Being Mortal: Medicine and What Matters in the End (29 page)

Yet still she was in doubt. The following morning, she told me to cancel the operation.

“I’m afraid,” she said. She didn’t think she had the courage to go ahead with the procedure. She’d tossed all night thinking about it. She imagined the pain, the tubes, the indignities of the possible ileostomy, and then there were the incomprehensible horrors of the complications she could face. “I don’t want to take risky chances,” she said.

As we talked, it became clear that her difficulty wasn’t lack of courage to act in the face of risks. Her difficulty was in sorting out how to think about them. Her greatest fear was of suffering, she said. Although we were doing the operation in order to reduce her suffering, couldn’t the procedure make it worse rather than better?

Yes, I said. It could. Surgery offered her the possibility of being able to eat again and a very good likelihood of controlling her nausea, but it carried substantial risk of giving her only pain without improvement or adding yet new miseries. She had, I estimated for her, a 75 percent chance I’d make her future better, at least for a little while, and a 25 percent chance I’d make it worse.

So what then was the right thing for her to do? And why was the choice so agonizing? The choice, I realized, was far more complicated than a risk calculation. For how do you weigh relief from nausea, and the chances of being able to eat again, against the possibilities of pain, of infections, of having to live with stooling into a bag?

The brain gives us two ways to evaluate experiences like suffering—there is how we apprehend such experiences in the moment and how we look at them afterward—and the two ways are deeply contradictory. The Nobel Prize–winning researcher Daniel Kahneman illuminated what happens in a series of experiments he recounted in his seminal book
Thinking, Fast and Slow
. In one of them, he and University of Toronto physician Donald Redelmeier studied 287 patients undergoing colonoscopy and kidney stone procedures while awake. The researchers gave the patients a device that let them rate their pain every sixty seconds on a scale of one (no pain) to ten (intolerable pain), a system that provided a quantifiable measure of their moment-by-moment experience of suffering. At the end, the patients were also asked to rate the total amount of pain they experienced during the procedure. The procedures lasted anywhere from four minutes to more than an hour. And the patients typically reported extended periods of low to moderate pain punctuated by moments of significant pain. A third of the colonoscopy patients and a quarter of the kidney stone patients reported a pain score of ten at least once during the procedure.

Our natural assumption is that the final ratings would represent something like the sum of the moment-by-moment ones. We believe that having a longer duration of pain is worse than a shorter duration and that having a greater average level of pain is worse than having a lower average level. But this wasn’t what the patients reported at all. Their final ratings largely ignored the duration of pain. Instead, the ratings were best predicted by what Kahneman termed the “Peak-End rule”: an average of the pain experienced at just two moments—the single worst moment of the procedure and the very end. The gastroenterologists conducting the procedures rated the level of pain they had inflicted very similarly to their patients, according to the level of pain at the moment of greatest intensity and the level at the end, not according to the total amount.

People seemed to have two different selves—an experiencing self who endures every moment equally and a remembering self who gives almost all the weight of judgment afterward to two single points in time, the worst moment and the last one. The remembering self seems to stick to the Peak-End rule even when the ending is an anomaly. Just a few minutes without pain at the end of their medical procedure dramatically reduced patients’ overall pain ratings even after they’d experienced more than half an hour of high level of pain. “That wasn’t so terrible,” they’d reported afterward. A bad ending skewed the pain scores upward just as dramatically.

Studies in numerous settings have confirmed the Peak-End rule and our neglect of duration of suffering. Research has also shown that the phenomenon applies just as readily to the way people rate pleasurable experiences. Everyone knows the experience of watching sports when a team, having performed beautifully for nearly the entire game, blows it in the end. We feel that the ending ruins the whole experience. Yet there’s a contradiction at the root of that judgment. The experiencing self had whole hours of pleasure and just a moment of displeasure, but the remembering self sees no pleasure at all.

