Interventions in Dying

Chapter 7 Interventions in Dying

The title – The Death of Cancer – is nothing if not provocative. And the subtitle elaborates: After Fifty Years on the Front Lines of Medicine, A Pioneering Oncolo- gist Reveals Why the War on Cancer Is Winnable – and How We Can Get There (2015). The lead author, American physician Dr. Vincent T. DeVita, Jr. (1935–), writes that he has seen the war on cancer “from every possible angle: as researcher and clinician at the National Cancer Institute, as the longest-serving director of the National Cancer Institute, as physician in chief at Memorial Sloan Kettering Cancer Center (mskcc), as director of Yale University’s Cancer Center, as president of the American Cancer Society (acs), and, most recently, as a patient myself” (DeVita and DeVita-Raeburn 2015: 6–7).1 DeVita’s conclu- sion is simple: “We are winning this war” (9). There is much truth to this statement. But the larger argument of DeVita and his co-author, his daughter Eliza- beth DeVita-Raeburn, is more controversial, namely, that at least in the contemporary United States, many cancer patients are losing their lives less because of the disease itself than because of the complex bureaucracies surrounding the disease, the timidity of review boards and the Food and Drug Administration, and physicians who “won’t stand by their patients or who are afraid to take a chance” with potentially risky treatments (32). For DeVita and DeVita-Raeburn, it is all about responding aggressively to an aggressive disease. DeVita is explicit about his strategy of “buying patients time,” not so they can get their affairs in order, but so they can be kept alive to take advantage of the next experimental treatment. He asserts, “I’m an aggressive doctor. I will do whatever it takes to cure patients and, if that isn’t achiev- able, keep them going as long as possible” (17). DeVita gives the example of his friend Lee, who after being diagnosed with a particularly aggressive form of prostate cancer, told DeVita he was willing to do “anything” to buy himself another decade. And DeVita did everything in his arsenal to keep Lee alive. But DeVita describes being hampered by “bureaucracy and its attendant inertia” and by “regulations and research protocols” that stood in the way of more aggressive therapies (23). DeVita depicts Lee’s death, after more than a decade of considerable medical intervention, as a direct consequence not of his disease but of the medical establishment’s refusal to give DeVita access to a new drug,

1 Vincent DeVita co-wrote The Death of Cancer with his daughter Elizabeth DeVita-Raeburn, but the book is narrated in the first person from his perspective.

Interventions in Dying 387 abiraterone. Although initial studies had demonstrated this drug to be remarkably successful in patients with late-stage prostate cancer, current studies were being done only on patients with less advanced forms of the disease. So, De- Vita writes, instead of receiving this drug and gaining a new lease on life, Lee went into hospice and died within weeks. Exactly two years later, in September 2010, the drug company that manufactured abiraterone made it available to anyone who needed it, the medication having proven exceptionally effective in further clinical trials. DeVita terms what happened with Lee a “near miss,” and he uses his experience as proof that “we need a treatment to keep the patient going so he can reap the benefits of the next new thing that will come along” (31).2 Yet like many health professionals, DeVita downplays the impact of such aggressive treatment on the quality of the lives that are prolonged, and he does not adequately address what the individual patient might want and whether a physician can be too aggressive. DeVita declares that because of his efforts, his friend Lee enjoyed for more than a decade an “excellent quality of life with a nasty prostate tumor” (32). And to implore physicians not to give up on their patients, DeVita gives the convincing example of a patient he encountered early in his career, a teenage girl who had been given such a large dose of vin- cristine for her leukemia that the nerves to her respiratory muscles had been paralyzed. DeVita admits that he was “shocked that she was being kept alive,” and he was not alone; virtually everyone at the hospital where she had been admitted “thought that giving up on patients like her was the humane thing to do” (59). But when despite all predictions she pulled through and achieved complete remission from leukemia, DeVita describes himself as learning “never to give up on anyone” (59). Moreover, DeVita is understandably frustrated with physicians who refuse to treat people with advanced cancer who are desperate for treatment because doing so would be too much of a hassle, because they worry about being sued, or because they are intent on maximizing their incomes (26, 113). And certainly there are many patients such as DeVita’s friend Lee who will do anything to delay death and are not deterred by even the most life-altering side effects. But DeVita outright dismisses physician colleagues who are concerned with “what we were putting [patients] through” and who fear that their patients will suffer “severe side effects” from toxicity. Instead, he claims, “the truth is that a person facing imminent death has an entirely different perspective” (112–113).

2 What DeVita fails to mention is that patients treated with abiraterone lived on average only 3.9 months longer than they would have without the medication (Jauhar 2015).

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In fact, although many people facing imminent death are desperate for medical heroics and an aggressive physician such as DeVita is precisely whom they need, many others have an entirely different perspective. These latter individuals have little interest in extending their lives in the manner DeVita describes. What is startling about The Death of Cancer is its virtual silence regarding either palliative care or hospice care – the former is mentioned not at all and the latter only in relation to Lee.3 As cardiologist Sandeep Jauhar writes in his review of DeVita’s book, “Perhaps at some level DeVita should be applauded for not giving up on a patient, a friend. But he also has a certain narrow- minded focus that is perhaps no surprise. He is a general on the front lines of a war…. Still, aggressiveness doesn’t always serve patients in the best way” (2015). This is the very point made by hospice and palliative care physician Joanne Lynn: “It makes me shudder to think how often we caregivers inflict terrible suffering as we thoughtlessly pursue correction of a physiological abnormali- ty” (1993: 44).4 Remarkably, what prompts Lynn’s comment on the “thoughtless pursuit” of correction is not her use of a cutting-edge experimental treatment but instead a deceptively simple gastronomy tube she inserted into an octogenarian patient with Alzheimer’s-type dementia who had forgotten how to swallow. Lynn thought she was helping the patient. In contrast, his wife and caregiver considered Lynn’s tying this man to the bed a “deeply offensive abuse” (43). Lynn quickly realizes the “impropriety of intervention” in this case and notes that working with patients forces health professionals to “enlarge the

3 The one exception is DeVita’s observation that in 1945, the newly renamed American Cancer Society (formerly the American Society for the Control of Cancer) spent its limited resources on helping patients find the right doctors and “hospice-like resources” (2015: 126). Although palliative care and hospice care are often conflated, and both are focused on relieving symptoms and increasing the comfort of seriously ill patients, hospice care is for patients with a life expectancy measured in months. While patients receiving palliative care can also receive curative care, those receiving hospice care cannot. Palliative care has been demonstrated to improve both the quality and length of life. For a summary of recent progress see Ruder (2015). See also Khullar (2017a), who discusses both the increase in availability of palliative care in the United States overall (up 150 percent in the last decade), and the disparities that remain by race, income, geography, and type of disease. For instance, about one-third of people with cardiopulmonary failure die in the intensive care unit, compared with 13 percent of people with cancer and 9 percent of people with dementia. Furthermore, many palliative care programs in the United States are underfunded and understaffed. To date, most palliative care has been hospital-based, but home-based palliative care is making inroads (de Marco 2017). See also Livne, whose Values at the End of Life: The Logic of Palliative Care (2019) examines the tensions among financial considerations, emotional attachments, and moral arguments behind end-of-life decisions in the United States. 4 Lynn has published a dozen books and hundreds of articles on palliative and end-of-life care.

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Interventions in Dying 389 scope of what could count as optimal care” (44).5 In other words, Lynn – unlike DeVita and even Jauhar – does not equate “giving up” on extending a person’s life with “giving up” on the person.6 Instead, Lynn’s approach keeps people who are dying, and their desires, the central focus of her practice. Lynn acknowledges that healing has many configurations.7 She is part of what sociolo- gist Roi Livne (2019) terms “the new economy of dying,” an economic system grounded in the rejection of invasive and aggressive medical intervention and embrace of hospice and palliative treatment at the end of life. Primum non nocere. First, do no harm. This creed, likely originating in the Hippocratic corpus and adopted in many parts of the world, insists that medical professionals “consider possible harm to patients in every interaction and intervention.”8 These words are especially relevant today, with many developments in medical, surgical, and pharmaceutical treatments having the potential to increase human suffering, especially in the case of terminal conditions (Rowe and Kidd 2009: 3).9

5 Today, feeding tubes are used much less frequently for dementia patients than in the past, although in the United States rates for African Americans remain significantly higher than for white Americans. Notably, feeding tubes do not extend the lifespan of people with Al- zheimer’s disease (Span 2016a). Lynn also gives the anecdote of a patient who refused pain medication despite having erosive lesions over much of her body. She and other caregivers tried to convince the patient of the benefits of these medications, but their efforts were in vain. It turned out that the patient’s religious tradition, in which she believed strongly, condemned alcohol and narcotics, and that she identified her suffering with that of Jesus Christ. Listening to her patient, Lynn expands the scope of what can be considered “optimal” care, and she concludes that “sometimes even profound suffering is not an appropriate target for treatment” (1993: 44–45). 6 In his review of DeVita’s The Death of Cancer, Jauhar asks, “When is it O.K. to give up? When is it best to surrender?” He suggests that giving up on extending the patient’s life is giving up on the patient (2015). 7 See also Jessica Zitter’s Extreme Measures (2017) and Victoria Sweet’s Slow Medicine (2017). Zitter likens performing aggressive cpr on a man who has no hope of meaningful survival to having “assaulted a dead body” and compares aggressive treatment of the dying to placing them on “the end-of-life conveyor-belt” (2017: 6, 48). Sweet distinguishes between Slow Medi- cine and Fast Medicine. In Slow Medicine, the provider is “knowledgeable, thoughtful, and courteous, warm but not intimate, consistent, and reliable”; in Slow Medicine, the provider knows their patients so well that “when the time came [they] did not have to go to the bed- side of [their] now extremis patient to discuss [their] Advanced Life Directives” (2017: 58). At the other end of the spectrum is Fast Medicine, which can keep a “body alive almost indefi- nitely,” but makes it nearly impossible to acknowledge that a patient is “past the point of no return” (153). 8 The Hippocratic Oath includes the phrase “to abstain from doing harm,” while the phrase “first, do no harm” is found in Epidemics (ca. 410), part of the Hippocratic corpus (Rowe and Kidd 2009: 2). 9 Another challenge is providing appropriate follow-up care for survivors. Suleika Jaouad (2015), who was diagnosed with leukemia at age twenty-two and attained remission after

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Health professionals face tremendous professional, social, and media pressure to cure or at the very least extend life, the latter commonly understood to be a corollary of “do no harm.” Both they and their patients have eagerly em- braced new treatments, even if these treatments cannot cure but instead transform a previously deadly condition into one that is chronic and manageable. Yet some practices have been controversial. The public has grown concerned about the overuse of expensive tests, procedures, and devices; skyrock- eting drug treatments that offer outcomes only marginally better than existing protocols; and abuse of life-sustaining but death-prolonging medications, procedures, and technology (Kaufman 2015: 2). As Sharon R. Kaufman explains, one of today’s greatest quandaries is when, where, and how to draw the line between enough care and too much care – too much, that is, of the wrong type of care. Although almost unthinkable just a few decades ago, it now seems normal and necessary to employ exceptionally sophisticated medical treatments for people in the latter stages of terminal conditions as well as people in their late eighties, nineties, and even older who are grappling with multiple life-threatening conditions. Recent developments in medicine are regularly taken for granted, so much so that in many cases, it is easier simply to receive than to decline treatment, regardless of quality of life. Health professionals, together with patients and their families and close friends, are being pushed toward ever more intervention, regardless of patient desires (ibid.: 2, 13–14).10 Increasingly emphasis is on prolonging life, or some would say prolonging dying, rather than on alleviating suffering, promoting healing, and working toward wellbeing.

three and a half years of cancer treatment, writes about the lingering effects of the disease and its treatment: “On paper, I am better: I no longer have cancer, and with every passing day I’m getting stronger…. But off paper, I feel far from being a healthy 26-year-old woman.” She describes the “countless invisible imprints” of the disease, noting that what her friends and family could not have known was that “in some ways the hardest part of my cancer experience began once the cancer was gone.” And she laments the dearth of resources available for cancer survivors, many of whom need psychiatric care. Daniela Lamas addresses this phenomenon more broadly, commenting on how hospitals are slowly beginning to recognize that surviving critical illness frequently brings with it “multiple transi- tions,” and that there are “unintended consequences of lifesaving success” (2017: SR10). 10 In the essay “While I Was There” (2007), poet and philosopher Mark Nepo (1951–) acknowledges that he projected his own desires onto his eighty-eight-year-old grandmother, whose physicians were pushing open-heart surgery: “Though she is strong, there is significant risk in having such an operation at her age. Yet I’m afraid if she dies without trying, she will have fallen too…. It means everything to me that she not give up…. I fear my heart will fail if she gives up. I know this imposition is all mine” (66). His grandmother has the operation and lives for an additional six years, in Kingsbrook Medical Center in Brooklyn; a smile lights her face when he visits her, but she does not recognize him. He, on the other hand, feels “privileged to slip into my grandfather’s skin” (67).

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Interventions in Dying 391

Late twentieth- and early twenty-first-century literature from around the world has grappled with the ethics of medical innovations that either prolong dying, often in a misplaced 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 necessity of modulating expectations surrounding medical interventions, calling attention to the importance of person-focused care that prioritizes the needs and desires of the person who is near death, and for increased understanding of the difficulties faced by health professionals trained and expected to cure people and prolong life at all costs. This chapter is divided into two sections: “Easing Death,” followed by “Co- nundrums of Cure.” The first section analyzes four works of global literature on the patient’s right to refuse medical intervention: Chinese writer Li Shijiang’s (李师江, 1974–) short story “Yiyuan” (医院, The Hospital, 2006), British drama- tist Brian Clark’s (1932–) Whose Life Is It Anyway? (1978), American physician Dr. Terrence Holt’s memoir Internal Medicine: A Doctor’s Story (2014), and Japa- nese physician Dr. Setoue Kenjirō’s (瀬戸上健二郎, 1941–) memoir Dr. Setoue no ritō shinryōjo nikki (Dr. 瀬戸上の離島診療所日記, Dr. Setoue’s Outlying Is- lands Clinic Diary, 2006). Setoue’s, Holt’s, and Clark’s narratives probe the struggles of physicians between their instinct to prolong life and their desire to accommodate their patients, even those who want to ease into death, while Li Shijiang’s narrative satirizes excessive medical intervention and the obsequi- ousness demanded by some health professionals. “Easing Death” next discusses the highly controversial anonymous essay “It’s Over, Debbie” (1988), published in the Journal of the American Medical Association in part to encourage national conversations on euthanasia both among physicians and in the public sphere. I then turn to two short stories that interrogate the terminal patient’s right to life-ending care and in particular euthanasia – American physician Dr. Richard Selzer’s (1928–2016) short story “Mercy” (1980) and Japanese physician Dr. Nagi Keishi’s (南木佳士, 1951–) short story “Kihada ni furete” (木肌に触れて, Touching the Bark of Trees, 1996). These narratives contrast patients who expect their physicians to help them die with physicians who have severe misgivings about so doing. Wrap- ping up this section on life-ending care are comments on American physician Dr. Thomas Graboys’s (1945–2015) memoir Life in the Balance (2008), which relates his thoughts concerning euthanasia from the dual perspective of the physician and the patient. The works of global literature examined in “Easing Death” primarily concern the conflicting perspectives of patients and health professionals regarding care at the end of life. Families and close friends naturally also play a central role in many end-of-life decisions, and I focus on these dynamics in Chapter 9.

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Following “Easing Death,” the present chapter’s second section, “Conun- drums of Cure,” focuses on three novels – two of them medical thrillers – that grapple with the lethality of certain medical cures and their paradoxical destruction directly and indirectly, deliberately and inadvertently, of both human beings and the nonhuman. Japanese writer Ariyoshi Sawako’s (有吉佐和子, 1931–1984) Hanaoka Seishū no tsuma (華岡青洲の妻, The Doctor’s Wife, lit. The Wife of Hanaoka Seishū, 1967) and Indian writer Amitav Ghosh’s (1956–) The Calcutta Chromosome: A Novel of Fevers, Delirium and Discovery (1996) are both concerned with the human and nonhuman sacrifices involved in developing medications that cure or facilitate cure, such as anesthesia and antima- larials, respectively. In contrast, Chinese writer Wang Jinkang’s (王晋康, 1948–) novel Siji konghuang (四级恐慌, Level-Four Panic, 2015) centers on the precariousness of a world cured but not eradicated of smallpox. Together, the works of global literature discussed in this chapter reveal the perils of excessive, frequently unwanted medical intervention that is either too lethal or not lethal enough for patients at the end of life who want to die. These narratives also point to the near inevitability of such misplaced intervention, so long as societies, in their preoccupation with curing and extending life at all costs, fail to acknowledge the importance of creating spaces for healing and wellbeing that are not dependent on extending life, much less achieving cure. As discussed earlier in Part 2, there is a difference between curing and healing: curing is to remove disease while healing is to enable a person’s physical, mental, and social wellbeing (Cassell 2013: xiii). Although in many cases curing is integral to healing, healing need not depend on curing.11 Finally, the works of literature examined in this chapter are sober remind- ers of the tremendous disparities in health and healthcare that continue to plague nations across the globe. An excess of certain types of interventions puts people in wealthier societies or at least people of great financial means at risk of being subjected to painful experiments and a prolonged death, one

11 Nor need healing mean repudiating curative care. In her memoir on living with ovarian cancer, Susan Gubar urges health professionals to consider curative care and palliative care (which Gubar is using in this context to refer to hospice care) as establishing a spectrum rather than as being diametrically opposed (2012: 246). Gubar also addresses her changing desires regarding medical intervention: whereas initially she had thought she would forgo “barbaric” treatments, relieved to have the option to resort “to some sort of pain management that hastened the dying process,” she found herself repeatedly agree- ing to interventions with brutal side effects that nevertheless have kept her alive. She asks, “Why, instead of accepting my fate, did I consent to yet another trial involving precisely the chemicals that had made my existence a life-in-death?” believing that part of it has to do with the polarizing divide that has been created between hospice and palliative care (4, 8, 245).

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Interventions in Dying 393 parodied by such writers as Kurt Vonnegut (1922–2007) in the short play “For- titude” (1968).12 Yet the persistence of global inequality means that the majority of the world’s population faces the opposite challenge: limited access to advanced or even more basic medical interventions that would allow individuals to live longer, healthier lives, and limited access to hospice, palliative, and other supportive care.13 In these communities, even more than in their

12 “Fortitude” describes the visit of Dr. Elbert Little to the laboratory of Dr. Norbert Franken- stein. Frankenstein has a single patient, Silvia Lovejoy, a billionaire’s widow who at age one hundred and after dozens of operations, is “no longer anything but a head connected to pipes and wires coming up through the floor” (2011: 758). Sylvia recognizes that in some ways she has been fortunate. Speaking about a “self-pitying letter” she wrote to a young doctor, she knows that “he could tell me about the real suffering going on out there in the world, about people who don’t know where the next meal is coming from, about people so poor they’ve never been to a doctor in their whole lives. And to think of all the help I’ve had – all the tender, loving care, all the latest wonders science has to offer” (761). At the same time, Lovejoy has asked her beautician, Gloria, to bring her a pistol so that she can shoot herself. Earlier, she had written Little, asking him to bring her some cyanide, “if you’re a doctor with any heart at all” (763). But Frankenstein has designed her pros- thetic arms so that she cannot point a gun at herself or drink poison, “no matter how she tries” (766). Lovejoy clearly wants to die. After Gloria brings her a gun, she tries repeatedly to shoot herself, and when she fails, she asks in desperation, “How much longer must I live like this?” to which Frankenstein responds, “At least five hundred years” (770). He then informs her that everything to which she is attached can support two human beings, so after his death, the two will be united forever. And so Lovejoy empties the revolver into him, and the two become united if not for eternity, then at minimum for many centuries. Other writers also satirize the excesses to which the wealthy will go to ensure immediate access to the world’s top physicians. See, for instance, Asian American Kevin Kwan’s (1973–) Rich People Problems (2017), where in the first chapter the narrator identifies as “Problem no. 2”: “The twenty-four-hour on-call personal physician that you have on a million-dollar annual retainer is busy attending to another [vvip] patient,” a problem that is solved by calling the president of Singapore and having him order the pilots of the Singapore Airlines flight headed for Sydney on which this physician is a passenger to turn around and return to Singapore Changi Airport. The narrator remarks that “only the Shangs had the kind of influence to turn around a Singapore Airlines flight with four hundred forty passengers onboard” (3–7). For an exposé of recent developments in con- cierge medicine for the extraordinarily wealthy see Schwartz (2017). 13 To give one example, opioids and other pain relief are in very short supply in many parts of the world, even though it would cost only $145 million annually to treat the entire globe for end-of-life suffering; as McNeil (2017b) discusses, the United States’ opioid epidemic has had a “chilling effect on developing countries,” with other governments determined to avoid abuse of these drugs at the expense of the wellbeing of those at the end of life. Uganda provides a notable exception. Another of many possible examples of sharp disparities in access is the Indian city of Hyderabad, where most cancer patients are diagnosed late in the course of their disease, palliative care is rare, and hospice beds almost non-existent (Hotchkiss 2017).

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394 Chapter 7 wealthier counterparts, suffering is exacerbated, healing impeded, and wellbeing an afterthought at best.

1 Easing Death

Global literature exposes medical treatments for some conditions as causing more suffering than the conditions themselves. As British-Bangladeshi writer Tahmima Anam’s (তাহমিমা আনাম, 1975–) English-language novel The Good Mus- lim (2011) declares regarding the protagonist’s mother, Rehana, who has stage four metastatic uterine cancer and undergoes surgery to remove a tumor in her uterus, “The operation was only the beginning. Rehana would need chemotherapy, powerful poisons that would kill the cancer. But they might kill her too. It was an uncertain science, the treatment often worse than the disease” (2011: 131). Rehana survives the operation and the treatment, despite some close calls. Eventually she is declared cured. Even though while undergoing chemotherapy Rehana had been “as frail as a bird in its nest, a trembling, bruise-breasted robin,” The Good Muslim describes the cancer ultimately as having “fled out of her, like birds from a tree when a shot is fired” (218). Not everyone is so fortunate, and some of the largest impediments to person- focused care – care that is respectful, compassionate, and empathic; care that promotes healing and increases wellbeing – are the conflicting beliefs of patients and physicians about appropriate care at the end of life. In many wealthier countries, end-of-life care has become disturbingly hospital-centric, with more than half of Canadian and Belgian cancer patients over the age of sixty- five dying in acute care hospitals in 2010.14 In Japan, nearly 80 percent of all deaths occur in hospitals, up from 10 percent in the late 1940s (Ikezaki and Ikegami 2011; Long 2013: 52).15 As Haider Warraich observes, even though surveys conducted around the world have conclusively shown that people would prefer to die at home, “The vast majority of people [in postindustrial societies] die in places where inert tones provide the palette, disinfectant the aroma, alarm bells the soundtrack, and open-back johnnies the wardrobe. At no time in our history has death been farther from home than in the last few decades….

