoie et al. (2015), who discuss how the style of practice differs across caregivers. 21 Stewart et al. (2014) place empathy under “enhancing the patient-clinician relationship” (7), but empathy also comes into play in the other three dynamics they deem central to patient-centered care. 22 The element of respect is crucial. David Morris writes of a colleague who once inter- viewed Pueblo elders regarding end-of-life care and asked whether they wanted their An- glo doctors to show greater “empathy.” The elder replied that they did not. Instead, they said, they wanted respect (2017: 32). Ideally, both are possible. 23 Ofri (2013) also speaks of empathy as a prerequisite for compassion (10). See Hojat (2007) for discussion of the precursors, development, measurement, and consequences of em- pathy in patient care; the consequences include physical, mental, and social wellbeing. 24 Many have criticized calls for increased empathy in medicine, describing for instance the risk of compassion fatigue, which can result from excessive empathy, as more common than previously recognized (Abendroth and Flannery 2006). Others have argued that em- pathy can do little to counter the biases embedded in medicine, that empathy “depends on the very model of authority and paternalism it is presumed to negate” (Banner
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2016: 29). Aaltola (2018) speaks of empathy, and critiques the case against empathy, in the context of animal ethics. 25 Ofri writes, “Just as we do not stand silent when insurance companies deny necessary medications, we cannot stand silent while our legislators’ actions threaten medical ac- cess…. In the United States there are just under a million practicing doctors and more than four million nurses. An additional seven million or more are employed in the health care system. That’s a lot of voices that could be advocating for patients” (2017b: A27). See British former nurse and writer Christine Watson’s (1976–) The Language of Kindness: A Nurse’s Story (2018), among other writings, for powerful testimony on the vital difference nurses make for their patients, doing everything from lifesaving complex drug calcula- tions (152) to gently spoon-feeding a child recovering from a serious illness (112). Watson likewise explains, “The function of nursing is similar to the function of the liver…. Nurses can’t eliminate toxins as the liver does, but we certainly spend a lot of time trying to change the focus of bad things by introducing hope, comfort, and kindness…. Promoting dignity in the face of illness is one of the best gifts a nurse can give” (166–167, 200). For a summary of healthcare debates in the United States through the twentieth- and into the twenty-first century, see Cole et al. (2015: 277–288). Many consider healthcare “an irreducible social good that is constitutive of who we are as citizens of a democracy grounded in social equality and respect for individuals in communities” (ibid.: 287). See also Gawande (2017) and Hoffman (2017). 26 In the introduction to the third edition of Patient-Centered Medicine, Stewart et al. list as central parts of “Understanding the Whole Person” understanding the proximal (family, employment, social support) and distal (culture, community, ecosystem) contexts of that person (2014: 7).
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27 The term cultural competence emerged in the late 1980s, sparked by Terry L. Cross et al.’s volume Towards a Culturally Competent System of Care (1989). As Thackrah and Thomp- son (2013) point out, giving the example of how in Australia the focus has been largely on making healthcare more accessible to indigenous Australians, calls for cultural compe- tence tend to focus on becoming “competent” in one or more particular cultures. See, for instance, volumes such as Larry Purnell and Betty Paulanka’s Transcultural Health Care: A Culturally Competent Approach, which aims to provide “culturally specific health informa- tion” on particular groups even while acknowledging that generalizations are almost cer- tain to be oversimplifications and can lead toward stereotyping (Purnell and Paulanka 1998: 3). Anne Fadiman’s The Spirit Catches You and You Fall Down (1997), on an epileptic Hmong child (Lia Lee), her doctors in California, and the “collision of two cultures,” is frequently taught in medical schools as a case study of the importance of understanding and respecting disparate cultures. For an intriguing contrast, see French writer David Beauchard’s (1959–) autobiographical graphic novel L’Ascension du haut mal (The Rise of the High Evil, 1996–2003); Beauchard’s brother has a severe case of epilepsy. See too Far- rah J. Mateen and the Bhutan epilepsy project’s film The Curse, Bhutan Epilepsy Project (2014), which as its title suggests, reveals the extent to which epilepsy is perceived not as a health condition but instead as a curse in Bhutanese society. A number of writings satirize the attitudes of physicians treating individuals from cul- tures different from their own, who erroneously believe themselves superior. Among these is Nigerian writer Obi Egbuna’s (1938–2014) short story “The Medics” (1970) which features an American medical student in Nigeria who disparages a local doctor, believing himself vastly superior to those without “proper, up-to-date medical training at a univer- sity” (1970: 66). of this phenomenon occurs in Egyptian dentist and writer ʿAlāʾ أ نA striking manifestation 28 ش � � ا � Ra ʾfat tells the story of .(2007 , ������ي���ك�ا ج�و) novel Chicago (–1957 ,ع�ل ء ال� �سوا �ي�) al-Aswānī’s a man who is just about to die; his caregivers at the hospice (masahha) send for his chil- dren, who hurry to their father’s bedside, but as soon as they arrive, his health improves. This happens a second time. So the children obtain a court injunction against the hos- pice, “in which it was stated that the hospice prognostication system was woefully defi- cient, because every time they had to get away from their jobs and businesses and bear the brunt and expenses of travel to attend their father’s death, yet were surprised to see him alive. They warned the hospice that, were that to happen again, they would demand considerable damages to compensate them for wasting their time and money.” Ra ʾfat continues, “The Eastern mentality would interpret this behavior as ingratitude on the part of the children, but I view it as proof of respect for time in American society” (2007: 33–34). Of course, Ra ʾfat oversimplifies matters, but his basic point is valid, at least to the extent that there are certain things that, in general, people from different societies see
