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Chapter 9 Providing Partnerships in Dying, Easing Death nbc News correspondent and author Betty Rollin (1936–) writes in the widely translated memoir Last Wish (1985) of her mother Ida Rollin’s diagnosis of ovarian cancer in 1981 and decision two years later, after the cancer returned and she became too weak to continue with chemotherapy, to take her own life. Betty Rollin had previously described her own experiences with cancer in First, You Cry (1976) – the lump in her breast that mistakenly went undiagnosed for a year despite her access to the world’s top physicians; her surgeon’s avoidance of the word cancer, her mastectomy and its emotionally agonizing aftermath including her belief that she was a “mutilated, a deformed person”; the suffering of her husband, whom she knows has his “own hell, and that sometimes it is a more barren, lonely place than the hell of the person directly hit” (1976: 104, 114).1 Yet little could have prepared Rollin for the suffering her mother endured, both from the cancer itself and from “what they did to try to make it go away” (1985: 31). In Last Wish Betty Rollin first reveals herself as questioning her mother’s desire, which echoes that of her physician, to start a second course of chemotherapy even though it is unlikely to have any benefit, and then as being conflicted about her mother’s desire to take her own life. But as uncomfortable as Ida Rollin’s choices initially make her family, Betty Rollin and her husband Ed Edwards, a mathematics professor at New York University, resolve to support her mother as best they can, including abiding by her plea that the couple provide her with the means to take her life. The second half of Last Wish reveals how they fulfilled Ida Rollin’s last wish, and the narrative makes a strong case for every terminal patient’s right to die if they so choose, a case that Betty Rollin bolstered by her later, more explicit writings on legalizing death with dignity. Ida Rollin’s first course of chemotherapy is excruciating, but it puts her cancer in remission, and the family believes the disease is safely behind them. Yet when the cancer recurs in June 1983, and Ida’s physician, Dr. Burns, calls for additional courses of chemotherapy, Betty is horrified. She asks Dr. Burns

1 As Rollin explains, “I soon learned that cancer is a word doctors almost never use” (39). First, You Cry was adapted into a made-for-television film in 1978, starring Mary Tyler Moore. Early in Last Wish, Rollin notes that “chemotherapy isn’t always the descent into hell it came to be for my mother” (28).

536 Chapter 9 whether it really makes sense to put her mother through hell again, whether he really knows that this will “buy her more time.” Burns responds tersely, “We can’t do nothing” (90). And when Betty asks “Why not?” he replies, “They’re usually a little more comfortable after the chemo” (90). Dr. Burns’s troubling use of the word “they” aside, there is the chance that chemotherapy will shrink Ida’s tumor, which could indeed make her more comfortable. But Dr. Burns ignores the likely agony the chemotherapy itself will trigger, agony that is almost certain to be greater, at least at this stage, than that caused by the cancer.2 Earlier in Last Wish Betty had commented on Dr. Burns’s bedside manner, noting that he seemed interested in her mother’s cancer but not in her mother. She attempted to justify the physician’s relatively cold demeanor: “Dr. Burns is an especially fine technician. Maybe that’s enough. Maybe it’s not fair to expect a fine technician to be a human being. It isn’t as if he’s mean. He’s just remote” (39). But being a remote technician uninterested in his patients as people prevents Dr. Burns from appreciating fully the impact of further chemotherapy on Ida’s wellbeing when he can no longer control her pain. When Ida laments to her daughter that she did not expect to have to endure chemotherapy a second time, Betty emphasizes that she does not have to go through with the treatment: “Mother, you don’t have to. No one can force you to have chemotherapy. You can decide not to” (92). Her mother replies coldly, as though echoing Burns, “How can I decide not to? It’s the only chance I have” (92). Betty does not respond, instead asking herself, “Chance for what? … What kind of few months will it be? … But I say nothing. She’d rather be tortured than lose hope. So be it” (92). As difficult as it is, Betty respects her mother’s wishes, confiding in her husband, Ed, her disbelief that her mother wishes to pursue another course of chemotherapy: “She wants those treatments because

2 This agony and its impact on loved ones is graphically described in Murakami’s Noruuei no mori (ノルウェイの森, 1987). Midori tells the narrator that her mother died “two years ago … Cancer. Brain tumor. She was in the hospital for a year and a half and suffered from beginning to end. She was drugged all the time, but still she couldn’t die. When she did die, it was practically a mercy killing [殆ど安楽死みたいな格好で死んだの, lit. euthanasia]. It’s the worst kind of death. The person is in great pain, and it’s terrible for everyone around them. It took every penny we had. They’d give her these shots – bang, bang, twenty thousand yen each. She had to have a caregiver with her at all times. I was so busy taking care of her that I couldn’t study and had to delay college for a year…. I’m not afraid of dying itself…. [Dying in a fire] doesn’t scare me at all, compared with how I saw my mother and other relatives die. All my family members die after suffering from a serious illness. It’s in the blood. Death takes a really long time. In the end you almost can’t tell whether the person is alive or dead. All that’s left is pain and suffering…. That’s the type of death that scares me…. The people around you think of you as more dead than alive [まわりの人も私のことを生物よりは死者に近いと考えているような]” (1987: 124, 142).

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Providing Partnerships in Dying, Easing Death 537 they might prolong her life a little bit. And she doesn’t even want to know how little it might be…. After what she’s been through, to face that chemotherapy again? I wouldn’t, would you?” Ed agrees that he likely would not either, but he also admits that he cannot be sure: “I don’t think you know what you’ll do in a situation like that until you’re in it yourself” (94). Again, the memoir reinforces the importance of family members’ abiding by the wishes of the patient, regardless of their own beliefs. Ida Rollin’s desire to pursue treatment is confounded by her failing health, and once she learns that she is no longer eligible for chemotherapy and there are no further options remaining, she confides to her daughter, “My life is over. It’s time to go. Why can’t I go? … Why can’t they give me a pill that would end it…. It shouldn’t be [against the law]. If a person wants to go, they should help. It’s cruel. They don’t care. They don’t care what a person really wants. They care about their profession, not the people they practice it on” (139). Sig- nificantly, Betty, who earlier had questioned why her mother wanted to pursue an additional course of chemotherapy, now appears to discount her mother’s concerns and instead tells her that she will feel better when she returns home. Betty acknowledges, “I listened to [my mother]. I did listen, but I didn’t hear. Or like Dr. Burns … I didn’t want to hear” (139). Ida’s condition deteriorates, and she speaks further with her daughter about her strong desire to die:

I’ve had a wonderful life, but now it’s over, or it should be. I’m not afraid to die but I am afraid of this illness, what it’s doing to me…. There’s never any relief from it now…. The pain – it never stops. I wouldn’t mind it if [cancer] killed me fast. Fast I wouldn’t mind. Slow I mind…. Who does it benefit if I die slowly? … There’s no point in a slow death, none. I’ve never liked doing things with no point. I’ve got to end this. (149–150)

Betty Rollin still cannot accept that her mother really wants to die, and she attempts to convince her that not every day is this bad. She asks her mother whether she does not want to be alive on the better days. Ida is not fooled and responds immediately: “This isn’t life. If I had life I’d want it. I don’t want this…. Of course I want to die…. Next to the happiness of my children, I want to die more than anything in the world” (150). As Betty describes it, this comment throws a switch, and “the motor in my head began to whir…. I felt no great emotions, only that I had a job to do now” (151). She wants to help her mother, but there are few avenues available. Health professionals refuse to speak with her about her mother, or even hypotheti- cally about which pills would aid a person in ending their life if they wanted to

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538 Chapter 9 die. One of their friends, a novelist, contacts an internist friend and claims to be writing a story where the main character wants to kill himself. The novelist asks his friend for suggestions for a person who cannot swallow pills and does not have access to a gun or an automobile. Betty too contacts a physician friend of a friend, claiming to be working on a piece of fiction herself. Both physicians recommend dehydration, but Betty knows that even if her mother were able to withstand the discomfort, “I decided I was not brave enough to watch it. Nor could I bear what the doctor said would happen next” (173). So Betty continues to contact friends, and friends of friends. She at last is put in touch with an American physician living in Holland who gives her and her husband precise instructions as to the medications and dosage her mother should take while warning them that “modern medicine has done a great job of prolonging life, but the legal system hasn’t caught up with the difficulties that inevitably arise when you have people living longer than they want to live” (188). This physician also insists on the importance of listening to the patient, of giving the patient options, and reminds Betty that “when the moment comes, again, they must continue to have the option to do whatever it is they want to do, to take this action or not to take it.” The doctor readily agrees with Betty that this is a “seesaw”: “You love your mother; you don’t want her to die. But because you love your mother, you do want her to die” (188). The remaining chapters of Last Wish cover the final week of Ida Rollin’s life, October 10–17, 1983. Betty Rollin describes how she and Ed work out the details with her mother. So complicated is the process of arranging for death that Bet- ty concludes she has “new respect for the intelligence of criminals” (206). Betty and her husband are there for Ida until the end. After taking the pills that will ease her into death, Ida declares, “I want you to know that I am a happy woman. I made a man happy for forty years, and I gave birth to the most wonderful child…. Remember, I am the most happy woman. And this is my wish. I want you to remember” (235–236). These are the last words Ida speaks. Betty col- lapses into a chair, in tears, but she does not cry for long, concluding, “Because when I look up and see how still she is, I know that she has found the door she was looking for and that it has closed, gently, behind her” (236). Last Wish introduces a daughter who, despite her own initial doubts, ac- cepts her mother’s decision and, with the support of her husband, provides her mother with true partnership and helps her mother receive what she most desires. Not surprisingly, the memoir resonated with readers in the United States and far beyond: it was translated almost immediately into Dutch, Finnish, Ital- ian, German, and Japanese, and adapted into a television movie in the United States in 1992, following the publication in 1991 of Derek Humphry’s highly controversial yet bestselling and even more widely translated Final Exit: The

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Providing Partnerships in Dying, Easing Death 539

Practicalities of Self-Deliverance and Assisted Suicide for the Dying, for which Betty Rollin penned the foreword.3 These translations in general depict Rollin as having done right by her mother. The subtitle of the German version declares the book to be “the report of a daughter who helped her mother die a worthy death” (Der Bericht einer Tochter, die ihrer Mutter hilft, einen würdi- gen Tod zu sterben, 1986a), and the afterword of the Japanese translation quotes from Betty’s 1985 interview with People magazine, where she is cited as remarking, “I miss her, but when I cry about her now I don’t cry about the sadness…. What she did was powerful and marvelous, a thing of great beauty. She went out of life with such grace and dignity. I felt – and feel – so proud of her” (1986b: 329). Writing nearly a decade after her mother’s death, and seven years after she published Last Wish, Rollin revealed that she was still in mourning. “I miss my mother, and I still get teary sometimes just thinking of her,” Rollin divulged in an article that appeared in the American women’s magazine Redbook in 1992, adding, “These aren’t tears of sadness, but of longing. I don’t keep any photo- graphs of my mother around. It tears me up to see her face – I miss her that much – and she’s been gone almost ten years…. Life for her had become a trap, she’d continually said, and she was grateful to escape. And my husband and I were grateful that she made it” (1992b: 32). Rollin also noted that over the years, in response to the memoir and the movie, she had received hundreds upon hundreds of letters from strangers, most of whom were supportive and empathic. At the same time, in her Redbook article, Rollin insisted that family members “should not be the ones to help a desperate person die…. Instead, what we urgently need is a law that would allow physicians to carry out the wishes of a dying person.” Such a law must have sufficient safeguards, Rollin emphasized, but she also declared that “to deny help to people because of a remote possibil- ity of abuse is cruel” (ibid.: 34). Yet as outlined in Chapter 7, in most places

3 As Humphry notes in the introduction to the 1992 paperback edition, despite there being no advertising or paid promotion of the 1991 hardcover first edition of Final Exit, the volume sold faster than it could be reprinted, it topped The New York Times bestseller list in its cate- gory for eighteen weeks, and in 1992, “it was published in every major language in the world” (1992: xv). In the foreword to Final Exit, Jean Rollin remarks that in the seven years since publishing Last Wish she has received hundreds of letters. Among the saddest are from people who have tried to die unsuccessfully, people and their loved ones who have sought help but were denied it, and that there needs to be a law to allow “physicians to help people who want a final exit” (1992: xxvi). Twenty years later, in A Bittersweet Season, Jane Gross comments on the large number of people in their eighties and nineties who submitted comments to her blog in which “they made dark jokes about joining the Hemlock Society or reading Derek Humphry’s Final Exit” (2012: 345).

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540 Chapter 9 where care is available, refusing care remains a challenge and creating partnerships and carrying out a “last wish” such as Ida Rollin’s remains illegal if not entirely impossible. Global literature that features individuals confronted by a loved one close to death and in excruciating agony – a loved one who either pleads for assistance in dying or whose condition is so severe that they cannot articulate their desires but it is clear that keeping them alive is something they would not have wanted – regularly makes a strong case for increasing options at the end of life, if not decriminalizing assisted death and even making it morally and so- cially acceptable.4 Such narratives bring to the fore the tremendous barriers – emotional, legal, medical, moral, and practical – to partnering with a loved one to help ease them into death. These texts, which herald from places and times as distant from each other as ancient Greece and contemporary Korea, address one of the cruelest paradoxes of being a partner in care. Not only must the family care partner witness the extreme suffering of a loved one with whose impending death they already are contending. In addition, if it is their loved one’s “last wish” that they be helped to die and if the care partner fulfills this “last wish,” the family care partner becomes responsible for the death of a loved one and in so doing risks experiencing tremendous personal guilt; being dispar- aged by their community; and even being charged, arrested, and imprisoned. An act that might to the dying person be perceived as one of benevolent mercy, if not the ultimate gift, to the authorities is frequently considered a crime. But as Humphry asks in the introduction to Final Exit, referring to his having helped his first wife, Jean, end her life with the guidance of a physician friend – as she pleaded with him to do when she was in the final agonizing stages of cancer – “My wife died in 1975 as she wished and as she deserved. However, to accomplish that, two crimes were committed…. Did Dr. Joe and I commit

4 Other cultural production draws attention to the dying person’s strong desire to stay alive, despite everything. In the American documentary Gleason (2016), on former New Orleans Saints football defensive back Steve Gleason’s (1977–) struggle with amyotrophic lateral sclerosis (als, Lou Gehrig’s disease), Gleason declares, via his computer, “i do not want to die. but this is so hard. i fear the nite. and the days r unbearable.” See too Fujita’s 99% Thank You, where he speaks of his commitment “to keep on living,” even after having a tracheotomy (2014: 158), but also reveals great ambivalence toward his future. In a brief section titled “The Battle,” he declares, “I constantly have the desire to die, / then the desire to live. / It’s an eter- nal cycle. / And that’s the battle” (192). He condemns Japan’s criminalization of euthanasia, noting that if als patients choose to have a tracheotomy, they can potentially live for another decade or two. But the law does not permit them to have the tube removed. So approximately 70 percent of als patients in Japan choose “death” over a tracheotomy: “They are forced to choose the impossible […] / it’s murder disguised as laws and regulations […] / it’s simply evil […]” (136).