14 The numbers for Norway (44.7 percent of cancer patients), England (41.7 percent), and Germany (38.3 percent) were also high, with those for the United States (22.2 percent) and the Netherlands (29.4 percent) lower but still concerning, particularly given that 40.3 percent of American patients had an intensive care unit admission in their last six months of life, as compared with less than 18 percent in the other nations examined (Bekelman 2016). 15 In contrast, in China fewer than 20 percent of people die in hospitals (Warraich 2017: 45).

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Dying in one’s own bed is a rare privilege, an outlier in the calculus of modern dying” (2017: 40–46). Not surprisingly, late twentieth-century debates about institutionalized death rarely included patients and their wishes, a phenomenon Warraich describes as having become “the norm in medicine” (ibid.: 46). To be sure, as Susan Long and others have pointed out, “the reality of home is often not the same as the metaphor,” much less the ideal (2013: 59). Long’s fieldwork in rural and urban Japan revealed how dying at home can become a tremendous burden on the time, financial resources, and emotions of the dying person’s family, assuming there is a family, and can be detrimental to the wellbeing of the person who is dying. Hospitals and other institutions could create a more “home-like” experience for the dying individual (ibid.: 59–61).16 But recent Organization for Economic Cooperation and Development surveys show that more than 80 percent of Japanese prefer to die in the hospital (“Dying at Home” 2017). It is vital to provide people at the end of life with legitimate choices, including the choice to leave the decisions to others, whether loved ones or healthcare personnel. It is not just where one dies but how. As Warraich rightly notes, “Death itself is more harrowing and prolonged today than it has ever been before” (2017: 56). In Japan, there is an enduring custom of praying at Buddhist temples for sudden death (pokkuri, ぽっくり), the spirit of which is encapsulated by the poet Rangai’s (嵐外, 1770–1845) haiku “Fuji no yama / minagara shitaki / tonshi kana” (I want to die a sudden death, with my eyes fixed on Mount Fuji), com- posed shortly before his death in 1845 at age seventy-five (Long 2005: 55). And while some Japanese instead hope for rōsui (老衰, lit. the culmination of the gradual decline of old age), the generally shared ideal is yasuraka ni shinu (安らかに死ぬ, dying peacefully, calmly, comfortably), which refers not only to physical comfort but also to spiritual and psychological calm (ibid.: 58–59).17 But in Japan, as in many societies, the ideal has often been far from the reality. As Japanese physician and hospice director Yamazaki Fumio (山崎章郎, 1947–) brings to the fore in the exposé Byōin de shinu to iu koto (病院で死ぬということ,

16 Long describes how in Japan, hospitals tend to move imminently dying people to a more private space, giving them more personal, “jibun-rashii” (自分らしい, lit. live their own way) space, and some hospices provide a tatami room where the dying can sleep on futon next to their family members, in addition to creating a more home-like environment (2013). 17 Hospice had a slower start in Japan than in the United States and parts of Europe. The title of Kawagoe Kō’s memoir Yasuraka na shi: Gan to no tatakai – zaitaku no kiroku (安らかな死:癌との戦い – 在宅の記録; Peaceful Death: Record of Fighting against Cancer at Home, 1994), on the death of Tasaka Shōko (田坂祥子, 1943–1992), is one of several works in 1990s Japan to advocate for the gentler death made possible by hospice care (Kawagoe 1994).

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Dying in a Hospital, 1990), failing to inform terminal patients of their diagnoses renders them unable to make informed decisions and prepare for their death. These individuals are at the mercy of health professionals who think only in terms of extending patients’ lives as long as possible and not about what those under their care want for their final days. An appeal to transform end-of-life care, Dying in a Hospital opens with the stories of five terminal cancer patients and exposes the needless suffering to which they were subjected in Japanese hospitals in the 1980s, anguish caused not by their cancer but instead by “ignorance, apathy [and] prejudice” (Clare- mont 1996: viii). Yamazaki depicts patients in unbearable pain desperate to know what is happening to them but being met with silence or outright deception, and health professionals who treat their patients as though they were in- animate objects (ベッドの上の物体). Dying in a Hospital explains, “Most medical professionals and families believe it a taboo [タブー] to tell the patient the truth. Even when death is certain, it is expected that great exertion will continue to be made to stretch out the patient’s life even another minute, another second” (1990: 90). Yamazaki admits that he too agreed with this policy until 1983, when he read Swiss American psychoanalyst Elizabeth Kübler-Ross’s (1926–2004) groundbreaking and globally consumed On Death and Dying (1969).18 In a section titled “A Book That Changed My Fate” (運命を変えた一冊の本), Yamazaki describes being exceptionally moved upon encountering Kübler-Ross’s argument early in her narrative that “if a patient is allowed to terminate his life in a familiar and beloved environment, it requires less adjust- ment for him. His own family knows him well enough to replace a sedative with a glass of his favorite wine; or the smell of a home-cooked soup may give him the appetite to sip a few spoons of fluid, which, I think is still more enjoy- able than an infusion” (2014: 6).19 After citing Kübler-Ross, Yamazaki remarks, “This paragraph is a biting critique [痛烈な非難] of the medical practice of stretching out the lives of dying patients even another minute, another second, a practice I had followed as a matter of course” (1990: 97). Yamazaki condemns the practice of resuscitating terminal patients who are clearly in their last moments of life:

In the middle of resuscitation and fighting against death, who are the real heroes of the struggle? It is of course supposed to be the patient on the

18 On Death and Dying has been translated into dozens of languages. 19 Kübler-Ross’s larger point, strengthened by the passages in On Death and Dying preceding and following the lines cited by Yamazaki, is that death should be approached not as a taboo, but instead as a natural part of life (1990: 6).

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verge of death. Yet in the resuscitation effort, the ones who are fighting against death with all their might are only the doctors and nurses. The patient in their dying hour has already finished fighting, and at long last, after a long struggle, is about to enter a world of deep tranquility. So physicians who resuscitate a patient whose death is clearly expected are doing nothing but forcibly obstructing [強引に妨げているだけでしかない] the patient from entering the world of tranquility. (101–102)

Yamazaki urges health professionals to recognize that such resuscitations are for their own benefit, not the patient’s, and that going forward, they need to be more concerned with improving conditions for patients at the end of life, to help ensure that the time these individuals have remaining is as meaningful as possible. He also makes a strong case for sharing with patients their diagnosis, especially those who ask for this information, revealing how for many people silence and deception simply increase suffering. And in the second half of Dy- ing in a Hospital, Yamazaki tells the uplifting stories of five terminal patients whose wishes were respected and whose last days were made as peaceful as possible, strongly advocating that health professionals enable “natural death filled with dignity” (自然で尊厳に満ちた死, 164), whatever that means to the individual patient.20

20 As Meghan O’Rourke writes in The Long Goodbye, “I didn’t actually feel it was undignified for my mother’s body to fail – that was the human condition…. The real indignity, it seemed, was dying where no one cared for you the way your family did, dying where it was hard for your whole family to be with you and where excessive measures might be taken to keep you alive past a moment that called for letting go. I didn’t want that for my mother. I wanted her to be able to go home. I didn’t want to pretend she wasn’t going to die” (2011: 96–97). O’Rourke’s mother died at age fifty-five from metastatic colorectal cancer. An important corollary to Yamazaki’s Dying in a Hospital is bestselling Japanese writer Abé Kōbō’s novel Kangarū nōto (カンガルー・ノート, Kangaroo Notebook, 1991), published just a year later, which also provides a disturbing picture of hospital care in 1980s Japan. Satirizing institutionalized medicine, Kangaroo Notebook features a man who awakens one morning to find radish sprouts growing out of his legs. He ends up traveling through the underworld on his hospital bed, encountering ghostlike children, blood- sucking nurses, and a karate instructor-chiropractor-euthanist (Urvil 2011: 123). Near the end of the novel, the protagonist has a conversation with a doctor about an elderly man who appears to be suffering and on the verge of death. The protagonist asks whether “death with dignity” (尊厳死, songenshi) would be appropriate, to which the physician responds that he must be thinking of “euthanasia” (安楽死, anrakushi), which he believes to be “a type of murder” rather than a medical issue (162). But the protagonist and his companions are not convinced. Listening to the dying man continue to moan, they argue that putting him out of his suffering would not be murder, and that euthanasia is the humane solution. The protagonist then thinks to himself that if the radish sprouts continue to infiltrate his body, euthanasia would be his only choice. The group ultimately

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Dying in a Hospital quickly became a bestseller in Japan, where it inspired a number of films – including actor, screenwriter, and director Itami Jūzō’s (伊丹十三, 1933–1997) Daibyōnin (大病人, Seriously Ill Patient, 1993) and Ichikawa Jun’s (市川準, 1948–2008) Byōin de shinu to iu koto (病院で死ぬということ, Dying in a Hospital, 1993) – which likewise condemned the deceptions and brutality of end-of-life treatment in late twentieth-century Japan.21 These films, together with Yamazaki’s narrative, triggered increased discussion of end-of-life care and led to a gradual increase in palliative care units and hospices in Japan. The situation more than a quarter-century later is not as dire, but as recent surveys reveal, there is considerable room for improvement in Japan and around the world.22 In recent years, Yamazaki himself has moved from promoting hospice to promoting home care, in part because hospice in Japan has taken place in an institutional setting and has been limited largely to patients in the final stages of cancer (“Hosupisu-i kara zaitaku-i e” 2011).23

kills the dying man, arguing that he is already in hell. Abé Kōbō’s novel is far from an endorsement of euthanasia. But it does reveal patients as being at the mercy of health professionals who care not at all for their comfort, much less wellbeing, even at their most vulnerable. And it depicts a situation so desperate that death at the hands of fellow patients is the only option available. Also notable about the elderly man who is killed near the end of Kangaroo Notebook is the absence of family, which puts him even more at the mercy of maniacal hospital staff and well-meaning but untrained patients. The absence of family is particularly relevant in a society such as Japan’s, where the family plays a more prominent role in end-of-life decisions than in many other cultures. For more on this phenomenon see Long (2005: 125). 21 Itami Jūzō is best known for the film Tanpopo (タンポポ, 1985). He was the brother-in- law of Nobel Prize-winning writer Ōe Kenzaburō (大江健三郎, 1935–), whose work is discussed in Part 3. Seriously Ill Patient features an actor and director making a film about a husband and wife who are dying of cancer who himself begins vomiting blood. He is told that he has an ulcer, when in fact he has terminal cancer. Although his physician and wife continue to reassure him that he is suffering from an ulcer, he suspects that he in fact has cancer and attempts suicide. Ichikawa’s film Dying in a Hospital is based on Yamaza- ki’s narrative. 22 See, for instance, Shimizu et al. (2016). In 2015 Japanese launched The End-of-Life Care Association, which is “at the forefront of initiatives to help the elderly and those suffering from terminal illnesses come to terms with their approaching end.” This association likewise assists family members and other caregivers in better addressing the dying person’s emotional and psychological needs (Iizuka 2017). 23 Benedict (2018) discusses spiritual care in the Japanese hospice, a relatively neglected area of study. Also worthy of note are initiatives such as Maggie’s Tokyo, a branch of Mag- gie’s Centres, which according to their website exist “for anyone with any type of cancer and their families and friends, offering the practical, emotional and social support that people with cancer need.” Maggie’s Tokyo, which is open to both Japanese and non- Japanese, helps patients and those supporting them “accept the changes in lifestyle and

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Although the United States is also one of many countries where care at the end of life is less traumatic now than it was several decades ago, at least by some measures (Emanuel and Bekelman 2016), stories continue to abound there and elsewhere concerning undesired medical interventions in a patient’s last months, weeks, and days that increase suffering exponentially. American science writer and medical student Barbara Moran’s story about the agonizing death of her mother is typical. Moran’s mother had a chronic liver condition that had long been under control. But suddenly her liver failed, then her kidneys, and then her lungs. Moran’s mother spent four months in the intensive care unit, where she was on twenty-four-hour dialysis, had a breathing tube down her throat, and a feeding tube up her nose; hating these tubes, she con- tinually attempted to pull them out, so the hospital tied her hands to the bed.24 Moran argues that her mother’s death “was so grisly that I vowed to help change the way people die in America…. [My mother’s death] exposes so many flaws in American medicine: our lack of palliative care, our unwillingness to face end-of-life decisions, our inability to stop the procedures and just let go. Her death was a system failure, and as a doctor I don’t know how I alone can fix the system. I only know that I will try” (2016).25 Nearly forty-five years ago, Justice Robert Muir, who presided over the 1975 case of Karen Ann Quinlan (1954–1985) in New Jersey Superior Court, declared without irony that “a patient is placed, or places himself, in the care of a physician with the expectation that [the physician] will do everything in his power, everything that is known to modern medicine, to protect the patient’s life. He will do all within his human power to favor life against death” (Warraich 2017: 77–78).26 Muir wrote this despite the fact that two years earlier, the American

relationships that accompany cancer” and empowers them to “move forward”; cancer specialists assist patients and their families in making informed decisions (Makino 2017). 24 Close to 60 percent of elderly dialysis patients die within a year of beginning dialysis. Questions have been raised as to whether their quality of life would have been better had they instead received care to keep them more comfortable and in some cases even prolong their lives (Span 2015). 25 Nina Bernstein summarizes the 2014 report “Dying in America,” which calls for a fundamental transformation of end-of-life care in the United States. She cites health experts as arguing that “if the wasteful medical spending [on end-of-life care] could be redirected, it could pay for all the social supports and services actually needed by today’s fragile elders and their families” (2014: A24). 26 Quinlan’s parents filed suit to disconnect their daughter, who was in a persistent vegetative state, from her respirator, since it caused her pain. In the end, they won their case. The Quinlan case was followed by the case of Nancy Cruzan (1957–1990). Cruzan was in a persistent vegetative state following a 1983 automobile accident, and in 1988 her parents fought to take out her feeding tube; Cruzan died twelve days after the tube was removed. In contrast, in another case of a women in a persistent vegetative state that made headlines,

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Medical Association had published a statement asserting that the decision of whether to prolong life when there was little hope of recovery should be made by the patient or, if the patient could not, by the patient’s immediate family (Warraich 2017: 82). Muir’s comments reflect the belief of many even today that the duty of physicians is to prolong life at all costs. But so doing is often not in the best interests of the patient, much less what the patient desires. As cited in the introduction, in his bestselling Being Mortal, Atul Gawande argues for the importance of ensuring not survival, but wellbeing. In this context, Gawande makes a strong case for recognizing the individual patient’s priorities, for acknowledging that increasing the number of days alive is not of primary importance to everyone: “Our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer” (2014a: 243). In this spirit, Gawande and his Harvard colleague Dr. Susan Block have developed a “serious-illness care program” that is grounded in “patient-centered conversations about serious- illness care goals” (Cameron 2015). Likewise, their colleague Dr. Joanne Wolfe urges physicians “to learn how to compassionately, effectively, and honestly guide patients through their final days” with just as much rigor as if they were engaging with the latest medical interventions. The point is to enable patients to voice what is most important to them, transforming the focus of end-of-life conversations from death to life (ibid.).27 Essential too, many declare, is for health professionals to abide by the wishes of their patients, whether this

the parents of Terri Schiavo (1963–2005) fought to keep her feeding tube in place, while her husband fought to have it removed; the feeding tube was removed in 2005, after she had spent 15 years on life support. And in May 2019, a French court ruled that Vincent Lambert (1976–2019), who had been in a persistent vegetative state since a 2008 accident, be put back on life support; Lambert’s wife maintained that he had told her that he did not want to be kept alive in a vegetative state, whereas his parents insisted that he was a disabled person who must be kept on life support. But in June 2019 a higher court struck down this ruling, his feeding tubes were removed, he was placed under heavy sedation, and he passed away shortly thereafter (Breeden). Complicating matters is that people who are minimally conscious are frequently mis- diagnosed as being in a vegetative state and so are denied access to care (Fins 2017). Recent advances in neurotechnology have some specialists imagining a future where brain-computer interfaces enable minimally conscious patients to “take online courses, type e-mails, hold conversations, and express their innermost feelings” (Owen 2017: 247–248). 27 Vital as well is training patients and their families. David Cameron (2015) describes the efforts of Harvard physician Angelo Volandes and his colleagues to create nearly one hundred videos in ten languages that advise patients how to explore “goals of care” with their physicians. These videos also help patients understand many of the aggressive medical interventions about which they or their families will be asked to make decisions.

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Interventions in Dying 401 means doing everything to extend their lives or helping them ease into death. Oncology nurse Theresa Brown (2014) criticizes the oncologist and especially primary care physician of one of her patients for pushing into rehabilitation an individual whose relapsed lymphoma had become “medically unstoppable” rather than bringing in a palliative care team to ease his transition to death: “Every patient deserves care on [their] own terms, for each patient’s life, and death, is [their] own.”28 Patients and their advocates have become so appalled by the “intentional infliction of emotional distress” that occurs at the end of life that they have begun filing “wrongful-life” lawsuits, arguing for an individual’s right to refuse aggressive medical interventions that would only prolong dying (Span 2017b). Although courts have in the past been unreceptive to such cases, they are increasingly accepting the possibility that “unwanted life is also a harm” (ibid.).29

28 See also Span (2017b). 29 Cases of children with terminal conditions are particularly complicated. Teenagers and young adults with life-threatening diseases are increasingly being given the opportunity to discuss their end-of-life preferences (Hoffman 2015). Tackling these issues is children’s literature such as Dan Gemeinhart’s The Honest Truth (2015) and Nikki Loftin’s Wish Girl (2014), both of which feature children attempting to assert autonomy over their cancer treatment. In Wish Girl, the first-person narrator, Peter, meets a girl, Annie, who fears that her upcoming cancer treatment will damage both her body and her mind: “I may not be able to run ever again. Or read. Or even draw. Sometimes it affects memory, too. I won’t exactly … be me anymore. Not like I am now” (2014: 52). Later in the novel, Peter asks his mother whether if he had cancer she would give him a voice in his treatment; she is very clear that she would not, that the choice is hers: “No! That’s a decision an adult has to make. You can’t understand when you’re a child. There’s nothing I wouldn’t do to keep my kids alive and healthy – nothing” (176). Novels written for adults also focus on the choices available to children facing medical challenges. Providing one perspective is American writer Jodi Picoult’s (1966–) My Sister’s Keeper (2004), which features a thirteen-year-old girl, Anna, whose older sister, Kate, is dying from leukemia and whose parents had expected Anna to give Kate one of her kidneys. Anna wins the suit against her parents for medical emancipation only to be rendered brain-dead in a traffic accident almost immediately thereafter. Her kidney is given to Kate. In general, neither Kate’s nor Anna’s physicians take seriously the wishes of their young patients. Even as many physicians are not comfortable discussing palliative care with their patients, they frequently choose this option themselves. In the aptly titled essay “How Doc- tors Die: It’s Not Like the Rest of Us, but It Should Be” (2011), Ken Murray describes his mentor Charlie, an orthopedist diagnosed with pancreatic cancer, who decided to forgo chemotherapy, radiation, and surgical treatment and instead focused on his family for the remaining few months of his life. Murray observes that Charlie is typical of physicians. Although having unparalleled access to the most advanced life-sustaining treatments, they also know all too well the consequences of these treatments, and the vast majority choose to die peacefully, at home, with minimal intervention. See as well the Showtime drama The Affair, where in season 4 Vikram Ullah, a prominent surgeon, learns that he

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But even more controversial have been calls for health professionals to spare patients not simply aggressive treatment but also, when requested, nutrition and hydration. vsed (voluntarily stopping eating and drinking) is already “a lawful way to hasten death for competent adults who find life with a progressive diseases unendurable”; with appropriate oral and palliative care, it can be a “comfortable way to die” (Span 2015). More complicated is the use of vsed in dementia patients, as older adults are beginning to see withholding of nutrition and hydration as more of an option not only should they become terminally ill but also should they develop Alzheimer’s disease or another form of dementia. Yet in a recent court case in British Columbia, a judge ruled that although the advance directive of a patient with advanced Alzheimer’s disease specified “no nourishment or liquids” if she became incapacitated, her feed- ings in the care facility where she lived should continue “because she swallows food placed in her mouth.” Since swallowing is an automatic reflex, this ruling suggests that there are no means by which people can ensure that should they pass a certain point in their dementia, food and water would be withdrawn (ibid.).30

has stage 4 pancreatic cancer and decides to forego treatment, arguing, “There is no real treatment … no hope. I am going to die.” He acknowledges that “I spent my entire career giving false hope to my patients,” but he himself cannot be swayed. 30 Paula Span (2017b) also gives the example of Jerome Medalie, a Massachusetts resident whose advance directive declares that if he develops dementia, he refuses “ordinary means of nutrition and hydration.” For years he has made clear to his family that should he develop dementia, no one is to try to keep him alive by spoon-feeding him or giving him liquids. Yet Span reports speaking with one physician who has met Medalie and read his directive and admitted that if she were to encounter a bedridden Medalie suffering from advanced dementia, she nevertheless “would not feel comfortable not gently offering him at least a sip of water and a spoonful of ice cream.” Here the physician shows little respect for the patient’s wishes, her comfort trumping his. See also JoNel Aleccia’s (2017) discussion of Oregon resident Bill Harris, whose wife of nearly forty years was diagnosed with early onset Alzheimer’s disease in 2009. Although she signed an advance directive to prevent her life from being prolonged after her dementia became severe, and her family members all agree that she would not want to be kept alive, because her directive does not specifically mention spoon-feeding and because she opens her mouth and swallows when food is offered to her, the courts have ruled that state law “mandates that she continue to receive help.” Harris, on the other hand, believes that his wife’s opening her mouth is a reflex and that the court decision “basically condemned Nora to the full extent of the Alzheimer’s disease…. They gave her no exit out of this situation.” Many see a need for dementia-specific advance directives (Span 2018b). Cf. American actress Kate Mulgrew’s (1955–) memoir How to Forget (2019), which describes how her mother, who had Alzheimer’s disease, one day “snapped her teeth together and shut her mouth, tight. Her intention was unmistakable. She would take no more nourishment” (2019: 312). Kate, who in the early months of her mother’s diagnosis

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Most deeply divisive have been the debates surrounding euthanasia and physician-assisted death, practices that have been contested since ancient times.31 Euthanasia – from the Greek eu and thanatos – literally means “good death” and refers in general to “the intentional killing of one person by another, usually to relieve suffering” (Heyse-Moore 2009: 119).32 The distinction is frequently made between voluntary and involuntary euthanasia, the former involving an ill person voluntarily asking another individual to end their life to relieve suffering, and the latter indicating the taking of a life without consent, either because the person cannot express their wishes (e.g., they have dementia, are unconscious, or are not mentally capable because of age or disability) or because the person refused or was not consulted in the first place.33 Another common distinction is between active and passive euthanasia, the former referring to a person actively bringing about the death of another (e.g., by lethal injection), and the latter to withholding or withdrawing treatment (ibid.). Fi- nally, the term indirect euthanasia is often used to refer to providing treatment (e.g., to reduce pain) that has the side effect of hastening a person’s death.34 For purposes of clarity, unless otherwise specified, I follow the guidelines of the Mayo Clinic and use the term euthanasia to refer to a physician intentionally

had refused her mother’s request for pills with which to end her life, leans in and whispers to her mother that she understands, and just as the family did not force Kate’s father into treatment when he was diagnosed with cancer, so to do they honor the request of Kate’s mother’s to die. 31 Ezekiel Emanuel (1994) summarizes debates on euthanasia in the United States and Brit- ain while also mentioning earlier arguments for and against this practice in other parts of the world. Like many historians of medicine, Emanuel points out that euthanasia was widely accepted in ancient Greece and Rome; physicians of the Hippocratic school were the exception. Frequently cited as well in histories of euthanasia is Renaissance English humanist Thomas More’s (1478–1535) Utopia (1516), which describes the ideal hospital as a place where everything is done to cure those who can be cured, and to mitigate the pain of those who cannot be cured, but “if the disease is not only incurable but excruciatingly and constantly painful,” then the person is urged to liberate themselves from suffering, either by starvation or opium. No one is forced to do this, and those who choose to stay alive are given the best care possible (2011: 71). For more on euthanasia in Japan see Long (2005: 194–204). 32 The term euthanasia also is used to refer to taking the life of a terminally ill nonhuman animal. 33 Some distinguish between non-voluntary and involuntary euthanasia, the former referring to euthanasia on individuals who cannot consent and the latter to euthanasia for individuals who could have consented but have not, either because they were not consulted or because they refused. See bbc (2014). 34 See ibid. Indirect euthanasia is similar to palliative/terminal sedation, the difference generally being that in indirect euthanasia, an earlier death is more certain. Indirect euthanasia has also been referred to as double-effect euthanasia.