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differently. Thank you to Ceyhun Arslan for confirming the similarity between the pub- lished English translation and its Arabic source. 29 In 1998, Melanie Tervalon and Jann Murray-Garcia proposed cultural humility as more appropriate than cultural competence or cultural sensitivity, arguing against the “discrete mastery traditionally implied by the static notion of competence” and believing that phy- sicians need to relinquish the role of expert vis-à-vis patients and instead learn from pa- tients and make them “capable and full partner[s] in the therapeutic alliance” (120–121). The idea of cultural humility has gained traction in recent years and emphasizes open- ness, self-awareness, and egoless, supportive interactions as well as self-reflection and critique (Foronda et al. 2016); Zitter describes it as about “asking questions, listening, and learning. And acknowledging that we can never be experts on someone else’s life…. Cul- tural deference can sometimes be dangerous” (2017: 154–155). See also Neubauer et al. (2015) for discussion of the relationship between cultural competence and cultural hu- mility. Kleinman too has criticized the cultural competence movement as reifying “eso- teric cultural beliefs and ethnic stereotypes” (2013: 1376). And textbooks are slowly being changed to reflect the need for greater cultural nuance. For instance, in the section “Cul- tural Differences in Response to Pain” included in Pearson Education’s Nursing: A Con- cept-Based Approach to Learning, students are instructed that “Jews may be vocal and demanding of assistance. They believe that pain must be shared and validated by others…. Blacks believe suffering and pain are inevitable.” Pearson has said that they will remove these biased passages from future editions of Nursing (“Regarding the Pain” 2018: 17). 30 A focus on (sub)cultural difference likewise diverts attention from the social processes inherent within the culture of medicine itself (Thackrah and Thompson 2013). As Brody and Hunt succinctly observe, “We cannot predict a patient’s preferences and values by categorizing him or her into a hyphenated ethnic group any more than someone else could predict exactly how we will behave by categorizing us as physicians” (2005: 429).
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Calls for greater empathy generally also urge increased compassion.31 Dis- tinctions between empathy and compassion are often blurred, with some schol- ars and practitioners believing that empathy is part of compassion and others that compassion is part of empathy. Others see empathy as a prerequisite for compassion or compassion as a prerequisite for empathy, and still others maintain that a broad concept of empathy is more complex and nuanced than compassion and therefore more relevant for clinical practice (Coulehan and Block 1997: 27; Jeffrey 2016: 449).32 For his part, David Jeffrey urges dynamic empathy, empathy that involves connections with the patient, clinical curios- ity (making clear to patients that they matter), having an “another-oriented perspective” (trying to see the world from the patient’s perspective), respecting the patient as an individual with agency and dignity, and acting appropriately on this understanding. Rather than simply urging practitioners to be more compassionate, this model of empathy focuses on developing moral concern, attitudes, and skills; empathy, unlike compassion or sympathy, does not just happen – it requires effort (ibid.: 450). Nearly a century ago American physi- cian Francis Weld Peabody (1881–1927) asserted that “the secret of the care of the patient is in caring for the patient” (1984: 818). Danielle Ofri rightly notes that in this “deceptively simple axiom, he encompassed compassion, empathy, and human connection, along with all the medical technologies and therapeu- tic modalities that a doctor can offer to a patient. Beyond curing, this is what offers the possibility of healing” (2013: 212).33 As Francis Peabody’s and Danielle Ofri’s comments suggest, most propo- nents of respectful, patient- (and person-) focused care agree that the ultimate
31 Stewart et al. (2014) list “compassion and empathy” as the first elements of “Enhancing the Patient-Clinician Relationship” (7). 32 Paul Bloom (2016) is somewhat of an outlier with his claim that empathy occurs only when a person feels the identical emotion of another person. Understood in this manner, empathy requires undue focus on the “here and now,” which can leave us “insensitive to the long-term consequences of our acts” as well as blind us to “the suffering of those we do not or cannot empathize with” (9). Bloom decrees that it is only without empathy, in a narrow sense, that an individual can become “fair and impartial,” and he makes a strong case for “rational compassion.” Bloom is careful to clarify that he is not against empathy in the sense of being caring, compassionate, and good to others, or even understanding other people. In an interview with Tom Bartlett, Bloom distinguishes between empathy and compassion: “Empathy is putting yourself in someone else’s shoes, feeling what they feel … and being drawn to that. Compassion is caring for people, being concerned about them, but not feeling their pain. Just loving them” (2016). 33 Rita Charon likewise cites Peabody, although she rightly argues that his exhortation falls short of defining the specific skills practitioners should be developing. She equates empa- thy with “caring for the patient,” and declares that this “can be understood, exercised, strengthened, and enjoyed through reclaiming narrative knowledge” (1993: 148, 158).
