The Best American Science and Nature Writing 2014

by Deborah Blum

  He had had thoughts like this before, but this time it felt different to Peggy, who proofread and typed the letter; the longing for death felt like something carefully considered, something serious and sincere. This was an autonomous, fully alert person making a decision about his own final days—the very situation she had spent her career defending. She reasoned that Brooke had the right, as a mentally competent patient, to reject medical interventions that could further prolong his life, even though he did not live in a state where assisted suicide was explicitly legal. And if he wanted to reject those interventions now, after four years of consenting to every treatment, Peggy was ready to help. She shifted from being Brooke’s devoted lifeline to being the midwife to his death.

  She knew from a hospice nurse that one way to ease a patient’s dying included morphine for “air hunger,” Haldol for “delusions and end-of-life agitation,” and Tylenol suppositories for “end-of-life fever, 99 to 101 degrees.” Another nurse mentioned morphine, Haldol, and the sedative Ativan; a third talked about Duragesic patches to deliver fentanyl, a potent opium alternative used for pain. Peggy also tried to find out whether cardiologists would ever be willing to order deactivation of a pacemaker at a very ill patient’s request (probably, she was told). She kept pages of scribbled notes in a blue folder marked “Death and Dying.” She had also taken careful notes when Brooke started to talk about his funeral. He told her what music he wanted, including a few gospel songs by Marion Williams, and which readings from Wordsworth’s “Lucy Poems” and Whitman’s Leaves of Grass. On his gravestone, he might like a line from Henry Adams: “A teacher affects eternity; he can never tell where his influence stops.” These were good conversations, but they left him, he told Peggy, “completely emotionally torn up.”

  Then in early August, fluid started accumulating in Brooke’s chest cavity, a condition known as pleural effusion, and he had trouble breathing, even on the ventilator. He was uncomfortable and becoming delirious. Other people, including a few of Brooke’s caregivers, might have seen this as a kind of divine intervention—a rapid deterioration just when Brooke was longing for death anyway, easing him into a final release. But that’s not how Peggy saw it. This was not the death Brooke wanted, confused and in pain, she explained to me later; he had always spoken of a “generous death” for which he was alert, calm, present, and surrounded by people he loved. So she consulted with a physician at the hospital about whether Brooke would improve if doctors there extracted the fluid that was causing the respiratory distress. In the end, she decided to ignore the “Final Letter.” She went upstairs, got dressed, and, along with the caregiver on duty, put Brooke into the wheelchair-accessible van in the driveway and drove him to the emergency room.

  This put Brooke back in the hospital with heavy-duty antibiotics treating yet another lung problem. During his three-week stay he recovered enough to make his own medical decisions again—which is when he consented to the insertion of the feeding tube. He also met with a palliative-care expert, who suggested trying one more pain treatment: low-dose methadone around the clock, 5 milligrams at exactly 9 A.M. and exactly 9 P.M. every day. With the methadone, Brooke’s pain was at last manageable. Now when he reflects on that hospitalization, he thinks of it as having a “happy ending.” In the “Death and Dying” folder is one last penciled note from Peggy dated August 18, 2012: “10:37 A.M. Brooke says he wants to ‘soldier on’ despite difficulties.”

  A couple of days after Brooke and Peggy talked about his not wanting anyone to speak for him, the subject came up again. Peggy raised it as we all sat in the living room. At first she did all the talking, unwittingly acting out the very problem under discussion. So I interrupted with a direct question to Brooke. Why, I asked, do you think Peggy sometimes does the talking for you?

  “I think it’s because she’s concerned about me and wants the best for me,” he said. He made the gesture I’d watched him make before, lifting the tops of his shoulders, over which he still has motor control, in a resigned-looking little shrug. In light of such pervasive dependency, that shrug seemed to say, how can a loving, well-meaning wife help but sometimes overstep in her eagerness to anticipate her husband’s needs?

  I asked Brooke if Peggy ever misunderstood what he meant to say.

  “I don’t know, ask her,” he said. But Peggy saw the irony there and urged Brooke to speak up for himself.