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404 Chapter 7 ending a terminal patient’s life at the patient’s request, that is, voluntary, active euthanasia (Olsen et al. 2010: 949).35 In contrast, physician-assisted death – also known as physician aid in dying, patient administered hastened death, death with dignity, and physician-assisted suicide – refers to a terminally ill patient who meets a number of criteria self-administering, at a time of their choosing, a lethal dose of medication prescribed or supplied by a physician (Hastings Center, n.d.).36 Some perceive an ethical chasm between physician-assisted death and euthanasia, while others believe the two are nearly equivalent.37 Euthanasia is prohibited in the United States, but by October 2019, 22 percent of Americans lived in jurisdictions where they could legally end their lives if they had a terminal condition and met certain requirements, including being mentally competent and physically able to administer the prescribed medications (Span 2019). (Span 2017b).38 Other nations currently sanctioning forms of physician-assisted dying include Belgium, Canada, Colombia, Luxembourg, the Netherlands, and

35 Molly Olsen et al. (2010) reprint the Mayo Clinic table on “End-of-Life Decision Making and Respective Cause of Death, Intention of Intervention, and Legality of Treatments,” which gives five causes of death: withhold life-sustaining treatment; withdraw life- sustaining treatment; palliative sedation and analgesia; physician-assisted suicide; and euthanasia. 36 Proponents of physician-assisted death often avoid the term suicide, given its negative connotations. See, for instance, Susan Gubar (2012: 226). 37 Gorsuch and others have argued that this is a distinction without a difference (2006: 6), while Warraich claims there to be a “crucial difference” – euthanasia involves the physician committing the act that leads to the death of the patient, while in a physician- assisted death the physician provides patients with the means to commit the act (2017: 231). Warraich and Gorsuch both summarize the history of euthanasia in the West, which dates to the ancient Greeks and was proscribed in the Hippocratic Oath. See also Dowbig- gin (2005). Long describes the ambiguity of the word anrakushi (安楽死) in Japan. If a patient says they would prefer anrakushi, it is not clear whether the patient means they want someone to perform active euthanasia (積極的安楽死, sekkyokuteki anrakushi) or to be allowed to die without additional treatment (消極的安楽死, shōkyokuteki anrakushi, passive euthanasia), or with terminal/palliative sedation (2005: 195). 38 Legally, but not easily. Span (2016b) outlines the various requirements, procedures, and roadblocks to physician-assisted dying, despite the fact that the number of deaths involving aid in dying remains very low. See also Span 2019. In 1997, Oregon became the first state in the United States to permit physician-assisted death; it has since been joined by California, Colorado, Hawai‘i, New Jersey, Maine, Montana, Vermont, Washington, and the District of Columbia. See Wailoo (2014) for a history of physician-assisted death in the United States. Some patients turn to vsed after finding the requirements for their juris- diction’s death with dignity statutes too burdensome. vsed requires resolve but no terminal diagnosis, proof of mental capacity, government action, or physician authorization. Most such patients die within two weeks (Span 2016b).

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Switzerland; all but Switzerland also permit euthanasia under certain circumstances.39 Although only a very small number of people take advantage of euthanasia and physician aid in dying in states and countries where it is legal, opinions on both sides of the issue are fervent.40 Many believe strongly that euthanasia and physician-assisted death are matters of personal liberty and choice. To give one example, following the nomination of Neil Gorsuch (1967–) to the U.S. Supreme Court, Marc Perkel of Gilroy, California wrote in a letter to the New York Times:

I have terminal stage 4 lung cancer, and because I live in California I have the ability to choose how and when I will die. Judge Gorsuch, an outspoken opponent of death-with-dignity laws [including in The Future of Assisted Suicide and Euthanasia (2009)], would take that away. He would impose his own personal philosophy and his own values on my life and my choice, forcing me to slowly die of suffocation. He believes that the government, not the individual, gets to make my final life choices. And that his personal beliefs should be enshrined into law and im- posed on the rest of us…. I would urge Congress to reject Judge Gorsuch

39 In 1984, the Netherlands became the first country to accept certain types of euthanasia and physician-assisted death, while physician-assisted death has been legal in Switzer- land since 1942 (Aviv 2015). British writer Jojo Moyes’s (1969–) novel Me before You (2012), adapted into a film of the same name in 2016, features a young man, Will Traynor, who after being diagnosed C5-6 quadriplegic with limited movement in a single arm, ultimately decides to pursue euthanasia in Switzerland, much to the distress of his caregiver Lou- isa Clark. As Louisa explains to her parents, “What has been the worst thing for him has been losing the ability to make a single decision, to do a single thing for himself” (2012: 351). Although she initially was strongly opposed to his going to the Swiss clinic Dignitas, Louisa in the end advocates for his freedom of choice. Soviet Russia became the first world state to legalize euthanasia. The Criminal Code of the Russian Soviet Republics of 1922 declared that “causing death to relieve the unbearable suffering of a patient at that person’s request should not be considered murder”; this provision was rescinded several months later to prevent abuse (Lichterman 2009: 614). For its part, France has “quietly authorized” euthanasia (Sayare 2014). In China, euthanasia is illegal, but there is public support for the practice, not for the benefit it offers the individual but instead for the collective good; those opposing China’s “Euthanasia Move- ment” believe that saving human life is “the first priority for medicine as an art of human- ity” (Jing-Bao Nie 2009: 130). Porter (2017) describes the experiences of Canadians who recently have chosen medically assisted deaths. 40 Physician-aided deaths account for only .3 to 4.6 percent of deaths in these places (“De- spite Increasing Global Legalization” 2016).

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and replace him with someone who will keep Uncle Sam off my death- bed. (2017)41

Perkel echoes Brittany Maynard (1984–2014), a resident of California who moved to Oregon to take advantage of its death with dignity law and in a 2014 essay for cnn asked, “Who has the right to tell me that I don’t deserve this choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me?” (2014).42 Likewise, for some, medical aid in dying is the essence of person-focused care. Barbara Coombs Lee and Kim Callinan, president and chief program officer of Compassion and Choices, assert that

To patients, [medical aid in dying] is a prime litmus test of person-centered care. It exemplifies a medical system that respects patients by allowing them to assert their values and priorities as death approaches. Medical aid in dying is a natural and central component of patient- centered, end-of-life care…. We call upon leaders within the medical, policy and palliative care communities … to unite around a new definition of patient-centered care. A definition that respects patients’ values and priorities around death as paramount, even if they differ from those of the healthcare community. (2016)43

Echoing many with terminal conditions, metastatic lung cancer patient and Princeton alumna Lesley McAllister, a professor, wife, and mother in her forties, explained in a letter to California’s Governor Jerry Brown (1938–) as that

41 No one knows for certain, of course, the extent to which judges will impose their personal beliefs on others. Many believe the option of physician-assisted dying to be a matter of mercy, arguing that physicians are obliged to alleviate suffering, even if this hastens death. See Hastings Center (n.d.). 42 Maynard moved with her husband to Oregon after she was diagnosed with stage four incurable brain cancer and was told by physicians that there was no treatment that would save her life and no treatment that would not “destroy the time I had left.” Maynard feared lingering in hospice care for weeks or even months, “suffering personality changes and verbal, cognitive and motor loss of virtually any kind” (Maynard 2014). Maynard’s wid- ower Dan Diaz continues to share her story and advocate for the availability of medical aid in dying. See also Neumann (2017), who discusses stark differences in perceptions as to what makes a “good death.” 43 As mentioned in the introduction to Part 2, the terms patient-centered and person- centered/focused are frequently used interchangeably; without question, the focus of Lee and Callinan (2016) is on the whole person.

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Interventions in Dying 407 state was working on legalizing physician-assisted death, “I want to have the option to take medication that will allow me a peaceful death at a time of my choosing…. It would probably be hard for me to make the decision to leave the world earlier than I absolutely have to because I don’t want to leave my family. But I would take comfort in knowing that I have the means” (Bernstein 2016: 26). McAllister’s comment reverberates with research that reveals people are much less concerned about managing pain than about preserving dignity, autonomy, and control in their final days (Szabo 2016). Euthanasia and especially physician-assisted death, many argue, enable them to do just this. In contrast, Gorsuch and others opposed to euthanasia and physician- assisted death speak about more general implications, arguing that “all human beings are intrinsically valuable and the intentional taking of human life by private persons is always wrong” (2006: 4–5). Robert George likewise declares that “opposition to medicalized killing … is grounded in a recognition of … the idea that no one has ‘a life unworthy of life,’ or is ‘better off dead’ … It reflects the belief that nothing should be done that gives credit to or encourages the adoption of these beliefs, even by those suffering pain and tempted to despair” (Bernstein 2016: 26–27). For their part, prompted by the publication of the essay “It’s Over, Debbie,” a legislative initiative in California, and public policy in the Netherlands, Peter Alexander Singer and Mark Siegler argued in 1990 that “the public good served by the prohibition of euthanasia outweighs the private interests of the persons requesting it.” This is because of “the likelihood, or even the inevitability, of involuntary euthanasia – persons being euthanized without their consent or against their wishes.”44 Gorsuch, George, and others similarly assert that legalizing physician-assisted death places society on a slippery slope, further jeopardizing its most vulnerable members, despite the fact that most who take advantage of this option are white, relatively wealthy, and well-educated.45 Answering the call to reduce suffering at the end of life, many opposed to euthanasia and physician-assisted death promote increased palliative care and counseling, with which supporters of euthanasia and physician-assisted death fervently agree. Unlike them, however, opponents of physician-assisted death do so at the expense of depriving terminal patients the ability to control the time and place of their deaths.

44 Singer and Siegler (1990) list four ways policies allowing voluntary euthanasia can lead to involuntary euthanasia: crypthanasia (secret euthanasia), encouraged euthanasia, surro- gate euthanasia, and discriminatory euthanasia. Physician Peter Alexander Singer is to be distinguished from Australian moral philosopher Peter Albert David Singer, a vocal sup- porter of euthanasia. 45 Gorsuch discusses possible worst-case scenarios (2016: 129–132). Stingle (2010) provides different perspectives on the slippery-slope argument.

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Similarly, even as public support increases for at least the option of physician aid in dying, many physicians remain vehemently opposed, repeating the arguments that this puts society on a slippery slope to endorsing eugenics (although this has not happened in the countries where physician aid in dying and/or euthanasia has been legalized); that it puts vulnerable populations at risk (despite the fact that the vast majority of people who have chosen physician aid in dying have been socioeconomically privileged); that it will take pre- cedence over high-quality palliative care (disregarding the data, which point to the opposite and reveal that legalization sensitizes practitioners to ensuring the comfort of their patients with terminal conditions); and that physicians must “do no harm” (even though preventing patients from dying on their own terms can be considered a form of harm) (Warraich 2016: A19).46 Dr. Lonny Shavelson, a former emergency room physician who has recently started a practice dedicated to providing compassionate end-of-life care, argues that patients should be respected until the end: “We always listen to the patient. We never tell a patient: ‘This is what you have to do. You have no choice.’ Yet at the moment when their life is ending … suddenly they become wrong and we become right. That does not make sense to me. Dying should not be completely separate from everything else we do in medicine” (Medina 2016). Shavelson overestimates the extent to which health professionals listen to patients and avoid giving ultimatums, but his larger point is apt – aggressive, non-beneficial treatment is on the rise; directives are frequently ignored; admissions to intensive care units in the last month of life continue to increase; and far too many people who had hoped to die peacefully end up dying in institutions tethered to machines (Lee and Callinan 2016).

46 Warraich elaborates in Modern Death: “The central theme expounded by those who rally against assisted suicide is the historically durable maxim ‘Do no harm.’ But what is harm? Is a patient who gets treatments they would not want harm? Are not excessive unbenefi- cial procedures harm? Is a death far away from a place one would want not harm? And, perhaps most importantly, is a death [i.e., a process of dying] that one would not have wanted not harm?” (2017: 265–266). The American Medical Association has long been opposed to active euthanasia and physician-assisted death, but it has recently resolved to study the latter more closely and is slowly moving in the direction of patient choice. Other especially resistant groups have been the Roman Catholic Church and certain disability-rights activists (Span 2017b). In Italy, the Catholic Church stymied a bill allowing Italians to write living wills and refuse medical treatment as well as artificial nutrition and hydration for more than three decades. Lawmakers opposing the bill, which passed in December 2017, claimed that it en- abled state-sanctioned euthanasia, while Pope Francis paved the way for its passage with his announcement in November 2017 that ceasing treatment for the terminally ill could in certain cases be “morally licit” (Povoledo 2017).

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The works of literature discussed in the two subsections of “Easing Death” below – “On the Right to Decline Death-Prolonging Care” and “On the Right to Life-Ending Care” – reveal physicians as devoted to their profession and strug- gling with the idea of easing the deaths of their patients, whether by respecting a patient’s right to decline death-prolonging care or to receive life-ending care. These texts, some of which are by physicians, reveal the deep internal battles that health professionals experience, as well as the perspectives of their patients, even as healing becomes more about easing death than fighting for life. They point to the real need to investigate further how the practice of medicine can better meet the needs of all people, and especially health professionals and patients with conditions so severe that they have been deprived of a life that for them is worth living.47

1.1 On the Right to Decline Death-Prolonging Care Chinese writer Li Shijiang’s surreal short story “Yiyuan” (医院, The Hospital, 2006) begins with the first-person narrator, a middle-aged man, slipping in a bathhouse and splitting open his scalp.48 At People’s Hospital no. 108 he is given first a tetanus shot and then a rabies vaccination, as the physician on duty Dr. Peng has nothing else to do. When the narrator protests that he was not bitten by a dog, Peng responds rather facetiously that he might have been bitten in the past or might be bitten in the future. The following day, the narrator asks to be released from the hospital, but his request is refused. Peng warns him that he does not have aids but that his blood sugar is too high and his blood too thick, and so he is at risk of having a cerebral embolism. When the narrator protests that he is not ready to die, Peng takes him to the morgue and shows him rows of corpses who together warn him, “You must listen to the doctor. If you don’t, you’ll end up crowded here with us” (2006: 62). The narrator promises that for the remainder of his life, he will do what the doctor says. After his heart bursts out of his chest, he finds himself scheduled for a heart transplant, kidney transplant, and gallbladder transplant, as well as a facelift and an operation to transplant to his chest the moles on his face, procedures that together will require he spend a full year in the hospital. Eventually deciding that he has had enough, the narrator petitions for his release from the hospital. But Peng denies this, claiming that he does not have the time to process

47 Providing a different perspective on euthanasia is the Canadian television series Mary Kills People (2017–), which debuted as Canada was legalizing certain types of physician- assisted death. This show features Dr. Mary Harris, who works as an emergency room physician by day and at night offers her services to the terminally ill who want to die. 48 Li Shijiang is a leading member of the so-called Post 70s Generation of Chinese writers.

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410 Chapter 7 the discharge. The narrator is able to escape from the hospital only when an elderly patient torches the building. While revealing that Peng has sympathy for both human and nonhuman suffering, and that he understands that health professionals need both ethics and skills, Li Shijiang’s satiric “The Hospital” depicts physicians not only as advocating endless useless treatments and procedures but also as demanding complete obedience. In other words, what the patient wants matters little, if anything.49 So whose life is it anyway? The answer is clear for Ken Harrison, the hospitalized quadriplegic protagonist of British playwright and television writer Brian Clark’s (1932–) drama Whose Life Is It Anyway? (1978), which “has had more influence on the euthanasia argument than any other literary work” (Humphry 1986: 141).50 The answer is not so obvious for the health professionals who care for Harrison. Whose Life contrasts Harrison’s firm belief that it is his choice whether to continue life-sustaining care with the insistence of health professionals that it is their duty to keep him alive as long as they can, regardless of what he wants, even if this means falsely declaring him mentally incompetent and holding him against his will. At the same time, after a judge determines that the choice is Harrison’s, the same health professionals who did their best to keep their patient attached to life-sustaining equipment now

49 While the narrator, Peng, and one of the hospital’s nurses are in the Maldives in a bizarre attempt to cure the narrator (who has claimed that he would like to die), Peng is dis- tressed at the number of injured plants and animals. “The Hospital” likewise features a crocodile that chastises them for polluting the water, warning that it is having difficulty surviving in such an environment (2006: 68). The narrator of “The Hospital” also criticizes Chinese surgeons for carelessly leaving surgical items inside their patients. Interesting as well in this context is Vietnamese writer Mai Kim Ngọc’s (Vũ Đình Minh, 1937–) “Trong Phong Hoi Sinh” (In the Recovery Room, 1994), narrated as a monologue by a man with a terminal disease. Near the end of the short story, the narrator complains about the rudeness of the hospital attendants and then asks, “Who’s the old man on my bed? He’s in a coma, his chest is bandaged all over. They’re giving him shots, they’re breathing into his mouth, they’re pushing the breathing machine over to him[…]They’re pumping electricity into his body[…] They are pushing the button; he’s shocked, bending his body upward like someone with dengue fever; now he’s throwing himself back down[…]It’s like an emergency room scene in an American movie…Someone is shining a light into his eyes and shaking his head[…] Damn, [the patient] is me” (1996: 107). This is one of the few scenes in literature to describe the efforts at life-prolonging treatment from the patient’s perspective, and it points to the objectification of the body on the table. Brackets point to ellipses in the original text. 50 Whose Life premiered in 1972 as a television show on Granada TV; it was first performed on stage in London in 1978, and it premiered in the United States in New York in 1979. It has since been performed throughout Europe and the United States, including on Broad- way. The play was adapted into a film of the same name in 1981, starring Richard Dreyfuss.

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Interventions in Dying 411 offer to care for him in his final days and let him die peacefully in the hospital. To be sure, these individuals claim this is because they want to be there if their patient changes his mind and decides he wants to stay alive. Yet the rapidity with which they accept the judge’s ruling suggests that they were uncomfortable, however unconsciously, with keeping Harrison alive against his will, but that in a society where physicians are expected to forestall death as long as possible despite a patient’s wishes, they had no choice but to do so. Whose Life depicts health professionals as in some sense being nearly as restricted as their patients: even when they want to abide by a patient’s wishes, they are prevented from so doing by the expectations of their profession and of society more broadly. Harrison is a witty, articulate young sculptor with a sympathetic family who has spent the past six months in the hospital after having been severely injured in an automobile accident that paralyzed him from the neck down.51 The technology necessary to keep him alive requires that he reside in an institution – a hospital or long-term care facility. Even more devastating to Harrison is that, although his mind and imagination remain as sharp as they were before the accident, his injuries prevent him from doing what he finds meaningful. Know- ing that under such circumstances he will not be able to create a life worth living for him personally, Harrison declares the right to decline the medical care that is keeping him alive and demands to be released from the hospital. As he asserts late in the play before the judge who is deciding whether the hospital must release him from their care:

Of course I want to live, but as far as I am concerned I’m dead already…. I cannot accept this condition constitutes life in any real sense at all…. It’s a question of dignity…. I can do nothing, not even the basic primitive functions. I cannot even urinate, I have a permanent catheter attached to

51 Critics of Whose Life have called attention to the absence of Harrison’s family in the play; Harrison has broken up with his fiancée, despite her stated desire to stay with him, and when he tells his mother about his plans to die, she understands: “There were tears in her eyes. She said: ‘Aye lad, it’s thy life … don’t worry about your dad.’” When Harrison asks his mother how she will cope, she responds simply, “Do you think life’s so precious to me, I’m frightened of dying?” (1978: 99). In his review of the play, William Arney claims, “No one’s life is completely his own, at least in the sense that we are all caught in complex webs of obligations, friendships, commitments” and so Harrison’s “having cut all ties … creates a sense of unreality” (1980: 110). This is true to a certain extent, but as discussed in Chapter 9, any number of literary works address the family/close friend dynamics of end-of-life decisions. Part of what makes Whose Life so powerful is precisely the fact that it portrays a character whose family supports him but also is not in a position to help convince the authorities that his choice should be respected.