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34 Cassell also criticizes the perpetuation of what he terms a “fundamental error” in typical approaches to patient-centered care, the division between medical science and focus on the patient (2013: xiii). See also his 1991 The Nature of Suffering, which declares the task of the twenty-first century “the discovery of the person – finding the sources of illness and suffering within the person, and with that knowledge developing methods for their relief” (x). Stewart et al. speak of the “holistic health of the patient” (2014: 6–7). See also Lisa Stevenson, who in Life Beside Itself, a study of care in the Canadian Arctic during the tu- berculosis epidemic (1940s–1960s) and suicide epidemic (1980s to the present day) reveals the damage inflicted by biopolitical bureaucratic care, “a form of care and governance that is primarily concerned with the maintenance of life itself, and is directed at popula- tions rather than individuals” (2014: 3). Stevenson characterizes this type of indifferent, anonymous care as potentially “murderous” (6). Citing J.M. Coetzee’s novel Life and Times of Michael K (1983), examined in Chapter 5, she declares that in a certain sense, “anony- mous care is concerned more with what a human being is than who” (107). 35 American physician-writer Marc Straus (1943–) captures well in the play Not God (2006) the struggle to refrain from giving seriously ill patients the false hope of a “cure”: “I pray … that this one woman with ovary cancer//in room 1122 will have a complete remission./The word cure, dear God, is always/near my lips, though I have been constrained from/saying it aloud. Allow me at least to think it” (2006: 66). 36 As McWhinney summarizes, “Healing is not the same as treating, or curing. Healing hap- pens to the whole person; that is why we can be cured without being healed, and healed without being cured” (2014: 29). See too Lerner, who describes healing as “an inner pro- cess through which a person becomes whole. Healing can take place at the physical level … at an emotional level … at a mental level … at a spiritual level … Healing is … a necessary part of curing … Healing, however, goes beyond curing and may take place when curing is not at issue or has proved impossible” (1994: 13–14).
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healer acknowledges that great clinical care must always be patient-centered and that shared decision making with the patient is essential…. The best heal- ers have always been first and foremost patient-centered” (2014: 36).37 And Co- chran concurs with physician Amy Compton-Phillips’s assertion that “A heal- er’s role isn’t to heal a problem, it is to heal a person” (ibid.: 37).38 Donald M. Berwick, an American physician and former administrator of the Centers for Medicare and Medicaid Services, argues for a new, bolder defini- tion of the term patient-centered and ultimately person-focused care: “The ex- perience (to the extent the informed, individual patient desires it) of transpar- ency, individualization, recognition, respect, dignity and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care” (2009: 560). Berwick explains that he fears becoming a patient, not because of what he knows about the technical hazards and lack of reliability in care but because of the loss of dignity, “the loss of influence over what happens to me.” What scares him is “to be made helpless before my time, to be made ignorant when I want to know, to be made to sit when I wish to stand, to be alone when I need to hold my wife’s hand … to be told when I wish to be asked” (2009: 560). In contrast, person-focused care welcomes patients to assert their humanity and their individuality, and even while not guaranteeing survival, much less cure, promotes healing and wellbeing.39 Nigerian physician and novelist Uzodinma Iweala recalls the remarks fellow writer and physician Abraham Verghese made at the induction ceremony for his medical school class:
In the words of British poet W.H. Auden, citing his physician father in “The Art of Heal- ing” (1969), “Healing / … is not a science, / but the intuitive art/ of wooing Nature” (835). Oliver Sacks uses this excerpt from Auden’s poem as the epigraph for Awakenings (1973). 37 See also Zitter’s emphasis on the importance of shared decision making (2017: 144). 38 It is crucial to distinguish between what has been identified as the importance, if not the imperative, of health and that of healing. See, for instance, Lupton (1995). Greenhalgh (2015) introduces “the imperative of thinness,” arguing that “today, health is such a posi- tive value that it is unthinkable not to embrace it and adopt the constant self-surveillance and discipline it requires. Because body size reflects the state of one’s health (or so it is claimed), what we have today is … the imperative of thinness” (21). Greenhalgh likewise sees health as a primal, super-value in American culture, which has enabled a weight- based identity as “becoming one of the core identities of Americans everywhere” (75). This is very different from healing. 39 In the epilogue of Being Mortal, Gawande declares that the job of medicine is larger than ensuring health and survival: “It is to enable well-being. And well-being is about the rea- sons one wishes to be alive. Those reasons matter … all along the way [of life]” (2014a: 259).