  “Occasionally, yes,” he said, though he couldn’t think of any specific instances.

  When she makes a mistake, I asked, do you ever correct her?

  “No, because I don’t want to upset her.” His brown eyes got very big.

  She: “It would be OK.”

  He: “OK.”

  She: “It would help me if you would say to me—”

  He: “OK, OK, OK.”

  She: “I think this issue is especially important . . . What you’ve wanted has fluctuated a lot, and part of it is to try to figure out what’s genuine and what’s a part of response to the pain. That’s the hardest part for me, when you say: ‘I don’t want to go to the hospital ever again, I don’t like being in the hospital, and I don’t want to be sick. If the choice is going to the hospital or dying, I’ll take the dying.’”

  Peggy turned to me. She wanted me to understand her thinking on this. It’s so hard to know what Brooke wants, she explained, because there have been times when she has taken him to the hospital, and he later says that she made the right call. It’s so hard, she repeated. She has to be able to hear how a transient despair differs from a deep and abiding decision to die. She believes he hasn’t made that deep, abiding decision yet, despite the “Final Letter.”

  She understands him well enough, she told me, to know when his apparent urgency is just a reflection of his dramatic way of presenting things: his deep voice, his massive size, his grimaces. “Brooke is very expressive when he’s in his full self,” she said.

  Watching the dependence, indignity, and sheer physical travail that Brooke must live through every day, Peggy told me, she doesn’t think she would have the stamina to endure a devastating injury like his. “It seems not what I’d want,” she said when I asked if she would choose to stay alive if she were paralyzed. While she might not want to persevere in such a constrained and difficult life, she believes that Brooke does want to, and she tends to interpret even his most anguished cries in a way that lets her conclude that he doesn’t quite mean what he says. But she worries that others in his life, even the caregivers who have become so close to him, might not be able to calibrate the sincerity of those over-the-top pleas and might leap too quickly to follow his instructions if he yelled out about wanting to end it all.

  Suzy Quirantes, the senior member of the caregiving team, a trained respiratory therapist who has been with Brooke since the day he came home in 2010, sees it a bit differently. “I’ve worked with death a lot,” she told me. She thinks there have been times when Peggy has been unable to hear Brooke’s heartfelt expressions of a desire to die. “Last year, right after the feeding tube, he kept refusing his therapies,” she said. “And I said, ‘If you’re really serious, if you’re done, I need you to be very clear, and you need to be able to talk to Peggy so she understands.’” He never did talk to Peggy, though—maybe because he wasn’t clear in his own mind what he wanted. “He has said, ‘I’m done,’ and then when we kind of talk more about it, he gets scared,” Suzy said. “He says: ‘What I mean is I’m done doing this stuff in the hospital. But I’m not ready to die yet.’”

  The tangled, sometimes contradictory nature of Brooke’s feelings has led to subtle shifts in Peggy’s scholarly thinking. She still believes that, whenever possible, people have the right to choose when and how to die. But she now better understands how vast and terrifying that choice really is. “What has changed,” she told me, “is my sense of how extremely complex, how extremely textured, any particular case is.” This realization is infinitely more fraught when you’re inextricably invested in the outcome and when the si
gnals your loved one sends are not only hard to read but also are constantly in flux.

  The only consistent choice Brooke has made—and he’s made it again and again every time he gives informed consent for a feeding tube or a diaphragmatic pacer, every time he permits treatment of an infection or a bedsore—is the one to stay alive. This is the often unspoken flip side of the death-with-dignity movement that Peggy has long been a part of. Proponents generally focus on only one branch of the decision tree: the moment of choosing death. There’s much talk of living wills, DNR orders, suicide, withdrawal of life support, exit strategies. Brooke’s experience has forced Peggy to step back from that moment to an earlier one: the moment of confronting one’s own horrific circumstances and choosing, at least for now, to keep on living. But the reasons for that choice are complicated too. Brooke told me that he knows Peggy is a strong person who will recover from his death and move on. But he has also expressed a desire not to abandon her. And Peggy worries that sometimes Brooke is saying he wants to keep fighting and stay alive not because that’s what he wants, but because he thinks that’s what she wants him to want. And to further complicate things, it’s not even clear what Peggy really wants him to want. Her own desires seem to shift from day to day. One thing doesn’t change, though: she is deeply afraid of misunderstanding Brooke’s wishes in a way that can’t be undone. The worst outcome, to her, would be to think that this time he really did want to die and then to feel as if she might have been wrong.