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me. Every few days my bowels are washed out. Every few hours two nurses have to turn me over or I would rot away from bedsores. Only my brain functions unimpaired but even that is futile because I can’t act on any conclusions it comes to…. I choose to acknowledge the fact that I am in fact dead and I find the hospital’s persistent effort to maintain this shad- ow of life an indignity and it’s inhumane. clark 1978: 139–142

In the 1981 movie adaptation of Whose Life, Harrison elaborates, revealing that his imagination, his most precious possession, has become his enemy and now tortures him. And he becomes even more livid at the medical personnel who seem to care nothing at all about what he wants:

You who have no knowledge of me whatsoever have the power to con- demn me to a life of torment because you cannot see the pain … if you saw a mutilated animal on the side of the road, you’d shoot it. Now, I am only asking for the same mercy you would show that animal … just take me somewhere and leave me. Whose Life Is It Anyway, 1981

Both the play and the film mock the obliviousness of healthcare personnel to the true needs of their patients.52 From the beginning, Harrison comes across as strong in his convictions, not at all the “depressed” individual his medical team assumes he has become the moment they learn he has no interest in life as a quadriplegic unable to sculpt. When in act 1 Harrison refuses an injection, declaring, “I take it that the injection is one of a series of measures to keep me alive…. I’ve decided not to stay alive,” Dr. Michael Emerson immediately advises him that he is understandably depressed and that it will take time to accept his new situation. And Em- erson gives Harrison the injection despite the latter’s plea that he not do so, again explaining to Harrison that he is depressed. Emerson urges him to “rely” on his medical team (1978: 43–44). Later in the play Harrison’s attorney Philip Hill speaks briefly with Emerson, who persists in refusing to let Harrison leave the hospital, repeating that “it is my duty as a doctor to preserve life” (82). And Emerson again declares Harrison to be suffering from depression. Emerson furthermore claims that Harrison is mentally unbalanced and therefore “inca- pable of making a rational decision about his life and death” (82). Emerson

52 It is unlikely that members of the hospital staff perceive Harrison as akin to a “mutilated animal,” but this is how he sees himself.

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Interventions in Dying 413 therefore invokes section 26 of the 1959 Mental Health Act to have Harrison admitted compulsorily. For Emerson, it is all about himself: “I have every confi- dence that the law is not such an ass that it will force me to watch a patient of mine die unnecessarily…. I just want to be under laws that take full account of professional opinion” (127). Emerson’s callousness, his refusal to listen to his patient, could not be more evident. The medical social worker Clare Boyle is no more receptive to Harrison’s wishes. Harrison explains to her, “I’d rather not go on living like this” (53). When she attempts to reassure him that most other patients in his condition do want to live and find a new way of life, that technology is making more and more things possible, Harrison insists, “I really have absolutely no desire at all to be the object of scientific virtuosity. I have thought things over very carefully. I do have plenty of time for thinking and I have decided that I do not want to go on living with so much effort for so little result” (55–56). Boyle shows little understanding of her patient, patronizingly responding, “Yes, well, we shall have to see about that…. We can’t just stop treatment, just like that…. It’s the job of the hospital to save life, not to lose it” (56). She too believes Harrison is suffering from depression, that with time he will “begin to see that a life is possible” (57).53 Dr. Clare Scott is not much better, declaring to Harrison that she knows from experience that he will “get over” his desire to die. Behind closed doors, Scott is more sympathetic. She reminds Emerson that it is Harrison’s life, that a wish to die is not necessarily a symptom of insanity, as Emerson believes it to be. But Emerson responds as he has many times before: “A doctor cannot accept the choice for death; he’s committed to life” (91). And Scott confesses to Harrison’s lawyer that she would be relieved if by some miracle Harrison had momentary use of his arms so he could swallow a bottle of sleeping tablets (101). But despite these doubts about what the hospital is doing, she has little choice but to join her colleagues in keeping Harrison attached to life-sustaining treatment.

53 This type of paternalism was and is quite common. Donald Herbert Cowart (Dax Cowart, 1947–2019), a noted American patients’ rights advocate, had experiences akin to Harri- son’s. Cowart suffered severe burns over most of his body in a 1973 accident. He repeatedly begged to be allowed to die, but physicians ignored his pleas, instead subjecting him to torturous treatments. One of his physicians dismissed Cowart’s desires, arguing, “I didn’t feel his reaction – ‘I want to die’ – indicated what he really wanted…. He sort of was like the child who doesn’t want the shot but then holds out his arm to get it.” Two films document Cowart’s suffering – Please Let Me Die (1974) and Dax’s Case (1984). Cowart was not simply a right-to-die advocate. Instead, he insisted, “I’m an advocate for individuals to decide for themselves” (Slotnik 2019: A24).

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In his arguments before the judge, Harrison reveals himself to be exceptionally well-spoken and shows his depression to be reactive rather than endoge- nous, exactly as the psychiatrist, Dr. Barr, whom attorney Hill brings in to tes- tify on his client’s behalf, asserts (135). Harrison also makes clear that this case is solely about himself and no one else. In other words, by no means does Whose Life suggest that the life of a quadriplegic is not worth living; Harrison could not be more explicit that he speaks only for himself. But he also could not be more explicit that the life in question is his, and the choice is his and his alone. Earlier in the play, Harrison explains to his attorney, “I know that many people have succeeded in making good lives with appalling handicaps. I’m happy for them and respect and admire them. But each man must make his own decision” (77). Later, before the judge, Harrison likewise declares, “The cruelty doesn’t reside in saving someone or allowing them to die. It resides in the fact that the choice is removed from the man concerned” (141). And when the judge then asks Harrison whether he would not agree that “many people with appalling physical handicaps have overcome them and lived essentially creative, dig- nified lives,” Harrison affirms the validity of this statement, then adds, “But the dignity starts with their choice. If I choose to live, it would be appalling if society killed me. If I choose to die, it is equally appalling if society keeps me alive” (142). The judge is not immediately convinced, asserting that he cannot accept that it is undignified for society to keep someone alive, that so doing actually enhances that society. Harrison rephrases his earlier remarks: “It is not undignified if the man wants to stay alive, but I must restate that the dignity starts with his choice” (143). In other words, Harrison emphasizes that he is speaking only for himself and that like every human being, he deserves to have the choice whether to live or die. Echoing past and anticipating future arguments about an individual’s right to decline life-sustaining care – especially the belief that wanting to die is ipso facto evidence of depression or even insanity, that society must insist on keeping alive even an individual who desperately wants to die, and that individuals with severe disabilities should not be allowed to choose to die because if they did that would invalidate the lives of other individuals with these disabilities – Whose Life argues strongly for a patient’s right to choose.54 Ultimately, the

54 Disability rights organizations have been some of the strongest opponents of assisted suicide and euthanasia, arguing not only that there is a tremendous difference between being disabled and being terminally ill but also that both groups of people are being taken advantage of, if not being abused, by a society seeking to cut healthcare costs. They point out that suicide prevention programs are largely targeted at able-bodied individuals. See, for instance, the website of Not Dead Yet, a “national, grassroots disability rights group

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Interventions in Dying 415 judge decides in favor of Harrison, having been convinced that he is “a brave and cool man who is in complete control of his mental faculties” (144). The play concludes somewhat surprisingly with Emerson offering to let Harrison die peacefully in the hospital, reassuring him that without treatment he will be unconscious in three days and dead in under a week, but that he will have the opportunity to change his mind at any time. The physician’s rapid conversion suggests that despite his strenuous arguments to the contrary, he had doubts all along but no space to voice or even to ponder ambivalence. He had been trained solely to think of himself as saving lives, not to think of these lives as human beings who might have needs, desires, and fears very different from his own. Portraying a character as articulate and sympathetic as Harrison, Clark’s Whose Life makes a strong case for a person-focused approach to medical care. The play answers unequivocally the question it poses in the title – the life, the choice, is the patient’s. Physician Sum Yee Chan correctly observes in her review of the 2005 performance of Whose Life that “the message for doctors seems to be that we need to listen more to our patients and treat them more as people” (2005). But as writings by other physicians make clear – including American physician Terrence Holt’s memoir, Internal Medicine: A Doctor’s Sto- ries, and Japanese physician Setoue Kenjirō’s Dr. Setoue’s Outlying Islands Clinic Diary – listening closely to patients and treating them as people is challenging, even for those health professionals committed to respecting patient choice.55 Holt’s Internal Medicine is the story of his medical residency, written in the ten years after completing that stage of his medical career.56 In the introduction,

that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimi- nation” (Not Dead Yet 2019). Not Dead Yet has branches worldwide. 55 The summer of 2017 witnessed two court cases in London that exposed the difficulty of determining what it means to die with dignity: while physicians argued strongly, despite the pleas of his parents, that seriously ill infant Charlie Gard’s life support should be turned off to prevent further suffering, terminally ill Noel Conway, suffering from motor neuron disease that was becoming increasingly painful and left him less than a year to live, declaring that his physicians should be able to give him a lethal injection when he decided that his time had come (Malik 2017). Malik argues, “It is difficult to divine the moral logic of insisting that Charlie must die with dignity, in spite of a possible treatment and the desperate plea of his parents, while denying a terminally ill, morally competent individual that same right” (2017: A23). Gard died on July 28, 2017, one day after the with- drawal of life support. In January 2018, Conway was given permission to challenge Brit- ain’s laws on assisted dying, but his request was denied. Conway continues to challenge the United Kingdom’s laws on assisted dying. 56 Terrence Holt is an internist specializing in geriatric medicine at the University of North Carolina at Chapel Hill. He is also known for his debut short story collection, In the Valley of the Kings (2009).

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Holt notes that he wrote this book “primarily in an attempt to make sense of the process of becoming a doctor” (2014: 1). Holt initially was convinced that the hospital was “not narratable”: it was “too manifold, too layered, too many damn things happening one on top of the other ever to get it down in its entire- ty” (2). But he also realized that more important than capturing every relevant detail would be to create “a parable that could somehow imply the whole,” one that was “faithful to the inner life of medicine” (3, 5). From the beginning, Holt addresses one of the most fraught challenges facing the medical community in more privileged societies: how best to care for patients at the end of life when technology is available to sustain life but not to provide a quality of life satis- factory to the patient. The first patient introduced is Mrs. B. As is true of all the patients who appear in Internal Medicine, the character of Mrs. B is not based on a real person, Holt believing that even if he were to alter the details, writing about actual individuals is disrespectful; it “[makes] a spectacle out of someone else’s suffering,” a line that should not be crossed (4). Instead, Mrs. B is an “assemblage” drawn from a variety of sources, compiled from multiple cases. She is a do not resuscitate/do not intubate (dnr/dni) forty-seven-year-old white female with scleroderma, a chronic connective tissue disease often classified as an autoim- mune rheumatic disease that can have cardiac and pulmonary complications (Sclerodoma Foundation 2019).57 Mrs. B is on oxygen, but her breathing is la- bored. Holt calls his supervising physician, Keith, for advice, and Keith’s first question is whether Mrs. B is dnr. When Holt replies in the affirmative, Keith asserts, “Well, that’s it…. If it’s her time, it’s her time. Just crank up her Os and give her some morphine. That’s all you can do” (16). Keith respects the patient’s decision and accepts the possibility of palliative sedation. And he makes it clear to Holt that he is to do so as well. Keith also makes no mention of his own feelings about the matter, implying that his opinions simply do not matter. The patient’s choice is final. Holt, on the other hand, is not so convinced. Finding the face mask stifling, Mrs. B refuses to wear it, even though it would provide her with oxygen to help her breathe and keep her alive. Holt spends several pages describing their argument over the mask: he puts it on Mrs. B, only to have her take it off. Holt asks the nurse to sedate Mrs. B, so that he can again put on the mask, but the nurse refuses, saying, “I can’t force a patient.” And when Holt responds that Mrs. B will die if she does not wear the mask, the nurse tells him that until the Psychiatry Department declares Mrs. B incompetent, “It’s her decision. We can’t make it for her.” Holt is silent, but he reveals that he knew Psychiatry was

57 No intubation means no breathing tubes, ventilators, or calls to the icu.

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Interventions in Dying 417 not going to declare Mrs. B incompetent, that he knew “it was her decision,” but that he thought that he had to do something (22). And so he does, sedating the patient deeply enough to equip her with a tight-fitting BiPAP mask, the “next-best thing to intubation” (25). But Mrs. B also pulls this mask away, and she shakes her head when Holt says, “We’ve got to do something” (27). Whereas both the nurses and Holt’s supervisor are adamant about respecting the patient’s wishes, in letter and in spirit, Holt stubbornly insists on doing everything he can to “save” her, even though she made clear both in writing and in person that she has no interest in being saved. Finally, Holt leaves the room, and the next time the nurses call him, it is to report that Mrs. B has died. Later in Internal Medicine, Holt writes, “We practice a scrupulous ethics in my hospital. Patients decide the limits of their care. If they can’t talk, the family tells us what to do. And no matter what I think of their decision, I am bound to respect their wishes” (119).58 But as the case of Mrs. B exemplifies, respecting a person’s desires can be anything but straightforward, particularly when health professionals are uncomfortable with a patient’s decision. Although practicing medicine half a world away and in a remote rural setting, Japanese physician Dr. Setoue Kenjirō describes similar conflicts in his memoir, Dr. Setoue’s Outlying Islands Clinic Diary, a volume that draws from the extensive journals he kept during his decades practicing medicine at Teuchi Clinic on Lower Koshiki Island (下甑島, Shimo Koshikijima), a small island off the western coast of Kyushu. Setoue began his medical career as a surgeon in a large urban hospital in Kyushu and in 1978 agreed to work for six months at the Teuchi Clinic. He has remained there ever since, even though other, much larger institutions have attempted to lure him away, and it was only in September 2016, after nearly forty years in the position, that he stepped down as director.59

58 Holt continues, “Up to the point where my efforts are clearly futile, and then the question is moot: at that point, usually, the patient speaks in the only way left to him, by dying despite everything I can do. Whenever the decision is taken out of my hands, I feel relieved. Who would want the power to decide” (119). Many patients and their families in fact demand more care than health professionals deem appropriate. A recent example receiving considerable media attention was the family of Jahi McMath (2000–2013/2018). Physi- cians declared McMath brain dead in 2013, shortly after an elective albeit complicated surgical procedure. Her parents refused to believe that she had died and insisted that she be put on life support; she was transferred from California to New Jersey and remained on life support until June 2018. In a lengthy feature on McMath, Aviv explains that given years of medical neglect because of the color of their skin, African Americans are twice as likely as white Americans “to ask that their lives be prolonged as much as possible, even in cases of irreversible coma” (2018: 35). 59 Also significant about Setoue is that he is the inspiration for Dr. Kotō, the protagonist of the manga series Dr. Kotō shinryōjo (Dr. コトー診療所, Dr. Kotō’s Clinic) by Yamada

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In the introduction to his memoir, Setoue explains that the history of medical care on Japan’s remote islands and in its hinterlands has been one of medical tragedies, these areas forever suffering from a shortage of doctors (2006: 8). Most vulnerable are the elderly, who account for nearly 40 percent of the island’s population of 2,300. In his memoir, Dr. Setoue underlines the importance of providing relief to patients, declaring this to be even more challenging than curing them:

As a physician, I have many patients I cannot cure [治せない患者]. But there are no patients who do not need to be provided relief [救いのいらない患者はいない]. Even patients with only a single day remaining need relief [救い] that one day. We must not become so hung up on curing [治すこと] that we forget about providing relief [救うこと]. The difficulty is how to give a patient relief [いかに救うか]. Providing relief [救うこと] is even more difficult than curing [治すこと]. (210)

Repeating the verbs “naosu” (治す) and “sukuu” (救う), Setoue makes clear the distinction between curing and providing relief, and he emphasizes the importance of the latter. It is significant that Setoue uses the verb sukuu, translated above as “providing relief,” to refer to the physician’s responsibility regarding patients who cannot be cured: sukuu also means to save or to rescue a person from danger, to help a person out of a difficult situation, or to offer religious salvation.60 In using sukuu, Setoue depicts easing a patient into death not as surrendering to the inevitable, not as “giving up,” but instead as an active process that brings patients comfort through their final days.

Takatoshi (山田貴敏, 1959–), which appeared in twenty-five volumes in Japanese between 2000 and 2010, in Taiwan in Chinese (as 離島大夫日誌, Lidao daifu rizhi, Re- cords of a Doctor of the Outlying Islands) between 2001 and 2009, and in French (as Dr. Kotō) between 2007 and 2012. The manga series was also adapted into a popular Japanese television program of the same title, which aired between 2003 and 2006. The memoir Dr. Setoue has been adapted into English by Jeffrey Irish as Doctor Stories: From the Island Journals of the Legendary “Dr. Koto” (2012). Irish got to know Setoue while living on Lower Koshiki Island and comments in his introduction, “I loved the way the doctor related to his patients, his habit of asking about their families and their day-to-day lives before delv- ing into whatever ailed them” (2012: xiv). As Irish explains in the introduction to his adaptation, he selected excerpts from Setoue’s journals that give a window into the islanders, Japanese medicine, island medicine, and “the character of the doctor himself” (xiv). The Japanese Dr. Setoue and English Doctor Stories overlap in several places, but the latter for the most part is based on Setoue’s unpublished journals, not on the memoir Dr. Setoue. 60 As discussed in the previous chapter, Ginko of Watanabe Jun’ichi’s novel Flower Burial uses the verb sukuu to refer to what she hopes to do as a physician.

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Even more notably, this passage wraps up a segment in Dr. Setoue not on eschewing a risky surgery that has little chance of success, as might be expected given its tone, but instead on successfully performing precisely such a surgery. In this segment, titled “Inoperable” (インオペ) and dated July–August 1990, Setoue explains that when a patient is diagnosed with cancer, regardless of which stage, every option is considered. At the same time, he continues, there are limits to what is possible for a patient with advanced or metastatic cancer, and he warns that physicians who do not take these limits into account run the risk of causing their patients unnecessary pain (余計な苦痛, 206). But the balance is delicate. Setoue is critical of those who criticized his former hospital for operating on 85 percent of its lung cancer patients when the national average was 25 percent. He claims that its policy of removing as much cancer- ous tissue as possible brought happiness to patients, many of whom “left the hospital in smiles” (206). These included people who were thought to have been inoperable but who in fact went on to live long lives after their surgery. Setoue suggests that patients who do not receive surgery suffer the most. In “Inoperable,” he gives the example of Mr. O, an athletic man in his sixties with late-stage lung cancer. For three months Mr. O had made the rounds of hospitals searching for a physician who would operate on him. Learning of Setoue’s record, Mr. O’s family came to him in desperation; Setoue looked at Mr. O’s X-rays and declared that he should have surgery without delay. So the following day, Mr. O’s family brought him to the clinic for the procedure. But Setoue had a change of mind once he took a close look at Mr. O, recognizing that the three months Mr. O had spent going from hospital to hospital had made his cancer truly inoperable. Setoue explained to Mr. O and his family that there was a 99 percent chance that Mr. O would not survive the surgery. Undeterred, Mr. O, his wife, and their three children grasped onto the 1 percent chance that he would survive, and they pleaded with the physician to perform the surgery. Setoue reports that the surgery was exceptionally difficult; on the operating table the patient appeared to have not even a 1 percent chance of survival. But defying everyone’s predictions, by the third day after surgery, Mr. O began to recover, and by the morning of the fifth day, Mr. O was so improved that he resembled an entirely different person, a dramatic and unexpected turnaround Setoue likens to a victory brought about by a “grand slam home run hit in the bottom of the ninth inning with two outs” (210). Setoue admits that the surgery did not cure Mr. O and that in time his condition worsened. But Setoue believes that even though it provided Mr. O with only a brief respite from suffering, the surgery was a “99 percent great success” (九十九パーセント大成功だった) in that it gave the patient and his family “the satisfaction that they had fought the cancer with all their might and against all odds” (わずかの可能性を求めて

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命を懸けてガンを闘った, 210), which is precisely what the patient and his family had most desired. Baseball similes and the thrill of surprise victories aside, Setoue makes clear throughout “Inoperable” that in performing surgery, he was following the wishes of Mr. O and secondarily those of his patient’s family. As is readily apparent from the concluding lines cited above, Setoue is not advocating that physicians press people who have only an extraordinarily slim chance of survival to pursue aggressive treatment. Instead, he makes clear the importance of listening to patients and following their wishes as closely as possible, understanding that providing relief comes in many forms, including even aggressive surgery, but only when this is what the patient wants. By titling this segment “Inoper- able,” Setoue draws attention to both extremes – on the one hand patients deemed “inoperable” even when an operation could extend the number of years they might enjoy a life they felt worth living, and on the other hand patients who truly are “inoperable,” those whose conditions cannot be cured but whose suffering can be mitigated. Advocating in the abstract that physicians relieve suffering rather than ob- sess over curing the incurable is one thing, yet Setoue makes no secret of his discomfort with patients who insist that they not receive treatment. As por- trayed in an early segment of Doctor Stories (the loose English adaptation of Dr. Setoue, which contains material from Setoue’s journals not included in the Japanese Dr. Setoue), not long after moving to Lower Koshiki Island, Setoue is visited by Grandpa Takaharu, a man in his seventies whom Setoue suspects has stomach cancer. But Takaharu at first refuses to be examined or to undergo any tests. Instead, he brings a document provided by the Federation for the Refusal of Medical Treatment titled “My Wishes with Regard to the Refusal of Medical Treatment.” This document asserts, “I am committed to live in a way that suits me, with the freedom to refuse and not depend upon medical treatment and painful surgery. More than anything, I worry about becoming an invalid, becoming senile, or even a vegetable, and being an imposition on my family. Un- der such conditions, I would like for my life to be as short as possible and do not want for it to be prolonged with any unnatural medical management” (2012: 10). Setoue is skeptical. He has never heard of the federation, and although he shares some of the sentiments articulated in their document, he believes strongly that each of the island’s residents must be cared for with “the utmost effort within the limits of medical science.”61 At the same time, Setoue

61 The federation to which Takaharu is referring is likely an offshoot of the Japan Society for Dying with Dignity, which has long promoted living wills. For more on the Japan Society for Dying with Dignity see below.