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To really make an impact, we need to move beyond a focus on providing treatment and toward the idea of healing…. Verghese made the point that anyone can be taught the principles of treating illness, the technical as- pects of care – what medicine to prescribe and how much, the surgical techniques necessary to remove a tumor or repair an aneurysm [i.e., curing] – and that these skills are extremely important, indeed central, to the practice of medicine. But healing, he suggested, is something differ- ent. Healing is that ineffable something that happens between the per- son providing care and the patient, which may improve life, even in the absence of a treatment that leads to a cure…. Healing requires compas- sion, a “shared sense of humanity,” and the ability to see another’s pain as “the kind of thing that could happen to anyone, including oneself insofar as one is a human being.” (2012: 206–207)
Needless to say, a true healer is “a physician who will be there even when there is no cure” (Weston and Brown 2014a: 167). This is the ideal to which many physicians and other health professionals aspire, one they have repeatedly articulated. A recent example is American physician Paul Sudhir Arul Kalanithi’s (1977–2015) When Breath Becomes Air (2016), written as he was dying from metastatic lung cancer. Looking back on his career, Kalanithi describes his resolve, after losing his first patient, to “treat all my paperwork as patients, and not vice versa” (2016: 77). And after a friend from medical school is killed in a car accident, he fears he has become “[Leo] Tolstoy’s [Лев Николаевич Толстой, 1828–1910] stereotype of a doctor, preoc- cupied with empty formalism, focused on the rote treatment of disease – and utterly missing the larger human significance” (85).40 Kalanithi worries that he is losing sight of the importance of human relationships between doctor and patient: “Technical excellence was not enough. As a resident, my highest ideal
40 Kalanithi then cites, without giving his source, from book 9, chapter 16, of Russian writer Leo Tolstoy’s Voina i mir (Война и мир, War and Peace, 1869), in which Natasha Rostov falls gravely ill and doctors visit her bedside en masse. There they “talked much in French, German, and Latin, blamed one another, and prescribed a great variety of medicines for all the diseases known to them” (1966: 85). The narrator continues by observing that no one in fact suffers from the “known” diseases, that is to say, the conditions described in the medical books, since every condition is particular to the individual, a combination of the maladies of an individual’s various organs. He argues that “this simple thought could not occur to the doctors … because the business of their lives was to cure, and they received money for it and had spent the best years of their lives on that business” (726–727). Here Tolstoy is highly critical of medicine. For more on the conundrum of cure, see Chapter 7 in this book.
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3 Challenges to Person-Focused Care
Today, “patient-centered care” is the first of five core competences required of health professionals in the United States as determined by the Health and
41 Tolstoy depicts the failure of anyone but Ivan Ilyich’s servant Gerasim to offer him com- fort as causing Ilyich more pain than his undiagnosed health condition, noting that apart from the lies about his health, “what most tormented Ivan Ilyich was that no one pitied him as he wished to be pitied. At certain moments after prolonged suffering he wished most of all … for someone to pity him as a sick child is pitied. He longed to be petted and comforted” (1960: 138). Kathryn Hunter points out that Gerasim is one of the many male caregivers in literature who are “gentle, calm tenders of the ill or dying” (1988: 117). 42 Gawande calls “The Death of Ivan Ilych,” “the best portrayal of sickness and suffering I have ever read – minutely observed, difficult and still true a century and a quarter later” (2014b).
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Medicine Division (formerly Institute of Medicine) and is defined in part as to “identify, respect, and care about patients’ differences, values, preferences, and expressed needs … communicate with, and educate patients; share decision making and management.”43 The American Academy on Communication in Healthcare (aach, est. 1979), the European Association for Communication in Healthcare (each, est. 2001, with members on five continents), and numerous other organizations promote, in the words of the aach: “A health care system where all patients, health professionals, trainees and researchers feel valued, are treated equitably with respect, compassion, understanding, and are active- ly engaged in healthcare processes and decisions” (Academy of Communica- tion in Healthcare 2019).44 The Institute of Medicine, the Mayo Clinic, the who, and other medical organizations have given particular emphasis in re- cent years to the importance of patient engagement and collaboration, making clear that patients can be “contributing partners in the work of medicine” and encouraging health professionals to accept patients as valued participants in their own care (deBronkart 2015).45 Some patient advocates, such as Hugo
