Dying Decisions: Lessons through Literature

 

By Karen Thornber

Primum non nocere.  First, do no harm. This creed, likely originating in the Hippocratic corpus and adopted in many parts of the world including much of Latin America, insists that medical professionals “consider possible harm to patients in every interaction and intervention.” Considering possible harm to patients is especially relevant today for health professionals, patients and their families and close friends alike, given that many new and increasingly accessible medical, surgical, and pharmaceutical treatments have the potential to increase human suffering even as they extend human life.

Late 20th- and early 21st-century creative literature and other narratives have grappled with the ethics of medical innovations that prolong dying, often in a misplaced yet determined attempt to sustain life.  These writings highlight the necessity of modulating expectations surrounding medical interventions, calling attention to the importance of person-focused care that prioritizes the needs and desires of the person who is near death. 

As many of Latin America’s emerging countries move into middle-class status, the issue of when to prolong life is likely to become more urgent. One of the greatest quandaries in wealthier communities is when, where, and how to draw the line between enough care and too much care – too much, that is, of the wrong type of care, as Sharon R. Kaufman explains in Ordinary Medicine, Extraordinary Treatments, and Where to Draw the Line (Duke University Press, 2018).

Although almost unthinkable just a few decades ago, in many societies it now seems normal and necessary to employ sophisticated treatment on people in the latter stages of terminal conditions as well as people in their late 80s, 90s and even older who are grappling with multiple life-threatening conditions.  Health professionals, together with patients and their families and close friends, are being pushed toward ever more interventions, regardless of patient desires. Increasingly, emphasis is on prolonging life, or some would say prolonging dying, rather than on alleviating suffering, promoting healing and working toward wellbeing.

Latin American and Caribbean authors have long engaged with the theme of death, and now they are taking on this particularly difficult decision-making process. Particularly notable are narratives such as diasporic Haitian writer Edwidge Danticat’s (1969–) memoirs Brother, I’m Dying (2007), which discusses the death of her father from pulmonary fibrosis in the context of her family’s experiences in Haiti and the United States, and The Art of Death: Writing the Final Story (2017), which discusses the death of her mother from ovarian cancer in the context of how writers across cultures have engaged with death, “so that I can write, or continue to write, about the deaths that have most touched my life, including, most recently, my mother’s.”

author
Edwidge Danticat, author
 

Danticat’s mother Rose was diagnosed with stage 4 ovarian cancer in 2014.  Although the elder Danticat initially underwent chemotherapy, she eventually decided that she had had enough.  In the opening pages of The Art of Death, Danticat describes informing Rose’s oncologist Dr. Blyden that “my mother had decided to stop chemotherapy and let nature take its course.”  Rose, speaking in Creole and using her daughter as a translator, makes the plea, “Tell him it’s up to God now,” which she does, and after a long pause, the oncologist “agreed that at her age, seventy-eight, the type of vigorous treatment she would now need might considerably reduce her quality of life.”  Moreover, he told mother and daughter about one of his patients with the same diagnosis who was about the same age as Rose who was enjoying a cruise.  Danticat writes, “Dr. Blyden had told us this story, I realized, to show his support for my mother’s choice, and for that my mother seemed grateful. At least that other dying woman was feeling well enough to go on with her life, I imagined her thinking.”  Dr. Blyden respects his patient’s decision and unlike many health professionals does not encourage her to sacrifice her quality of life simply to live an extra few months.       

Although Danticat here makes assumptions about what her mother is thinking and feeling, she and her siblings—unlike many families—also follow Rose’s lead when it comes to respecting her choice to stop chemotherapy.  Later in The Art of Death, Danticat notes that “We like to think that our loved ones didn’t surrender too quickly. It might comfort us to know they at least tried to put up a fight, if not for their own sake but for ours, just to have one more hour, one more day, one more week, one more month, a few more years with us.” And she admits that one of her brothers “disagreed with [his mother] about stopping the chemotherapy,” claiming erroneously that his father, who had died about a decade earlier, “would have jumped at any opportunity to live a few more years.”  Rose countered that she was not going to live a few more years, that she had only a few more weeks of “prolonged suffering,” and that rather than fighting death, she “embraced the dying of the light.”  And, providing an example for grieving adult children everywhere, Danticat and her siblings did not stand in their mother’s way, enabling her to live her last months on her own terms.  