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Interventions in Dying 421 is well aware that medicine includes both necessary and unnecessary treatments, and that necessary and unnecessary are relative concepts whose defini- tions “may vary greatly from patient to patient and doctor to doctor.” Further- more, he argues, “When treating a patient with terminal cancer, the use of cancer-inhibiting drugs, with their adverse side effects, may not be appropriate.” Yet he also knows that “sickness can become far more painful than any surgery” (11). Eventually, Takaharu consents to being examined, announcing to Setoue that he believes he has stomach cancer but that he does not want to have an operation or be hospitalized. An endoscopy confirms Takaharu’s self-diagnosis, but like most Japanese physicians before the 1990s, Setoue is loath to admit to his patient that Takaharu has cancer and instead tells him that he has an ulcer and urges treatment in the hospital.62 Takaharu informs Setoue that he

62 Ohnuki-Tierney (1984) describes Japanese attitudes toward cancer at this time, especially the silence of doctors and family members vis-à-vis the patient concerning the “verdict.” Even physicians diagnosed with cancer frequently were not informed of their condition. The primary reason given for hiding a cancer diagnosis was the belief that “the patients would give up hope and their condition would deteriorate rapidly,” given that patients who were accidentally told of their diagnoses appeared to deteriorate more rapidly soon after learning the truth. But, citing several examples from the late 1970s and early 1980s, Ohnuki-Tierney makes clear that the nondisclosure policy has long had its critics (62–66). Japanese physicians gradually began informing patients of cancer diagnoses in the 1990s, though details regarding prognosis still were guarded carefully (Miyata et al. 2004). See also Long, who discusses the debates in the medical community regarding disclosure and informed consent (2005: 82–109). Films such as Daibyōnin (大病人, Seriously Ill Pa- tient, 1993) – about a film director suffering from terminal cancer whose physicians and family refuse to confirm this diagnosis but after his unsuccessful suicide reveal his condition and agree not to prolong his death with drugs or other means – raised consciousness of the issue. Morita et al. (2015) compare attitudes toward disclosure in Japan, Korea, and Taiwan. Ito (2019) summarizes the experiences of film director and classically trained pianist Lulu Wang, whose film The Farewell (2019), billed as “based on an actual lie,” features an aspiring artist who struggles to keep secret from her grandmother that her grandmother has terminal cancer. Wang’s family believed that for their grandmother, the shock of the news that she had terminal cancer would be worse for her than the disease. Wang still questions whether keeping this secret from her grandmother is the right thing to do: “I don’t know what’s right…. [The lie] has allowed me to spend three months in China with my grandmother. It’s allowed me to have all of these experiences with my family that I would not have had otherwise. But on an ethical level, I’m still torn.” Lulu Wang had earlier made public her family’s story on the April 22, 2016 episode of the podcast “This American Life.” She speaks there of her deep ambivalence toward keeping her grandmother in the dark, and of the large burden it placed on the family, but at the same time she emphasizes that many Chinese believe strongly that telling a person they have a terminal condition merely hastens their demise. Wang also reveals that her grandmother had hidden from her husband

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422 Chapter 7 knows he has cancer, and he refuses to be treated. His condition deteriorates, and at the end, he does permit Setoue to insert an IV, which eases him into a “splendid” death (2012: 13). Setoue speaks of his regret in having been refused the opportunity to provide what he understands as “necessary” medical care – “an [additional] exam, an operation, pain medication, and an [additional] IV” (13). But despite these conflicts, he nevertheless respected Takaharu’s wishes until the end. More ambiguous in the English adaptation Doctor Stories is a later segment, “The Last Service,” where Setoue describes a man in his eighties who refuses to eat after suffering a stroke that has left him unable to move or speak. Setoue thinks back to a decade before, when he had another elderly patient, a woman in her nineties, who refused anything by mouth and repeatedly pulled out her IV. The octogenarian stroke survivor likewise resists Setoue’s repeated efforts to have him eat. Setoue acknowledges that if the patient is convinced he will not improve and does not want to be a burden on his son, “there was little that we could do” (2012: 188). He speaks with the man and tries to make him as comfortable as possible in the clinic, but the man’s only desire is to return home, so Setoue and his colleagues arrange for his discharge. Setoue follows up with him, visiting him daily at home. Setoue recognizes, “There was nothing I could do, after all. Knowing and honoring his feelings, I should have done nothing more” (191–192). But he nevertheless persists in offering the man an IV, which the patient at last accepts, a gesture the physician rather optimistically, if not selfishly, interprets as “his final gift to me, in thanks for the memoires that we shared” (192). The octogenarian dies soon thereafter.63 Setoue recognizes that he crossed a line but that doing so was for him unavoidable, given how much he cared for his patient. As is true of Holt, Setoue finds it exceptionally challenging to abide by the wishes of his terminal patients and to respect their decision to decline care. Setoue reveals his frustration with terminal care in contemporary Japan in the segment “Living in Pain,” which follows “The Last Service” in Doctor Sto- ries. Somewhat surprisingly, given the segments on Mr. O, Takaharu, and even the anonymous octogenarian of “The Last Service,” Setoue reveals himself in

(Wang’s grandfather) his own terminal cancer diagnosis some years before, and that even though he knew intuitively that his days were numbered, the two never spoke openly about his condition. 63 It is unclear how long the octogenarian lingers following insertion of the IV, since immediately following the sentence cited above, Setoue announces, “In February 2001, at the age of 86, the old man departed this world” (2012: 192). This segment, titled “The Last Service,” is the first segment in the section in Doctor Stories (2012) titled “2000–2012,” suggesting that the man died within a year.

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“Living in Pain” to be especially critical of the desire of patients, families, and health professionals alike to avoid pain. He begins by citing the celebrated late nineteenth-century Japanese poet Masaoka Shiki (正岡子規, 1867–1902), who suffered from tuberculosis, which before World War Two was the leading cause of death in Japan (Ohnuki-Tierney 1984: 61). Setoue is most intrigued by Shiki’s diary Byōshō no rokushaku (病床の六尺, My Six-Foot Sickbed), which was written and published between May 5 and September 17, 1902, two days before the poet’s early death from tuberculosis. Setoue calls attention to Shiki’s endorsement of nursing and the importance of meeting the patient’s emotional needs. But then, citing Shiki’s entry of June 2 on the poet’s discovery that en- lightenment comes not with death but actually is “life with composure,” Setoue declares rather idealistically, “I am convinced that terminal care must begin by looking that pain squarely in the face. There is no such thing as life without pain, and suffering has a generative power; within it we often experience the birth of fellowship and of a beautiful familial love” (2012: 193–194).64 Furthermore, Setoue complains that “patients, and those that look after them, have no toler- ance for pain. Though the struggle immediately before death is only natural, many families want to avoid it. Not just families, but doctors as well…. [Every- one believes] the patient’s pain is simply something to be eliminated, a problem often resolved with pain killers…. Forbearance, which should come first and foremost, has been nearly forgotten” (194–195). Nevertheless, Setoue recognizes that pain medication is “indispensable to terminal care” and confirms that he does not hesitate to provide this release to his terminal patients, many of whom “have enjoyed the dramatic effects of pain relievers” (195). In other words, even as Setoue not infrequently finds his own preferences in conflict with those of his patients, he depicts himself as doing his best to abide by their demands; he does not force his patients to suffer against their will. Just as significant, even as both versions of Setoue’s memoir, not to mention the manga and television series inspired by them, affirm the patient’s right to decline certain types of care, they reveal how difficult this tightrope can be to traverse for an individual so devoted to his patients yet so firm in his own convictions of his proper duties as a physician.

64 Ōe Kenzaburō likewise speaks of Shiki’s evocation of the family in the memoir Kaifuku suru kazoku (恢復する家族, A Healing Family, 1995), discussed in the introduction to Part 3. Ōe argues that Shiki is one of the few people who have been able to write candidly of the feelings between a patient and the family taking care of them, and doing so in a way that has broader significance, even as Shiki had unreasonably high expectations of his mother and particularly his sister (1995: 39–40).

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1.2 On the Right to Life-Ending Care But what happens when pain medication is not enough? One of the most controversial articles ever published in the Journal of the American Medical Asso- ciation (jama) was a brief anonymous essay titled “It’s Over, Debbie” (1988), which jama editor George Lundberg claimed was intended “to provoke responsible debate within the medical profession and by the public about euthanasia in the United States in 1988” (1988: 2142).65 The narrator of “It’s Over” is a gynecology resident called to the room of a young emaciated woman with late- stage ovarian cancer, the Debbie of the title. Debbie is vomiting unrelentingly, gasping for breath, and suffering acutely; her cancer has not responded to chemotherapy, and she is receiving only “supportive care.” The resident first thinks Debbie’s room is “filled with the patient’s desperate effort to survive.” But Deb- bie’s only words to him are, “Let’s get this over with” (“It’s Over, Debbie” 1995: 32).66 The resident thereupon goes to the nurses’ station believing, “I could not give her health, but I could give her rest.” And so he returns to Debbie’s room with a syringe of morphine, tells her and her mother that he is going to “give Debbie something that would let her rest,” and instructs them to say good-bye. Debbie looks at the syringe, lays her head on the pillow, and watches the resident inject the morphine. As the resident had predicted, within four minutes Debbie’s breathing has ceased. Her mother “seemed relieved.” The essay concludes tersely, “It’s over, Debbie” (32).67 The essay ignited a firestorm, with the mayor of New York City and the attorney general of Illinois demanding that the journal release the name of the author (Warraich 2017: 228–229). Most health professionals were outraged by the piece. For example, physician-ethicists Willard Gaylin, Leon R. Kass, Ed- mund R. Pellegrino, and Mark Siegler responded in jama with “Doctors Must Not Kill,” which declared that “the very soul of medicine is on trial” (1995: 35).68 Like many, Gaylin and colleagues suspected that “It’s Over” could be a work of fiction, claiming, “It strains our credulity to think that the story is true” (34), but they took no chances, declaring that the narrator appeared to have committed

65 “It’s Over, Debbie” appeared in the January 8, 1988, issue of jama. Several months later, Lundberg explained that publication of the essay did not signal endorsement of active euthanasia, which was and remains prohibited. 66 Although generally assumed to be male, the gender of the narrator is not specified in the essay. 67 The essay is reprinted in Moreno, who alerts readers to the possibility that this might not be a report of an “authentic situation” (1995: 31). In jama, however, the essay appeared without a preface. 68 Gaylin et al.’s essay appeared first in jama 259, no. 14 (April 8, 1988): 2139–2140. It is reprinted in Moreno (1995: 33–36).

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Interventions in Dying 425 a serious crime: “Direct intentional homicide is a felony in all American jurisdictions, for which the plea of merciful motive is no excuse” (33). They ex- pressed deep concern with the resident’s lack of ethics and professionalism, stressing that he did not know the patient and had never even seen her before, and that he did not bother to speak with Debbie or her family to clarify what she really wanted. But Gaylin and his colleagues were most adamant that physicians should never, under any circumstances, knowingly take life. Theologian and bioethicist Kenneth L. Vaux agreed that what transpires in “It’s Over” is “unconscionable” and “morally unacceptable,” given that it is not clear whether Debbie in fact wanted to be relieved from her pain rather than be released permanently from it. But, he cautioned, a deeper question remains: “As I lie dying, will I be offered humane care, will I be done in too soon by some expediency, or will I be subjected to terminal torture?” (1995: 37). And Vaux warns physicians that although the primary purpose of medical care is “to save and sustain life and never intentionally … harm or kill,” they must also not “destroy the virtue of that commitment by using medical art to prolong dying and puritanically refuse to relieve suffering…. If biomedical acts of life exten- sion become acts of death prolongation, we may force some patients to outlive their deaths, and we may ultimately repudiate the primary life-saving and merciful ethic itself” (41). In contrast to Vaux, who argues that physicians must transform end-of-life care so as to avoid putting a patient in Debbie’s position in the first place, patients, their loved ones, and the public in general took the side of the resident, writing that they applauded him “as one caring more about a patient’s pain than about cruel, outdated professional ethics and laws” (Warraich 2017: 230). Alex Hardy, a man with terminal metastasized cancer, argued, “It is often claimed by physicians that they can’t ‘play God’ and remove life support. Aren’t they ‘playing God’ when the life support is ordered? … My only concern is that some misguided physician will try to keep me alive against my wishes” (230). jama editor George Lundberg concludes in the journal’s follow-up to “It’s Over” that the general public likely feels very differently from physicians about euthanasia and that the medical establishment needs to participate more fully in the debates on this issue.69 Lundberg reaffirms medicine’s commitment to the “utter sanctity of maintaining human life,” but he also encourages renewed

69 Some physicians applauded the resident of “It’s Over.” Dr. Charles B. Clark wrote that earlier in his career he had been faced by a similar situation, “but I just didn’t have the strength to relieve a young man’s suffering in view of the possible repercussions of such an action. It is encouraging to learn that at least one of us has risked his career to relieve the suffering of another.” Clark’s letter appears with other letters to the editor in the April 8, 1988, issue of jama.

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426 Chapter 7 commitment to “preserve the best possible life for the longest possible time,” and even more significantly argues that “pain and human suffering, quality of life, productivity, and financial costs to individuals and society must be weighed together against perceived benefits of preventing death by prolonging dying” (1988: 2143). Seemingly contradicting himself, Lundberg by no means endorses the resident’s behavior, but he acknowledges that prolonging dying is not the answer and that more must be done to ensure for patients the “best possible life.” Debates on euthanasia have waxed and waned in the United States and other parts of the world since the development of anesthesia in the mid-nineteenth century, with physicians for the most part opposed.70 The 1970s and early 1980s saw tremendous popular interest in the topic amid challenges to the authority of the medical profession and calls for greater patient autonomy and choice including in end-of-life decisions.71 Many in the United States condemned the American Medical Association’s firm opposition to euthanasia and more broadly the control physicians maintained over death as well as end-of-life decisions (Emanuel 1994).72 Published amid these debates, American writer and physician Richard Selzer’s short story “Mercy” (1980) voices a frequently overlooked perspective: that of the compassionate physician who understands the depth of the patient’s suffering and is committed to adhering to the patient’s wishes by easing death, yet who ultimately does not have the strength to do so.73 “Mercy” reveals the physician not as a power-hungry

70 Emanuel (1994) illuminates the parallels between arguments for euthanasia in the U.S. in the late-nineteenth and the late twentieth centuries. 71 This included sustained calls for embracing a model of patient-centered care, as discussed in the introduction to Part 2, although the foundational volumes by Moira Stew- art et al. (1995; 2014) on patient-centered care do not mention voluntary euthanasia or physician-assisted dying of any sort, despite the fact that in practice voluntary euthanasia and physician-assisted dying are very much matters of patient choice. This omission likely stems from the fact that most models for patient-centered and person-focused care were developed within the medical establishment, which conventionally has strongly opposed the practices. 72 As Emanuel (1994) also points out, in the United States and Britain, interest in voluntary euthanasia has flourished when struggles over physician authority have been most pronounced. 73 I discuss Selzer’s “A Question of Mercy” (1991) in Chapter 9. As with “Mercy,” “A Question of Mercy” also centers on voluntary active euthanasia, but in “A Question,” the patient’s loved ones play a much larger role. Selzer was a prolific writer who published collections of short stories and essays as well as fiction and memoirs; some of his works were adapted into plays and one into a ballet. He was an early proponent of using illness narratives as part of medical education, and Mahala Yates Stripling (2016) has appropriately described his legacy as both what he has written and “what I consider to be the radical transformation of medicine and medical education in the past twenty-five years along the line of

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Interventions in Dying 427 authority figure determined to maintain dominance over the dying, but instead as an all-too-human individual with tremendous compassion and respect for a longstanding patient who nevertheless cannot so directly bring about the patient’s death. Like jama’s “It’s Over Debbie,” Selzer’s “Mercy” is narrated in the first person by a physician caring for an individual in the last stages of terminal cancer. In “Mercy,” the patient is a man in his forties who has been suffering from pancreatic cancer for seven years whose pain, vomiting, and fatigue have slowly increased over time yet are still manageable with morphine. But as the narrator describes in the opening paragraph of “Mercy,” three days ago, the man’s pain had “rollicked out of control, and he entered that elect band whose suffering cannot be relieved by any means short of death. In his bed at home he seemed an eighty-pound concentrate of pain from which all other pain must be made by serial dilution. He twisted under the lash of it.” Here and throughout “Mer- cy,” the narrator emphasizes just how ferociously cancer is tormenting his patient. He describes the man as having spent his first night in the hospital thrashing “as though to hollow out a grave in the bed.” The narrator fears that even the grave will provide no release: “Still he meows and bays and makes other sounds like a boat breaking up in a heavy sea. I think his pain will live on long after he dies” (1980: 117). And when the man looks at him, the narrator likens his gaze to “a wound that radiates its pain outward so that all upon whom it fell would know the need of relief” (118). The narrator is acutely aware of the extreme suffering of his patient. He also knows that at the hospital, “nothing was to be done to prolong his life. Only the administration of large doses of narcotics” (117). In fact, he promises the man that he will not let the patient suffer, and he pledges to the man’s wife that he will “get rid of the pain,” even as everyone knows all too well that “there is no way to kill the pain without killing the man who owns it.” Tormented by the man’s suffering, his wife and mother beg the narrator to “do it … Do it now.” The man too twice gasps “yes” when the narrator shows him the syringes with which the narrator can “get rid of the pain.”74 And so the narrator carefully

medicine recognizing that which it can only get from the Humanities and particularly from literature.” One of Selzer’s most haunting writings is the short story “Whither Thou Goest” (1996), on a woman who reaches out to and then becomes obsessed with the man who received her husband’s heart after he died of a gunshot wound to the head. It is the act, however, of listening to her husband’s heartbeat in the chest of the transplant recipient that retrieves her “from the shadows and [sets her] down once more upon the bright lip of her life” (1998: 82). 74 To be sure, the narrator does not explicitly warn the man that the dose of morphine he is about to inject could likely kill him, and in this respect “Mercy” is even vaguer about the wishes of the patient than “It’s Over.” The major difference between the two narratives is

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428 Chapter 7 injects into the man three syringes of morphine, the “lethal dose.” All is done. In less than a minute, the narrator writes, it is done (118). But it is not over. The narrator puts his fingers on the man’s pulse as it slowly fades and then is startled to recognize that, although unconscious, “This man will not die! The skeleton rouses from its stupor…. The pulse returns, melts away, comes back again, and stays.” And the narrator is relieved: “I have not done it. I did not murder him. I am innocent!” Noteworthy here, in addition to the narrator’s rhetoric on the pulses of patient and physician beating as one, is his suggestion that had the man died, the narrator would have been guilty, a murderer, and nothing more. This makes his next move all the more unexpected. Seeing the man’s Adam’s apple bobbing slowly, the narrator thinks, “It would be so easy to do it. Three minutes of pressure on the larynx. He is still not conscious, wouldn’t feel it, wouldn’t know” (119). The narrator knows what the man wants, and so the narrator lingers, despite believing that should he “do it,” he would be a murderer. The narrator even puts his thumb and fingertips on the man’s windpipe, only to feel his pulse beating in the man’s neck and the man’s pulse beating in his, echoing the shared pulse of several moments before. The narrator looks around; there are no witnesses save for the two IV poles in the corner. But his hand wilts – he cannot bring himself to do it: “It is not in me to do it. Not that way” (119), suggesting that were there some other way, he might have been able to do it. The physician flees the room and announces to the patient’s wife and mother, who are standing outside and whom he likens to angels waiting to take possession of the body, that “he didn’t die … he won’t … or can’t…. He isn’t ready yet.” To this the patient’s mother replies, wrapping up Selzer’s short story, “He is ready … you ain’t” (119). The patient is ready. The family is ready. But the physician is not, even the physician who is fully aware of the extremes to which his patient suffers, wants nothing more than to relieve his patient of the agony, and gently gave the patient what he thought was a lethal injection. Holding the narrator back at the end is not just that he would need to ease his patient into death with his own hands, certainly more difficult than giving an injection and even less sanctioned by his profession, but also that in touching the man, he would feel their hearts beating as one.75 In the end, however, it is just as the

that in “Mercy,” the physician has been treating his patient for years and so would have had many opportunities to discuss with him his wishes, whereas in “It’s Over,” the physician is meeting the patient for the first time. Selzer’s story also more strongly implies that the patient is begging for death. 75 This solidarity is accentuated by the narrator’s remark that he not only accidentally pricks himself with the same needle he used on the man, but a drop of blood from his thumb deepens the man’s bloodstain on the gauze. Moreover, as he is leaving the room,

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Interventions in Dying 429 patient’s mother describes: the man is ready, but the physician is not, despite everything. Japanese writer and physician Nagi Keishi’s “Kihada ni furete” (木肌に触れて, Touching the Bark of Trees, 1996) is also narrated in the first person by a physician known only as Watakushi (the first-person pronoun I).76 This short story reveals the inner turmoil of a health professional faced not with a single terminal patient, as in Selzer’s “Mercy,” but with multiple terminal patients whose deaths are prolonged by currently sanctioned medical practices. The narrator is deeply frustrated with how as a practicing physician he is expected to treat people with terminal conditions, with how he is forced to compromise their quality of life and thus ultimately his own, but he also has difficulty accepting non-mainstream end-of-life practices, including both palliative care and euthanasia. Most significant, while at the beginning of the narrator’s career terminal patients preferred a less invasive approach and begged to be released from the hospital so that they could die in a more comfortable setting, especially in a clinic that offered them the option of easing into death, by the time the narrator writes “Touching the Bark” some fifteen years later, patient desires are not as clear. Watakushi claims that families prohibit their loved ones from moving to places such as the Aoyama Clinic and that patients prefer to die in major hospitals (大病院). He further elaborates that at these larger institutions, terminal patients are given aggressive therapies and that physicians who do not provide such therapies are ostracized within the profession. But “Touching the Bark” leaves ambiguous whether the patients themselves actually prefer the care given at the major hospitals, suggesting that they are not even asked, that their preferences are simply assumed. In other words, although the narrator states explicitly that as a profession, physicians insist on aggressively treating even terminal cases, he is silent regarding whether patients prefer major hospitals because they are intent on receiving aggressive therapy regardless of the side effects or, more likely, because such places increase their options. Nagi’s short story points to the importance of terminal patients being given the opportunity to receive the type of care with which

he catches a glimpse of himself in the mirror and describes his face as resembling that “of someone who has been resuscitated after a long period of cardiac arrest. There is no spot of color in the cheeks, as though this person were in shock at what he had just seen on the yonder side of the grave” (119). He could just as easily be describing his patient. 76 Nagi Keishi is a prolific writer much of whose work draws on his experiences losing his mother to tuberculosis when he was three years old, being raised by his grandmother in rural Japan, attending a newly founded rural medical school, and his grueling medical practice (Urvil 2011: 434).