  Since Brooke’s accident, Peggy has continued to advocate for people seeking to die. She went to Vancouver in late 2011 to testify in court in the case of Gloria Taylor, a woman with ALS who wanted help ending her life when she was ready. And in 2012 she presented testimony by Skype in the case of Marie Fleming, an Irishwoman with multiple sclerosis who was making a similar request. The plaintiffs were a lot like Brooke, cognitively intact with progressively more useless bodies. But they felt a need to go to court to assure that they would have control in the timing of their own deaths. Brooke has not. Perhaps that’s because he believes that Peggy will follow through on a plan to help him die if that’s what he ultimately chooses.

  Those seeking to end their lives are up against opponents who say that helping the terminally ill to die will lead eventually to pressure being put on vulnerable people—the elderly, the poor, the chronically disabled, the mentally ill—to agree to die to ease the burden on the rest of us. Peggy doesn’t buy it. The scholarly work she is most proud of is a study she conducted in 2007, which is one of the first to look empirically at whether people are being coerced into choosing to end their lives. Peggy was reassured when she and her colleagues found that in Oregon and the Netherlands, two places that allow assisted dying, the people who used it tended to be better off and more educated than the people in groups considered vulnerable.

  What Peggy has become more aware of now is the possibility of the opposite, more subtle kind of coercion—not the influence of a greedy relative or a cost-conscious state that wants you to die, but pressure from a much-loved spouse or partner who wants you to live. The very presence of these loved ones undercuts the notion of true autonomy. We are social beings, and only the unluckiest of us live in a vacuum; for most, there are always at least a few people who count on us, adore us, and have a stake in what we decide. Everyone’s autonomy abuts someone else’s.

  During Peggy’s cross-examination in the Gloria Taylor trial, the Canadian government’s lawyer tried to argue that Brooke’s choice to keep living weakened Peggy’s argument in favor of assisted suicide. Isn’t it true, the lawyer asked, that “this accident presented some pretty profoundly serious challenges to your thinking on the subject?”

  Yes, Peggy said, but only by provoking the “concerted re-re-rethinking” that any self-respecting philosopher engages in. She remained committed to two moral constructs in end-of-life decision making: autonomy and mercy. “Only where both are operating—that is, where the patient wants to die and dying is the only acceptable way for the patient to avoid pain and suffering—is there a basis for physician-assisted dying,” she told the court in an affidavit. “Neither principle is sufficient in and of itself, and in tandem the two principles operate as safeguards against abuse.”

  One morning in April, I called to speak with Peggy and Brooke. Peggy told me that when I was there in February, Brooke had an undiagnosed urinary tract infection that affected both his body and his clarity of thinking. It had since cleared up, she said. “He’s a different person than the one you saw.” The possibility that he’d begun a true cognitive decline was averted, at least for the time being.

  “I’m cautiously happy about life in general,” Brooke said on speakerphone, stopping between phrases to catch his breath. “I’m getting stronger. Working hard. Loving my teaching. My friends and caregivers. My wife.”

  I asked about Brooke’s “Final Letter” from the previous summer. I was still trying to understand why Peggy had ignored it, just days after she typed it up for him, and instead took him to the ER to treat his pleural effusion. Why hadn’t she just let the infection end his life?

  “Brooke had always said, ‘I’m willing to go to the hospital for something that’s reversible, but I don’t want to die in the hospital,’” she said, as Brooke listened in on the speakerphone. So she had to “intuit” whether this was something reversible, and she believed it was. “This didn’t feel like the end,” she said, “but of course you don’t know that for sure.” In addition, there was that image in her mind of Brooke’s ideal of a “generous death.” It’s hard to say whether she’ll ever think conditions are exactly right for the kind of death Brooke wants.