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Providing Partnerships in Dying, Easing Death 541 truly felonious, culpable crimes and did we deserve punishment? Aren’t these archaic laws ready to be changed to situations befitting modern understanding and morality? Not everybody has as good a friend in the medical profession as I had. Moreover, why should caring doctors like Dr. Joe have to take such ap- palling risks?” (1992: xx). This chapter follows up on the penultimate section of Chapter 8. It also complements the section “Easing Death” in Chapter 7, on literature that dis- cusses the challenges facing physicians struggling with the idea of easing the deaths of their patients, whether by respecting a patient’s refusal of death- prolonging care or their request for life-ending care. Although the struggles of health professionals, including home health aides and other low-wage caregiv- ers, are far from absent and sometimes occupy a central position in the memoirs, novels, plays, and short stories explored in this chapter, the focus here is on the struggles of people grappling with the impending death of a loved one in anguish, people who themselves are distressed at witnessing this anguish, who want to do what is best for their loved one but who either cannot assist them in dying for fear of the moral and legal consequences or who do assist them in dying but only at great emotional expense and legal risk. I begin with “Partnerships Interrupted,” which focuses largely on three works of global literature featuring individuals powerless to help their dying loved ones ease into death, either because they are not aware of any options other than keeping their dying loved one alive, as is the case in Korean writer Han Kang’s (한강, 1970–) novel Ch’aesikchuŭija (채식주의자, The Vegetari- an, 2007), or because they are afraid of the moral and legal consequences of so doing, as is the case in Richard Selzer’s essay “A Question of Mercy” (1991) and a theatrical adaptation of this essay, American playwright David Rabe’s (1940–) drama A Question of Mercy (1997). I then move to “Partnerships Criminalized,” which examines Greek playwright Sophocles’s (Σοφοκλῆς, 497/6–406/5 b.c.e.) Trachiniai (Τραχίνιαι, The Trachiniae, The Women of Trachis, 450s b.c.e.), Japa- nese writer Mori Ōgai’s short story (森鷗外, 1862–1922) “Takasebune” (高瀬舟, Takase Boat, 1916), Derek Humphry’s memoir Jean’s Way (1978), American writer Annabelle Gurwitch’s (1961–) “828–3886” (2014), and the Spanish director Alejandro Amenábar’s (1972–) film Mar adentro (The Sea Inside, 2004). These works are among the many works of global literature that depict an individual or group of individuals adhering to their loved one’s plea to help them die despite the potential legal consequences.5 Finally, in “Partnerships Rede- fined,” I discuss four texts – American writer Wendell Berry’s (1934–) “Fidelity”

5 Also worthy of note in this context is American writer Jodi Picoult’s (1966–) novel Mercy (1996), which features a man who kills his wife, who is dying of cancer, at her request.

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(1992), British writer Cathy Rentzenbrink’s (née Mintern) The Last Act of Love: The Story of My Brother and His Sister (2015), Chilean-American writer Isabel Allende’s (1942–) Spanish-language memoir Paula (1994), and Terrence Holt’s Internal Medicine: A Doctor’s Stories (2014) – where family members must decide what to do for terminal loved ones who are too incapacitated to articulate their desires. Individually and together, these works advocate providing partnerships in dying, partnerships that paradoxically enable healing. The vast majority of global literature that depicts an individual, family, or group of friends faced with the impending death of a loved one whose suffering is extreme depicts that loved one as requesting, if not demanding, assistance in dying, as having had requested such assistance (e.g., as part of an advance directive), or as clearly ready for it. For these individuals, it would be cruel not to abide by their loved one’s wishes, despite in some cases the potential or certain illegality of what is being asked. But before analyzing the narratives that are the primary focus of this chapter, it is important to remember that, for many people, assisting in a loved one’s death is anathema. American filmmaker Dan Krauss’s (1972–) Academy Award-nominated short documentary film Extremis (2016), on the difficult decisions doctors, patients, and loved ones must make at the end of life, features several families whose loved ones are hospitalized in intensive care on the verge of death.6 While some families do not believe their loved one would want to be kept alive on machines, others want their loved one attached to machines as long as possible. The adult daughter of one such patient (Selena) asserts, “I want to try everything I can…. It would feel like murder to pull her life support. That’s what it would feel like to me.” So Selena is attached to a breathing machine and has several periods of consciousness before she dies six months later. Extremis makes clear that this daughter’s belief must be respected, particularly given the fact that there is no evidence that her mother does not want to remain on life support. At the same time, Extremis, together with countless other films and works of literature, makes a strong case for respecting a person’s desire to exercise control over their own death and ultimately for decriminalizing assisted dying. By high- lighting the heavy toll of current policies not only on those at the end of life and the health professionals overseeing their care (as discussed in Chapter 7) but also on loved ones, these works of global literature plead that people be shown mercy at the end of their lives, that they not be placed at the mercy of their physical condition and machines and procedures that prolong their deaths.

6 Extremis was filmed in the Highland Hospital (Oakland, Calif.) icu.

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1 Partnerships Interrupted

Ida Rollin was fortunate to have a daughter both willing and able to help her fulfill her final wish by providing her partnership in dying. So too were the dying individuals in the texts analyzed in later sections of this chapter. But as other narratives attest, many people who are close to death are not so fortunate. Sometimes, as is the case with Ellen in Anna Quindlen’s One True Thing (discussed in the previous chapter), the family member on whom they most depend simply cannot bring themselves to assist in their death. This is true even if, in retrospect, the family member knows it would have been the right thing to do. As Ellen says about her mother after she passed away, “By the very end, [she was] wearing diapers, drooling, never knowing what day it was, never able to get up. Who cares how she died? She should have been put out of her misery weeks ago. If she had been a dog they would have” (2006: 193). Some- times, religion prevents families from turning off the machines: one of the nar- rators of Lebanese American writer Rabih Alameddine’s (1959–) novel Koolaids: The Art of War (1998) comments on his friend Tim’s parents, “They kept Tim alive for five months more than they should have. He was a vegetable. His parents, born-again Christians, refused to have the doctors pull the plug. The machines kept forcing themselves on him. It was rape. Five months later his lungs actually exploded” (1998: 67).7 Here the family is depicted as able, but not willing, to help ease their loved one into death, and consequently they augmented his suffering. Other times, as in contemporary Korean writer Han Kang’s (한강, 1970–) acclaimed and widely translated Ch’aesikchuŭija (채식주의자, The Vegetar- ian, 2007), those closest to the dying initially cannot understand the patient’s agony. Even when they do, they are powerless to help since they cannot conceive of any option other than doing their best to keep their loved one

7 This remark is paradoxically preceded by a narrator citing from German philosopher Fried- rich Nietzsche’s (1844–1900) Götzen-Dämmerung, oder, Wie man mit dem Hammer philosophi- ert (Twilight of the Idols; or, How to Philosophize with a Hammer, 1889): “The invalid is a parasite on society. In a certain state it is indecent to go on living. To vegetate on in cowardly dependence on physicians and medicaments after the meaning of life, the right to life, has been lost ought to entail the profound contempt of society” (1998: 67). The narrator tells “Nietzsche boy” that he should be ashamed of himself, given how many people have sup- ported his “every whim and desire.” This narrator in Koolaids exposes the fallacy of Ni- etzsche’s remarks while at the same time making clear that this does not mean that he, the narrator, advocates prolonging the agony of dying. Koolaids takes place largely in San Fran- cisco and Beirut, engaging with both the aids epidemic and the Lebanese Civil War (1975– 90). The novel is a collection of short sections, narrated by a variety of voices.

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544 Chapter 9 alive.8 Part 3 of Han Kang’s death-affirming novel features a hospitalized woman who has long been abused, is suffering from anorexia, and is in tremendous psychological distress. This woman, Yŏnghye, is begging to be released.9 She accuses her sister Inhye of being just like the doctors and the nurses, who are “all exactly the same … they don’t even try to understand” (다 똑같아 […] 이 해하려고 하지도 않으면서; 2016: 190–191). Inhye explains that she is begging her sister to eat because she is afraid her sister is going to die, to which Yŏnghye responds simply, “Why, am I prohibited from dying?” (왜, 죽으면 안 되는 거야?, 191), a question repeated at the beginning of the next paragraph but not explicitly answered. The implicit response is that yes, of course she is prohibited from dying.10 To be sure, soon thereafter Inhye witnesses Yŏnghye’s brutal treatment at the hands of her physician and nurses, who are doing their best, despite Yŏnghye’s struggles, to insert a tube into her nose through which to feed her rice gruel. Horrified, Inhye physically confronts the medical professionals who are abusing her sister, pushing the physician aside, biting the arm of an aide, and grabbing the wrist of the head nurse. But her only option after gaining Yŏnghye’s release from the psychiatric hospital is to have her transported to a general hospital. The final scene of Han Kang’s novel has the sisters riding in an ambulance to the general hospital in Seoul, the staff at the psychiatric hospital having told Inhye that this facility is the only place that can keep Yŏnghye alive.11 As Inhye had realized, slumped on the floor of the bathroom immediately before leaving the psychiatric hospital for the general hospital, their bodies, the one space over which they thought they had freedom, are not under their control. And as guilty as she feels for having had her sister incarcerated in the

8 Han Kang received Korea’s prestigious Yi Sang Literary Award (이상문학상) for “Mong- go panchŏm” (몽고반점, Mongolian Monk, 2005), which later became Part 2 of The Vegetarian. In addition, she was the first Korean writer to win the Man Booker Interna- tional Prize; she and her translator Deborah Smith received the award in 2016 for The Vegetarian. Han Kang is likewise known for the novel Sonyŏn i onda (소년이온다, Hu- man Acts, 2014), on the aftermath of the May 1980 Gwangju Uprising. Her novella “Hoe- bok hanŭn ingan” (회복하는 인간, Convalescent, 2011), on a woman who waited five days after burning her ankle to receive medical treatment, largely because of her grief at the death of her sister, features a physician who demonstrates very little understanding for his patient (2013: 10). 9 The term death-affirming is from Khakpour (2016). 10 Whereas the Japanese translation of The Vegetarian retains the sense of dying as something prohibited: なぜ、死んではいけないの (Why, am I not allowed to die?; 2011: 250), the English translation softens the tone with, “Why, is it such a bad thing to die?” (2015: 157). 11 Part 3 takes place before Part 2, which depicts Yŏnhye as no longer hospitalized.

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Providing Partnerships in Dying, Easing Death 545 psychiatric hospital, she is powerless to do anything but have her moved to another hospital, where again Yŏnghye will be confronted by health professionals who do their best to keep her alive against her will. The Vegetarian by no means advocates that people with anorexia or other serious mental illness- es simply be allowed to die.12 But it does highlight the tremendous burden current models of care place on both patients and their loved ones, as well as on health professionals, and it spotlights the dearth of options for everyone involved. This shortage leaves an exhausted Inhye with little recourse but to wonder if everything she has experienced is just a dream. The novel concludes with a description of Yŏnghye’s eyes as Inhye and her sister are riding in the ambulance to the general hospital. Inhye asks whether this all might be a dream, and Yŏnghye is described as staring fiercely at the passing trees “as if protesting against something” (무엇인가에 항의하듯 그녀, 221). In contrast, the film adaptation of The Vegetarian (2009) wraps up with Inhye’s question, at once drawing greater attention to Inhye’s trauma and mitigating Yŏnghye’s protest, presumably against being taken to another hospital. The film adaptation leaves more ambiguity than the novel concerning the strength of Yŏnghye’s determination to die. Richard Selzer’s essay “A Question of Mercy” (1991), published a decade after his short story “Mercy,” is likewise narrated from the physician’s perspective. The essay consists primarily of diary entries from January 14 to February 15, 1990. But “A Question of Mercy” gives more insight than “Mercy,” discussed in Chapter 7, into the dilemmas faced by those with a loved one at the end of their life who wants assistance in dying.13 While Yŏnghye of Han Kang’s The Vegetarian is slowly taking her own life and needs her sister Inhye to help her actively resist the efforts of the hospital staff to keep her alive, Ramon in “A Question of Mercy” is a physician and Colombian immigrant dying of aids who asks his beloved partner Lionel to help him take his own life. “A Question of Mercy” highlights the ambivalence of both Lionel and the narrator regarding what they can do for Ramon: concern with the legal implications of helping Ramon die outweighs concern for prolonging Ramon’s suffering. In the end, Ramon fails in his suicide attempt because Lionel determines that the narrator should not deliver a final dose of morphine. The narrator calls an

12 Anorexia has increased in Korea over the last few decades, from .03 to .2 percent of the general population between 1987 and 2007, the year The Vegetarian was published (Youl- Ri Kim et al. 2009). A 2010 study by the Korea Food and Drug Administration discovered that out of five thousand teens, 15 percent of girls and 10 percent of boys were suffering from eating disorders (Agcopra 2015). 13 “A Question of Mercy” first appeared in the New York Times Magazine on September 22, 1991.

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ambulance when he finds Ramon still alive after his planned overdose of bar- biturates, and Ramon shakes his head no when asked whether he still wants to die. This clear change of heart seemingly justifies the laws that restrain people from helping a loved one die, no matter the intensity of the latter’s pleas. At the same time, the sharp contrast between, on the one hand, the thought Ramon puts into planning his death and the lucidity of his entreaties that everything be done to ensure that he will die, and on the other hand, the brevity of his head movements in the intensive care unit, suggests that there might be more to the story, that Ramon might simply be attempting to spare Lionel additional grief. But even as the title of the essay, “A Question of Mercy,” makes the case for partnerships in dying as being ultimately a question of mercy, the essay itself leaves open who is actually being merciful to whom. “A Question of Mercy” begins with a mutual friend of the narrator and of the couple Ramon and Lionel contacting the narrator and asking for his assistance in helping Ramon die. The physician immediately demurs, declaring, “I’m trained to preserve life, not end it. It’s not in me to do a thing like that.” When the mutual friend persists, asking whether it is really the case that “a doctor should prolong a misfortune as long as possible,” the physician responds, “There is society…. There is the law. I’m not a barbarian.” But the mutual friend disagrees, declaring, “You are precisely that … a barbarian” (134). The narrator acknowledges to himself that given recent events – a Michigan court case concerning a doctor who provided a woman with his “suicide machine,” daily news reports of deaths assisted by doctors, Derek Humphry’s bestselling book Final Exit – “even the most ideologically opposed must now hear the outcry of a populace for whom the dignity and mercy of a quick pharmacological death may be preferable to a protracted, messy, and painful end” (135).14 Further- more, the narrator of “A Question of Mercy” is reminded that even though he is retired from medicine, he has continued to renew the license that allows him to prescribe narcotics, since “someday I might have need of them to relieve pain or to kill myself easily should the occasion arise” (135). If for himself, then why not for another? So, despite his continued reservations, the physician visits Ramon and Lio- nel. “A Question of Mercy” describes Ramon’s great physical suffering and records his explicit desire to die: “He has taken all of the various experimental medicines without relief of the diarrhea. His entire day is spent medicating himself and dealing with the incontinence. Despite chemotherapy, the tumors

14 The physician in Michigan with the “suicide machine” is almost certainly the controversial Jack Kevorkian (1928–2011), although Kevorkian’s first trial took place in 1994, three years after “A Question of Mercy” was published and four years after the events it describes took place.