43 The other four core competences are the ability to work in interdisciplinary teams, em- ploy evidence-based practice, apply quality improvement, and utilize informatics. The Institute of Medicine (est. 1970), part of the U.S. National Academies of Sciences, Engi- neering, and Medicine, was renamed the Health and Medicine Division on March 15, 2016. Its definition of patient-centered care echoes many understandings of person-focused care. 44 For its part, each declares, “Effective healthcare communication is essential to high qual- ity clinical practice…. The evidence-base behind effective healthcare communication and the move towards a person-centered approach incorporating shared responsibility and decision making is firmly established and adds to the moral imperative of a more equal relationship between patients and providers” (International Association for Com- munication in Healthcare 2014). Tomes summarizes current efforts to actualize the pa- tient-centered model of care (2016: 388–422). 45 See also Dave deBronkart and colleagues’ Let Patients Help! (2013) which discusses how physicians, nurses, patients, and caregivers can “partner for better care.” The idea of pa- tients and physicians as partners has always been one of the aspirations of patient-centered care. For instance, in 1995, McWhinney defined patient-centeredness as a moral philoso- phy that (1) considers patients’ perspectives, individual experiences, needs, and wants; (2) allows patients to give input into and participate in their own care; and (3) enhances un- derstanding and partnership in the patient-physician relationship. More recently, Ronald Epstein et al. identified the goal of patient-centered communi- cation as helping practitioners “provide care that is concordant with the patient’s values, needs and preferences, and that allows patients to provide input and participate actively in decisions regarding their health and health care” (2005: 1516). Although Nancy Tomes distinguishes between a “patient-centered health care system” and patient “engagement,” “activation,” and “collaboration” (2016: 391), engagement, activation, and collaboration can be seen as fundamental aspects of patient- and person-centered/focused care, at least for individuals who welcome being more active participants in their healthcare. But in
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Campus, a member of the Society for Participatory Medicine, have argued that in fact, it is time to move beyond participatory medicine and instead “focus on educating, enabling and equipping patients with the tools necessary to master autonomy and the art of self-care” (Dawson 2014). Yet despite these and many other efforts, patient- and ultimately person- focused care remains far from mainstream, as suggested by current discourse on many medical procedures, including breast reconstruction, as well as by writings such as physician David R. Kopacz’s Re-Humanizing Medicine, which laments how medical systems around the world, from the United States to New Zealand, continue to dehumanize and harm both health professionals and their patients.46 Even more deeply concerning is the rise of violent at- tacks against health professionals. To give one example, in the past three years in the state of Maharashtra, India, alone, more than forty-five health profes- sionals have been attacked by the relatives of patients (Pandit 2017). Another
the past few years, as the flow of information and knowledge has changed dramatically thanks largely to the internet, there have been increased calls in many parts of the world, especially among “e-patients” (empowered, engaged, equipped, enabled), for an even more profound shift in roles and new models of collaboration. 46 Kopacz’s experiences in the United States and New Zealand, the former with profit-driven insurance companies and the latter with a national health system, lead him to call re- humanizing medicine a “universal need” (2014: xxiii). Others have criticized the persistent so-called cookbook approach to medicine. Cook- book medicine, also known as algorithmic medicine, refers to a rote and fixed approach to practicing medicine, treating patients with a predetermined “recipe” rather than en- gaging with them thoughtfully and personally (Wen and Kosowsky 2013: 4, 307). For in- stance, if the patient has “chief complaint” A, then the physician is expected to ask about risk factors 1, 2, and 3. If one of these risk factors is present, then the physician is expected to run tests i, ii, and iii. If these tests are negative, then diagnoses x, y, and z can be “ruled out,” so the physician needs to consider tests iv, v, and vi (4). In contrast to this cookbook approach, which is based nearly entirely on medical data, or at least alleges to be, many now are advocating more personalized medicine, in the belief that not listening to pa- tients and their stories can lead to misdiagnosis and often to no diagnosis at all. Wen and Kosowsky remark that our current era of depersonalized diagnosis has significant advan- tages over past eras but also many problems, problems “rooted in our unshakable belief in science, our dysfunctional healthcare system, and the lack of attention to the individual patient” (31). And so they and many others have called for “individualized care” (12). Like- wise, in The Finest Traditions of My Calling (2016), in a chapter ironically titled “Famous Factory Meatloaf” (in response to Gawande’s appeal that medicine learn from chain res- taurants such as the Cheesecake Factory how to deliver safe, uniform care), psychiatrist Abraham Nussbaum critiques calls to standardize medicine into so many recipes, lament- ing that this reduces the body to a “collection of parts” (118–119). See also Sandeep Jauhar’s (2014) caution that practitioners not homogenize healthcare. To clarify, the term person- alized medicine frequently is used to refer to medicine that relies on genomic information. For more on this phenomenon, see Vollmann (2015).