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430 Chapter 7 they are most comfortable, whether it be death-hastening, death-delaying, or something in between. The narrator of “Touching the Bark” does not specify when the events he is describing take place, but they likely occur sometime between the late 1970s and the mid-1990s, a time of increased public attention in Japan to patient choice at the end of life. Nagi’s short story was almost certainly propelled by two highly publicized euthanasia cases involving a physician providing a terminally ill patient with a lethal injection: the Tōkai University euthanasia case of 1995 and the Keihoku Hospital euthanasia case of 1996.77 Two decades earlier, in 1976, Dr. Ōta Tenrei (太田典礼, 1900–1985) created Japan’s first voluntary euthanasia association, the Nihon Anrakushi Kyōkai (日本安楽死協会, Japan Euthanasia Society), and hosted the world’s first international conference on voluntary euthanasia.78 Eight years later the Japan Euthanasia Society changed its name to Nihon Songenshi Kyōkai (日本尊厳死協会, Japan Society for Dy- ing with Dignity, est. 1984), in part as a public relations move but also to ally itself with similar groups in other nations, which in 1982 had formed the World Federation of Right-to-Die Societies (Long 2005: 113).79 The term songenshi

77 Long summarizes these cases (2005: 198–199). See also Gutierrez (1997), who references additional cases in the mid-1990s. Japanese courts established euthanasia guidelines in 1962, one of which was that the patient must give consent, not the family. When the patient is unable to give consent, “It is the doctors’ legal duty to keep the patient alive” (ibid.: 409). 78 Germany’s first voluntary euthanasia society was also created in 1976; the Netherlands created such a society in 1973. Well represented at the first international conference were Japan, Australia, the Netherlands, the United Kingdom, and the United States. The term “anrakushi” (安楽死) is from the Buddhist idea of paradise, happiness without pain. 79 Current member organizations of this federation herald from Africa (South Africa and Zimbabwe), Asia (Japan), Europe (Belgium, Finland, France, Germany, Ireland, Italy, Lux- embourg, the Netherlands, Norway, Sweden, Switzerland, United Kingdom), the Middle East (Israel), North America (Canada, Mexico, United States), Oceania (Australia, New Zealand), and South America (Colombia). A number of these nations have multiple organizations that belong to the federation; Australia, for instance, has ten. See World Federa- tion of Right to Die Societies (n.d.). Even so, as Australian writer Cory Taylor (1955–2016) makes clear in Dying: A Memoir (2016), published only weeks before her death from melanoma-related brain cancer, as- sisting a person with suicide is illegal in Australia, punishable with a lengthy jail sentence, so were she to take the euthanasia drug she purchased online from China, she would need to be certain not to implicate anyone else in her death. She also asks why the laws in Aus- tralia differ from those in Belgium and the Netherlands: “I wonder, for instance, if our laws reflect some deep aversion amongst medical professionals here towards the idea of relin- quishing control of the dying process into the hands of the patient. I wonder if this aversion might stem from a more general belief in the medical profession that death represents a form of failure…. Things are not as they should be. For so many of us, death has

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Interventions in Dying 431

(尊厳死), often translated as “death with dignity,” can be used to refer to voluntary active euthanasia, indirect or double-effect euthanasia (treatment that decreases suffering but also hastens death), and dnr orders, but it more commonly signifies withholding or withdrawing futile life-prolonging therapies (passive euthanasia). Songenshi is most strongly associated with dying peacefully, naturally, and without death-prolonging treatment, and it has been by far the most preferred option in Japan, including at the time Nagi’s “Touching the Bark” was published. Only 14 percent of respondents to a 1993 Japanese survey on end-of-life issues stated that they would want life-prolonging therapy continued even if they had a painful terminal condition (ibid.: 113–115).80 Portray- ing these patients as now having become the majority, Nagi’s short story dis- torts contemporary attitudes but not contemporary practice. As Susan Long has pointed out, “Despite much consensus about songenshi and dying ‘naturally,’ it was not uncommon for physicians, patients, and families alike to want ‘everything done’ when it came to a particular crisis” (2005: 137). To be sure, this discrepancy was often at least in part a result of patients being led to believe that they had more time than they actually did, but this contradiction also sheds light on the great ambivalence of both patients and health professionals toward the types of care appropriate at the end of life. The narrator of “Touching the Bark” describes how as a newly minted twenty- seven-year-old physician at a general hospital in rural Shinshū, he met Mrs. Tamura Maki, an octogenarian with terminal cancer, who asked him directly whether her cancer was fatal. Following accepted procedure, Watakushi did not disclose to her the truth of her condition and instead attempted to reassure her by telling her simply that all was fine (大丈夫). But Tamura was insistent, demanding of the narrator quietly but firmly that he be straightforward with her so that she could switch hospitals if circumstances required. The narrator reveals that this was the third time a patient had asked him such a question and that after having been somewhat straightforward with the previous two patients (i.e., he shared with them the name of their condition although not how close they were to death), he was feeling undermined as a physician. He declares that he was fully aware there was nothing he could do for terminal cancer patients, but he had difficulty accepting their decision to leave his care, because he was the one to whom they should have been entrusting their lives. So when it came to Tamura, the narrator was evasive and told her again

become the unmentionable thing, a monstrous silence. But this is no help to the dying” (2017: 8–9). 80 Long notes that in Japan, the emphasis is more on dying peacefully than on asserting individual autonomy “as it is understood in Euroamerican bioethics” (2005: 114).

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432 Chapter 7 that everything was fine (大丈夫), that there was merely some swelling in her stomach that he would take care of. This occurred despite her imploring him to tell her the truth, since, she argued, this was about her life (自分の命にかかわる, 1997: 160). Watakushi explains in “Touching the Bark” that he was not direct with Tamura because it was a taboo (禁忌) for physicians to tell elderly patients the truth about terminal cancer. But Tamura was insistent, declaring that if the end were near, she preferred to return to her village, to a doctor there who “lets us die comfortably” (楽に死なせたくれる先生, 160). This physician – Dr. Aoyama Seiichi – ignores the “common sense” (常識) taught in medical school that it is a physician’s responsibility (つとめ) to exhaust every possible therapy, even on terminal cancer patients. In contrast, at his spa deep in the mountains, Aoyama offers a different type of care. Although uncomfortable with his decision, in the end the narrator provided Tamura with the referral letter she needed for Aoyama’s clinic, and she left the narrator’s care. Nagi’s “Touching the Bark” here depicts the physician as respecting the wishes of his patients, despite both his own severe misgivings about the treatment they are choosing and the resulting blow to his authority as their physician. A week later, determined to prove Aoyama a fraud, the narrator went up into the mountains. There he met Tamura’s new physician, a man in his seventies with a gentle persona. He learned that Aoyama offered his patients the option of euthanasia, that on their first day at the clinic he promised them that when their condition became intolerable, they would be able to die peacefully. Sug- gesting to his new patients how he would relieve their pain, he showed them a film on “general anesthesia” (全身麻酔), which depicts a patient on an operating table receiving medications that cause the patient first to fall asleep and then to stop breathing. Aoyama shared his background with the narrator: his first specialty was pulmonary tuberculosis, at a time when this disease was even more devastating than cancer in targeting people in the prime of life. See- ing his caseload drop because of developments in chemotherapy, Aoyama turned down a promotion and chose to take early retirement; he moved with his wife to her natal home, an inn with hot springs deep in the mountains. Finding the village to be without a doctor, he and his wife opened a small clinic, where he did little more than measure the blood pressure of spa visitors. One winter an elderly woman with metastatic breast cancer came to him begging that she be allowed to die there, within the natural landscape that was so familiar to her. Aoyama reassured her that when her time came he would provide her with medication that would enable her to die comfortably (薬で楽に死ねるのだよ, 170). For the next two months, every time she saw him, she made him reaffirm his promise. Ultimately, the woman passed away without

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Interventions in Dying 433 intervention. But word spread about her peaceful death, and from then on every year several terminal patients came to him hoping for the same. Based on this anecdote, the narrator suspected that Aoyama did not have personal experience with euthanasia. And Aoyama confirmed that there had been no need to perform this procedure – simply reassuring patients that he would make certain they have a comfortable death and providing them with enough morphine to alleviate their pain allowed all to die “peaceful, natural deaths” (静かに自然死されていきました, 171). To be sure, it is likely that Aoyama is making a distinction without a difference, in that if a cancer is far enough advanced, the amount of morphine necessary to alleviate pain is also potentially fatal.81 But what is important here is Aoyama’s respect for his patients and his commitment to fulfilling his promise to them to make sure their deaths are peaceful and comfortable. The narrator was moved by his conversation with Aoyama, reflecting that in his two years of practicing medicine, nearly ten of his patients had died but that he had not thought much about their deaths. Instead, based on the instruction and example of his professors and senior physicians, he had distanced himself from his patients, training himself to think of patient deaths as misfortunes befalling strangers. He had assumed that this was the proper relationship between terminal cancer patients with no future and a young physician with his future ahead of him. But speaking with Aoyama helped the narrator recognize that he had been mistaken, and he de- clined Aoyama’s invitation to visit Tamura. Watakushi remembered all too clearly that he had attempted to treat her with a cancer drug with strong side effects and that he had “tried to lock her up in the concrete walled hospital room” (176). So he could not imagine what he would have said to someone aim- ing for a very different type of death, a “humane death in nature” (自然の中で人間らしく死んでゆこう, 176). The short story “Touching the Bark” makes a strong case for easing the patient into death when this is what the patient pre- fers, rather than fighting aggressively and fruitlessly to prolong dying. Yet before long Aoyama’s lessons were lost on the narrator, who was thrilled with the new equipment and drug therapies being developed, and, forgetting about the elderly compassionate physician in the mountains, focused instead for the next decade on becoming a skilled diagnostician. The more ably he tested for cancer, the more accurate his diagnoses and the more cases he treated. But many of his patients died within five years. Witnessing his patients dying one after another becomes more than the narrator can tolerate, and he

81 As Warraich points out, some doctors have been able to use opiate prescriptions to skirt the question of helping patients die, knowing that because they can slow and even stop breathing, opiates can hasten a “natural” death (2016).

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434 Chapter 7 takes a leave of absence. While away from the hospital, he reflects on his earlier visit to the Aoyama Clinic, noting that families now tend to prohibit their loved ones from relocating to such places and that patients themselves prefer to spend their last days in major facilities. The narrator explains how these larger hospitals are staffed with physicians who prescribe therapies with powerful side effects to all their cancer patients, even those who are terminal; doctors who refuse to do so, not to mention those who promise only to relieve pain, are ostracized (村八分にされる) and deemed unworthy of the title physician (178).82 But “Touching the Bark” leaves ambiguous whether the patients themselves prefer to be treated aggressively or whether they choose major hospitals over smaller clinics because the former offer more choices, at least in theory. That is to say, going to a major hospital does not require them to be sure they want nothing but hospice care. Yet what they might not recognize is that going to a major hospital will almost certainly require them to undergo aggressive treatment. “Touching the Bark” depicts the medical profession as compelling physicians to use all available treatments regardless of what the patients prefer, believing that hospice or palliative care is “passive care” (消極的な医療) and that physicians who promote this type of care are indolent and shirking their duties. At the same time, in highlighting the medical profession’s obsession with technology and therapies at the expense of patient comfort and even consent, Nagi’s short story reveals practices such as Aoyama’s as anything but passive; physicians like Aoyama resist the compulsion to stave off death at any cost and do their best “to reclaim the end of life as a human experience instead of primarily a medical one” (179).83 Indeed, as Nobue Urushihara Urvil has argued, “Aoyama’s practice, far from being ‘outmoded,’ was a step toward the revival of

82 The narrator claims that those “who could only alleviate suffering with morphine, and provide patients with a humane end in a resplendent natural setting” were considered “outdated, defeatist, unscientific, in other words, not worthy of being called a physician” (178). 83 This is how Mooallem (2017) describes the Zen Hospice Project in San Francisco, which was founded during the aids crisis and aims “to help change the experience of dying.” The work of the Zen Hospice Project is highlighted in the Oscar-nominated film End Game (2018). Declaring the future a “dumbfounding nothingness” (あっけらかんとした無なのだ, 179) in the final lines of “Touching the Bark,” and revealing that he never wants to leave the forest, the narrator suggests that he is “giving up,” giving up at the very least his responsibility to the terminally ill. Nagi wrote frequently on the impaired physician, drawing from his own experiences with severe depression that stemmed in part from his inability to do more for his patients (Urvil 2011: 158–159).

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Interventions in Dying 435 medicine as healing” (2011: 449). Nevertheless, as emphasized at the end of the story when the narrator finds the Aoyama Clinic abandoned, the comfort provided by such a facility cannot survive in a vacuum without professional and public endorsement. Patients continue to be drawn to large hospitals, even if in many cases they would prefer to die at home or in another more intimate setting, and the larger facilities have the resources to provide patients with true choices (rather than simply two extremes), were the medical profession only to accept its responsibility to do so. In the memoir Life in the Balance, Dr. Thomas Graboys describes his struggles with Parkinson’s disease and the associated degenerative neurological condition Lewy body dementia. Whereas people with ordinary Parkinson’s generally live to their full life expectancy, Lewy body dementia drastically shortens an individual’s life and deeply affects the quality of this life (2008: xix).84 Graboys writes that he clings to the hope that the disease will progress slowly but that he fears losing control of basic bodily functions and being unable to recognize his loved ones. He contrasts his dementia with his late wife’s terminal cancer; while her death was “a relative near-term certainty,” his own could be “a long, drawn-out process [over many years] with no distinct ending.” And he wonders “What will become of me?” (164–165). Graboys explains that he is not afraid of dying. Instead, “I am afraid of living with a mind that has been erased” (167). And so he ponders his options:

How exactly – both medically and legally – does one go about ending a life when the body is intact but the mind is gone? … Hospitalized patients with terminal diseases sometimes have their passage eased by sympathetic doctors under the guise of making the patient more comfortable, regardless of whether assisted suicide is legal. I have done that myself on very rare occasions, when my patients were already close to death and their suffering had become pointless. But what if I am of unsound mind but still sound of body, at the point where I can say emphatically today that I would not wish to go on? You cannot check into a hospital seeking to hasten death. You cannot enlist a friend or colleague in the process without exposing them to enormous legal risk. (166–167)

Graboys speaks candidly and without hesitation about easing patients into death and laments that this option will not be available to him. Those outraged by “It’s Over, Debbie” might argue that what Graboys did to his patients was no

84 For another insightful account of life with Lewy body dementia, see Alex Demetris’s graphic novel Dad’s Not All There Anymore (2015).

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436 Chapter 7 less horrific, or that what Graboys did could have been even more morally rep- rehensible, considering that the physician remains silent about whether his patients had even asked him to end their lives.85 Narratives such as “It’s Over Debbie,” Selzer’s “Mercy,” and Nagi’s “Touching the Bark,” as well as Graboys’s memoir, depict physicians who truly want to do both what individual patients desire and what they believe is best or at least is appropriate for that person. When the two perspectives are in harmony – as suggested in “It’s Over Debbie” and Life in the Balance – the decision can be simple, at least for the individual physician, and the patient’s desire is respected. But when there is discord – as is clear in Selzer’s “Mercy” and Nagi’s “Touching the Bark” – even the most compassionate health professional can be at a loss as to how to fulfill the patient’s wishes and create the conditions necessary so that the patient can lead a life the patient believes worth living.

2 Conundrums of Cure

One of the greatest challenges facing both the patients and the health professionals in the texts analyzed above is that there is virtually no hope for improvement, much less cure, for the particular health conditions of the patients. These narratives negotiate the types of care available for people with serious health conditions who believe they no longer have or soon will not have a life worth living. Other narratives grappling with interventions in dying examine more closely how cures of fatal or potentially fatal conditions are discovered, as well as the consequences, potential and actual, of their implemen- tation. As discussed throughout Part 2, curing is not necessarily equivalent to healing. James Carroll is one of many to succinctly capture the difference: “To cure is to remove disease. To heal is to make whole, and wholeness can belong as much to the infirm as to the healthy” (2013: 91).86 But curing obviously can

85 Nowhere does Graboys suggest that these patients have begged him to keep them alive as long as possible. Graboys was an exceptionally caring and compassionate physician, as described in the introduction to Part 2, and it is most unlikely that he would have eased a patient into death as he describes in Life in the Balance without knowing that this is what they truly wanted. 86 Research scientist Nathalia Holt explains that scientists speak of two kinds of cure: sterilizing cure and functional cure. With a sterilizing cure, there is no trace of the disease; with a functional cure, the disease can be detected only by the most sensitive tests. With either cure, a person does not need medication or therapy, and they do not need to worry about the disease relapsing (2014: xix). With some diseases, including Lyme disease, tests do not show conclusively whether the infection has in fact been cured (Specter 2013).

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Interventions in Dying 437 be a vital part of healing, and often but by no means always, the more people who are affected by a condition, and the more serious the condition, the greater the demand for a cure.87 And so, finding a cure for disease, and curing disease, have in many instanc- es become obsessions. Sometimes these obsessions prove deadly. Among the most egregious and highly publicized examples of unethical human research were the medical atrocities committed by the Nazis, some of which were done in the name of curing disease.88 Less well known are the many compromises

87 The major exception, as initially was true of hiv/aids, is when the disease affects primarily stigmatized or otherwise disadvantaged communities. Another exception, albeit rarer, is when a patient or more likely their family invests heavily in research for a cure for a rare disease. One example is the Crowley family, as depicted in Geeta Anand’s The Cure: How a Father Raised $100 Million – And Bucked the Medical Establishment – In a Quest to Save His Children (2006), adapted into the film Extraordinary Measures (2010) starring Harri- son Ford (1942–). John Crowley (1967–) has also published a memoir, Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy (2010). Two of the Crowley children were born with the genetic disorder known as Pompe disease, a glycogen storage mal- function that leads to progressive muscle weakness and ultimately death. Their father John, a biotechnology executive, devoted years of his career to facilitating an effective treatment, if not a cure, for this disease. See also Gina Kolata’s Mercies in Disguise (2017), which tells the story of the Baxley family of Hartsville, South Carolina, and their struggle with the rare neurodegenerative disorder Gerstmann-Sträussler-Scheinker syndrome, and Joselin Linder’s The Family Gene (2017), which discusses her family’s battle with a “private mutation,” a genetic variant distinctive to their family. A recent novel on attempts to cure a serious rare disease in the family is American writer Eileen Pollack’s (1956–) A Perfect Life (2016), which features a young researcher, Jane Weiss, obsessed with finding the genetic marker for Valentine’s disease, a neurodegenerative disorder that killed her mother and of which she might be a carrier. Weiss discovers the genetic marker, but when the novel ends fifteen years after this discovery, she admits that there is still so much that is not known about the disease and wonders whether one of her colleagues might be the first to discover the cure. Although Weiss is not a carrier, her husband and stepson are, and she doubts that there is anyone who can “be as devoted and obsessed as I am” in searching for a cure and so vows to work even harder (2016: 373). In the acknowledgments, Pollack speaks of being inspired by Alice Wexler’s (1948–) memoir Mapping Fate (1996), the story of her family’s search for a cure for Huntington’s disease, a debilitating hereditary disease that took their mother’s life. Notably, as in Ghosh’s, Ariyoshi’s, and Wang’s novels, all of which address the Western appropriation of Asian medical discoveries, Harrison Ford’s character in the film Extraor- dinary Measures, Dr. Robert Stonehill, is based on Taiwanese scientist Dr. Chen Yuantsong (陳垣崇), who developed the treatment for Pompe disease while serving as the chief of medical genetics in the Department of Pediatrics at Duke University. 88 Others focused on developing forms of therapy and prevention. See, for instance, LaFleur et al.’s volume Dark Medicine (2007), a comparative study of unethical medical research and its aftermaths in Nazi Germany, Japan (especially Unit 731 [731部隊], developed by the Japanese army during World War Two and based in Harbin, Northeast China), and the

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438 Chapter 7 and sacrifices, human and nonhuman, that have plagued much medical research.89 Three novels that illuminate this phenomenon are Japanese writer Ariyoshi Sawako’s (有吉佐和子, 1931–1984) Hanaoka Seishū no tsuma (華岡青洲の妻, The Wife of Hanaoka Seishū, 1967), Indian writer Amitav Ghosh’s (1956–), The Calcutta Chromosome: A Novel of Fevers, Delirium and Discovery (1996), and Chinese writer Wang Jinkang’s (王晋康, 1948–) novel Siji konghuang (四级恐慌, Level-Four Panic, 2015). These texts reveal the potentially high price of cure, and they caution against single-minded pursuits of cure. Ariyoshi’s, Ghosh’s, and Wang’s novels by no means advocate that resources not be devoted to curing human populations of deadly diseases. But they do alert readers to the potential lethality of unchecked obsession with cure.

