Cover story: Mortality

Courage in the face of Death

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Certain pleasures can make enduring suffering worthwhile. A renowned surgeon on how to cope with ageing and sickness
In 380 BC, Plato wrote a dialogue, the Laches, in which Socrates and two Athenian generals seek to answer a seemingly simple question: What is courage? The generals, Laches and Nicias, had gone to Socrates to resolve a dispute between them over whether boys undergoing military training should be taught to fight in armor. Nicias thinks they should. Laches thinks they shouldn’t.

Well, what’s the ultimate purpose of the training? Socrates asks.

To instill courage, they decide.

So then, “What is courage?”

Courage, Laches responds, “is a certain endurance of the soul.”

Socrates is skeptical. He points out that there are times when the courageous thing to do is not to persevere but to retreat or even flee. Can there not be foolish endurance?

Laches agrees but tries again. Perhaps courage is “wise endurance.”

This definition seemed more apt. But Socrates questions whether courage is necessarily so tightly joined to wisdom. Don’t we admire courage in the pursuit of an unwise cause, he asks?

Well, yes, Laches admits.

Now Nicias steps in. Courage, he argues, is simply “knowledge of what is to be feared or hoped, either in war or in anything else.” But Socrates finds fault here, too. For one can have courage without perfect knowledge of the future. Indeed, one often must.

The generals are stumped. The story ends with them coming to no final definition. But the reader comes to a possible one: Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength.

At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality—the courage to seek out the truth of what is to be feared and what is to be hoped. Such courage is difficult enough. We have many reasons to shrink from it. But even more daunting is the second kind of courage—the courage to act on the truth we find. The problem is that the wise course is so frequently unclear. For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen, it is hard to know what to do. But the challenge, I’ve come to see, is more fundamental than that. One has to decide whether one’s fears or one’s hopes are what should matter most.

I had returned to Boston from Ohio, and to my work at the hospital, when I got a late-night page: Jewel Douglass was back, unable to hold food down again. Her cancer was progressing. She’d made it three and a half months—longer than I’d thought she’d have, but shorter than she’d expected. For a week, the symptoms had mounted: they started with bloating, became waves of crampy abdominal pain, then nausea, and progressed to vomiting. Her oncologist sent her to the hospital. A scan showed her ovarian cancer had multiplied, grown, and partly obstructed her intestine again. Her abdomen had also filled with fluid, a new problem for her. The deposits of tumor had stuffed up her lymphatic system, which serves as a kind of storm drain for the lubricating fluids that the body’s internal linings secrete. When the system is blocked, the fluid has nowhere to go. When that happens above the diaphragm, as it did with Sara Monopoli’s lung cancer, the chest fills up like a ribbed bottle until you have trouble breathing. If the system gets blocked up below the diaphragm, as it did with Douglass, the belly fills up like a rubber ball until you feel as if you will burst.

Walking into Douglass’s hospital room, I’d never have known she was as sick as she was if I hadn’t seen the scan. “Well, look who’s here!” she said, as if I’d just arrived at a cocktail party.

“How are you, doctor?”

“I think I’m supposed to ask you that,” I said.

She smiled brightly and pointed around the room. “This is my husband, Arthur, whom you know, and my son, Brett.” She’d got me grinning. Here it was eleven o’clock at night, she couldn’t hold down an ounce of water, and still she had her lipstick on, her silver hair brushed straight, and she was insisting on making introductions. She wasn’t oblivious to her predicament. She just hated being a patient and the grimness of it all.

I talked to her about what the scan showed. She had no unwillingness to face the facts. But what to do about them was another matter. Like my father’s doctors, the oncologist and I had a menu of options. There was a whole range of new chemotherapy regimens that could be tried to shrink the tumor burden. I had a few surgical options for dealing with her situation, as well. With surgery, I told her, I wouldn’t be able to remove the intestinal blockage, but I might be able to bypass it. I’d either connect an obstructed loop to an unobstructed one or I’d disconnect the bowel above the blockage and give her an ileostomy, which she’d have to live with. I’d also put in a couple drainage catheters—permanent spigots that could be opened to release the fluids from her blocked-up drainage ducts or intestines when necessary. Surgery risked serious complications—wound breakdown, leakage of bowel into her abdomen, infections—but it offered her the only way she could regain her ability to eat. I also told her that we did not have to do either chemo or surgery. We could provide medications to control her pain and nausea and arrange for hospice at home.