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prominent example of a patient attacking health professionals was the 2012 murder of Chinese rheumatologist Dr. Wang Hao (王浩) and the wounding of several of his colleagues at the First Affiliated Hospital of Harbin Medical University (哈尔滨市医大一院) by Li Mengnan (李梦南), a young man from Inner Mongolia with ankylosing spondylitis who was angry that he had been refused treatment with Remicade.47 According to Li Mengnan’s attorney, his rheumatologist did not speak with him directly about the decision to stop ad- ministering this medication, instead sending Li out of the room and talking only with his grandfather. The written defense plea submitted by Li’s attorney stated that “the hospital’s negligence, over-prescription, and terrible quality of service” were what triggered Li’s attack on medical personnel (Beam 2014).48 Although far less likely to resort to violence, healthcare personnel are them- selves frequently just as disenchanted as the people for whom they care. The cardiologist Sandeep Jauhar notes in the memoir Doctored: The Disillusionment of an American Physician (2014) that in a 2008 survey of twelve thousand physi- cians only 6 percent reported positive morale (2014: 6). Jauhar concurs fully with a colleague’s public laments on medscape.com: “The public policy forces acting upon us are pushing us into being technicians on an assembly line with less and less time to relate to our patients as people and sometimes hindering
47 Although the patient Li Mengnan had in the past responded well to the anti-TNF (tumor necrosis factor) intravenous medication Remicade, he was refused additional Remicade infusions because he tested positive for tuberculosis; it is dangerous for people with tu- berculosis to be given Remicade. Li Mengnan’s lawyers argued that in fact he had had tu- berculosis before his first Remicade infusion and that the physicians had not said any- thing at that time because they stood to make a profit from Remicade, an extraordinarily expensive medication. Ankylosing spondylitis is a chronic inflammatory disease that can cause vertebrae in the spine to fuse. Dr. Wang was not Li Mengnan’s physician; he was simply the first “white coat” Li saw as he stepped off the elevator (Beam 2014). 48 China’s healthcare system provided cradle-to-grave medical support as recently as the 1970s, but its public hospitals now are overburdened and cannot provide the sophisticat- ed care to which many in Europe and North America have become accustomed. The lack of trust between patients/families and health professionals has led to a system of “mal- practice mobs”; such threats of medical disputes descending into violence impacts which cases are taken to court and how judges handle those cases that are (Liebman 2013). See also Wee (2018). The crisis of trust also has led to a spike among wealthy Chinese in medical tourism, who are looking not only for medications and treatments unavailable at home but also for a better relationship with the health professionals entrusted with their care. Cai Qiang, widely regarded as the pioneer of Chinese medical travel, started his company “after be- ing moved by the friendliness of Australia’s doctors and nurses” at the birth of his daugh- ter (Wee 2017). For a summary of transformations in medical education in China see Yu- pei Zhao et al. (2016).
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49 See also O’Rourke (2014). 50 Jauhar too emphasizes that the compass of most physicians “begins and ends with their patients” and that the best part of their jobs is “taking care of people” (2014: 248). Cochran and Kenney (2014) speak of the urgent need in the United States for a “patient-centered, safe, equitable, accessible, and affordable” healthcare system. Al- though questions of accessibility, affordability, equitability, and safety often are raised separately from those of patient-centered care, ultimately patient-centered care is pre- cisely care that not only is compassionate and empathic but also safe, equitable, accessi- ble, affordable, and of high quality. See Rosenthal (2017) for a comprehensive study of the ills facing the American “medical-industrial complex” and discussion of some of the rea- sons it is far from providing accessible, affordable, equitable, and safe quality care to all Americans. The situation is likely to become increasingly dire, with many unable to afford quality long-term care. 51 There are many exceptions, including cardiologist Dr. Thomas Graboys (1944–2014), a professor of medicine at Harvard Medical School and senior physician at Brigham and Women’s Hospital in Boston, who chronicled his struggle with Parkinson’s disease and Lewy body dementia in Life in the Balance (2008). Graboys was known for being not only an exceptionally skilled and meticulous clinician but also, in the words of Peter Zheutlin, his co-author and the son of one of his patients, for “his intense concern for what ailed the hearts and souls of his patients, and his unstinting generosity with his time. Despite the crushing workload he carried on his shoulders, no patient was ever rushed and no patient concern was ever belittled” (2008: x). Graboys himself describes how his engage- ment with patients was “deeply personal,” that to be truly effective, “I listened as people told me their life stories, their fears, and their hopes.” He also reminds his colleagues that “each patient is a window into the human condition. That is why a doctor should feel privileged by all patients who entrust themselves to his or her care” (xxi). Similarly, in Deep Medicine: How Artificial Intelligence Can Make Healthcare Human Again (2019), American cardiologist Eric Topol (1954–) argues that “the greatest opportunity offered by artificial intelligence (AI) is not reducing errors, or workloads, or even curing cancer: it
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is the opportunity to restore the precious and time-honored connection and trust – the human touch – between patients and doctors” (2019: 18). 52 Robert C. Smith et al. (2011) and Ronda Hughes (2011) also observe that the concepts of patient-centered and person-centered care have not been adequately clarified. 53 Weston and Brown speak of students “catching” the lessons of this tacit curriculum “through immersion in the system [and] especially through students’ relationships with more senior learners and their preceptors,” noting that the same phenomenon occurs in all professional schools (2014a: 206). Among these lessons are that biology trumps every- thing else, the humanities are of secondary importance, feelings are dangerous, and memorizing facts is more important than understanding concepts (ibid.: 207). But of course, as Harvard Medical School student Clare Malone relates in “The Diagnosis,” in- cluded in Susan E. Pories et al.’s The Soul of a Patient: Lessons in Healing for Harvard Medi- cal Students, her patient Giana, who suffers from Li-Fraumeni Syndrome (an inherited familial predisposition to a range of cancers) and had been treated coldly and abruptly by a physician after her extensive bleeding from a D&C, “Patients are people with feelings and emotions, and a good doctor will never forget that, not for one moment. Even if it’s the thousandth time you have diagnosed someone with a particular disease, it is always the first time for the patient” (2018: 232).