2.1 Sacrifices in Discovering and Developing Cures Ariyoshi’s The Wife of Hanaoka Seishū and Ghosh’s The Calcutta Chromosome might seem a somewhat unlikely pair. The former is a historical novel about the family of Hanaoka Seishū (華岡青洲, 1760–1835), the Tokugawa-era Japanese pioneer of anesthesiology who was the first person in the world to successfully perform surgery under general anesthesia (Dote et al. 2017), while the latter novel is a futuristic medical thriller based loosely on the life of Sir Ronald Ross (1857–1932), who received a Nobel Prize in 1902 “for his work on malaria, by which he has shown how it enters the organism and thereby has laid the foundation for successful research on this disease and methods of combating it” (The Nobel Prize). But not only do Ariyoshi’s and Ghosh’s works of global literature draw attention to the frequently neglected role of non-Western societies in

United States (including human radiation experiments funded by the Atomic Energy Commission), with special attention to how such research was rationalized. In Doctors of Empire, Hoi-Eun Kim examines medical connections between imperial Germany and Meiji Japan but argues that in no way did connections between doctors and the state or between Germany and Japan “predetermine or dictate the downward spiral of Japanese doctors into the pit of amoral medical research” (2014: 156). Medical abuse of vulnerable groups is well documented. Examples from the United States include the Tuskegee Syphilis Study, the use of servicemen to test lsd, and the live hepatitis virus given to mentally disabled children at Willowbrook. Susan Reverby observes how the Tuskegee Study is at once “America’s metaphor for racism in medical research” and so much more (2000: 2). 89 This includes marginalizing patients in the treatment of their own conditions. Hoi-Eun Kim describes how in Japan the primacy given to the research dimension of medical science meant that caring for patients was only a secondary concern (2014: 154). John Bowers argues that the late nineteenth-century Japanese were drawn to the strong emphasis in German medicine on fundamental research as opposed to establishing compassionate doctor-patient relationships. This was in contrast with the English system, which stressed care of the patient (1980: 158).

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Interventions in Dying 439 attaining “Western” medical milestones; they also reveal the high potential cost of such research to human communities and the natural world alike.90 The Wife, which has been translated into nearly a dozen languages, spans seven decades from the late eighteenth through the early nineteenth centuries.91 This novel first portrays a male doctor’s reward for curing a previously incurable disease as receiving his female patient’s hand in marriage. More sin- isterly, the novel depicts the physician, Hanaoka Unpei (later Seishū) – the child of this marriage and the pioneer of general anesthesia – as initially a man of high standards who then takes advantage of a family rivalry and grief over the loss of a loved one to conduct human trials of his experimental therapy, tsūsensan (通仙散, also known as mafutsusan, 麻沸散).92 The Wife reveals

90 Ariyoshi and especially Ghosh have been translated worldwide. Their names are familiar to scholars of literature and the environment. Ariyoshi is best known for her two-volume Fukugō osen (複合汚染, Compound Pollution, 1975), a novel that addresses the various forms of pollution instigated by drastic increases in Japanese consumerism. This book emphasizes that although pollution is often perceived as occurring in isolated bursts and affecting only small groups of people, it in fact threatens everyone; contaminated air, water, and soil jeopardize the health of rich and poor, urban and rural, young and old. Even more prominent on the world environmental stage is Amitav Ghosh, whose The Hungry Tide (2004) has become standard fare in postcolonial ecocritical scholarship, and whose The Great Derangement: Climate Change and the Unthinkable (2016) is becoming so as well. The Hungry Tide depicts an extreme instance of government conservation policies harming local peoples, highlighting the potentially catastrophic human costs of prioritizing animals and the nonhuman more generally. In The Great Derangement, Ghosh laments the failure of fiction writers, including himself and even those who are environmental activists, to grant climate change a more central position in their work. He imag- ines that after rising sea levels have made some of the world’s major cities uninhabitable, people will look back and conclude that “ours was a time when most forms of art and literature were drawn into the modes of concealment that prevented people from recognizing the realities of their plight … [Ours likely] will come to be known as the time of the Great Derangement” (2016: 92). Ariyoshi’s The Wife and Ghosh’s The Calcutta Chromosome devote far less space to the health of what is ordinarily considered “nature” (physical landscapes and the plants and nonhuman animals that inhabit them) than do Compound Pollution and The Hungry Tide. The discussion of Ariyoshi and Ghosh is based on Thornber (2013b). 91 The Wife has been translated into English (1978), French (1981), Portuguese (1983), Bulgar- ian (1985), Thai (1985), Italian (1986), German (1990), Dutch (1991), Malay (1992), and Nep- alese (2001). Ariyoshi almost immediately adapted The Wife into a play, one that quickly was translated into Chinese and performed in China. For more on the Chinese perfor- mances of The Wife see Inui Ichirō (1990: 171). The Wife was also adapted into a Japanese film of the same title. 92 Hanaoka combined six types of medicinal herbs that had an anesthetic effect to create mafutsusan (Dote 2017).

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440 Chapter 7 just how rapidly ethical lines can be crossed in the pursuit of cure, even by individuals who initially demonstrate compassion and restraint. The Wife opens with an eight-year-old Imose Kae enchanted by the gorgeous Hanaoka Otsugi (née Matsumoto, mother of Hanaoka Seishū). The narrator explains how Otsugi had become part of the Hanaoka family. Many years before, hearing that the wealthy beauty had been attacked by a serious skin disease, one that baffled the area’s leading physicians, Hanaoka Naomichi (father of Hanaoka Unpei/Seishū) declared to the parents of the young lady, Matsu- moto Otsugi, that he would heal their daughter if he could have her hand in marriage. Desperate, the Matsumotos agreed. Naomichi cured Otsugi, and her parents consented to the marriage as promised. The Wife remains silent regarding precisely how Naomichi cured Otsugi, declaring only that he did so and with greater success than anyone had anticipated, and that this indebted her family to his.93 Ariyoshi’s novel quickly turns to the next generation. When Imose Kae comes of age, her father succumbs to family pressure and eventually agrees to send her to the Hanaoka household to wed Naomichi and Otsugi’s son Unpei (Seishū), albeit in absentia, since he is following in the footsteps of his father and is in Kyoto studying medicine. During Kae’s first evening with the Hanao- kas, Unpei’s father, Naomichi, impresses on her the importance of the physician’s calling and praises his son effusively, remarking that Unpei is destined for greatness. And when Unpei returns from Kyoto, he is revealed to be at least as arrogant as his father. Declaring that he aims to be the Hua Tuo (華佗) of Japan, Unpei asserts that he wants to become “a physician who can cure things that others cannot cure” (1967: 61).94 In particular, Unpei hopes to develop an anesthetic that would allow him and other surgeons to operate successfully on patients with breast cancer, removing tumors before they become malignant.95

93 Ironically, however, the narrator notes that “Naomichi should have earned a reputation as an exceptional physician for completely curing a condition that was said to be incurable. But this didn’t happen, in part because he was a braggart and thus was looked on unfavor- ably by the locals, and in part because his wife overshadowed him with an indescribable beauty and brightness” (4). In other words, Naomichi’s control over his wife was somewhat tempered. 94 The physician Hua Tuo (ca. 140–208) is credited as the first in China, and the world, to use anesthesia during surgery. 95 Mastectomies were performed before the development of anesthesia. British novelist Frances D’Arblay (1752–1840, née Frances Burney) was the most eloquent recipient of the procedure; she described her 1811 operation in graphic detail in a letter to her sister written the following year. The tumor in D’Arblay’s breast was believed at the time to be can- cerous, had grown to the size of a man’s fist, and had nearly crippled her. But given that it

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Interventions in Dying 441

True to his word, Unpei devotes the next years to developing anesthesia. His research is interrupted by a series of natural disasters plaguing Kishū, the Hanaoka family’s home province on the Kii Peninsula in southern Japan, and neighboring provinces. Unprecedented deluges lead to crop failure and famine, and for five years epidemics and starvation ravage the country, killing hundreds of thousands. So in addition to his anesthesia research, Unpei – who gradually begins to be known as Seishū – becomes deeply involved in caring for the people harmed by these natural disasters and their aftermath; he is gen- erous to a fault, treating many patients free of charge.96 After the famine recedes, Seishū combines his research with a thriving practice, his reputation having spread widely. But then his sister Okatsu falls ill, and it soon becomes apparent that she has advanced breast cancer. As her condition deteriorates and her pain becomes more severe, she pleads with her brother for something to relieve her suffering. In particular, she asks for the ointment that Seishū has developed and uses successfully as a local anesthetic in operations to remove bone tumors. Okatsu knows that her cancer is inoperable, and she intends to swallow the ointment to hasten her death. When Seishū refuses her request, warning that the ointment is lethal if swallowed, Okatsu – likely thinking, the narrator reveals, of the animals that have died as a result of her brother’s experiments – begs Seishū to give her something that will let her die in her sleep. Seishū refuses this request as well, declaring, “The physician’s duty [使命] is to save lives [命を助ける]. No matter how much the patient is suffering, the physician cannot provide medication that will result in death” (111). Okatsu tries again, this time asking Seishū to operate on her, to even cut into her breast, but he refuses, much as it pains him deeply to witness

did not metastasize – D’Arblay lived for nearly three decades following the operation – it likely was not malignant (Selzer 1995: 16). Japanese writer Izumi Kyōka’s (泉鏡花, 1873–1939) popular short story “Gekashitsu” (外科室, The Surgery Room, 1895) features a wealthy woman so frightened of what she might say while under anesthesia that she refuses it for the operation on her breast. Un- moved, her physician commands his five nurses to hold her down. They do so despite her protests, since “their duty was to obey the doctor’s orders without questioning, allowing no emotions to interfere” (1976: 67). Ultimately, both the woman and the surgeon (who it is revealed had met and been attracted to each other many years before) kill themselves. Also notable about “The Surgery Room” is how it features men holding down a woman in a medical setting, not unlike Watanabe’s description in Flower Burial, discussed in the previous chapter. 96 The Wife leaves unstated how many people Unpei cures. Although he asserts to a visiting pharmacist who describes a sweeping and strange disease where bones decay and pro- trude that he would be able to cure this condition (85), Unpei is not depicted as actually doing so.

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442 Chapter 7 his sister’s anguish. Later, when Seishū and Okatsu’s mother, Otsugi, asks why he cannot just let his sister use the painkiller as a compress, Seishū accuses his mother of wanting to kill her own daughter. Seishū knows that given the chance Okatsu will consume the ointment, and so he does not trust her near it. Seishū explains that Okatsu’s cancer is too advanced to operate; she might have a chance if new anesthetics were available, but as becomes apparent with the death of the brain-damaged test subject cat Byakusen not long before Okatsu’s own, Seishū’s experimental anesthesia is far from ready to be used on human beings. Ariyoshi’s novel sets up Seishū as a stickler for propriety and professionalism. Not only has he devoted considerable resources to saving lives during the famine, but he refuses to consider using his sister in his medical research, even if doing so would both advance the development of anesthesia and bring her the relief for which she begs. Unlike the physicians discussed earlier in this chapter, for Seishū, assisted suicide, not to mention euthanasia, is out of the question. At the same time, his obsession with developing an effective anesthesia allows him to take advantage of the deep rivalry between his wife, Kae, and his mother, Otsugi, a competition that only grows more intense in the years following the death of Okatsu. This obsession with cure also enables Seishū to overlook the extent to which the grief of his mother and later his wife over losing a child cast doubt over their pleas to be used as test subjects.97 After years of experimenting, Seishū eventually develops an anesthesia that has fewer side effects on the dogs and cats on which he experiments, but he laments to his family that he has no way of knowing how this therapy will affect people. Otsugi offers herself as a test subject, commenting that only a fool would be unable to see that he needs such a volunteer, and that as his mother, she understands him better than anyone else and therefore is best positioned to do this for him. Kae immediately picks up on Otsugi’s scheme to establish herself as the dominant woman in Seishū’s life, and she begs Seishū to experiment on her instead. The two women argue about who would be the better test subject, each flinging barbs at the other – the mother claiming that she has lived a full life and that her daughter-in-law still needs to produce an heir, and the wife asserting that she could never allow an older woman such as Otsugi to be subjected to such an ordeal. Seishū misses none of the double entendres and demands that the women stop, but they persist, wearing Seishū down, until finally he announces that he will test the anesthesia on both of them. In a

97 The rivalry between Kae and Otsugi is highlighted in the title of the French translation of Ariyoshi’s novel: Kaé ou les deux rivales (Kae or The Two Rivals).

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Interventions in Dying 443 surprising turn of events, the man who years before so adamantly resisted his dying sister Okatsu’s pleas capitulates here to his squabbling mother and wife. To be sure, Seishū gives Otsugi a placebo that unbeknownst to her has only 10 percent of mandarage and none of the much more dangerous byakushi or uzu medicinal herbs that are part of his formulation. The experiment goes smoothly. But Kae, who recognizes that Otsugi was given just a placebo, wor- ries that her husband will be asked to use anesthesia in an actual operation, and she continues to plead with him to test the real drug therapy on her, telling him that she will do anything to protect his reputation. In the end, he succumbs to this pressure. The English translation of The Wife goes so far as to assert, “Gradually scientific exigencies and personal ambitions surmounted human considerations” (1978: 122).98 The experiment is successful, although Kae remains unconscious for three days and endures a long recovery. In the following months and years, Seishū continues his research, again gives his mother a placebo, and the rivalry between Otsugi and Kae persists. After Seishū and Kae’s daughter, Koben, dies unexpectedly from pneumonia, Kae is so dis- tressed that she begs her husband to use her again as a test subject: “Having lost her only daughter Koben, her own body had no worth, and she had no hesitation about giving her life to anesthesia research…. Perhaps repeating the experiment would distract her from her sorrow” (1967: 174).99 Seishū is reluc- tant, still feeling remorseful (後悔) for the strong dosage he had given his wife two years before, but yet again, his desire to test the actual anesthesia over- powers his misgivings. He seems oblivious to Kae’s desperation and is unable to appreciate fully her suffering; he administers the drug to satisfy his own scientific zeal. This time, the anesthesia permanently blinds Kae. Ariyoshi’s novel depicts Seishū as distraught, noting, “His heart at last returned from being a physician to being a husband” (183). As a physician, he cared almost entirely about finding a cure, and as a husband he must confront the consequences of this obsession. Seishū makes certain that Kae and the children the couple have together in the following years want for nothing. And he becomes much more conscious of his limitations as a physician. Despite his many small successes, Kae’s blind- ness, compounded by his inability to do anything for his sister Koriku, who dies in agony from hemangiosarcoma (an extremely rare but rapidly metastasizing cancer for which there is no effective treatment even today), makes him much

98 This sentence does not appear in the Japanese. 99 Kae also is horrified to discover that her husband is himself using a reduced dose of the anesthesia he is developing as a sleeping aid.

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444 Chapter 7 more cautious.100 Finally, after becoming convinced that the medication is ready, shortly after the turn of the nineteenth century, he uses mafutsusan to anesthetize a patient with breast cancer who has begged him to operate on her.101 The surgery is successful, and the narrator of The Wife announces proud- ly that this was not just a great personal victory for Seishū. His achievement also represents a great leap forward for medicine, the narrator reports, adding that it was the first operation anywhere in the world to be performed under general anesthesia, occurring thirty-seven years before American surgeon Dr. Crawford Long (1815–1878) operated using ether and forty-two years before British physician Dr. James Simpson (1811–1870) operated using chloroform.102 Seishū’s reputation soars, and students and colleagues alike flock to him. Even Sugita Genpaku (杉田玄白, 1733–1817), Japan’s most famous scholar of West- ern medicine and nearly thirty years his senior, asks for his guidance. In two pages Ariyoshi’s novel skims over the final thirty years of Seishū’s life, noting that the tale and then legend of the blind and retiring Kae grows consid- erably. The Wife concludes with the observation that after Kae and her husband die (in 1829 and 1835, respectively), his tombstone is so large that it blocks out completely both hers and his mother’s. This novel celebrates the fact that Seishū developed mafutsusan and extols his growing fame, but it notably remains almost silent on how people actually benefit from this anesthetic. Seishū’s grave is prominent, but just as his tombstone overshadows those of his wife and mother, so too is his legacy overshadowed – at least in the novel – by the sacrifices made by Kae. The Wife by no means depicts Seishū as a heartless villain concerned only with professional success. But this is precisely the point: Ariyoshi’s novel emphasizes how readily even caring physicians, individuals truly concerned with the wellbeing of their patients, can have their caution overpowered by an obsession with cure. Amitav Ghosh’s widely translated The Calcutta Chromosome likewise features an obsessive quest to eradicate disease and highlights the non-Western

100 Seishū rarely visits his dying sister. The narrator comments ironically: “Perhaps, since he could not help with the hemangiosarcoma, it was too painful to watch his own flesh and blood perish from this disease. But more likely he was too preoccupied with the patient on whom he intended to perform surgery, with going over the old medical books and re- viewing the records of his other patients on which he’d performed surgery” (203). 101 The historical physician Hanaoka Seishū performed a mastectomy on Kan Aiya on Octo- ber 13, 1804 using general anesthesia (Dote 2017). 102 Europeans and Americans were often startled to learn of Japan’s medical achievements in areas they had assumed themselves predominant. In 1916, the American Red Cross was dismayed to discover that while it had only 31,000 members, Japan’s Red Cross numbered 1.8 million (Konishi 2014: 1129).

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Interventions in Dying 445 foundation of Western medical “discoveries.”103 Postcolonial science fiction at its finest, Calcutta Chromosome is the fantastical account of Sir Ronald Ross’s discovery of the source of malaria, or at least his discovery of a community already possessing this knowledge. This finding paved the way for preventive measures and cures for one of the world’s oldest, most widespread, most persistent, and deadliest diseases, which, together with hiv/aids and tuberculosis, is one of “the three major killers” (Osterholm and Olshaker 2017: 98).104 Just as significant, and unlike Ariyoshi’s The Wife, Ghosh’s novel contrasts the relative impotence of human beings vis-à-vis disease with their ability to reshape landscapes on a vast scale. In so doing, the novel not only depicts people as having radically reshaped the planet, particularly as part of imperialist proj- ects, but also points to the uneasy relationship between ameliorating disease and destroying nature. Calcutta Chromosome posits efforts at eradicating disease as ultimately complicit in human destruction of environments. Ghosh’s novel begins early in the twenty-first century with Antar, an Egyp- tian employee of the International Water Council (iwc), based in New York, whose computer one day extracts the ID card of an Indian man named Muru- gan (also known as Morgan). Murugan, a former employee of LifeWatch (an organization that has since been absorbed into the iwc), vanished in Kolkata

103 Calcutta Chromosome has been translated into more than a dozen languages, in Europe, East and Southeast Asia, and the Middle East. 104 Malaria is a mosquito-borne disease that begins with fever, chills, and flu-like symptoms. If left untreated, people can develop severe complications and die, of liver or kidney failure, severe anemia, respiratory distress, or shock (Centers for Disease Control and Preven- tion 2019b; Baird 2015). Malaria remains a serious global health concern, especially in Af- rica and certain parts of Asia and South America. In 2015 alone, the global tally reached 212 million cases and 429,000 deaths, with the vast majority of deaths of children occurring in sub-Saharan Africa. Antimalarial drug resistance together with mosquito resistance to insecticides continue to challenge efforts to eliminate the disease, and fewer than half of the world’s ninety-one malaria-affected countries are on track to achieve the stated milestone of a 40 percent reduction in case incidence and mortality by 2020 (World Health Organization 2016b: v). Despite the best efforts of researchers, and although new combination therapies could become available by the early 2020s (Ives and McNeil 2017), there is no malaria vaccine. Nosten argues that given these realities, the focus should shift from staying one step ahead of the parasite that causes malaria by continuing to develop new medications, to eliminating the parasite itself, concluding, “The more money we throw at malaria, the bigger the problems get. We have the science to defeat malaria. We just have to act, before it defeats us” (2014). On the other hand, the involvement of the Bill and Melinda Gates Foundation in fighting malaria has resulted in cases dropping approximately 25 percent between 2004 and 2016, and deaths dropping by 42 percent over this period (Osterholm and Olshaker 2017: 101). For more on literature and malaria and especially the relationship with imperialism, see Ikoku (2013, 2016).

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446 Chapter 7 in 1995 while following the trail of Sir Ronald Ross and attempting to learn more about his malaria research. Looking into Murugan’s disappearance, An- tar discovers his predecessor’s conviction that Ross’s efforts had been infiltrat- ed and his discoveries engineered by members of an Indian “counter-science” group who believed they could transfer their chromosomes into another individual and gradually take over and even become that person.105 Calcutta Chro- mosome depicts this cult as having long been aware that the Anopheles mosquito causes malaria and thus manipulating Ross’s “discovery” – including sending him test subjects who will confirm his hypotheses – to facilitate their own breakthrough.106 As Claire Chambers has argued, “This allows Ghosh to make the important point that science, technology, and medicine were not conveyed to India by the British in a one-way process of transfer, but were in fact involved in a complex series of cross-cultural exchanges, translations, and mutations…. Ghosh problematizes the universalist claims of Western science and questions the widespread tendency of historians to view scientists as ge- niuses who work alone” (2003: 57). Drawing heavily from Ross’s Memoirs, which were published in 1923, Ghosh rewrites the imperial narrative to expose the extent to which the British medical researcher depended on the Indian counter-science group. These individuals were his guinea pigs; Ross is depicted as caring solely about results and having little concern either for the people on whom he is experimenting or for the validity of his experiments.107 But the counter-science group was also his master manipulator, essentially handing him his famous breakthrough, en- abling him to surge ahead, in the words of Antar, of “the Laverans and the Kochs and the Grassis and the whole Italian mob; he beat the governments of the US and France and Germany and Russia; he beat them all. Or that’s the of- ficial story anyway: young Ronnie, the lone genius, streaks across the field and runs away with the World Cup” (1995: 49).108 Calcutta Chromosome likewise

105 In contrast to Ariyoshi’s The Wife, where the chronology is relatively straightforward, Cal- cutta Chromosome leaps back and forth in time, fuses disparate eras, and interweaves several incongruent narratives. 106 Ghosh’s novel is vague on the precise connection between malaria and chromosomes, the narrator indicating only that an Indian “counter-science” group long had known about the connection between malaria and the female Anopheles mosquito and that it used Ross to its own advantage. 107 Although Ross can hardly be said to be compassionate with his test subjects, he is not depicted as harming them as Hanaoka Seishū does in Ariyoshi’s The Wife. 108 As Murugan similarly shares with Antar, “What gets me about this scenario is the joke. Here’s Ronnie, right? He thinks he’s doing experiments on the malaria parasite. And all the time it’s he who is the experiment on the malaria parasite. But Ronnie never gets it; not to the end of his life” (67).