If the remembering self and the experiencing self can come to radically different opinions about the same experience, then the difficult question is which one to listen to. This was Jewel Douglass’s torment at bottom, and to a certain extent mine, if I was to help guide her. Should we listen to the remembering—or, in this case, anticipating—self that focuses on the worst things she might endure? Or should we listen to the experiencing self, which would likely have a lower average amount of suffering in the time to come if she underwent surgery rather than if she just went home—and might even get to eat for a while again?

In the end, people don’t view their life as merely the average of all of its moments—which, after all, is mostly nothing much plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. Measurements of people’s minute-by-minute levels of pleasure and pain miss this fundamental aspect of human existence. A seemingly happy life may be empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves. Unlike your experiencing self—which is absorbed in the moment—your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works out as a whole. That is profoundly affected by how things ultimately turn out. Why would a football fan let a few flubbed minutes at the end of the game ruin three hours of bliss? Because a football game is a story. And in stories, endings matter.

Yet we also recognize that the experiencing self should not be ignored. The peak and the ending are not the only things that count. In favoring the moment of intense joy over steady happiness, the remembering self is hardly always wise.

“An inconsistency is built into the design of our minds,” Kahneman observes. “We have strong preferences about the duration of our experiences of pain and pleasure. We want pain to be brief and pleasure to last. But our memory … has evolved to represent the most intense moment of an episode of pain or pleasure (the peak) and the feelings when the episode was at its end. A memory that neglects duration will not serve our preference for long pleasure and short pains.”

When our time is limited and we are uncertain about how best to serve our priorities, we are forced to deal with the fact that both the experiencing self and the remembering self matter. We do not want to endure long pain and short pleasure. Yet certain pleasures can make enduring suffering worthwhile. The peaks are important, and so is the ending.

Jewel Douglass didn’t know if she was willing to face the suffering that surgery might inflict on her and feared being left worse off. “I don’t want to take risky chances,” she said, and by that, I realized, she meant that she didn’t want to take a high-stakes gamble on how her story would turn out. On the one hand, there was so much she still hoped for, however seemingly mundane. That very week, she’d gone to church, driven to the store, made family dinner, watched a television show with Arthur, had her grandson come to her for advice, and made wedding plans with dear friends. If she could be allowed to have even a little of that—if she could be freed from what her tumor was doing to her to enjoy just a few more such experiences with the people she loved—she would be willing to endure a lot. On the other hand, she didn’t want to chance a result even worse than the one she already faced with her intestines cinched shut and fluid filling her abdomen like a dripping faucet. It seemed as if there were no way forward. But as we talked that Saturday morning in her hospital room, with her family around her and the operating room standing by downstairs, I came to understand she was telling me everything I needed to know.

We should go to surgery, I told her, but with the directions she’d just spelled out—to do what I could to enable her to return home to her family while not taking risky chances. I’d put in a small laparoscope. I’d look around. And I’d attempt to unblock her intestine only if I saw that I could do it fairly easily. If it looked difficult and risky, then I’d just put in tubes to drain her backed-up pipes. I’d aim to do what might have sounded like a contradiction in terms: a palliative operation, an operation whose overriding priority, whatever the violence and risks inherent, was to do only what was likely to make her feel better immediately.

She remained quiet, thinking.

Her daughter took her hand. “We should do this, Mom,” she said.

“Okay,” Douglass said. “But no risky chances.”

“No risky chances,” I said.

When she was asleep under anesthesia, I made a half-inch incision above her belly button. It let out a gush of thin, blood-tinged fluid. I slipped my gloved finger inside to feel for space to insert the fiberoptic scope. But a hard loop of tumor-caked bowel blocked the entry. I wasn’t even going to be able to put in a camera. I had the resident take the knife and extend the incision upward until it was large enough to see in directly and get a hand inside. At the bottom of the hole, I saw a free loop of distended bowel—it looked like an overinflated pink inner tube—that I thought we might be able to pull up to the skin and make into an ileostomy so she could eat again. But it remained tethered by tumor, and as we tried to chip it free it became evident that we were risking creating holes we’d never be able to repair. Leakage inside the abdomen would be a calamity. So we stopped. Her aims for us were clear. No risky chances. We shifted focus and put in two long, plastic drainage tubes. One we inserted directly into her stomach in order to empty the contents backed up there; the other we laid in the open abdominal cavity to empty the fluid outside her gut. Then we closed up, and we were done.