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4 Narrative Interventions
Whereas the scientific literature on the value of person-focused care is not as robust as some might hope, the creative literature on the subject – novels, memoirs and other life writing, plays, poems, and short stories frequently writ- ten by (former) patients themselves, their loved ones, or health professionals – is voluminous and unmistakably reinforces the need, whenever possible, for a person-focused approach.56 Even more important, this literature regularly tar- gets the entire culture of medicine. Most scientific discourse on patient-cen- tered care focuses primarily on transforming relationships between patients and a distinct group of health professionals, most often physicians but also nurses. In contrast, literary works frequently call for everyone who engages with patients to practice person-focused care; fiction, memoirs, and other forms of literature reveal the urgency of health personnel of every level – from
54 van Pelt also speaks of the dearth of peer support. In the last fifteen years he and one of his patients have together piloted patient therapy and peer support groups (Lantz 2017). 55 Cf. McWilliam and Brown (2014), Stewart (1995, 2003, 2014), and Stewart et al. (2014). 56 To give one example, examining ninety-one first-person accounts of experiences with ill- ness, healthcare, and hospitalization published between 1960 and 1982, Baker argues that the authors’ primary plea is “for professionals to be attentive and responsive to subtle cues from their patients and to be ready for the patients’ needs and desires to change at any time” (1985: 152). Most patients express a preference for “a client-professional rela- tionship which involves interaction between an articulate, involved client or family and a professional who is responsive to the varied and changing needs of individual clients and their families” (ibid.: vii).
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57 Hiatt et al. summarize the essential roles played by local people “possessing widely vary- ing levels of skill and education – and often lacking even a rudimentary credential [in] delivering care to individuals and promoting the community’s health” (2016: 50), at least in global health. In the United States, they remind us, “credentials trump all and vast pools of potential talent go unused, despite the fact that having caregivers establish rela- tionships with patients, including visiting them in their homes, is ‘patient-centered’” (53). 58 Memoirs of a Woman Doctor was serialized in Ruz al-Yusuf in 1963 and published as a vol- ume in 1965.
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person-focused care as not necessarily more time- or labor-intensive than oth- er forms of care and emphasizing that person-focused care needs to be a prior- ity of healthcare writ large. In Chapter 5, “Speaking For, Not With,” I take up three novels that mock the assumptions health professionals and society at large make about people and health conditions more generally: Coetzee’s The Life and Times of Michael K (1983), British-Pakistani writer Mohammet Hanif’s (1964–) Our Lady of Alice Bhatti (2011), and 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). Whereas Life and Times reveals how readily patients can be dehumanized even when they are understood to have a story, namely a life outside the healthcare setting, Our Lady and Equations caution that compassionate care is not neces- sarily person-focused and can readily overlook the needs of the patient. Chapter 6, “Medically Treating, Not Healing,” turns to two narratives critiqu- ing approaches to chronic conditions that focus solely on treating these condi- tions and leave little space for healing or wellbeing: the Japanese writer Wata- nabe Jun’ichi’s (渡辺淳一, 1933–2014) Hanauzumi (花埋み, Flower Burial, 1970) and the Korean writer Pak Wansŏ’s (박완서, 朴婉緖, 1931–2011) “Kŭ kaŭl ŭi sahŭl tongan” (그 가을의 사흘동안, During Three Days of That Autumn, 1980). Both texts feature female physicians treating patients who have had ex- periences similar to their own, yet who nevertheless are very different from their physicians. In so doing, Flower Burial and “During Three Days” emphasize the importance of providing people of all genders access to physicians of all genders, and providing everyone, especially those with chronic conditions, ac- cess to physicians devoted to healing, not just to treating and temporarily cur- ing their patients. For its part, Chapter 7, “Interventions in Dying,” discusses a variety of writ- ing from China, India, Japan, the United Kingdom, and the United States that grapples with the ethics of medical innovations that either prolong dying, of- ten in a misguided yet determined attempt to prolong life, or take life outright, often as part of an obsessive yet understandable attempt to cure a particular condition. These writings highlight the need to modulate expectations sur- rounding medical interventions. They call attention to the urgency of increased person-focused care that respects the desires of the patient and increased un- derstanding of the difficulties faced by health professionals trained and ex- pected to cure and prolong lives at all costs. Together, these writings suggest that only by tempering their obsessions with life and cure can societies im- prove the quality of both. Many of the works analyzed in part 2 have been translated globally and adapted into other media. Where relevant, I examine the insights these
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translations and adaptations provide into the challenges and opportunities of implementing person-focused care. In addition to the texts mentioned above, the chapters of Part 2 also include references to a variety of other narratives that elaborate on the phenomena under discussion. Finally, we frequently speak in terms of cultural approaches to medical treatment (e.g., distinguish- ing “the Japanese” from “the American” from “the South African” approach), but usually these characterizations do not go far beyond broad brushstrokes; culture frequently does not offer a ready answer to the expectations of either patients or health professionals concerning medical care.59 I therefore exam- ine the phenomenon of person-focused care in general terms and group the literary texts of Part 2 by the phenomena and sub-phenomena with which they are most deeply engaged (i.e., contrasts in care; speaking for, not with; medi- cally treating, not healing; and interventions in dying). Cultural distinctiveness is noted where appropriate. … In May 2016, former prime minister of Japan Koizumi Jun’ichirō (小泉純一郎, 1942–) visited a group of sailors in the U.S. Navy who had provided assistance to Japan in the immediate aftermath of the March 2011 triple disaster at the Fukushima Daiichi nuclear power plant. Shortly after returning home, these and hundreds of other members of the military became sick with leukemia, thyroid disease, and other conditions, which they blamed on radiation expo- sure. Neither their physicians nor the U.S. government have endorsed their claims against Tokyo Electric Power Company, which operates the Fukushima plant. In contrast, Koizumi – now a staunch opponent of nuclear power – has been working to raise funds to assist with their healthcare expenses. Just as important, when he met with a group of these sailors, Koizumi treated them with the utmost compassion and respect. Recalled Petty Officer William Zeller, “This is a man where I saw emotion in his face that I have not seen from my own doctors or staff that I work with, or from my own personal government….