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Providing Partnerships in Dying, Easing Death 547 are growing rapidly. His palate is covered with them. He opens his mouth for me to see. Above all, he wants to retain his dignity, to keep control of his life, which he equates with choosing the time and method of suicide. Soon he will be unable to do it” (138). The narrator protests to Ramon that death is “so final,” yet Ramon repeats his determination to die. And so the tone in the room turns “conspiratorial” – voices drop, promises to keep everything confidential are made, since “there are those who would leap to punish” (138). Two days later, when the narrator again visits the couple, Lionel admits to being “terrified of the police” and asks, “Should I see a lawyer? What if I’m caught and put in prison?” He continues, “And I’m losing Ramon. That is a fact, and there is not a thing I can do about it!” (140). Clearly torn, Lionel wants to do what is best for his beloved partner, but fear of the law, police, and prison prevents him from embracing fully Ramon’s decision and partnering with him in dying. Lionel’s anxiety only increases, not over the intensified suffering of his partner, which “A Question of Mercy” accentuates, nor even over his impending complicity in Ramon’s death, but instead because of the “criminal” nature of what Lionel is being asked to do. As the narrator recognizes, “More and more we are like criminals, or a cell of revolutionaries. Lionel’s fear and guilt are in- fectious. But then there is Ramon” (141). Even as the narrator recognizes that he must help Ramon, like Lionel, he is terrified of the legal consequences of so doing, and he has nightmares of being arrested. He suggests that instead of overdosing on pills, Ramon “simply stop eating and drinking.” But neither Lio- nel nor Ramon are agreeable to this plan; Lionel knows that he will not be able to watch Ramon die of thirst.15 So the group plans their strategy: Ramon will take the pills beginning at 6 p.m. on April 10; at 8:30 p.m., the narrator will let himself into the apartment and will stay there long enough to make certain that Ramon has died. If he has not, the narrator will use the morphine to bring about his death. At noon the following day, Lionel and his friend Melanie will return to the apartment, discover the body, and call the clinic. There is a codicil to Ramon’s will requesting that there be no autopsy. Yet their partnership ultimately is interrupted. Melanie has contacted the Hemlock Society and talked with one of their lawyers, from whom she learns that there is nothing they can do to prevent an autopsy. Because of Ramon’s age, the coroner is likely to order the procedure and the substances used to ease Ramon into death will be discovered, the police will ask questions, and the narrator will be identified and likely charged. So Lionel, Melanie, and the narrator decide that the narrator will not participate. This is the February 7

15 As discussed in Chapter 7, although lawful, vsed (voluntary stopping eating and drinking) is hardly “simple.”

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diary entry. “A Question of Mercy” then jumps to February 11, when the narrator receives a phone call from Lionel and learns that Ramon is “very much alive,” in the intensive care unit, on a respirator, and being fed intravenously. Lionel had returned home to find that Ramon had not died after all and so believed he had no choice but to call for help: “‘I had to call the ambulance, didn’t I?’ he asks. ‘What else could I do? He was alive’” (145). Ramon looks at the narrator with a combination of reproach and disappointment, but when asked whether he wants to be treated for his pneumonia, Ramon nods yes. When asked whether he wants to live he again nods, and when asked whether he still wants to die, he shakes his head no. Given all the planning that he put into his death, as well as the look of reproach and disappointment with which he greets the narrator, this sudden change is possibly an attempt to spare Lionel additional grief. At the very least it is a clear reminder of the ambiguity that often surrounds end-of-life decisions, the desire to do right by a loved one, but also as much as possible to spare oneself emotional and legal penalties. Six years after “A Question of Mercy” was first published, American playwright David Rabe adapted the essay into a drama of the same title, which premiered at the New York Theatre Workshop on February 7, 1997. The anony- mous narrator in Selzer’s piece becomes Dr. Robert Chapman, Ramon becomes Anthony, and Lionel becomes Thomas. Rabe’s play, which is much longer than “A Question of Mercy,” elaborates on many of the scenes and expounds on many of the issues raised in Selzer’s essay. In particular, the broadening of perspective from the diary format draws even greater attention to the struggles and the suffering of both the physician with a terminal patient and the individual with a terminal loved one calling for assistance in dying. For instance, as Thomas laments to Dr. Chapman and Anthony, “You [Anthony] won’t be a part of this if we’re caught, because you won’t be here anymore…. He [Anthony] just doesn’t have any idea how this is for me. Because it’s worse for him, I know it is – but it’s SOMETHING for me. And he acts sometimes like it’s NOTHING – like I don’t have my own feelings about all this” (Rabe 1998: 29–30). Later, when Chapman threatens to withdraw his support, given that Anthony has defini- tively decided on death whereas for Thomas so much is still unsettled, Thomas begs him to stay: “You’re the answer to Anthony’s prayers. To him you are a kind of salvation…. You must not leave him. My feelings are not to be taken seriously – they must be seen as secondary, and they have to be subordinated by all of us to whatever Anthony wants” (59). To his credit, despite everything, Anthony does take Thomas’s concerns seriously, and he urges Chapman to find a way for Thomas to be less involved, “to protect him” (61). And when Chapman later phones Anthony to say that he will be there for Anthony, Anthony again

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Providing Partnerships in Dying, Easing Death 549 appeals to him: “I must ask you to help Thomas too. We must find a way to help him, a way to protect him” (72). Here and elsewhere in Rabe’s drama, even more so than in Selzer’s essay, Anthony envisions a partnership among himself, his partner, and his physician. But both Thomas and Chapman make little secret of their misgivings, despite their determination that they should be there for Anthony, their determination, that is, until Thomas has reached his limit. As Thomas and Antho- ny’s mutual friend Susanah (Melanie in Selzer’s essay) rightly observes, “It’s the fullness of your [Thomas’s] feelings for Anthony; they are just in some way overwhelming you…. When a person loves someone as much as you love An- thony, they want to give them what they want. Especially when that person is in such desperate circumstances. But … I can’t blind myself to the distress you’re in” (99). Susanah argues that Anthony “has a right to choose to die if he wants to, but not to involve you beyond what you can tolerate…. There are limits to love” (100). And these limits are solidified when Susanah reports that the Hemlock Society has told her the authorities are almost certain to perform an autopsy and then to interrogate Thomas and Chapman. Susanah fires Chap- man, at which point Thomas speaks up: “I could have tended him to the end, the most unbearable end – I could have cared for him no matter how awful it became. But I can’t do this. I can’t help kill him and then be forced to lie about it to the police – all the while knowing I’ve broken the law and I’m going to get caught” (103). The law here is the final straw, and so when Thomas and Susanah return to Anthony’s apartment after his overdose and find him alive, just as in Selzer’s essay, Thomas calls the ambulance, believing that he (at the very least legally) has no choice but to do so. But Rabe’s play adds a layer of complexity to Selzer’s essay. To begin with, whereas in the essay Ramon gives the narrator a look that he “can only in- terpret as reproach or disappointment” (146), in the play the stage directions state, “Anthony opens his eyes and looks up” (109). So while in the play Chap- man asks for Anthony’s forgiveness (something the narrator does not do in the essay), it is not clear in Rabe’s play whether Chapman is asking to be forgiven for helping Anthony determine how best to take his life or for failing to provide the promised final dose that would have taken his life. Moreover, after Chapman turns Anthony’s care over to the hospital staff, he is relieved that “this strange dream was over for me, the trance ended. We were back in the strong embrace of order, nested in its rules” (111). Chapman appears to awaken from the dream in which Han Kang’s Inhye finds herself trapped at the end of The Vegetarian. But no sooner does Chapman begin thinking of what awaits him next in life than he dreams of a plainclothes policeman and a detective

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550 Chapter 9 banging thunderously on his door with a warrant for his arrest. The law continues to haunt him. Chapman then thinks of Ambroise Paré (1510–1590), an anecdote of Selzer’s regarding the “father of surgery,” which Selzer had included at the beginning of his narrative. The story concerns the killing of severely injured soldiers, which Paré condemned as villainy, only to be told by the aging man who had cut the wounded soldiers’ throats “gently, efficiently, and without ill will” that he hoped if one day he were suffering similarly, someone would do the same for him. In Selzer’s essay, the narrator asks, “Was this an act of villainy, or mercy?” (2001: 135). The narrator truly does not know. But in Rabe’s play, Chapman remarks, “Villainy. Mercy. I see them now like two snakes coiled around a staff, their tangled shapes indistinguishable, their eyes fixed on each other” (115). In other words, from his perspective, assisting someone to die is an act of both villainy and mercy. And so too perhaps is leaving them to languish. Rabe’s A Question of Mercy concludes with Chapman confessing to the audi- ence that there is one secret belonging only to him, one that fills him with shame. It is his wish that “on that first day, when I heard that ringing telephone, I had not picked it up – I had simply let it go unanswered” (1998: 116). These are the final words spoken in the play, after which Chapman turns and walks off- stage as a phone continues to ring. The retired physician can imagine a scenario where he does not answer the phone. A terminal patients’ loved ones, however, cannot not answer the phone. Yet A Question of Mercy underscores more than “A Question of Mercy” that even when family and friends do understand their loved one’s need to die, the social, moral, and legal implications of assisting with death scare off all but the most determined. In Selzer’s essay Ramon dies in the hospital twelve days after being admitted. In Rabe’s play, Anthony dies in the hospital three days after being admitted. Their suffering has come to an end, while that of Han Kang’s Yŏnghye continues. “A Question of Mercy” and A Question of Mercy both draw attention to the unnecessary burden the legal system places on families, interpreted broadly, who already are grieving the anguish and impending loss of a loved one. But these narratives also make a point of complicating writings such as Rollin’s Last Wish, where the decisions and appropriate actions, as tangled as they are, are depicted as more straightforward than many actually experience them to be.

2 Partnerships Criminalized

Appeals to loved ones for assistance in dying appear in literature at least since the ancient Greek playwright Sophocles’s Trachiniai (Τραχίνιαι, The Trachiniae,

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The Women of Trachis, 450s b.c.e.). In this tragedy, a mortally poisoned Hera- cles (Ἡρακλῆς), his body rapidly disintegrating, first asks his soldiers to take his life:

And now toward this one afflicted [Heracles] Will anyone turn either fire or useful beneficial sword? Oh oh, Nor is anyone willing to come, wrenching off forcefully my head from my hated body? (1912: 1013–1016)16

Receiving no response, he then demands of his son Hyllus that Hyllus and his friends carry his body to the top of Oeta, the sacred mountain of Zeus, and there,

Having sheared much timber of deep-rooted oak and having cut out likewise much of strong wild olive, throw my body on with it, and take up the beam of a pine-torch and set it afire. And let no tears of weeping enter, but without a sigh and without tears, if you are [the son] of this man, act. (1195–1201)

Hyllus, not surprisingly, is horrified: “Woe, father, what did you say? [what it is you exact me to do] /… such things do you call upon me to do, father,/ to become your slayer and taking it into my own hands.” But Heracles is quick to correct his son. Were Hyllus to obey his father’s orders, he would be the antith- esis of a murderer. Heracles insists, “[Not indeed I,] but of my evils which I have suffered / to be healer and only curer.”17 Hyllus, again not surprisingly, is

16 Thank you to Ilana Freedman for the translations of Sophocles’s play. 17 As Bryan Doerries points out, Heracles, dehumanized by his injuries, is “asking for his son to take his needs seriously and treat him like a human” (2015: 240). In The Theater of War, Doerries includes The Trachiniae as one of the many ancient Greek plays relevant to contemporary audiences. Doerries, a translator and director who lost his twenty-two-year-old girlfriend to cystic fibrosis and then his sixty-six-year-old father to diabetes, is the founder of Theater of War, a project that performs readings of ancient Greek plays to service members, veterans, and their families to help them begin difficult conversations about the impacts of war. He is also the co-founder of Outside the Wire, which uses theater and other media to address urgent public health and other social issues. Doerries describes witnessing the death of his young girlfriend: “Watching Laura suffer is a spiritual experience, because it points to something beyond humanity, a cruelty that can only be di- vine…. I have no way to explain to her the thousand contradictory thoughts racing

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552 Chapter 9 confused. He asks, “And how do I cure your body, burning it?” Aware of his son’s extreme discomfort, Heracles does not answer this question directly, instead declaring, “But if you are scared toward this, the other things at least accomplish,” a plan with which Hyllus concurs (1203–1211). The Trachiniae concludes with Hyllus asking his companions to have sympathy for him and to help him take Heracles up the mountain, where someone else will ignite the fire. Hyllus laments,

Having been witness to, given that the deeds have been done, the great ingratitude of gods who give us birth and are called fathers and then oversee sufferings such as these. Of future things no one has an overview while the present circumstances are for us pitiful, and for those ones shameful but for him of all men the harshest [cruelest] the one enduring this disaster. (1912: 1266–1274)

Sophocles’s play accentuates the disparate perspectives of father and son regarding assistance in dying. For the mortally injured Heracles, the person who takes his life would be the one who cures him. Hyllus believes that this person could not at all be considered a healer. Instead, this person would be his “slayer.” No wonder the son speaks of a pitiful, shameful, and disastrous present and a most uncertain future. But whereas The Trachiniae wraps up with Hyllus and his companions beginning the nighttime journey to the pyre that will “heal” his father, early twentieth-century Japanese physician and writer Mori Ōgai’s short story “Ta- kasebune” (高瀬舟, Takase Boat, 1916) concerns the convicted Tokugawa- period (1600–1868) murderer Kisuke’s nighttime journey down the Takase Riv- er to prison.18 Kisuke had responded to an appeal similar to that of Heracles: Kisuke’s beloved younger brother had attempted suicide, the razor became lodged in his throat, and he pleaded with Kisuke to pull it out, so that he could die. Kisuke at first refused, but his brother insisted. And so Kisuke reluctantly complied, only to have a neighborhood woman walk in on the brothers and

through my mind, no words to convey how sorry I am that she is still alive, and how relieved I am to wake up and find her still breathing there beside me” (213). 18 The Takasegawa (高瀬川, Takase River) is today a small canal in Kyoto, but during the Tokugawa period it was a more substantial waterway used to transport convicted criminals to prison in Osaka. Ōgai’s “Takase Boat” takes place during the rule of daimyo Matsu- daira Sadanobu (松平定信, Shirakawa Rakuōkō, 白河楽翁公, 1758–1829).