I told her family we weren’t able to help her eat again, and when Douglass woke up I told her, as well. Her daughter had tears. Her husband thanked us for trying. Douglass tried to put a brave face on it.

“I was never obsessed with food anyway,” she said.

The tubes relieved her nausea and abdominal pain greatly—“90 percent,” she said. The nurses taught her how to open the gastric tube into a bag when she felt sick and the abdominal tube when her belly felt too tight. We told her she could drink whatever she wanted and even eat soft food for the taste. Three days after surgery she went home with hospice to look after her. Before she left, her oncologist and the oncology nurse practitioner saw her. Douglass asked them how long they thought she had.

“They both filled up with tears,” she told me. “It was kind of my answer.”

A few days after Douglass left the hospital, she and her family allowed me to stop by her home after work. She answered the door herself, wearing a robe because of the tubes and apologizing for it. We sat in her living room, and I asked how she was doing.

She was doing okay, she said. “I think I have a measure that I’m slip, slip, slipping,” but she had been seeing old friends and relatives all day, and she loved it. “It’s my lifeblood, really, so I want to do it.” Her family staggered the visits to keep them from tiring her out.

She said she didn’t like all the contraptions sticking out of her. The tubes were uncomfortable where they poked out of her belly. “I didn’t know that there would be this constant pressure,” she said. But the first time she found that just opening a tube could take away her nausea, “I looked at the tube and said, ‘Thank you for being there.’”

She was taking just Tylenol for pain. She didn’t like narcotics because they made her drowsy and weak, and that interfered with seeing people. “I’ve probably confused the hospice people because I said at some point, ‘I don’t want any discomfort. Bring it on’”—by which she meant the narcotics. “But I’m not there yet.”

Mostly, we talked about memories from her life, and they were good ones. She was at peace with God, she said. I left feeling that, at least this once, we’d learned to do it right. Douglass’s story was not ending the way she ever envisioned, but it was nonetheless ending with her being able to make the choices that meant the most to her.

Two weeks later, her daughter, Susan, sent me a note. “Mom died on Friday morning. She drifted quietly to sleep and took her last breath. It was very peaceful. My dad was alone by her side with the rest of us in the living room. This was such a perfect ending and in keeping with the relationship they shared.”

*   *   *

I AM LEERY
of suggesting the idea that endings are controllable. No one ever really has control. Physics and biology and accident ultimately have their way in our lives. But the point is that we are not helpless either. Courage is the strength to recognize
both
realities. We have room to act, to shape our stories, though as time goes on it is within narrower and narrower confines. A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.

Inevitably, the question arises of how far those possibilities should extend at the very end—whether the logic of sustaining people’s autonomy and control requires helping them to accelerate their own demise when they wish to. “Assisted suicide” has become the term of art, though advocates prefer the euphemism “death with dignity.” We clearly already recognize some form of this right when we allow people to refuse food or water or medications and treatments, even when the momentum of medicine fights against it. We accelerate a person’s demise every time we remove someone from an artificial respirator or artificial feeding. After some resistance, cardiologists now accept that patients have the right to have their doctors turn off their pacemaker—the artificial pacing of their heart—if they want it. We also recognize the necessity of allowing doses of narcotics and sedatives that reduce pain and discomfort even if they may knowingly speed death. All proponents seek is the ability for suffering people to obtain a prescription for the same kind of medications, only this time to let them hasten the timing of their death. We are running up against the difficulty of maintaining a coherent philosophical distinction between giving people the right to stop external or artificial processes that prolong their lives and giving them the right to stop the natural, internal processes that do so.