Danticat lovingly describes her last hours with her mother, interrupted only by her mother’s increasing pain and her request to her hospice nurse, the morning before her death, for some local painkiller; by the time the nurse received permission from her supervisor, however, Rose had already died.  Noteworthy here is that this is was the first request Rose had made for something to address her pain; she had otherwise refused this kind of treatment at every step of her illness.  The unnecessary delay in providing a dying woman with relief reveals a health system not yet fully equipped to prioritize its patients.  The Art of Death depicts a tranquil and composed immigrant Haitian woman whose faith lies “not so much in the doctors or in the medicine but in the belief that things would turn out exactly the way they were supposed to.”

Published a decade before The Art of Death, Danticat’s Brother, I’m Dying is a family history that she has written, Danticat explains, “only because they [my father André and my Uncle Joseph] cannot.”  The memoir begins on a hot morning in early July 2004, several hours before Danticat learns that she is pregnant with her first child.  While her ailing father is out of the room undergoing a pulmonary function test, André’s physician Dr. Padman tells Danticat that her father’s pulmonary fibrosis is terminal – that his life expectancy is six months to two years (Danticat’s father died of pulmonary fibrosis in May 2005, less than a year after this conversation).

Danticat asks whether her father could have a lung transplant, and when told that at age sixty-nine he is too old to be put on the transplant list, she asks whether he could have surgery to cut out the diseased parts of his lung.  But Dr. Padman replies only that “Both lungs in their entirety are scarred.”  Just as frustrating to Danticat as Dr. Padman’s seeming refusal to think of alternatives for care is his failure to share with André what he has just told his daughter about his prognosis. The family then debates whether they should tell him the truth, but André outmaneuvers them all, calling a family meeting “to discuss what is going to happen to your mother after I’m gone.”  André knew his days are limited without being told.  Many patients of course do not: narratives such as Venezuelan writer Alberto Barrera Tyszka (1960–) The Sickness (La Enfermedad, 2006) highlight the importance of health professionals working more closely with patients and their loved ones to share crucial medial information, especially diagnosis and prognosis.

But Brother, I’m Dying highlights the importance of honoring the dying patient’s wishes, most importantly not prolonging their suffering.  In late August 2004, not long after his diagnosis, André is hospitalized for IV and respiratory treatment, and learning that his physicians plan to discharge him soon, Danticat writes, echoing her frustration with Dr. Padman at the time of her father’s diagnosis, “It astounded me how quickly it was possible to give up on someone as sick as my father. Before my father’s illness, I’d thought that the sicker a person was, the harder doctors would try to save him. Not so, it seemed.”

Yet André himself does not seem to desire extra interventions, praying “God, if you see it fit to cure me, please do. If not, your will be done,” but spending most of his time thinking about his family members, the U.S. presidential elections, and peace in Haiti and the world.  It is his brother, Uncle Joseph, who pleads with God to “allow him [André] to return from where he’s standing now on the edge of the valley of death.” André likewise refuses his brother’s suggestion that they fly the director of a national sanitorium in Haiti to New York, believing that this would be “a waste of time and money.” However, he never signs a DNR (an order not to resuscitate), something Danticat believes to be a sign not of his but instead of the family’s “inability to release him.”  When asked by a lung specialist after another scare whether he has a DNR, André replies, “No . . . [but] I don’t want to be kept alive by machines. There’s already been enough suffering.” And so when he stops breathing and the family calls 911, the paramedics, upon learning that he does not have a DNR, “removed my father’s clothes, laid him on the wooden floor in his room naked and pounded at his chest for an hour. Even if they had succeeded in resuscitating him, he probably would have had a couple of broken ribs.”

Reflecting on her father’s death, Danticat is not certain that she ever would have had the courage “to tell him to go,” even had it “seemed irreversible and absolutely definite that my father was dying.”  This is perhaps a curious statement given that her father’s health had declined precipitously the previous summer, but it does call attention to the tremendous reluctance of family members to acknowledge that a loved one is near death.