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Providing Partnerships in Dying, Easing Death 553 report Kisuke to the authorities. Significant about “Takase Boat” is not only the narrative’s clear sympathy for Kisuke but also the note Ōgai appended to the short story, describing the inspiration for what was to become one of his most frequently translated works.19 “Takase Boat” opens with the narrator explaining that during the Tokugawa period takase boats were used on the Takase River to transport criminals who had been banished to a “distant island.” These criminals had committed serious crimes, the narrator admits, but he is also quick to point out that this does not mean that the majority of individuals being exiled were “violent/cruel characters” (獰悪な人物) who had committed murder or arson. Many, in fact, had not intentionally committed a crime. For instance, the narrator explains, the boat carried off men who, although having intended to commit double suicide, or “death while facing each other” (相対死), had killed their female love but not themselves. In other words, for the narrator, killing a woman as part of a double suicide pact is a punishable offense, but it is not murder, and the criminal is not a murderer (1929b: 438). The narrator then introduces Kisuke, who is described as “an unusual criminal, the likes of which had not been seen” (これまで類のない、珍しい罪人; 1929b: 438). Shōbē, the constable, finds Kisuke a curious character. Unlike the other, uniformly despondent criminals Shōbē has transported on the boat over the years, Kisuke appears almost joyful, something Shōbē cannot understand given that Kisuke is accused of killing his brother and that he does not appear to be either insane or completely devoid of human sentiment. So Shōbē asks Kisuke what he is thinking. The prisoner first explains that his life to date has been so destitute that the prison promises to offer living conditions much more appealing than those to which he has become accustomed. But sensing that there is more, Shōbē presses further and asks about Kisuke’s brother. And so Kisuke tells him the story of how both his parents had died in an epidemic when he and his brother were still quite young. At first, the townspeople took pity on them and helped them get by. But as the boys grew into men, conditions became more difficult; even though both worked at the local textile mill, they could afford nothing but a meager shanty. Before long, Kisuke’s brother fell ill and could no longer work. One day Kisuke returned home from work to find his brother lying face down, clutching his hand to his throat, which was

19 “Takase Boat” has been translated into among other languages Chinese, English, Espe- ranto, French, German, Hindi, Italian, Korean, Polish, Portuguese, Romanian, Russian, Spanish, and Sudanese, and into some of these languages several times. Notably, Ōgai’s younger brother Tokujirō, who was suffering from tuberculosis, died from a throat hemorrhage in 1908 (Bowring 1979: 230).

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554 Chapter 9 bleeding profusely. Horrified, Kisuke asked what had happened. His brother explained that he had tried to commit suicide by plunging a razor into his neck, but the blade slipped; the brother had thought that if he died, Kisuke’s life would become somewhat easier. Kisuke then tells Shōbē that his brother had advised him, “I think if you pull it out correctly, I’ll be able to die. It’s really painful to speak. Please pull it out” (これを旨く抜いてくれたら己は死ねるだらうと思っている。物を言ふのがせつなくつて可けない。どうぞ手を借して抜いてくれ, 442). Initially, Kisuke refused. Instead, taking another look at his brother’s wound, he announced that he was going to call a doctor, but his brother pleaded, “What good’s a doctor, oh this hurts, please pull it out quickly” (医者がなんになる、ああ苦しい、早く抜いてくれ, 442). When Kisuke just stared at him, his brother’s eyes began to beg of him, “Quickly, quickly” (早くしろ、早くしろ), and his reproachful look became one of hatred. In the end, Kisuke relented, believing, “There’s nothing else to do, I’ll pull it out” (しかたがない、抜いて遣るぞ). Immediately his brother’s eyes turned “bright, and extremely joyful” (晴れやかに、さも嬉しいさう, 442). So Kisuke went ahead and pulled out the razor. It was then that a neighbor walked in on the brothers. Listening to Kisuke’s story, Shōbē wonders whether what happened

could really be called fratricide, or murder at all…. It’s true that by pulling out [the razor] he caused his brother’s death. He killed him. But it seemed as though his brother would have died regardless. The reason he said that he wanted to die quickly was that he couldn’t endure the pain. He couldn’t bear seeing him suffer so much. He took his brother’s life to save him from suffering [苦から救つて遣らうと思つて]. Was that a crime? If he’d killed him, it would without question have been a crime. But when you take into consideration that he did it to save his brother from suffering [それが苦から救ふためであつた], that’s when the questions started, and they couldn’t be resolved. (443)

Shōbē reassures himself that he has no choice but to abide by the judgment of his superiors, but his doubts continue to linger. “Takase Boat” concludes with a final paragraph that has the two men floating silently through the dark night on the black waters of the river. Ōgai’s short story refers repeatedly to the suffering of Kisuke’s brother, as well as to the young man’s strong desire to die without delay, and the narrative makes clear that far from acting out of malice, Kisuke pulled the razor out of his brother’s neck only because his brother demanded that he do so and because he could not bear to be complicit in his brother’s continued torment. To

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Providing Partnerships in Dying, Easing Death 555 be sure, for Kisuke, life in prison will hardly be punishment; his existence to date having been so precarious, he has “come to sense a spiritual liberation … having been lifted out of poverty and straitened circumstance and given a gen- erous sum of money to live on” (Marcus 2001: 307). But Kisuke is an exception, and “Takase Boat” openly questions the reasonableness of exiling a man for showing mercy on his brother, even if in so doing he brought about his brother’s death. Writing in 1916, before the radical technological advances that enabled death to be prolonged so significantly, Ōgai nevertheless tapped into long- standing disputes in many parts of the world on the criminality of assisted death.20 In a note appended to “Takase Boat” and published with the story in the journal Chūō kōron (中央公論, Central Review) in 1916, Ōgai explains that he had encountered a version of the tale in the Okinagusa (翁草, 1776), a volume of stories and anecdotes (随筆) compiled by Kanzawa Teikan (Tōkō) (神澤貞幹 [杜口], 1710–1795) and later republished during Ōgai’s lifetime in a 1906 edition by the scholar Ikebe Yoshikata (池辺義象, 1861–1923). Ōgai had been struck by Kisuke’s delight at being given even a small amount of money and despite being exiled. He was also intrigued by the matter of “helping a person die who is on the verge of death but is unable to die and suffering” (死にかかつていて死なれずに苦しんでいる人を、死なせて遣ると云ふ事である; 1929b: 444). Ōgai asserts, “Helping a person die is to kill them. No matter the circumstances, we cannot kill a person” (人を死なせて遣れば、即ち殺すと云ふことになる. どんな場合にも人を殺してはならない, 444). But then he appears to backtrack, and he concludes the note appended to “Ta- kase Boat” by making the case for euthanasia, of which he speaks explicitly:

Suppose you have a person who is ill, and on the verge of death, who is suffering [苦しんでいる]. There is no way at all to save them. What would a person sitting beside them feel, seeing that suffering [その苦しむのを見て]. Even an educated individual is guaranteed to feel that since that person is certain to die, they would not want to prolong that suffering [あの苦しみ] but would want to help that person die quickly…. Traditional morality commands us to let that person suffer [苦しませて置け]. How- ever, in medical circles there is an argument that rejects this. It states that when a person is on the verge of death and is suffering [苦しむものがあつたら], it is good for us to let them die comfortably [楽に死なせて] and save them from that suffering [其苦を救って]. This is called

20 For a timeline of these debates in the West, beginning with the ancient Greeks, see Pro- Con (2013).

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euthanasia [ユウタナジイ]. It means to let a person die comfortably [楽に死なせる]. It seems that this was precisely the situation for the criminal in the takase boat. I find this very interesting. (444)

Even more than in “Takase Boat” itself, the emphasis in the author’s note is on alleviating the suffering of the person who is about to die but whose body continues to cling to life. Interestingly, Ōgai distinguishes between the criminal justice system and “traditional morality” on the one hand, and medical wis- dom and common sense among the educated and uneducated alike on the other.21 In addition to being one of early twentieth-century Japan’s most prom- inent writers, Ōgai was a physician. He earned his medical license at the age of nineteen; became a medical officer in the Japanese Army after graduation; trained in Germany between 1884 and 1888; worked his way up the ranks; and in 1916, the year “Takase Boat” was published, promoted to surgeon general of the Imperial Japanese Army. So in the author’s note Ōgai is speaking both as a concerned member of society and as a physician. He offers a cautionary note to those who would mischaracterize or criminalize helping someone die who is asking repeatedly for precisely this help and whose extreme suffering has no hope of abating. But Ōgai was also speaking as a father for whom euthanasia was a personal matter. In 1908, his five-year-old daughter Mari and infant son Furitsu became seriously ill with whooping cough (pertussis). Furitsu died, while Mari’s prognosis was exceptionally grim and her agony extreme. The family and their physician discussed use of a lethal injection to end her suffering but ultimately decided against this. In the end, Mari recovered fully (Aoyama 2001: 171).22 This experience provided the foundation for Ōgai’s short story “Konpira” (金毘羅, 1909), which features a professor of philosophy whose six-year-old daughter Yuri and infant son Hansu become seriously ill with whooping cough.23 Hansu

21 In the note appended to “Takase Boat,” Ōgai observes that the Okinagusa included criti- cism that the man pulled the razor out of his brother’s neck because he was not educated. 22 See Aoyama (2001: 188) and Tanaka (1997) for more on the discrepancies in the accounts of this incident; Tanaka argues that Furitsu’s death was hastened by a lethal dose of morphine. Mori Mari (森茉莉, 1903–1987) became a writer in her own right and discussed the incident in her essays and fiction. But although her hefty novel Amai mitsu no heya (甘い蜜の部屋, Sweet Honey Room, 1975) features a young Moira (i.e., Mari) with whooping cough, this tome notably suppresses any indication that Ōgai contemplated euthanasia for his ailing daughter. 23 Konpira is a Shinto maritime and water deity; during the nineteenth and twentieth cen- turies, the shrine of Konpira on Shikoku was one of the most frequently visited Japanese pilgrimage sites (Thal 2005). Konpira is also one of the Buddhist Guardian Deities.

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Providing Partnerships in Dying, Easing Death 557 dies after a long struggle, and the family physician believes that Yuri’s death is imminent. Unlike “Takase Boat,” “Konpira” does not speak of euthanasia explicitly. But the professor and his wife do request that their daughter’s nurse stop a treatment that appears simply to be prolonging Yuri’s discomfort. When Yuri – who has been lying silent for so long – hears this, she mumbles something and then, with sudden and surprising strength, tells them “clearly” (はっきり) that if they stop applying compresses her condition will not improve. The couple immediately feels guilty, “as if they had secretly done an evil deed [悪事] and been discovered” (1929a: 336). Needless to say, the professor and his wife have the nurse resume care, and that same evening Yuri’s appetite miraculously returns; before long, she has recovered. The final paragraph opens with the observation that “no matter how renowned, every physician makes mistakes” (337). Drawing on Ōgai’s own experiences as a parent, “Konpira” argues against withholding treatment and, by extension, the even more intentional act of euthanasia. Portraying a physician who prematurely gives up on his pediatric patient, and parents who mistakenly think they are helping alleviate their beloved child’s suffering by holding back certain forms of care, this short story cautions readers, including health professionals, to be extremely careful when deciding how to treat individuals who seem to be at the end of life.24 On the other hand, the earlier narrative tells only part of the story. Yuri’s circumstances in “Konpira” are very different from those of Kisuke in “Takase Boat,” and by returning to the question of assisted death under different circumstances, Ōgai made a strong statement in favor of decriminalizing the act of easing a dying person into death if that is what this person unmistakably wants.25 By setting the “Takase Boat” in the previous century and era (i.e., Tokugawa as opposed to Taishō [1912–1926]), Ōgai additionally calls attention to the perpetual and seemingly irresolvable nature of the debates surrounding assisted death. Halfway around the world, and more than six decades after “Takase Boat,” Derek Humphry’s memoir Jean’s Way (1978) similarly made a “powerful plea for voluntary euthanasia – the individual’s right to death in peace and dignity” in the words of the controversial Hungarian-British writer Arthur Koestler (1905– 1983) who himself committed a double suicide with his wife after suffering from Parkinson’s disease and then terminal leukemia.26 Jean’s Way calls for

24 In this sense, “Konpira” bears some resemblance to Ōe Kenzaburō’s A Personal Matter, discussed in the previous chapter. 25 In contrast, Yuri in “Konpira” specifically asks that her treatments be continued, even though they irritate her skin. 26 Review published on amazon.com (https://www.amazon.com/Jean-Murio-Manera-Jeans -Spanish/dp/0976828324), accessed June 30, 2019.

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decriminalizing assisted death even more explicitly than “Takase Boat.” Hum phry concludes the epilogue of the memoir’s 1986 edition with the observation that “Jean Humphry and many like her were tough enough to defy the system, but how much better for the system to be thoughtfully modified so that it encompasses not only a good life, but a good death” (152). Jean’s Way opens with Derek’s wife, Jean, asking him whether today is the day, to which he responds affirmatively. She then declares that she will die at one o’clock, and the couple spends the remaining four hours reflecting together on their twenty-two years of marriage, discussing their three children and their futures, and thinking about Derek’s life going forward. Jean gives him explicit instructions on how to dispose of her clothing and personal effects. And then at the appointed time, as they have discussed many times before, Derek prepares for her a mug of coffee with a lethal mixture of painkillers and sleep- ing tablets. He hands the mug to her. Knowing what it contains, they give each other a final embrace, and she gulps down the coffee, falls into a deep sleep, and, nearly an hour later breathes her last. Derek concludes the first chapter of Jean’s Way by commenting that Jean’s death at the age of forty-two “was a great sorrow to all of us who loved her … [but] she died on her own terms, not those of the disease which ravaged her body” (1986: 2). The memoir’s second chapter jumps back three years, to the summer of 1972, when Derek and his wife are thinking of how best to spend “the second half of our life together” (3), now that their three sons are all in their late teens and busy with their own lives. But that same summer Jean discovers a lump in her breast that proves cancerous. Her mastectomy does not halt the cancer, which has metastasized, and her physicians become increasingly evasive, failing to provide her the information she seeks and virtually ignoring Derek until he insists that they communicate at least with him. As Jean’s condition wors- ens, Derek becomes more and more distraught: “During the next few days Jean deteriorated rapidly and had to be kept unconscious to relieve the pain…. Hav- ing seen the extent of her suffering on the day she came into the hospital, I could not bear to think of her enduring that degree of pain again…. Despite my attempts to brace myself for Jean’s death, my agony was in no way diminished at seeing the person I loved and adored wasting away in front of my eyes” (74). When Jean next regains consciousness, she makes clear her desires going forward, asking Derek to help her die when the time is right: “I want you to prom- ise me that when I ask you if this is the right time to kill myself, you will give me an honest answer one way or another and we must understand, both you and I, that I’ll do it right at that very moment. You won’t question my right and you will give me the means to do this” (76). Having witnessed her own mother’s horrific decline from cancer, an experience that continues to traumatize her,

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Providing Partnerships in Dying, Easing Death 559