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Interventions in Dying 447 highlights the efforts made to suppress the discrepancies in Ross’s accounts that Murugan discovers: Murugan’s articles on this topic are rejected by pub- lishers, and the History of Science Society turns down his proposed panel on early malaria research for the society’s next convention and eventually “took the unprecedented step of revoking his membership,” explicitly barring him from attending any further meetings (31). Murugan explains to Antar why it was in the mid-nineteenth century that the most prominent Western scientific communities, with the notable exception of the British, became so concerned with this disease: “This was the century when old Mother Europe was settling all the Last Unknowns: Africa, Asia, Australia, the Americas, even uncolonized parts of herself. Forests, deserts, oceans, warlike natives – that stuff’s easy to deal with when you’ve got dyna- mite and the Gatling gun; chicken-feed compared to malaria” (47).109 Murugan describes for Antar how malaria attacked the very settlers who were “dealing with” forests, deserts, oceans, and native peoples: “Don’t forget it wasn’t that long ago when pretty much every settler along the Mississippi had to take time off every other day for an attack of the shakes. It was just as bad in the swamps around Rome; or in Algeria, where French settlers were making a big push” (47). The newcomers are unsettled by malaria, forced to take time off from settling (i.e., destroying) the land and its indigenous occupants. In other words, by striking down those who destroy nature, malaria at least temporarily protects

109 The genre of science fiction allows Antar to converse with Murugan even though the former lives in early twenty-first-century New York and the latter in mid-1990s Calcutta. In the ninth chapter, the two meet and talk about Ross. Murugan, who has read everything the obsessively prolific researcher has written, describes to Antar his background and activities in Calcutta. Calcutta Chromosome makes clear the power of this disease, describing it as “probably the all time biggest killer among diseases. Next to the common cold it’s just about the most prevalent disease on the planet … Malaria’s been around since the big bang or there- abouts, pegged at about the same level all along. There’s no place on earth that’s off the malaria map…. We’re not talking millions of cases here; more like hundreds of millions. We don’t even know how many, because malaria’s so widespread it doesn’t always get on the charts. And besides, it’s a master of disguise…. And even when it’s properly diagnosed it’s not like quinine is always going to get you home safe. With certain kinds of malaria you can mainline quinine all the livelong day and come nightfall you’ll still be gathering freez- er burn in the mortuary. It’s only fatal in a fraction of all reported cases but when you’re dealing with hundreds of millions, a fraction adds up to the population of an economy- size country” (47). Murugan here reveals not only how destructive to human populations malaria has been throughout history but also how even a century after Ross’s discovery, there still is no cure for many forms of the disease. As the narrator comments, at the time Ross was awarded the Nobel Prize, it was assumed that his discovery would lead to the eradication of malaria, but this expectation has sadly been unmet (30).

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448 Chapter 7 nonhuman landscapes. Calcutta Chromosome draws attention to how malaria helped contain the damage Europeans inflicted on colonial populations. Ef- forts to control malaria, therefore, ultimately facilitated the destruction of much of the planet at the hands of the Europeans.110 Ghosh’s novel here implies an extreme position and one not necessarily advocated by Ghosh himself. In The Great Derangement (2016), Ghosh argues that – given precolonial Asian reliance on coal – if the major twentieth-century empires had been dismantled earlier, “the landmark figure of 350 parts per million of carbon dioxide in the atmosphere would have been crossed long before it actually was” (110).111 In other words, had European empires not prevented Asian societies from continuing to develop their (Asian) fossil-fuel economies, Asians would have contributed much more significantly to the current climate crisis. But at the very least, Calcutta Chromosome suggests that disease spares the planet even greater anthropogenic destruction, both imperial and local, and the novel implicates efforts to cure disease as facilitating this devastation.

2.2 The Paradoxical Precariousness of Cure Chinese science fiction celebrity and former engineer Wang Jinkang’s Level- Four Panic even more strongly implicates cure in human and nonhuman destruction. This novel focuses on the paradoxical precariousness of a world

110 Whereas in the English version of the novel the settlers’ attacks on the land are significantly disrupted by malaria’s attacks on the settlers, the Japanese version appears to less- en slightly the grip of this disease on those who destroy many of the world’s “final enigmas.” 111 In The Great Derangement, Ghosh emphasizes the importance of examining climate crisis through the prism of empire and Asia, but he also criticizes the Western world’s “enormous intellectual commitment to the promotion of its supposed singularity,” pointing out that it was not a lack of industriousness or ingenuity or entrepreneurial spirit that prevented the growth of the fossil fuel industry in India. Instead, it was imperialism that assured Western powers took control of local resources and in many cases stalled local ambitions (103, 107). Ghosh also credits Asian figures of “extraordinary moral and political authority” such as Mahatma Gandhi (1869–1948) with hindering Asian industrialization, citing Gandhi’s warning in 1928 that if India with its large population mimicked Western economic exploitation, “It would strip the world bare like locusts” (111). For its part, many Western writings on malaria blame local communities for spreading the disease. Ikoku cites from Kenya medical officer A.R. Paterson’s 1935 public health pamphlet, “A Guide to the Prevention of Malaria in Kenya”: “Who then are the people from whom mosquitoes usually become infected? In AFRICA it is, as a rule, from African natives…. If we could [ensure that as much as possible no Africans are allowed to live near houses occupied by ‘Europeans’], would we not have taken an important step towards ensuring that no infected mosquitoes might bite ourselves, and, very particularly, our children?” (2016: 225).

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Interventions in Dying 449 cured of smallpox, one of history’s most deadly diseases, having killed more than a billion people and altered the appearance of many more across thousands of years (Osterholm and Olshaker 2017: 132). Despite this history, along with Rinderpest, smallpox is one of only two diseases to have been deliberately eradicated.112 Smallpox is an infectious disease caused by the variola virus, which generally is spread by face-to-face contact and enters the human body via the respiratory tract. Early symptoms are fatigue and high fever, followed by a distinctive rash on the face, arms, and legs; these spots fill with clear fluid, then pus, ultimately forming a crust that eventually dries up and falls off (World Health Organization 2016a). The precise origins of smallpox are unknown, but it is generally believed that Egyptian Pharaoh Ramses v (d. 1157 b.c.e.) suffered from the disease.113 It is thought to have spread from Africa to India and later to China, where healers discovered in the tenth century that inserting a small quantity of smallpox pus into the skin could confer immunity, as well as in the sixth century to Japan, and during the Crusades to Europe, if not long before.114 European colonization spread smallpox to the Americas in the early sixteenth century.115 As Alasdair Geddes observes, by the mid- eighteenth century, it was “a major endemic disease everywhere in the world with the exception of Australia” (2006: 152). Although English physician Edward Jenner (1749–1823) developed a vaccine for smallpox at the turn of the nineteenth century, and improvements continued to be made in inoculations, the disease remained rampant. Smallpox was a priority of the who since its found- ing in 1948, and in January 1967 (a year that witnessed 2 million deaths from smallpox and 10 million cases of the disease worldwide), the who launched an intensified and ultimately successful eradication effort relying on carefully monitored mass vaccinations as well as on surveillance and containment.

112 Wang Jinkang is one of the three leaders of the new wave of Chinese science fiction writers, a group characterized by its “subversive, cutting-edge literary experiment[s]” (Ming- wei Song 2015). This new wave is most concerned with China’s rise, the myth of development, and posthumanity (Mingwei Song 2013). 113 See Glynn for other hypotheses on the origins and early spread of smallpox (2004: 6–13) and Hopkins for a more detailed discussion of evidence of smallpox in early Egypt, India, and China (1983: 1–21). 114 Hopkins writes that smallpox was probably introduced into Europe from northeast Africa before the time of Christ but that the earliest substantive evidence of smallpox in Europe is the Antonine Plague (The Plague of Galen, 165–180) (1983: 22–26). The reference to Chinese healers is from Osterholm and Olshaker (2017: 80). 115 In Florida alone, the smallpox virus reduced the population of Timucuan Indians from approximately 722,000 in 1519 to 361,000 by 1524. The measles pandemic, also brought by Europeans to the Americas, halved this people’s population yet again (Osterholm and Olshaker 2017: 66).

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450 Chapter 7

The last known natural case of smallpox occurred in Somalia in 1977, and the who declared the disease eradicated in 1980.116 Without question, these efforts have saved millions of human lives. But they also paradoxically put millions, if not billions, at risk: the smallpox virus could readily become a biological weapon of mass destruction, given the continued storage of the virus in the United States and Russia, as well as the many nonof- ficial stocks in China, Cuba, India, Iran, Iraq, Israel, North Korea, Pakistan, and other sites, not to mention the fact that people are no longer vaccinated for the disease, that the vaccine itself is not readily available in doses sufficient to protect entire populations, and that ultimately few vaccines exist for the virulent strains of smallpox that have been developed over the years, including by the Soviet Union during and after the Cold War.117 Additionally, as Michael T. Os- terholm and Mark Olshaker point out, re-creating the smallpox virus in a lab will be far easier than building and detonating a nuclear device (2017: 134).118 Showcasing the planet’s vulnerability to smallpox and to bioterrorism more generally, Wang Jinkang’s thriller Level-Four Panic opens in 1997 in Siberia, with the Russian virologist Kolya Stebushkin meeting with the Chinese American scientist Mei Yin and giving her three glass vials of the smallpox virus. What Mei Yin plans for the virus is initially unclear. This is in contrast with Moham- mad Ahmed Segum (a man from North Africa responsible for transporting biological weapons), Abu Faraj Hamza (third in command of al-Qaeda), and Zia Baj (a Duke University-trained virologist) – the second group of characters introduced in the novel. Meeting in Afghanistan just days after September 11,

116 See World Health Organization (2010) for more on the history of smallpox eradication. See Xinzhong Yu for more on smallpox eradication in China (2014: 97–100). 117 The first known instance of smallpox being used as a biological weapon occurred during the Seven Years’ War (1754–63), when the British spread the disease to Native Americans fighting for the French via blankets and handkerchiefs with the pus and scabs of infected British troops. This episode is captured succinctly in Irish writer Paul Muldoon’s (1951–) poem “Meeting the British” (1987). Smallpox also was likely used by the British against American forces during the American Revolutionary War (1775–83) (Flight 2011). Two centuries later, during the global campaign to eradicate smallpox, to which the Soviet Union actively contributed, the Soviets also weaponized particularly virulent strains of the disease, perfecting techniques for mass producing the smallpox virus and developing ways to disseminate it in ballistic missile warheads as well as aerial bombs. As Soviet defector Ken Alibek summarized, the Kremlin “had a clear understanding that if smallpox was eradicated, and vaccination ended, the virus had the potential to be ‘the most powerful and effective weapon ever created to eliminate human life’” (Flight 2011). See also Glynn (2004: 228–245). 118 First describing the chaos surrounding a single case of monkeypox (similar to smallpox but much less deadly) in Illinois in 2003, Osterholm and Olshaker predict that a smallpox attack would lead to the utter disintegration of society, and they articulate in some detail what might happen (2017: 137–140).

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Interventions in Dying 451

2001, Mohammad hands Hamza vials of Lassa, Ebola, and smallpox, who turns them over to Baj, who then declares, “The military power of biological weapons [such as these] is quite substantial. They are by no means inferior to atomic weapons…. For us they are truly the most perfect weapons” (Wang 2015: 54). Baj intends to take full advantage of the virus’s potential as a weapon. Level- Four Panic then moves to the border of Henan and Hubei Provinces in central China, where in September 2002 Mei Yin begins work establishing a high-tech laboratory funded by her adoptive father Walt Dickerson; to Payette National Forest in Idaho in late fall 2002, where Zia Baj has just purchased a farm; back to the border of Henan and Hubei with Mei Yin in early September 2016; and then to San Francisco, where Mei Yin visits her ailing father and then a medical school in San Francisco, where she attends Zia Baj’s talk on American atrocities against native peoples. It turns out that Zia Baj was one of her father’s students and now is employed by the University of Idaho. Not long thereafter, Baj resigns from his position and returns to Afghanistan, but the narrator reveals that before so doing he masterminded a small-scale biological attack in Idaho using the smallpox virus. The outbreak is contained relatively quickly. More than 100,000 people are infected and nearly 35,000 receive a confirmed diagnosis, but the attack occurs in a rural area and sufficient vaccines are dispatched rapidly enough that only 143 people died, far fewer than might have perished had the inoculations not been readily available and the population not been contained. At the same time, more than ten thousand people are said to be “permanently stuck with a pockmarked face,” and total damages exceed $50 billion (141). Level-Four Panic cites from an article Mei Yin reads about the attack that makes clear the paradoxical precariousness of a world without smallpox: “The complete annihila- tion of smallpox created a dangerous vacuum [危险的真空]. This type of vacuum [真空] can be broken with minimal cost, creating tremendous losses” (128–129). This message is repeated multiple times throughout Wang Jinkang’s novel, almost as a refrain, and especially after it becomes apparent that Mei Yin has transmitted smallpox to the orphanage for which she serves as bene- factor. The virus infects Xiaoxue, a child with whom she had become close. After confirming that the outbreak is smallpox, epidemiologist Yang Jicun thinks to himself about the history of smallpox and remembers the eradication of the disease as “the greatest victory of human beings in their war against pathogens, and the first and only ‘total victory.’” But Yang Jicun also asks whether “the cost of the victory was too great.” He recognizes that, given the inade- quacies of China’s anti-epidemic infrastructure, despite the nation’s recent focus on infectious disease prevention, together with the “smallpox vacuum” (天花真空) that has existed for several decades, China would be ill-equipped to manage a smallpox outbreak (155).

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452 Chapter 7

But significantly, Mei Yin did not bring the virus back from the United States, as everyone originally thought was the case. Instead, the virus came from her own lab in China, where she had spent the last decade working to alleviate the smallpox vacuum by creating a milder strain of the virus and thereby protect- ing populations from the disease. Moreover, the novel eventually reveals that she deliberately planted the virus in the orphanage. Mei Yin explains to her critics that in keeping the smallpox virus alive she has been guided by her father’s ideology and that of his so-called Crucifix Society, namely, “After four billion years of unforgiving trial and error, all living things that survive today are winners, nature’s irreplaceable treasures. Together, they make up the planet’s biosphere [地球生物圈], and all have the right to continue living within the biosphere, including coyotes, hyenas, mosquitoes … of course also necessarily including viruses and bacteria. Human beings are only one part of the biosphere, and for that matter a late arrival to it, so what right do we have to declare a death sentence on other forms of life?” (190–191). In other words, the smallpox vaccine not only puts human populations at risk by creating a smallpox vacuum; it is also an unlawful attempt to destroy a vital part of the biosphere, one that as Wang Jinkang’s novel elsewhere argues, likely kept the aids virus in check. Following her trial, Mei Yin is sentenced to eight years in prison, and Level- Four Panic leaps forward to her release in 2023. Xiaoxue is now an adult, and as she belatedly begins her education, she begins to echo Mei Yin, just as Mei Yin had echoed her own father, lamenting the paradoxes of science. Mei Yin asserts: “Science invented antibiotics – and that resulted in drug-resistant su- per bacteria, which evolve faster than people can develop new medications; science eradicated smallpox – which led to a dangerous smallpox vacuum…. Science enables even people with hereditary diseases to live to old age – but this means that bad genes can proliferate, setting time bombs for the future…. Human beings need to live in harmony with nature. They cannot fight it” (263–264). In contrast with Ghosh’s Calcutta Chromosome, where endeavors to eradicate malaria are depicted as potentially harmful to environments because these efforts in medical science would improve human health and thus enable people to destroy environments more effectively, Wang Jinkang’s Level- Four Panic argues that misdirected attempts to eradicate or at least ameliorate disease have unbalanced the biosphere, harming both human and nonhuman communities.119

119 Many health conditions can be traced to human encroachment. As Jim Robbins argues, “Most epidemics … don’t just happen. They are a result of things people do to nature” (2012).

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Interventions in Dying 453

The Chinese novel rather calls for harmonious coexistence, for equilibrium among species. On a trip to Africa with his daughter in 1979, where they witnessed one of the world’s first Ebola outbreaks and were struck by the stark contrast between ailing human and thriving animal populations, Mei Yin’s father determined that

The world of living things has gone through billions of years of evolution and has already naturally attained the most stable equilibrium [最稳定的平衡态]. Excessively intense interference could lead to disaster. As a matter of fact, the epidemic diseases that affect human beings are all triggered [引发] by society’s intense changes. The calamities that science triggered [引发] and the benefits it brought human beings are almost equally great…. Human beings can only continue to follow the road they’re on; this is the fate of evolution. But at the very least in changing nature we must maintain a heart of reverence, we must do our best to preserve the original equilibrium [维持原来的平衡态], with learned societies and nature in harmony and getting along with each other. (234)

Similarly, at Mei Yin’s trial in 2017, her attorney reads from a document pre- pared by the Crucifix Society, where they declare, “All living things are legal members of the global biosphere, and all have the right to exist…. Human beings should to the best of their ability preserve the original balance of nature [应尽量保持自然的原有平衡态]…. [Eradicating smallpox] has created an extremely dangerous smallpox vacuum” (211–212). And Mei Yin herself echoes these sentiments in 2029, as her team is spraying the plague antigen (an at- tenuated plague bacillus) over the Qinghai-Tibet region, the plague having become one of China’s most feared diseases after the eradication of smallpox; the plague antigen is predicted to control the disease in western China forever. When asked why she is not taking more direct measures to stop pathogens, as most scientists have advocated, Mei Yin explains that doing so is nothing more than a “glorious aspiration” (美好的愿望); actually – thanks to smallpox, plague, Spanish flu, Ebola, yellow fever, Lassa fever, syphilis, aids, and other great global pestilences of history – people and pathogens are soon to attain a “new, higher equilibrium” (将在新的高度上达到平衡), that this process cannot be reversed, and so all scientists can do is to enable the conditions wherein all life forms can live harmoniously within the same biosphere (291). This does not mean that human epidemics will disappear, only that the outbreaks that do happen will impact human populations only minimally. When asked again if it would not be better if scientists eradicated all pathogens, just as they eradicated smallpox, Mei Yin explains that the cost would be far too great. And as

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454 Chapter 7 though to prove her point, Level-Four Panic wraps up not long thereafter, in 2030, with Zia Baj unleashing the smallpox virus over Tokyo and attempting to trigger an Ebola epidemic in that city.120 Wang Jinkang’s novel argues unam- biguously for harmony between people and pathogens and repeatedly reiter- ates the danger of attempting to eliminate the latter for the sake of overall human and nonhuman health and wellbeing. But what about individual health and wellbeing? In addition to revealing the paradoxical precariousness of a world that believes itself cured of smallpox, Level-Four Panic warns of the dangers inherent in focusing solely on the larger community with little regard for its individual members. Wang Jinkang’s novel in fact openly critiques the individualist foundations of what the narrative identifies as “Western medical principles” (西方医学观), in other words the focus on the individual at the perceived expense of the group. Instead, the Crucifix Society advocates the importance of both the group and the individual, but it emphasizes that when there is a conflict between the interests of the two, those of the group must prevail.121 Despite its sometimes draconian methods (including purposely infecting everything from small communities to vast areas), this approach often is what ultimately saves the greatest number of individuals. At the same time, the novel reveals that one of the likely unintended consequences is disregard for individual needs, even when these needs do not impinge on the wellbeing of others. Most revealing in this regard is Xiaoxue’s surgery to remove her pockmarks. When she consults with the surgeon about her operation, he focuses not on her scarring, given that this is readily addressed with current technology. In- stead, he speaks of the “imperfections” in her facial structure. And when she protests that she is concerned only with having her pockmarks repaired, he responds, “No way! Once you’re aboard my pirate ship, it’s not about you. Your natural physical endowment is so excellent, you’ll certainly attain the epitome of perfection [尽善尽美].” It is not Xiaoxue but her husband who responds,

120 Level-Four Panic was published in May 2015, during the 2014–2016 Ebola outbreak that affected multiple countries in western Africa. See Centers for Disease Control and Preven- tion (2019c) for a chronology of Ebola outbreaks. See also Osterholm and Olshaker (2017: 144–158). Paul Farmer has labeled Ebola “The Caregivers’ Disease” for the large toll that it takes on professional and family caregivers (2015). 121 Although mentioned only briefly in Wang Jinkang’s novel, perhaps the most publicized example of this phenomenon is prescribing antibiotics for conditions caused by viruses: taking antibiotics can help put an individual’s mind temporarily at ease (i.e., they believe they are doing something to help mitigate their flu), but excessive antibiotics not only put the individual at risk for allergic reactions and the potentially deadly Clostridium difficile infection as well as other harmful conditions; they also can enable the proliferation of antibiotic-resistant bacteria that put society as a whole at risk.

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Interventions in Dying 455 assuring the physician that they will do as he says, and that his wife also has scars on her body that must be repaired, indeed that everything has to be the epitome of perfection (尽善尽美). And so the physician looks Xiaoxue up and down, confirming that he, by operating on her, will certainly attain the epitome of perfection (尽善尽美, 250). When Xiaoxue does speak, she simply confirms that she will do what the physician says. There is far more emphasis on attaining “perfection,” on completely “curing” Xiaoxue, than there is on providing Xiaoxue with what she wants, not to mention listening closely to her and determining with her how best to proceed. Level-Four Panic readily admits that the equilibrium and balance it celebrates are not without both human and nonhuman casualties, even as the novel at times oversimplifies the “harmony” enjoyed by an imagined “nature” free of human encroachment. But Wang Jinkang’s narrative ultimately joins the other works of literature analyzed in this chapter, sharing with these texts the urgency of acknowledging the possible consequences of attempting to prolong human life and of paying more attention to curing than to healing and wellbeing, of human and nonhuman individuals and communities. Contain- ing numerous references to aids, Ebola, sars, and other infectious conditions, even as its principal focus is smallpox, Level-Four Panic makes no secret of the many potentially deadly diseases that continue to threaten the planet. And in leapfrogging among continents, it reminds readers of how interconnected the world has long been and is certain to remain, and the resulting perils as well as possibilities for human and nonhuman health regardless of scale.122 … Whereas Part 1 of Global Healing focuses on shattering broader social stigmas against diseases such as leprosy, hiv/aids, and Alzheimer’s; and Part 2 on humanizing healthcare in the medical setting – especially through person- focused care that is respectful, empathic, compassionate, and healing; Part 3 turns to prioritizing family partnerships that promote healing and wellbeing for patients, their loved ones, and health professionals alike. Global literature makes clear just how desperately these partnerships are needed and just how frequently they are prevented from growing, much less flourishing.

122 Osterholm and Olshaker’s title asserts that infectious diseases are “the deadliest enemy faced by all of humankind” (2017).

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