The options overwhelmed her. They all sounded terrifying. She didn’t know what to do. I realized, with shame, that I’d reverted to being Dr. Informative—here are the facts and figures; what do you want to do? So I stepped back and asked the questions I’d asked my father: What were her biggest fears and concerns? What goals were most important to her? What tradeoffs was she willing to make, and what ones was she not?

Not everyone is able to answer such questions, but she did. She said she wanted to be without pain, nausea, or vomiting. She wanted to eat. Most of all, she wanted to get back on her feet. Her biggest fear was that she wouldn’t be able to live life again and enjoy it—that she wouldn’t be able to return home and be with the people she loved.

As for what trade-offs she was willing to make, what sacrifices she was willing to endure now for the possibility of more time later, “Not a lot,” she said. Her perspective on time was shifting, focusing her on the present and those closest to her. She told me that uppermost in her mind was a wedding that weekend that she was desperate not to miss. “Arthur’s brother is marrying my best friend,” she said. She’d set them up on their first date. Now the wedding was just two days away, on Saturday at 1:00 p.m. “It’s just the best thing,” she said. Her husband was going to be the ring bearer. She was supposed to be a bridesmaid. She was willing to do anything to be there, she said.

The direction suddenly became clear. Chemotherapy had only a slim chance of improving her current situation and it came at substantial cost to the time she had now. An operation would never let her get to the wedding, either. So we made a plan to see if we could get her there. We’d have her come back afterward to decide on the next steps.

With a long needle, we tapped a liter of tea-colored fluid from her abdomen, which made her feel at least temporarily better. We gave her medication to control her nausea. And she was able to drink enough liquids to stay hydrated. At three o’clock Friday afternoon, we discharged her with instructions to drink nothing thicker than apple juice and return to see me after the wedding.

She didn’t make it. She came back to the hospital that same night. Just the car ride, with all its swaying and bumps, set her vomiting again. The crampy attacks returned. Things only got worse at home. We agreed surgery was the best course now and scheduled her for it the next day. I would focus on restoring her ability to eat and putting drainage tubes in. Afterward, she could decide if she wanted more chemotherapy or to go on hospice. She was as clear as I’ve seen anyone be about her goals and what she wanted to do to achieve them.

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 per cent 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 pain experienced at 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 what ever 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.

At root, the debate is about what mistakes we fear most—the mistake of prolonging suffering or the mistake of shortening valued life. We stop the healthy from committing suicide because we recognize that their psychic suffering is often temporary. We believe that, with help, the remembering self will later see matters differently than the experiencing self—and indeed, only a minority of people saved from suicide make a repeated attempt; the vast majority eventually report being glad to be alive. But for the terminally ill who face suffering that we know will increase, only the stonehearted can be unsympathetic.

All the same, I fear what happens when we expand the terrain of medical practice to include actively assisting people with speeding their death. I am less worried about abuse of these powers than I am about dependence on them. Proponents have crafted the authority to be tightly circumscribed to avoid error and misuse. In places that allow physicians to write lethal prescriptions—countries like the Netherlands, Belgium, and Switzerland and states like Oregon, Washington, and Vermont—they can do so only for terminally ill adults who face unbearable suffering, who make repeated requests on separate occasions, who are certified not to be acting out of depression or other mental illness, and who have a second physician confirming they meet the criteria. Nonetheless, the larger culture invariably determines how such authority is employed. In the Netherlands, for instance, the system has existed for de cades, faced no serious opposition, and significantly grown in use. But the fact that, by 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a mea sure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.

Certainly, suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary. Given the opportunity, I would support laws to provide these kinds of prescriptions to people. About half don’t even use their prescription. They are reassured just to know they have this control if they need it. But we damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well.

©Atul Gawande

(Excerpted from Being Mortal: Medicine and What Matters in the End by Atul Gawande, Penguin Books India 296 pages | Rs 599)

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