Jean is determined not to repeat the past. Even before being diagnosed with cancer herself, Jean “had resolved with a vengeance that such a fate would never befall her” (76). Derek admits that a part of him cannot accept the thought of Jean dying, and another part of him “strongly resisted being an accomplice” in her death. But he also recognizes that “when the request for help in dying meant relief from relentless suffering and pain and I had seen the extent of this agony, the option simply could not be denied…. Certainly Jean deserved the dignity of selecting her own ending” (77). So he agrees to be with her through the end. The following chapters of Jean’s Way discuss Jean’s last years, the hopeful mo- ments and the great despair they both experience, as well as Jean’s unrelenting suffering, until finally Jean declares, “I’d rather die today in peace of mind, and enjoying your presence and love in my own home than in some grim hospital ward after being knocked senseless with drugs for a couple of weeks” (128). But then she hesitates, asking her husband, “Aren’t you breaking the law in helping me to take my own life? Won’t you get into trouble? I couldn’t bear that” (129). Derek attempts to allay her fears, but Jean persists with her questions until finally she is comforted by his assertion that “if this is the way you wish to die, then it is my duty to help you” (129). For two years, Derek kept the secret of Jean’s death largely to himself. Even- tually, he wrote the manuscript that became Jean’s Way, but numerous pub- lishers rejected it, fearing the inevitable controversy. In the end, Quartet Books, a small Manhattan publisher, took on the project, and when word got out, popular interest far exceeded expectations. Columbia Pictures purchased the movie rights, a major firm snapped up the paperback rights, and deals were made to publish the memoir in multiple languages around the world. Yet with triumph came trouble with law enforcement, which had just learned that a crime had been committed and spoke with Derek to investigate. Derek promised, through the British wire services, that if he were prosecuted, he would “plead guilty and ask for the mercy of the court” (143). Derek explained that thanks to the Suicide Act, passed by Parliament in 1961, Jean did not commit a crime in taking her own life. In contrast, Derek’s actions in helping his wife were considered a crime, one punishable with a prison sentence of up to four- teen years. This, Derek laments, is true most everywhere: “That a suicide requested and deserved help, and that the assistance was given in good faith, was and is no defense in law. The law is approximately the same in most other countries…. Twenty-five states in the u.s.a. categorize assisted suicide as a fel- ony, and the punishment, in California for instance, is up to five years impris- onment” (144). Derek acknowledges that prosecutions are rare, and custodial sentences practically unknown, but he is dismayed that “even when people

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560 Chapter 9 were taken to court and so lightly punished … their personal lives were laid bare to the public at a time of grief” (144). Law enforcement was even more interested in the identity of the physician who provided the Humphrys with the lethal dose, and so Derek removed his name from his address book and destroyed incriminating tape recordings of parts of the book in which he referred to the physician by name. At the same time, there was an outpouring of popular support, people writing Humphry of their realization they were not the only ones to have faced such a predicament. Others wrote that they “had wanted to help terminally ill loved ones who were in agony, but could not bring themselves to do it out of fear of prosecution and ostracism” (145). Thus the plea at the conclusion of the epilogue: that structures be put in place so that people can have not only a good life but also a good death. Jean’s Way likewise makes clear that a “good death” necessarily includes having the option of a death on one’s own terms, with the help of loved ones if a person so chooses. As Jean’s Way emphasizes, this type of “good death” provides the loved ones of the terminal patient a greater chance at experiencing their own “good life,” knowing they have given their loved one the ultimate gift, that they have ameliorated rather than enhanced suffering. Indeed, Derek is very open in his memoir regarding how, after the death of his beloved wife, he was able to reconstruct a life for himself, precisely the life that Jean would have wanted for him. Similarly told from the perspective of an individual with a loved one facing terminal cancer who has requested help in dying is American comedic actress and writer Annabelle Gurwitch’s essay “828–3886,” included in the memoir I See You Made an Effort (2014). Gurwitch describes how in 2010, a quarter century after Humphry helped his wife die despite the potential legal consequences, her close friend Robin was diagnosed with pancreatic cancer. This disease has a high fatality rate because people generally do not have symptoms until the cancer has grown significantly and/or has already spread elsewhere in the body (American Cancer Society 2019). Gurwitch admits that there was “a certain excitement when she [Robin] started the treatment, like the third season of a sitcom, when the characters face serious challenges but still fire off hilari- ously biting one-liners” (2014: 72). But after just a few months conditions go from sitcom to Lifetime Movie of the Week. And then everything becomes ter- rifying, for Gurwitch and her and Robin’s inner circle of friends, who take on primary responsibility for Robin, who is not married, has ill parents, and is not close to her siblings. Given her prognosis, Robin decides that she wants her friends to assist her in dying: “This was going to be The Good Death, carefully orchestrated, carried out by loved ones” (78). The plan was to increase her

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Providing Partnerships in Dying, Easing Death 561 medication – Paxil, Wellbutrin, morphine, oxycodone, and Haldol – until she fell into a coma and died. When Robin decides the day has arrived, each of her five closest friends pushes the pump as they stand together by her bed: “Each one of us wanted to make sure our fingerprints would be on the button on the morphine drip. We didn’t want any one person to be culpable” (79). One of the friends even jokes that to confuse things they should “put the dog’s paw on the pump” (79). Gurwitch claims in “828–3886” that she was not sure of the legal ramifica- tions of what she and her friends were doing that day as they assembled, at Robin’s request, around the bed of her dying friend. But in Gurwitch’s later essay “Death without Dignity” (2015) she admits that “I knew we were commit- ting a crime in the state of California.” She also expresses disbelief, in “828– 3886,” at what the friends had done, noting, “If someone had told me the night we met in 1989, throwing back drinks in a Century City screening room to celebrate the comedy special that she’d produced, that one day I’d be pumping morphine into an IV drip into this vibrant woman’s arm, I would never have believed it” (2014: 79). As the night wears on, Gurwitch’s doubts, and those of her friends, begin to grow. Robin is very close to death, but she wants to inter- act with her friends, and she keeps “rousing herself.” No, Gurwitch’s cohort tells her, “you can’t get up” (80). And something inside Gurwitch goes numb. More so than the loved ones in Ōgai’s “Takase Boat” and Humphry’s Jean’s Way, Gurwitch is terrified with how the night is unfolding, not because she is actively helping a loved one die but because she cannot be sure she is doing it correctly. Gurwitch laments that she had not gently guided Robin to “just let go,” instead admonishing her, “you can’t get up.” In other words, Gurwitch believes, “I’d cut her off.” Moreover, “It did not All Make Sense, and she couldn’t let go” (2014: 81). The women realize that they are the problem; as long as they are there, Robin will try to reach out for them. So one by one they depart, and Robin dies the next day; the hospice nurse is the only one in her home when she dies. The doubts continue to grow. Gurwitch wonders whether she had “misun- derstood what she [Robin] wanted, she was on so many drugs. Maybe what she’d really wanted was for me to beg her to hold on and keep fighting? Why hadn’t I said good-bye when it really was the time for good-bye? It was sup- posed to end in a circle of love! I was racked with guilt” (81). At her core, Gur- witch knows that she was clear on Robin’s intentions. Yet Gurwitch is vague regarding what Robin had instructed the group to do: “I knew what was being asked of us, even if it wasn’t spelled out. We all did. This was going to be The Good Death, carefully orchestrated, carried out by loved ones” (78). Carefully

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562 Chapter 9 orchestrated, but not discussed, at least not as Jean’s death is planned in Humphry’s memoir.27 Moreover, Gurwitch is overcome with regret at not say- ing good-bye at the proper time, at not being there for her friend when she died. And after Robin’s death, Gurwitch and her friends ponder their own futures. One friend suggests, “When we can’t wipe our asses, or if we forget who we are, let’s make a pact, we’ll jump off a cruise ship together,” to which Gur- witch responds, “We’ll have to make certain we’re really far out to sea. If we’re too close to port, we might hit the bottom and break a leg” (83). Observing that his wife continues to suffer, Gurwitch’s husband quips that she did the “right thing” by Robin but that “I don’t think I want to be left alone with you if I’m ever really sick” (83). This is what happens in a society where options for dying are so limited. Family and close friends, as loving as they are, often are at a loss as to what to do. They might be determined to help their loved one die, unwilling to let the pleas for assistance go unanswered. But they generally do not have the medical knowledge to be certain of the proper doses. They do not have the training to deal with the aftermath. Robin asked her friends to help her take her life in 2010, four years before Brittany Maynard’s diagnosis of incurable brain cancer, four years before Maynard moved to Oregon to take advantage of Oregon’s Death with Dignity Act, and five years before the passage of the California End of Life Option Act, which would have eased the burden on both Robin and her friends, enabling the latter to focus more on their “circle of love,” rather than be concerned whether their fingerprints would be traced or whether their beloved friend was dying as she had hoped. As Gurwitch concludes “Death without Dignity,” “If medical aid in dying had been legal, her doctor could have written the right prescription and allowed her to have the more graceful exit she wanted. Still, as imperfect as it was, we gave her a memorable send-off…. She was in a circle of love. I believe she knew that. I have to” (2015). Robin’s friends did their best to respect, and care for, the woman they loved. But, Gur- witch implies, how much more healing it would have been for everyone – both Robin and her close circle of friends – if providing mercy were not criminalized, or, to borrow Selzer’s image in “A Question of Mercy,” were not so impli- cated with being a villain. The same is true for Galician (Spanish) Ramón Sampedro and his loved ones in the Spanish director Alejandro Amenábar’s (1972–) Academy Award-winning

27 In the essay “Death without Dignity,” Gurwitch writes that one of their mutual friends “called to say that she [Robin] wanted our help to end her suffering” (2015) while in “828– 3886” the friend reports, “Robin says she needs help and this is the weekend she wants to do it” (2014).

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Providing Partnerships in Dying, Easing Death 563 film Mar adentro (The Sea Inside, 2004), based on the life and death of Spanish seaman and writer Ramón Sampedro (1943–1998).28 Paralyzed from the neck down in a 1968 diving accident, Sampedro fought for years in Spain’s lower and higher courts, with the Roman Catholic Church, and before the Europe- an Court of Human Rights for the right to have assistance in ending his life, since as a paraplegic he could not end it himself. Sampedro pursued this case so relentlessly because he wanted assurance that anyone assisting him in dying would be immune from criminal prosecution.29 Amenábar’s The Sea In- side differs from Sophocles’s The Trachiniae, Ōgai’s “Takase Boat,” Humphry’s Jean’s Way, and Gurwitch’s “828–3886” less by virtue of its genre than because Sampedro pleaded for death for three decades (i.e., he was not suffering from a terminal condition), fought his case in the courts, and was physically unable to take his own life, much like quadriplegic Ken Harrison in Brian Clark’s Whose Life Is It Anyway? discussed in Chapter 7.30 More than the other

28 The Sea Inside won the jury grand prize at the Venice Film Festival, as well as the award for best actor. Although popular with critics, The Sea Inside was far from a blockbuster. 29 After his diving accident, Sampedro wrote compelling essays and poetry on his suffering, on his own personal living hell, including the Spanish-language Cartas desde el infierno (Letters from Hell, 1996) and the Galician-language poetry collection Cando eu caia (When I Fall, 1998). The former opens with a prologue in which Sampedro declares that since the day of his accident he has been a “living head and a dead body” and that “you could say that I am the talking spirit of a dead man” (Desde ese día soy una cabeza viva y un cuerpo muerto. Se podría decir que soy el espíritu parlante de un muerto; 1996: 11). He then notes that his fate would have been very different had he been an animal; were an animal to have been left in such a condition, its life would have been terminated because it would have seemed “inhuman” (inhumano) to leave it in this state for the remainder of its life. Sampedro’s Galician-language poem, “Melancolía” captures well the spirit of When I Fall: “In my room / the window is a painting /of a green landscape, gray sky, and sea / with flowers painted by the spring / which I am already tired of looking at for so long // From my bed, fatally wounded / I smile sadly in order not to cry / only somewhat resentful toward fate / looking on dumbfounded as life passes by.” (No meu cuarto, / a fiestra é un cadro / de paisaxe verde, ceo gris e de mar, / con flores pintadas pola primavera / que xa me cansa de tanto o mirar. // Desde a miña cama, de morte ferido, / eu sorrío triste para non chorar / tan só contra a sorte algo resentido / vendo estupefacto a vida pasar; 1996: 39). Thank you to Manuel Azuaje-Alamo for this translation. 30 This is in contrast to individuals who can physically take their own lives and the agonizing decisions with which they are faced, as is the case of Joe O’Brien in Lisa Genova’s novel Inside the O’Briens (2015). Only forty-three when he starts exhibiting worrisome symptoms – disorganized thinking, uncharacteristic outbursts, and uncontrolled movements – he is diagnosed with Huntington’s disease (HD), a fatal neurodegenerative disorder for which there is no treatment or cure. Joe is a police officer and is well trained in the use of a fire- arm. He thinks of his gun, with which he is obsessed, as “his plan”: “The idea of cheating HD out of its fiendish end fills Joe with a sense of justice, even sweet victory. He’s going to go out on his own terms. He’s not going to give HD the diabolical satisfaction of finishing

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564 Chapter 9 narratives examined in this section, The Sea Inside draws attention to the exceptionally heavy burden a system that prevents family members and close friends from fulfilling their loved one’s last wish can put on the person longing to die. This is the case not only in terms of significantly prolonging death (in Sampedro’s case for years) but also in terms of the anxiety of the person asking for death regarding the wellbeing of those who would assist them in dying, and the fear that these individuals might be prosecuted and their reputations compromised. Spanish television startled the nation in March 1998 by broadcasting a few minutes from a homemade video of Sampedro – taken on January 12, 1998 – drinking through a straw a glass of water that had been laced with cyanide. Before swallowing the lethal liquid that brought about his death some forty minutes later, Sampedro announced, “When I drink this, I will have renounced the most humiliating of slaveries: being a live head stuck to a dead body” (“A Suicide Tape” 1998). He also asserted, “I consider life a right, not an obliga- tion, as it is in my case. I have been forced to endure this terrible situation for 29 years, four months and a few days” (Casino 2004: 864). Following Sampe- dro’s death, his companion Ramona Maneiro Castro was arrested for his murder, but she was released for lack of evidence. At the time, many believed that in fact Sampedro had delegated discrete actions to close friends and family members (one person to purchase the cyanide, another to measure it, another to pour the water, etc.).31 End-of-life debates have been occurring in Spain for decades.32 Since the mid-1990s, opinion polls have revealed that the majority of Spaniards support

him off. The good guy will win in the end, and HD will lose. Of course, the good guy wins by dying, but at least this way, he deprives HD of taking the credit” (2015: 270). In the end, Joe decides against using the gun on himself, resolving to do his best “with each day he has, mindfully showing his kids how to live honorably with HD” (283). Joe’s decision is complicated by the fact that his is a genetic condition which his children have a 50 percent chance of inheriting. He becomes concerned that by taking his own life, he would be encouraging his children to do the same, were they to have inherited the disease. 31 In 2005, after the statute of limitations had expired, Ramona Maneiro Castro admitted on a television talk show that she had provided Sampedro with the glass of water laced with cyanide: “I did it for love…. I measured the cyanide, I put it in the water. I put the straw in the glass and I put it where he could sip it. I was his hands. I did what he asked” (Nash 2005). 32 Before Sampedro, euthanasia and suicide were largely taboo subjects in Spain, and the few organizations defending the right of Spaniards to die had little influence on public discourse. Simón-Lorda and Barrio-Cantalejo (2012) summarize the Spanish debate on euthanasia, dividing the controversy into three periods: before 1978, 1978–2002, and after 2002. In early April 2019, Spanish citizen Ángel Hernández was arrested for helping his wife María José Carrasco swallow a substance that resulted in her death; she had been