Yet Brother, I’m Dying makes clear how important such courage is: Danticat shares a story told to her by the centenarian Granmè Melina, this one about a daughter grieving over the death of her father who learns from an elderly woman who has visited her father in the land of the ancestors that things are as they should be, that he has made a new home there, and that the living should celebrate his life.

Also noteworthy in Brother, I’m Dying is Danticat’s description of Granmè Melina, who moved in with the family in 1979 from the mountains of Léogâne; her arthritis had become so severe that she no longer could live on her own. Danticat notes that although during the day she simply watched people go by, at night she came alive and told stories to a captive audience, neighborhood children hurrying through their dinners and homework so that they could listen to her tales until she sent everyone home for the evening.  One night Granmè Melina repeats for the family the story of the singing mother, the shut-in daughter and the snake, a story Danticat had thought was crafted to scare the neighborhood children but instead was more about Granmè Melina herself: “She was the daughter, locked inside a cocoon of sickness and old age while death pleaded to be let in.” That same night Granmè Melina dies peacefully in her sleep.  

Unlike many whom the family has known—“the kids who died from microbes and viruses in infancy, the adolescents crushed by careless drivers on their way to or from school, the women who fell to malaria or typhoid fever or tuberculosis, the men who were beaten or shot to death by the henchmen of François Duvalier and later after his death in 1971, his replacement, son Jean-Claude”—Granmè Melina is “an old woman . . . who had lived a long life,” an old woman who nevertheless met death on her own terms as other must be enabled to do, with infant mortality and death from infectious disease decreasing and life expectancies increasing globally.

The recent deaths of migrant children in U.S. immigration custody have received considerable media attention.  Brother, I’m Dying is a sober reminder that such deaths are not solely the products of the Trump administration.  Traveling from Haiti to the United States in 2005 to visit his dying brother André, Uncle Joseph, who by then was more than eighty years old, was detained at the border, despite having a visa and papers and a record of traveling between Haiti and the United States for decades.  In 1977, nearly three decades earlier, U.S. doctors in Haiti had diagnosed him with aggressive throat cancer, and surgeons in New York had saved his life by performing an emergency radical laryngectomy. The radical laryngectomy deprived Uncle Joseph of his voice, although in 1983 he obtained an artificial voice box that enabled him to communicate more readily. Before seeking a diagnosis from the visiting Americans, Danticat’s uncle had tried the local dentist, who pulled out all his teeth and gave him dentures, as well as local doctors and herbalists, none of whom could explain his throbbing throat and gums.

 But although U.S. doctors saved him,  ultimately it is the United States that takes his life: Uncle Joseph is transported to Miami’s Krome Detention Center, where he has a seizure, vomits profusely, is accused of multiple times of faking his condition, and although eventually transferred to the emergency room of Jackson Memorial Hospital, is not seen by a physician for twenty-four hours and dies less than eight hours later.

Danticat writes that she suspects her uncle “was treated according to a biased immigration policy dating back from the early 1980s when Haitians began arriving in Florida in large numbers by boat.  In Florida, where Cuban refugees are, as long as they’re able to step foot on dry land, immediately processed and released to their families, Haitian asylum seekers are disproportionately detained, then deported.” She likewise contrasts the United States’ benevolent treatment of Hondurans and Nicaraguans after Hurricane Mitch with its brutal treatment of Haitians after Tropical Storm Jeanne: “Was my uncle going to jail because he was Haitian? . . . Was he going to jail because he was black? If he were white, Cuban, anything other than Haitian, would he have been going to Krome?”

So even as Danticat’s writing reminds readers of the importance of respecting the wishes of the dying in aging societies with life-sustaining equipment, Brother, I’m Dying also emphasizes that barriers to aging and dying well come in myriad configurations, many of which have little to do with medical technology and everything to do with the value placed on a particular individual’s life.

 

Karen Thornber has published widely on comparative and world literature, postcolonialism, and the environmental and medical humanities, as well as East Asian literatures and cultures, and the literatures and cultures of the Indian Ocean Rim. She is Victor and William Fung Director of the Harvard University Asia Center, Chair of the Harvard Asia Center Council, and Professor of East Asian Languages and Civilizations and of Comparative Literature at Harvard.

thornber@fas.harvard.edu