59 Susan Long’s comment regarding the relationship between culture and how people con- tend with dying applies to healthcare writ large: “Culture does not offer a simple solution for how a person or a family copes with dying” (2005: 111). This is not at all to deny the differences in disease concepts among cultures, only to argue against assuming that be- cause a person is from a particular culture, they have a particular understanding of and expectations surrounding illness and care. Hilary Smith’s study of foot qi makes clear just how much “past perceptions of the body, health, and illness differed from those of today” but also cautions how careful we must be in making assumptions about illness experi- ences (2017: 23).
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Nobody has put the amount of attention that I saw in his eyes listening to each word, not just from me, but from the other sailors who have gone through such severe things healthwise” (Rich 2017a: 8). Koizumi has been criticized for bas- ing his anti-nuclear position not on science but instead on emotion. One Japa- nese professor at the Tokyo Institute of Technology calls him a “very dramatic person,” who “does not have so much basic knowledge about nuclear power, only feelings” (ibid.).60 But Zeller echoes the sentiments of many people frustrated with the lack of empathy, compassion, and respect they have received from medical profes- sionals. What they want, what they need, in addition to experts in biomedi- cine, are health professionals who will listen to them and care about and for them as people.61 As Zeller’s comments make clear, this type of care, character- ized by presence, frequently can take the shape of engaged conversation.62 And despite being one of the least esteemed aspects of healthcare, one that is seldom compensated, communication between patients and health profes- sionals can be remarkably successful. Recent research has demonstrated that “conversation between doctor and patient can be as potent as an analgesic as many treatments we prescribe,” and in fact, communication alone – asking open-ended questions, listening attentively to the answers, and offering words of encouragement about getting better – has been demonstrated to be more effective than treatment alone (Ofri 2017).63 The writings analyzed in the
60 This paragraph draws from Rich (2017a). 61 Similarly, in Being Mortal Gawande describes the encounter of his physician father with two surgeons after an mri revealed a spinal cord tumor. The first, at Brigham and Wom- en’s Hospital in Boston, “had the air of the renowned professor he was – authoritative, self-certain, and busy with things to do” (2014: 197). The second, at the Cleveland Clinic, also exuded confidence. But that doctor took the time to answer his patient’s questions and in turn asked some of his own. This man, Edward Benzel, “had a way of looking at people that let them know he was really looking at them…. Benzel had made the effort to understand what my father cared about most, and to my father that counted for a lot.” And so Gawande’s father chooses Benzel: “He and his neurosurgeon knew what was com- ing. But they also knew what mattered to him and left well enough alone. This was, I re- member thinking, just the way I ought to make decisions with my own patients – the way we all ought to in medicine” (ibid.: 198–199). I discuss Gawande’s work at greater length in Chapters 4 and 7. 62 Kleinman defines presence as “the intensity of interacting with another human being that animates being there for, and with, that person. Presence is a calling forward or a stepping toward the other. It is active. It is looking into someone’s eyes, placing your hand in solidarity on their arm, speaking to them directly and with authentic feeling” (2017: 2466). 63 Ofri speaks here of conversation between doctors and patients, but elsewhere in the ar- ticle she acknowledges that how doctors and nurses communicate treatment can have a
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following chapters echo and elaborate on these findings. They underscore how essential a more person-focused approach has been and will continue to be in promoting healing and attaining wellbeing, and they stress the urgency of hu- manizing healthcare.
profound impact on how patients experience the results of treatment. Ultimately, it is not just physicians and nurses who need to be able to communicate with patients but instead all who interact with them.
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