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Providing Partnerships in Dying, Easing Death 565 decriminalizing assisted suicide, but those in power have rejected their demands, in large part because of the interference of the Roman Catholic Church (Guerra 1999: 428; Jordan 2004). Not surprisingly, both the Catholic Church and the medical establishment condemned the manner of Sampedro’s death. Mass media featured disabled individuals speaking of their love of life. But protesting Spain’s criminalization of assisted death, as well as the arrest of Sampedro’s companion Castro, thousands of Spaniards wrote the government claiming they were responsible for helping Sampedro die. A poll conducted not long after Sampedro’s death found that 75 percent of Spaniards were opposed to criminal prosecution in this case, and 67 percent believed that “voluntary euthanasia” should not be punished. Spain’s parliament established a commis- sion to study the question of euthanasia, but this body simply reaffirmed the illegality of the act (Casino 2004: 864; Guerra 1999). The Sea Inside, released six years after Sampedro’s loved ones helped him take his life, its title taken from the title of one of Sampedro’s many poems, reignited Spanish debates on assisted death.33 Many critics, especially in Spain, regard this film as a cinematic masterpiece, in part a result of its combining the “stunning technical effects and visual spectacle of cinema … with the smaller- scale and more conservative style of TV melodrama.” Others, largely outside Spain, decried its sentimentality, its “shallow” story, “sucrose” score, and resemblance to a “classy TV movie” (Smith 2009).34 Irrespective of its artistic attri- butes and deficiencies, the film provides a compelling portrait of a gentle, articulate man, one with a loving family and particularly a sister-in-law who has selflessly cared for him for years. This is not to say that Ramón’s family members do not sometimes feel overwhelmed. They do. But they also make clear their deep love and attachment for him. Even so, Ramón is unwavering in his desire to die, a desire that has endured for decades.35 Describing the accident that left him paralyzed from the neck down, he declares, “I should have died that day.” Since the fateful dive, Ramón has had no interest in living, unwilling

suffering severely from multiple sclerosis and had made public her desire to die. In response, Prime Minister Pedro Sánchez (1972–) promised that he would legalize euthanasia if the Socialists received a parliamentary majority in the April 28 elections (Minder 2019). The debates have continued, with no resolution in sight. 33 In the poem “Mar Adentro” (The Sea Inside), the poet speaks of “always wanting to be dead” (siempre quiero estar muerto), even as he longs to be enveloped in the hair of his beloved. 34 The comparison to a “classy TV movie” is ironic given that television inspired both the narrative and the casting of The Sea Inside and is referred to repeatedly in the film (Smith 2009: 111). 35 Sampedro’s sister-in-law Manuela Sanles was largely responsible for his care.

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566 Chapter 9 to exchange his travels around the world for life in bed or even in a wheelchair. And he asserts that love for him is manifested not in attempting to make him “want to live,” as Rosa, a woman who has learned about him from the media and eventually becomes a friend, announces at their first meeting she will do. Instead, Ramón makes clear that “the person who really loves me will help me die.” He asserts, “I have determined that mine is a life without dignity. I would have at least wanted to die with dignity…. Today I am obliged to do this in secret, like a criminal.” Despite Ramón’s conviction at the end of the film of the criminality of his own behavior, The Sea Inside reveals him bearing an even larger burden, the fate of his friends. It is after all concern for his friends that prompted him to pursue his case in court; he knows that were he to die, the courts would be much less concerned with his complicity in his own death than with the complicity of his friends. To be sure, director Alejandro Amenábar claimed that The Sea Inside was not a mandate for euthanasia, including assisted death. Instead, the film’s purpose was to expose audiences to the “abyss of death”: “It’s more a reflection than a demand. I am sure that euthanasia will be regulated in the future and I do not want this film to lose its validity” (Casino 2004). But in de- picting such a well-spoken, sympathetic character who is clear about his own desires yet at the same time careful not to let these desires compromise the wellbeing of his loved ones, The Sea Inside calls for renewed consideration of increasing options both for individuals such as Sampedro and for those who care most for these individuals. The film makes a strong case for the importance of listening to and respecting individual voices, rather than demanding that people continue to live under conditions they have decided are unendurable to them personally, however tolerable or even enjoyable similar conditions might be to others. Similarly, Ramona Maniero titled her memoir Querido Ramón: Un testimonio de amor (Dear Ramon, A Testimony of Love, 2005), and she makes clear from the beginning that helping Sampedro die was an act of love (lo hice por amor, 15). In this case, loving Sampedro meant performing an act of love that threatened Maniero’s own future. The focus, both Maniero and The Sea Inside argue, needs to be on alleviating suffering, not insisting on suffering.

3 Partnerships Redefined

One of the near constants of medicine across cultures is a question the families of patients facing difficult decisions frequently ask health professionals:

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“If this were your parent, what would you do?” For physician Haider Warraich, the answer is, “Tell me more about your parent” (2013). In other words, what to do depends almost entirely on the personality of that particular parent – what would this person consider a good life, and what would they see as worth the fight (Warraich 2016). These are the questions that loved ones need to be asking when patients can no longer make decisions about their care or even contribute to conversations about these decisions. And these questions become particularly poignant when a person is so close to death that they cannot speak, yet their suffering is indisputable and appears to be exacerbated by the very mechanisms that are keeping them alive. As difficult as the choices and conditions are for loved ones in the narratives discussed in the previous two sections, at least their dying family members are clearly articulating what they want to see happen; there is no ambiguity.36 In contrast, individuals in this section – from texts as diverse as Wendell Berry’s “Fidelity,” Cathy Rentzen- brink’s Last Act of Love, Isabelle Allende’s Paula, and Terrence Holt’s Internal Medicine – must decide whether to withdraw care from family members, some quite elderly and others barely adults, who have lost consciousness, cannot communicate, and have no hope of recovery. These narratives counter a common misperception surrounding death, namely the idea that it is somehow unnatural or aberrant to believe that death can be appropriate for someone, including a loved one, in great agony. In contrast, the texts discussed here provide compelling testimony to the importance of thinking in advance about what a particular individual likely (or certainly) would want if they were unconscious and suffering, on the verge of death; and then acting in accordance with those wishes.37 American writer and environmental activist Wendell Berry’s (1934–) “Fidel- ity” (1992) features a family desperate to do something for a loved one no longer

36 See too Kaitlin Solimine’s novel Empire of Glass (2017), which depicts a sixteen-year-old American exchange student in China (known to her host family first as Menglian and then as Lao K) taking her terminally ill forty-four-year-old host mother Huang Li-Ming to Coal Hill (above Beijing) to die with rope Lao K has purchased. Li-Ming had told Lao K, “I need you to help me to my ending,” and although Lao K initially protested that “you’re not that sick,” four months later she agrees: “Yes, I will take you to the tallest mountain in the city. Yes, I will find a way to end this. Yes, you will be cloaked in white and we will mourn you for decades, until we ourselves are the ones being mourned” (2017: 84). The novel does not depict the actual scene of assisted suicide, however, and it suggests that Li-Ming might have died on her own. 37 Cf. such works as David B. Axelrod’s (1995–) poem “Consent,” where an elderly woman first accuses her children of simply wanting her dead, and then, when she lapses into a coma, the children make the physician “stop all heroic measures” (2011).

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568 Chapter 9 able to communicate his own wishes.38 This short story chronicles the last days of octogenarian Burley Coulter (“Uncle Burley”), a farmer living in rural Port William, Kentucky, a fictional town that is the setting of much of Berry’s prose and is based on his hometown of Port Royal (pop. 64). Witnessing Coulter’s rapidly failing health, his son Danny Branch, daughter-in-law Lyda, nephew Nathan, and Nathan’s wife, Hannah, debate what they should do. Burley has never been to a physician, at least not since any of the four have known him, and more important, he has said he “wouldn’t go” to see a health professional. But Burley’s family is desperate, and although Nathan protests that Burley probably would have wanted to die like “an old animal,” in his sleep under a tree, far away from doctors and hospitals, the family drives him to the doctor “because they wanted to do more for him than they could do, and they could think of nothing else” (1992: 110). The doctor, not surprisingly, wants Burley admitted to the hospital and reassures the family that he hopes “to have him on his feet again very soon” (111). Burley initially improves but then slips into a coma. Unresponsive, he is attached “to the devices of breathing and feeding and voiding.” The narrator contrasts the physician, who speaks “fluently from within the bright orderly enclosure of his explanation, like a man in a glass booth,” with Nathan, Hannah, Danny, and Lyda, who look at Burley “from the larger, looser, darker order of their merely human love” (113). While the physician counsels them not to worry, that there are places well equipped to care for the dying Burley, the family has a very different perspective:

When they returned on yet another visit [to the hospital] and found the old body still as it had been, a mere passive addition to the complicated machines that kept it minimally alive, they saw finally that in their attempt to help they had not helped but only complicated his disease beyond their power to help…. Loving him, wanting to help him, they had given him over to “the best of modern medical care” – which meant, as they now saw, that they had abandoned him…. [They were] shaken by the remorse of a kind of treason. (113)

But unlike Terrence Holt in Internal Medicine, discussed below, the physician does not consult with the family, never asking them what Burley would want. Accordingly, believing themselves devoid of options, and perhaps not even thinking to request the release of their loved one, the family decides to

38 Berry has been a lifelong resident of Kentucky and has worked tirelessly to improve the health of the land and of rural communities there. His work has been translated widely.

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“kidnap” him from the hospital. One night Danny “gently” withdraws the tube from Burley’s nose, “gently” pulls away the adhesive tapes that secure the in- travenous needle in Burley’s arm, “gently” lays him on the gurney, and wheels him out of the hospital (123–124), the narrator repeating the word gently to underscore the great love and care with which the family removes Burley from the hospital. Back on the farm, Danny carries Burley to a small shed, where he lays him on a bench and covers him to keep him warm. It is here, the narrator confirms, that Burley belongs. And it is here that he soon dies, Danny watching over him. Whereas in the hospital, Burley’s body had “seemed to Danny to be off in another world,” back home “the old body seemed to belong to this world absolutely, it was so accepting now of all that had come to it, even its death” (160–161). Law enforcement, however, is not so accepting, and the police are determined to catch the kidnapper. “Fidelity” makes clear just how distant they are from the family in mind and spirit: Detective Kyle Bode, who quite unlike Bur- ley and his kin is described as objecting to, even offended by, “hills and hollows … especially if they were all overgrown with trees,” believes Burley’s kidnapping to be “a crime involving the new medical technology…. I figure this crime is partly motivated by anxiety about this new stuff. Like maybe the guy that did it is some kind of religious nut” (145, 162). “Fidelity” shows that it is not anxiety “about this new stuff” but rather anxiety about the utter dehumanization of their loved one that drove Burley’s family to remove him from the hospital. That they did not just check him out of the hospital, or at least attempt to do so, points to their utter powerlessness and unfamiliarity with the healthcare system. But Burley’s family has eloquent advocates both in the narrator of “Fidelity” and in their attorneys, Wheeler and Henry Catlett. Whereas in Internal Medi- cine Holt states that it was actually easier on physicians when terminal patients died, so they would not have to witness such suffering, in Berry’s short story Wheeler argues that the physicians and hospital are in fact driven more by money than by the desire to relieve suffering:

[The medical profession was] doing their solemn duty [keeping Burley alive] as defined by themselves. And they were getting luxuriously paid. They were being merciful and they were getting rich. Let us not forget that one of the subjects of our conversation is money – the money to be spent and made in the art of medical mercy…. Before long the patient is hostage to his own cure…. You’ve got some poor sufferer all trussed up in a hospital, tied and tubed and doped and pierced with needles, who will never draw another breath for his own benefit and who may breathe on

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for years. It’s a bad thing to be paid for, Mr. Bode, especially if you’re in the business of mercy and healing and the relief of suffering. (173)

The people of Port William have long protested state interference. Henry reminds the detective that this is the same state that shuts down local business- es, claiming failure to meet sanitary standards, while at the same time enabling other, wealthier enterprises to “poison the air and water,” all without asking residents for their input (165). This is the same state that makes a practice of “robbing and impoverishing the country people and their places” (165). And the community, which readily gathers around Burley’s family, makes it clear that they do not accept a system whereby they spend their whole lives accu- mulating a few thousand dollars in savings, “only to have it entirely taken away by two or three hours in an operating room and a week or two in a hospital” (178). Most important, the death that health professionals and the authorities had expected for Burley was not the death that was right for him. In the final pages of “Fidelity,” Burley’s family and friends speak of him as a man who had always refused “to live within other people’s expectations” (183). He was a man who cared tenderly for his own mother when she was dying, a “faithful man” (186). As Henry informs Bode in the final lines of Berry’s story, “He has disappeared into his people and his place, not to be found in this world ever again” (189). “Fidelity” ends peacefully. The text implies, given everything that is said about Burley, that the death his family provided was the death he would have wanted. But “Fidelity” also raises the question of what happens to individuals who do not have such a supportive and courageous family, whose families do not feel comfortable challenging the medical establishment, either verbally or through acts that are likely to be criminalized by courts and judges who cannot understand why someone should not die according to state guidelines. The legal system is much less of a barrier in British writer Cathy Rentzen- brink’s (née Mintern) The Last Act of Love: The Story of My Brother and His Sis- ter (2015).39 But the Mintern family has an even more difficult time attempting to do what is best for their beloved son and brother than does Burley’s family in “Fidelity.” While Burley’s family simply does what they know is best for their dying loved one, having devised clever strategies to avoid the potential legal

39 Cf. Lu Spinney’s Beyond the High Blue Air (2016), which describes the brutal aftermath of her son Miles’s snowboarding accident that left him in a minimally conscious state. Writes Spinney, “I wish Miles had died the beautiful, violent death he faced that ice-clear morning. Then it would have been as it should, a quick, brilliantly lit thing, a leap for joy into the glittering sunshine and the high blue air. No suffering, no pain, just an end, clean and quick, like his clean, quick, brilliant mind” (2016: 202).

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Providing Partnerships in Dying, Easing Death 571 consequences, Rentzenbrink’s family become martyrs who mainly suffer in silence until they finally are no longer able to endure the anguish. Last Act of Love is the story of the family following the accident in 1990 that left Rentzen- brink’s then sixteen-year-old brother Matthew (Matty) Mintern in a persistent vegetative state, the difficulties they and their community had accepting that there was no hope of improvement, and the heartrending decision they made eight years later to have Matty’s feeding tubes removed. Rentzenbrink describes herself immediately following the accident as having prayed fervently that God keep her brother alive. She recognizes the irony – her prayers were answered, but she writes that she knows now that “it would have been better for everyone if, as she knelt here, begging for his life, his heart had ceased to beat … if death had been pronounced, accepted, dealt with. It would have been so much better if Matty had died then” (2015: 3). Immediately after the accident, Matty’s surgeon tells the family that he has saved the life of their son and brother, but he also adds, “We don’t know yet whether that was the right thing to do” (22).40 Yet the nuances are still lost on Rentzenbrink, who remembers that “all I cared about was that Matty lived.” She is relieved that her brother has not suffered the same fate as a young man brought to the emergency room at around the same time as Matty: a massive brain hemorrhage that leaves him brain dead and the ventilator turned off (24–26). Although Matty’s family initially retains hope, the progress of their son and brother is negligible. The superior student who three weeks before the accident had received the school’s top grades on the gcse (General Certificate of Secondary Education) exams now cannot communicate, even by blinking. Af- ter nine months of caring for him, the hospital determines that they need his bed for “more hopeful cases.” Matty’s lack of progress renders him ineligible for the specialist rehabilitation unit, and so the family decides to take him home. After their dog Polly dies a sudden death, for the first time Rentzenbrink allows herself to consider “even for a second that it might have been better if Matty had not lived” (72). She comes to resent people who do their best to express sympathy but who she knows have no idea of the extent of her family’s suffering. Slowly the family becomes aware of possible options. Last Act of Love reports that every time Matty was readmitted to the hospital with an infection,

40 In Rescuing Jeffrey (2000), Richard Galli describes his family’s very different reaction to the aftermath of their teenage son Jeffrey’s near-fatal dive into a swimming pool that has rendered him a C1-C2 quadriplegic, able to move nothing below his neck. From the beginning, they debate whether to terminate Jeffrey’s life support, surprising physicians who assume that they would want their son alive at all costs.