  The next day I learned that a few hours after my phone call, Brooke suddenly became agitated and started to yell. “Something bad is happening,” he boomed. “I’m not going to make it through the morning.” Peggy and the caregiver on duty, Jaycee, tried to figure out what might have brought this on, just hours after he told me he was “cautiously happy.” He had gone the previous two nights without his usual Klonopin, which treats his anxiety; maybe that was the explanation. Or maybe discussing his “Final Letter” with me, remembering the desperation of that time, had upset him. He was also getting ready for the first class of a new semester, covering the second half of Moby-Dick; maybe he was experiencing the same teaching anxiety that had plagued him his whole career.

  Deciding that Brooke was having a panic attack, Peggy told Jaycee to give him half a dose of Klonopin. She did, but things got worse. Brooke’s eyes flashed with fear, and he yelled to Peggy that he was about to do something terrible to her—meaning, she guessed, that he was going to die and leave her alone. Finally he announced that he wanted to turn off all the machines. Everything. He wanted to be disconnected from all the tubes and hoses that were keeping him alive. He was ready to die.

  Peggy and Jaycee did what he asked. They turned off the ventilator and disconnected it from the trach and placed a cap at the opening in his throat. They turned off the oxygen. They turned off the external battery for the diaphragmatic pacer. They showed Brooke that everything was disconnected.

  Brooke sat back in his wheelchair then and closed his eyes. There were no tears, no formal goodbyes; it all happened too quickly for that. He sat there waiting to die, ready to die, and felt an incredible sense of calm.

  Two minutes passed. Three minutes passed. He opened his eyes and saw Peggy and Jaycee sitting on stools, one on either side, watching him.

  “Is this a dream?” he asked.

  “No, it’s not a dream.”

  “I didn’t die?”

  To Brooke it was a kind of miracle—all the machinery had been shut off, just as he asked, but he was still alive. He felt refreshed, as if he had made it through some sort of trial. He asked Jaycee to reattach everything, and three hours later, after he had a nap, his students arrived to start the new semester, and Brooke began teaching Moby-Dick again.

  But it was no miracle. “I know what his medical con
dition is,” Peggy told me later, out of Brooke’s earshot. “The reason he didn’t die is he’s not at the moment fully vent-dependent anymore. He can go without oxygen for a while, and he can go with the pacer turned off for some time.” She didn’t say any of this to Brooke. “It seems to have been such an epiphany, such a discovery, when he woke up and discovered he was still alive,” she said. “I don’t really want to puncture that bubble.”

  If for some reason Brooke had become unconscious, she and Jaycee would have revived him, Peggy told me, because she didn’t believe he really wanted to die. She thinks what he really wanted was to believe he had a measure of control, that he could ask for an end to his life and be heard. “We showed him that we would do what he asked for,” she said, “and he thought it was real.” But it wasn’t real, I said. It all sounded like an elaborate end-of-life placebo, an indication that in fact he was not in control, that he wasn’t being heard. Peggy laughed and did not disagree.

  She’s not good at keeping secrets from Brooke, though, and by the time I contacted them both by Skype later in the week, she’d told him the truth about that afternoon. In retrospect, Brooke said, the whole thing seemed kind of comical. He mimed it for me, leaning back with his eyes closed waiting for the end to come, then slowly opening them, raising his eyebrows practically to his hairline, overacting like a silent-film star tied to the tracks who slowly realizes the distant train will never arrive. He looked good, handsome in his burgundy polo shirt, mugging for the webcam. Some new crisis, some new decision, was inevitable—in fact, last month it took the form of another farewell letter, stating his desire to die in the spring of 2014, which is when he expects to be finished teaching his next course, on Don Quixote. But at that moment, Brooke was feeling good. “I think it will be a productive summer,” he said. And he and Peggy smiled.