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572 Chapter 9 the medical staff asked whether they wanted him to be treated. They always responded affirmatively, because they loved Matty and did not want him to die. They also, Rentzenbrink admits, “became experts at shutting out what we didn’t want to hear, ignoring any evidence that indicated there was no hope” (2015: 92). This continues until they become more aware of the parallels between Matty’s condition and that of Tony Bland (1970–1993), another young man in a persistent vegetative state who had been severely injured in the Hill- sborough stadium stampede (1989) and whose parents and physicians had brought a case to the courts “that he should be allowed to die by withdrawing artificial nutrition and hydration” (ibid.).41 This thought is put aside, Rentzenbrink suffering in silence until another of Matthew’s emergencies, when for the first time she asks herself what her brother would want.42 But this question is quickly suppressed: “Every other time he’d come close to death and then survived we’d treated it as a triumph. This was the first time I caught myself wondering if it might have been better if he’d died. Would Matty have wanted this life? Unable to do anything except open his eyes, have epileptic fits, occasionally make noises when in pain? I didn’t allow these thoughts to develop, nor did I see how I could ever voice them to my parents, but they were there” (100). Soon thereafter Rentzenbrink embarks on a three-month trip to France. Upon returning home she recognizes clearly, “He was gone. I now felt more sure than ever before that it would have been better for him, better for everyone, if he’d died on the night of the accident” (107). She finally summons the courage to speak with her parents, who have little identity beyond being part of Matty’s care team: “It seemed perverse. It felt like the three of us were sitting on Matty’s funeral pyre and refusing to get off” (117). Rentzenbrink gradually broaches the topic with her parents, who at first resist but then begin to consider what their daughter is proposing as a

41 The Hillsborough disaster took place at Hillsborough Stadium in Sheffield, England, on April 15, 1989; 96 people died and more than 750 were injured when during a soccer match the police match commander opened an exit gate to alleviate congestion outside the stadium. The ensuing chaos led to soccer fans being trampled and crushed against steel fenc- ing. Police and other officials initially blamed fans for their own deaths; it was only in April 2016 that a jury found that the fans who had died during this incident had been “unlawfully killed” (Bilefsky 2016). Bland’s parents and physicians were ultimately suc- cessful in their request that the life-prolonging treatment be withdrawn. 42 Much of Last Act of Love is focused on Rentzenbrink’s pain, which outside her writing she does her best to conceal: “I tried to behave more like a normal person when I was out in the world, and it worked. I became cheerful, even boisterous. No one had the least idea how I felt on the inside” (96). And she asks, as she and her family continue taking care of Matthew, “How could it just keep getting worse? How much more could I bear? I felt trapped in a never-ending narrative of awfulness” (99).

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Providing Partnerships in Dying, Easing Death 573 legitimate option. In December 1996, they receive the support and approval of their family physician, and in December 1997, more than seven years after the accident, they apply to the court to discontinue all life-sustaining and medical support measures. Their petition summarizes Matthew’s life, especially the past seven years: “We are asking the court’s permission to cease nutrition and hydration so that Matthew can be released from his hopeless state. It is our last act of love for him” (143). The family also asks that Matthew be allowed to die at home. The court agrees. And so they bring home their beloved son and brother, and he passes away, thirteen days after hydration, nutrition, and medication are withdrawn. Matty’s suffering has come to an end, but Rentzenbrink’s anguish continues. She is particularly frustrated with what she now realizes is the unnecessary pain and isolation her family experienced. Difficult enough was the city objecting when they sought to convert their garage into a separate space for Matty, so they would no longer need to carry him through the family’s pub every time he had a medical appointment outside the home, putting on display his “giant wrecked body … vacant eyes … and crater in the side of his head” (76). More traumatic was the lack of acknowledgement of the impact of Matty’s condition on their family, and that there were so few resources for them. Looking up other cases of people in permanent vegetative states, Rentzenbrink is relieved to find a published report declaring that once a patient has been confirmed to be in a permanent vegetative state, “it is not only appropriate but necessary to consider withdrawal of all life-sustaining treatments…. Indeed, to continue to deliver treatment that prolongs their life in that condition in the absence of a reasonable belief that treatment is in the patient’s best interest may be re- garded as an assault” (210). Reading on, Rentzenbrink learns that hers was not the only family to have believed in miracles but that often these families come to regret the efforts to save the life of their loved one. Rentzenbrink thinks back to the heroic attempts to save her brother from the lung infection that so readily could have taken his life and wonders whether this was really the right thing to do. And she is heartened by the report’s acknowledgment of the “burden on relatives”: “I felt less like a weed when I read about how clinicians have to be specially trained…. I didn’t think it was anyone’s fault – but I hoped that if it happened now it wouldn’t unfold for others the way it did for us. It really shouldn’t have been Mum and Dad alone in the bungalow with a supply of di- azepam suppositories” (212). The events of her young adulthood continue to haunt Rentzenbrink years later, even after she marries and has a child of her own. It remains difficult for her to come to terms with the fact that she and her family felt relief at Matty’s death, even though withdrawing food, water, and medication was the best

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574 Chapter 9 course for their beloved son and brother: “I know that when I first wanted us to consider withdrawal I was focused on what was best for Matty. The problem was, it dragged on so long that by the time it came to it, I desperately wanted it for me, too, and that was confusing” (220). Moreover, Rentzenbrink sees herself as “‘a by-product’ of a wider societal problem – that we don’t know how to deal with the shades of grey that now exist around life and death. We don’t know what to do with the unsuccessful output of the surgeon’s scalpel” (223). Read- ing the narratives of others, she recognizes that their experiences are not that different from hers: “We’ve arrived at certain thoughts because of our individual but shared experience…. I watched a man say almost exactly what I had once said, that we extend more courtesy to serial killers on death row than we do to our nearly dead. There was a lot of talk about pets, how it’s better to be a poorly animal than a poorly person…. There are kinder ways to bring life to an end than starving someone to death” (223). And then in a letter to her deceased brother, which concludes The Last Act of Love, she writes, “I’ve worried and worried over the years about what an unnatural thing it is to desire and bring about the death of a loved one. How could I have wanted you to die when I loved you so much? … No one has much of an idea or plan about what should happen when life-saving interven- tions and neurosurgery lead to a horrible outcome. That’s why people like me are made to feel like murderers. It shouldn’t happen. I nearly went doolally” (234). So even though the courts readily granted their family permission to withdraw life-sustaining care, even though Rentzenbrink and her parents knew that there was no hope of Matty ever coming out of a persistent vegetative state, and that Matty would not have wanted to spend his life unconscious, still she felt like a “murderer,” a criminal, not unlike Burley’s family in Berry’s “Fidelity.” Both Last Act of Love and “Fidelity” make clear the need not only for better care at the end of life but also for increased resources for those with a loved one close to death, particularly when this loved one is unable to make their wishes known. Far from being stigmatized, indeed criminalized – literally or figuratively – these individuals need society and health professionals in particular to provide them with options and then to speak with them frankly, yet respectfully and empathically, about the prognosis of their loved one and the choices available to them regarding care. Chilean American writer Isabel Allende’s Spanish-language memoir Paula (1994) argues similarly but from the very different perspective of a mother who for months is unwilling to accept that her daughter will never emerge from a persistent vegetative state and that for her daughter, indeed for the entire

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family, healing means letting her daughter go.43 Paula is Isabel Allende’s first memoir, at once a tale of her childhood in Santiago and years in exile and the chronicle of the death of her daughter Paula Frias Allende, who suffered from the metabolic disorder porphyria, an inherited condition. In 1991, at the age of twenty-eight, Paula fell into a coma (persistent vegetative state) in Madrid; she died in California in December 1992. A bestseller in both North America and Europe, Paula has been translated into more than two dozen languages world- wide. The memoir is a testimony to Allende’s deep love for her daughter and her determination to secure for Paula the best care possible. Paula also is a scathing indictment of a medical system where health professionals treat their severely disabled patients as less than human and too readily dismiss the often deeply grieving families of their patients, failing to be straightforward with them concerning the prospects for their loved one and/or making light of their beliefs, concerns, and sorrows. Following an explanatory note about the conditions under which Paula was written, Part 1 begins with the narrator, Isabel, urging her daughter Paula to listen to her, then stating, “I’ll tell you a story, so that when you wake up you won’t be so lost. The family legend begins early in the last century, when a burly Basque sailor landed on the coast of Chile” (1995: 11).44 But it soon becomes clear that Paula will be much more than a story of Isabel’s heritage. Several pages into the narrative Isabel interrupts her tale with, “Where are you wan- dering, Paula? How will you be when you wake up? Will you be the same woman, or will we have to learn about one another as two strangers?” (15). Her daughter’s present condition is never far from her mind, and questions about

43 Allende is one of the world’s most widely read Spanish-language authors, known primarily for such novels as La casa de los espíritus (House of the Spirits, 1982) and La ciudad de las bestias (City of the Beasts, 2002), both of which have been translated into more than three dozen languages. Born in Peru to Chilean parents, raised in Chile, Bolivia, and Leba- non, and then spending much of her adulthood away from Chile, Allende became an American citizen in 2003 and lives in California with her second husband. Some have had harsh words for her fiction – fellow Chilean writer Roberto Bolaño (1953–2003) called her a “writing machine,” rather than a “writer,” while another Chilean writer, Gonzolo Contre- ras (1958–), has insisted that Allende’s commercial success belies the (poor) literary quality of her works. But 1971 Nobel Prize-winning Chilean poet Pablo Neruda (1904–1973) was an early supporter, and many have celebrated Allende as a master of magical realism; over the last thirty years she has received dozens of accolades. 44 In the explanatory note Allende describes how in December 1991 her daughter fell into a coma, and that she wrote the memoir first in the hospital and hotel room in Madrid where she lived for several months, and then beside Paula’s bed at their home in Califor- nia during the summer and fall of 1992, before her daughter’s death that December.

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576 Chapter 9 what Paula will remember when she wakes up rapidly change several pages later into intimations that she might not recover, with Isabel declaring that “on this January 8, 1992, I am writing you, Paula, to bring you back to life” (para traerte de vuelta a la vida, 17). Isabel describes conditions in the hospital where she is watching over Paula, juxtaposing the kind words of strangers, both patients and visitors, with the insensitivity of her daughter’s physician: “This man [the specialist] holds your life in his hands, and I don’t trust him. He passes through like a breeze, dis- tracted and in a hurry, giving me worrisome explanations about enzymes and copies of articles about your illness that I try to read but don’t understand. He seems more interested in the statistics from his computer and the formulas from his laboratory than in your body crucified on this bed” (16). Isabel continues by noting that when the specialist speaks with her he does not make eye contact. She points to the significant disconnect between numbers, formulas, statistics, medical data, and research on the one hand and, on the other, the actual people from whom these numbers are gleaned (the research subjects), the people into whose conditions they might provide some insight (current patients), and the families of these patients. And she reveals the difference that being personally invested in a patient can make. Despite the reassurance of the specialists in Madrid, Isabel has a premonition that her daughter will not recover; her fears are echoed by the observations of her close friend Ilde- maro, a physician who flies in from Caracas to comfort her. While there he looks closely at Paula’s records and examines her thoroughly, “with the special affection he feels for you” (91). When Isabel tells him that “they assure me she will recover completely,” Ildemaro responds, “I love you too much to lie.” When asked whether he thinks she might die, he responds with a simple “yes” (92). Yet Isabel is not prepared to let her daughter go. Two months into her coma, Paula suddenly takes a turn for the worse, her blood pressure plummeting. Isa- bel describes the medical teams working furiously on her feverish daughter and the unvoiced wails of the family so powerful that Paula’s husband, Ernesto, an hour away, knew instinctively to return to the hospital. And just as the nurses are about to disconnect the tubes, Paula’s heart begins to beat again. In the days after the incident, the porphyria specialists claim there is no brain damage, and Isabel repeats these words “as an enchanting formula that can bring salvation” (como una fórmula de encantamiento que puede traerte la sal- vación, 108). Unlike Paula’s husband and grandmother, who no longer pray that Isabel will recover but instead that she does not suffer any longer, Isabel declares, “I have not lost the will to keep fighting for you” (124). Instinct tells her that any recovery, no matter how slight, will require monumental effort. But she perseveres, working with the neurologist assigned to her daughter to strengthen Paula’s lungs and wean her off the respirator. Whereas the porphyria

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Providing Partnerships in Dying, Easing Death 577 specialist sees Paula only very rarely – preferring to read his patient’s chart rather than stand at her bedside, much less sit with her – the neurologist is described as sensitive to the needs of both patients and their families. Al- though well aware that Paula might never be able to breathe on her own, the neurologist nevertheless is willing to listen to Isabel and take her seriously, tell- ing her, “I suppose that mothers always know better than anyone else” (125). And before long Paula can breathe without assistance. She is moved from intensive care to the Department of Neurology, where she shares a room with five others. Isabel learns to care for her daughter, bathing and changing her bedding, even as Paula suffers from violent spasms and others urge Isabel to pray that God takes her daughter quickly. Giving care takes its toll, and exhaustion settles in. But even though little about her daughter’s condition has changed and there are no signs of consciousness, two weeks after the move Isabel declares that she has not given up hope and that she believes that despite everything, her daughter will recover sufficiently to live a nearly normal life. When Isabel rejects her husband Wil- lie’s attempts to prepare her for the worst, unhappy with promises that looking after Paula will give the family new purpose and that they will discover new forms of happiness, Willie accuses her of being obsessed: “She’s all you talk about; you can’t think of anything else. You’re rolling down an abyss with so much momentum that you can’t stop” (176). And indeed, Isabel will not be deterred. When the director of physical therapy refuses to work with Paula, pointing out that he cannot be responsible for an unconscious patient with an open tracheotomy who is unable to follow instructions of any kind, Isabel determines to move Paula to California, promising her daughter that she will gradually recover and eventually be able to speak with her family and tell them about what life was like in her coma. As weeks stretch into months, Isabel becomes even more frustrated with hospital personnel. She describes a visit from a physician and group of medical students and complains that they show her daughter no respect, talking about her as though she could not hear and treating her as though she were already a corpse. She believes that Paula’s condition has improved but that the physicians remain unaware of the changes because they “don’t have time to observe you, and all they see is a paralyzed and spastic woman who doesn’t even blink when they shout her name” (213). Isabel and Ernesto agree that death is not the worst that can happen; instead, the worst is “for Paula to stay as she is” (Paula se quede como está, 212). And Isabel believes strongly that Paula’s current condition is only temporary. The second part of Paula opens with Isabel seeming to come to terms with her daughter’s condition, admitting that her daughter is not going to wake up, that she is writing pages her daughter will never read. But immediately she

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578 Chapter 9 stops herself: “No! Why do I repeat what others say if I don’t really believe it?” (227). The kindly Spanish neurologist gently explains to Isabel that there is no hope, that Paula is not suffering and will be well cared for in Spain. But Isabel will have none of it and is determined to take her daughter to the United States, regardless of the expense. She declares this the second major tragedy of her life, the first being the Chilean military coup of 1973. Again she notes that despite being told repeatedly there is no cure for her daughter, she does not believe this to be the case; her daughter will receive the help she needs in the United States. Yet when physicians at the rehabilitation center in California to which they move Paula come to a similar conclusion as those in Europe, and then ask Isabel what should be done in the case of pneumonia or a serious infection, whether she would want the health team to treat her daughter aggres- sively, prolonging her life, Isabel states firmly, “Paula will not be returned to the intensive care unit, nor will we have her tortured with new blood transfusions, drugs, or painful tests. If her condition is serious, we will be at her side to help her die” (estaremos a su lado para ayudarla a morir, 258). Nonetheless, Isabel still refuses to give up hope, moving Paula home, bringing in alternative heal- ers, but making it clear that there will be no “Frankenstein experiments” on her daughter (262). Isabel writes that in the weeks that follow this encounter, her daughter visits her in her sleep. One night she tells her mother that she is ready to die and that she needs her mother to release her grip: “Help me one more time, Mama. You’ve fought like a lioness to save me, but reality has won. Everything is use- less; give up, stop the doctors, medicines, and prayers, because nothing will make me healthy. There will be no miracle, no one can change the course of my destiny, and I don’t want this. I’ve done my time, and it’s time to say goodbye” (348). Paula continues in the dream, explaining that her mother is the only one who does not understand her desire to be free, who does not understand that she will never be as she was before. She reassures her mother that the two will always remain close and that she will become a constant, gentle presence in her mother’s life. Paula also reveals that her brother Nicolás is the only one courageous enough to set her free and urges Isabel to give him the opportunity to do so. The urgent nighttime messages continue and Isabel is torn – when her brother Juan cautions that she should not prolong Paula’s life “artificially” but that neither should she shorten it, Isabel asks rhetorically what he means by “artificial,” explaining that essentially everything she does for Paula is unnatu- rally extending her daughter’s life. But despite these measures, Paula’s body begins to shut down, and she dies quietly in early December 1992. Isabel acknowledges that “parting from Paula was an unbearable torment, but it would

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Providing Partnerships in Dying, Easing Death 579 have been worse to see her slowly agonize for the seven years predicted by the I Ching sticks” (361). Allende’s love for her daughter is profound, as are her attachment and her grief. Paula describes the lengths to which a devoted parent will go to make certain that their child has the best care possible. And it reveals how very difficult it can be to let go, even if the parent ultimately realizes, as Isabel does, that there is no more hope for her child. Just as with Matty’s family in Rentzen- brink’s Last Act of Love, Paula’s family and especially her mother eventually come to understand what they must do for their loved one, as the last act of love. But their acceptance is complicated by a healthcare system, and a society, inadequately equipped to meet the needs of grieving loved ones. Terrence Holt’s memoir Internal Medicine (2014) provides a doctor’s perspective, exposing a more empathic approach, one that supports even families who are determined to keep their comatose loved one alive. But it also sounds a note of caution. While in Berry’s “Fidelity” Burley’s family instinctively knew that the aging farmer would not have wanted to spend his last days tethered to a hospital bed, in Rentzenbrink’s Last Act of Love and Allende’s Paula, what Matty and Paula would have wanted is not of foremost concern. Instead, their families do what they need to do for themselves, only belatedly thinking about whether continuing on in a persistent vegetative state is best for Matty and Paula, much less what these young people would have wanted. For Holt, however, the central question is, “What would Muriel want?” Holt introduces Muriel Wallace, a comatose, sixty-two-year-old woman whose stroke has left a large intracerebral hemorrhage (cerebral bleed). Neurosurgery has signed off on her, declaring her prognosis “dismal,” and as Holt wryly points out in Internal Medicine before describing his initial conversation with Wal- lace’s family, “you didn’t need to be a neuroradiologist to call this one…. With a bleed like this, there’s essentially nothing to be done” (2014: 112–113). But the problem, Holt explains to Wallace’s family, is that “we’re keeping her alive. We have a machine breathing for her…. And tubes running in and out of her. She’s on life support. She can’t speak for herself now. She needs you to speak for her…. And the question she’s going to need you to start thinking about – and may need you to answer very soon – is this: Do you think she would have wanted all this?” (116). Holt believes strongly that the decision is the family’s, urging them to discuss this matter and reinforcing their responsibility: “I just want you to remember that the decision has to be yours. We [hospital staff] can’t decide, and she can’t tell us. So you have to speak for her” (117). At first, a family member had declared, “She didn’t want all this,” which Holt admits he was relieved to hear. Too often, he later explains, “we’re able to rescue somebody from

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580 Chapter 9 death, but can’t quite bring him back to life. People get stuck in that horrible twilight in between.” This was the twilight in which Matty and Paula lived. But when the patient cannot communicate, the ultimate decision rests with the family. Holt explains, “And no matter what I think of their decision, I am bound to respect their wishes,” at least until his efforts are futile and the patient dies (119). Although one member of Wallace’s family initially indicated that Wallace would not want to remain tethered to machines, when the family learns that she would be able to breathe on her own and that her condition has stabilized, that she could continue to live, albeit bedridden, unable to communicate, and requiring care around the clock, they determine that this is something they can provide. Again, Holt reminds them that the immediate question is not whether they can care for Wallace but instead, “Would she want that? If all we can buy her is a little time – with frequent infections, bed sores, being unable to do anything for herself – do you think that’s what she would want?” (124). Immediately Holt regrets his tone, afraid that he sounds as though he is plead- ing with the family to let Wallace die, though, Holt reiterates, this is because he and most residents believe that “dying quickly is the best that could happen” to such patients. The fact that it is also better for hospital staff, saving them “the exhaustion of watching, of causing nothing but pain as we struggle to forestall the inevitable,” makes Holt even more conscious of the “rhetorical tricks” he is using to convince Wallace’s family to pull the plug, believing as he does that this “would be better for the patient, after all” (125). At the same time, Holt repeats, “the question of Muriel Wallace and her care had become a question not of medicine but of an unknowable will. What would Muriel want?” (127). This question is never answered. Wallace survives, and she eventually wakes up and is transferred from the Intensive Care Unit to the general ward. Her condition improves – she can move the toes of her left foot and develops “the ghost of a grip” in her left hand. Her family is thrilled, and they are confident that after a brief sojourn in a nursing home for rehabilitation, she will return to the life she once knew. After a setback (Wallace is found unresponsive and hypotensive), she recovers sufficiently to be released from the hospital. So the question “What would Muriel want?” no longer appears relevant and in some ways never was. Holt explains that although he has thought about Wallace frequently in the years since her stay in his hospital, he purposely has not followed up on her, preferring “to leave her the way she is, lying in that bed with her family so pleased, beaming at me because I was wrong” (130). Holt of course does not know whether he was truly mistaken, whether his prediction was correct that Wallace’s future would be one “of infections of the lung, of the bladder, and

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Providing Partnerships in Dying, Easing Death 581 then the slow ripening of sores” (127). And although it is clear that the wishes of Wallace’s family have been respected, Internal Medicine is notably silent on whether what happened is what Wallace herself would have wanted.45 Sometimes, in dying, everything works out. This is the case for Russian émi- gré artist Alik, in contemporary Russian writer Ludmila Ulitskaya’s (Людмила Улицкая, 1943–) widely translated Veselye pokhorony (Веселые похороны, The Funeral Party, 1997). The novel opens in a sweltering New York City apartment where Alik is spending his final days. He has chosen to die at home, surrounded by friends and family. And these individuals do not disappoint: “Because it was Saturday, there were a large number of visitors: Valentina, Gioia with a little grey Dostoyevsky under her arm, Irina, Maika, Faika, Libin and his girlfriend, all the usual crowd. Also present were the Beginsky sisters, recently arrived from Washington, a woman from Moscow whom nobody knew … Alik’s American artist friend Rudy … Shmuel from Odessa with a dog named Kipling” (1999: 45). Alik is failing fast from an unnamed disease. His body is wasting away, and he has difficulty breathing. He suffers from “an unendurable sense of dissolv- ing self” (46). But until his loved ones move him to the bedroom from his usual place resting on the armchair in the living room, all appears “normal, a sick man surrounded by his friends” (45). His friends do their best to make everything as smooth for him as possible. Even Fima, Alik’s Russian émigré physician, who cannot understand the American obsession with saving people from suffering and whose Jewish blood, the narrator claims, means that he “loses touch with the earth under his feet when released from suffering,” does not want his friend “to suffer so cruelly during the last hours of his life” (107). So Fima does not give Alik the camphor injection that would “drive on his exhausted heart and make it gallop for a while.” But neither does Fima give Alik morphine, which would provide “a blissful oblivion from which he wouldn’t return” (106), but which Fima has no reason to believe Alik would prefer.46 In- stead, Fima suggests that the friends call an ambulance, and they do, but Alik’s wife makes certain that the paramedics do not remove her husband from their home. Soon thereafter, Alik dies, and scores of friends and admirers of all races and ethnicities attend his funeral. The Funeral Party depicts Alik as falling through the cracks of the American healthcare system: “He had never had a

45 Abigail Zuger describes a similar scenario in “Too Much Family Love,” although here the physician knows what the patient wants, but since the family is so large, and so loveable, their desires are placed above those of the patient (2014b). 46 The Russian translates literally as “most likely would not return.” Thank you to Xiaolu Ma for this observation and for confirming the similarity of the published English translation and its Russian source.

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582 Chapter 9 regular job or any insurance either, and there was no prospect of him getting either now: this was no time for him to be queuing for days in endless corridors and collecting the necessary paperwork” (41). But he does not fall through the cracks of his community, which provides him with enough sustenance, and care, to ease him into death. Yet as literature and life make clear, the case of Alik is hardly typical. Fami- lies and close friends of terminal patients in their last months of life, as is true of families and close friends of individuals in a persistent vegetative state and similar grave conditions from which there is no hope of even a modest recovery, frequently are thrust into excruciating positions. They are occasionally asked, by their loved one, to actively help bring about their death. For some, doing so is impossible. And so they contribute to the continued suffering of their loved one, suffering that in turn can create a deep sense of guilt at having utterly failed someone in their time of need. Other family members and close friends are able to follow the directives of their loved one, but in doing so they risk being prosecuted, not to mention being burdened by guilt at assisting in a death, even if the dying person declares repeatedly that this is what they want most of all. Individuals whose loved one no longer can communicate confront an additional challenge, that of determining what their loved one would have wanted, a situation made all the more difficult by the fact that families and close friends often have their own very clear ideas of what they would prefer, ideas that do not always synchronize with the preferences of their loved one. The narratives discussed in this chapter – from North and South America, Eu- rope, and Asia; from ancient Greece to contemporary Korea – shed light on some of the agonizing decisions families and close friends must make, and even more importantly on their need for support from health professionals, their communities, and their societies; for partnerships that are flexible and non-judgmental, partnerships that are empathic and respectful, partnerships that will help families and close friends in turn form partnerships with their loved one that will give everyone final months, weeks, and days that are as peaceful as possible, and give the dying loved one the healthiest possible death. The characteristics of these final times and the specifics of death vary tre- mendously, even and in some cases especially among individuals in the same family and circle of friends. As the writings analyzed in this chapter make clear, it is essential to moderate expectations within families, communities, and societies as to the “right” way to die. Instead of imposing one’s own expectations on loved ones, much less total strangers, it is vital to listen carefully to people long before death and also to discuss with loved ones and health professionals before a crisis occurs what one would want to see happen were one to become unable to speak for oneself. As death becomes inevitable, families and close

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Providing Partnerships in Dying, Easing Death 583 friends, health professionals, communities, and societies, must do their best to enable more effective care partnerships that make possible the “right” death for the person dying and the “right” survival for those responsible for their care, partnerships that temper the suffering of both the living and the dying. … The dozens of diverse works of global literature closely analyzed in this book – coming from Africa, the Americas, Asia, Europe, the Middle East, and Ocea- nia; and dating from before the Common Era to the present – focus on impera- tives vital to reducing suffering, facilitating healing, and improving wellbeing within the three deeply intertwined spaces where people most frequently experience illness: societies/communities, healthcare settings, and families/ friendships. As revealed by the footnotes, which for the benefit of avid readers and future scholarship briefly examine hundreds of related literary works, the narratives discussed in Global Healing are but a small sample of the outpouring of writings around the world that engage with the suffering caused not only by the physical processes of diseases themselves but even more by the struc- tural violence to which individuals with adverse health conditions and their loved ones often are subjected by society, health professionals, and even those closest to them. These novels, plays, poems, short stories, memoirs, essays, works of literary nonfiction, and other writings by bestselling and little-known authors alike expose how, far from being integrated into communities of care where they are treated in ways that promote healing and enable wellbeing even when cure remains out of reach, people with adverse health conditions are all too frequently stigmatized, dehumanized, and silenced. Global Healing also exposes the (relative) silences of those affected by disease who are unable to speak, at least in ways that can be understood by others, and just as important, the (relative) silences of those without access to publishing platforms and networks, formal or informal, to transmit their stories to the broader world. We need always to remember that conditions for countless numbers of the world’s peoples are far worse than what we encounter in our readings, even as these readings provide us with some of the most penetrating insights into the lived experiences of illness. Without question, creating communities of care by shattering stigmas, hu- manizing healthcare, and prioritizing partnerships is exceptionally challenging. It is often more straightforward, and more immediately gratifying, to focus instead on discovering the next medical miracle, which is certain both to save lives and to grab headlines. But such an approach does much less to challenge underlying structures of violence and social injustice than we might initially

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584 Chapter 9 assume. These structures of violence and social injustice are defiant, buttressed by uncompromising beliefs and superstitions, deep prejudices and biases, fear, misinformation, and apathy. The fact that many in the United States continue to refuse to believe that healthcare, much less quality healthcare, is a funda- mental human right; the fact that even today, in most of the world, numerous health conditions trigger social, medical, and familial responses that further damage health and wellbeing; and the fact that intolerance remains tolerable and stigma unstigmatized – all of these realities underscore the need for stron- ger, more diverse, and more persistent voices to take part in the struggle for health and wellbeing. We have made remarkable strides in conquering diseases, and there is much to celebrate. But global literature reveals the tremendous work that remains, with advocacy, care, and ultimately global healing among our greatest challenges.

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