Authors: Atul Gawande
“I seem to be in a pickle from what I understand,” she said.
She was the sort of person who’d managed, even with the tube taped into her nose, to fix her hair, which she wore in a bob, put her glasses back on, and smooth her hospital sheets over herself neatly. She was doing her best to maintain her dignity under the circumstances.
I asked how she was feeling. The tube had helped, she said. She felt much less nauseated.
I asked her to explain what she’d been told. She said, “Well, doctor, it seems my cancer is blocking me up. So everything that goes down comes back up again.”
She’d grasped the grim basics perfectly. At this point, we had no especially difficult decisions to make. I told her there was a chance that this was just a twist in a bowel loop and that with a day or two’s time it might open up on its own. If it didn’t, I said, we’d have to talk about possibilities like surgery. Right now, though, we could wait.
I was not yet willing to raise the harder issue. I could have pushed ahead, trying to be hard-nosed, and told her that, no matter what happened, this blockage was a bad harbinger. Cancers kill people in many ways, and gradually taking away their ability to eat is one of them. But she didn’t know me, and I didn’t know her. I decided I needed time before attempting that line of discussion.
A day later, the news was as good as could be hoped. First, the fluid flowing out of the tube slowed down. Then she started passing gas and having bowel movements. We were able to remove her nasogastric tube and feed her a soft, low-roughage diet. It looked like she would be fine for now.
I was tempted simply to discharge her home and wish her well—to skip the hard conversation altogether. But this wasn’t likely to be the end of the matter for Douglass. So before she left, I returned to her hospital room and sat with her, her husband, and one of her sons.
I started out saying how pleased I was to see her eating again. She said she’d never been so happy to pass gas in her life. She had questions about the foods she should eat and the ones she shouldn’t in order to avoid blocking up her bowel again, and
I answered them. We made some small talk, and her family told me a bit about her. She’d once been a singer. She became Miss Massachusetts 1956. Afterward, Nat King Cole asked her to join his tour as a backup singer. But she discovered that the life of an entertainer was not what she wanted. So she came home to Boston. She met Arthur Douglass, who took over his family’s funeral home business after they married. They raised four children but suffered through the death of their oldest child, a son, at a young age. She was looking forward to getting home to her friends and family and to taking a trip to Florida they had planned to get away from all this cancer business. She was eager to leave the hospital.
Nonetheless, I decided to push. Here was an opening to discuss her future, and I realized it was one I needed to take. But how to do it? Was I just to blurt out, “By the way, the cancer is getting worse and will probably block you up, again”?
Bob Arnold, a palliative care physician I’d met from the University of Pittsburgh, had explained to me that the mistake clinicians make in these situations is that they see their task as just supplying cognitive information—hard, cold facts and descriptions. They want to be Dr. Informative. But it’s the meaning behind the information that people are looking for more than the facts. The best way to convey meaning is to tell people what the information means to you yourself, he said. And he gave me three words to use to do that.
“I am worried,” I told Douglass. The tumor was still there, I explained, and I was worried the blockage was likely to come back.
They were such simple words, but it wasn’t hard to sense how much they communicated. I had given her the facts. But by including the fact that I was worried, I’d not only told her about the seriousness of the situation, I’d told her that I was on her
side—I was pulling for her. The words also told her that, although I feared something serious, there remained uncertainties—possibilities for hope within the parameters nature had imposed.
I let her and her family take in what I’d said. I don’t remember Douglass’s precise words when she spoke, but I remember that the weather in the room had changed. Clouds rolled in. She wanted more information. I asked her what she wanted to know.
This was another practiced and deliberate question on my part. I felt foolish to still be learning how to talk to people at this stage of my career. But Arnold had also recommended a strategy palliative care physicians use when they have to talk about bad news with people—they “ask, tell, ask.” They ask what you want to hear, then they tell you, and then they ask what you understood. So I asked.
Douglass said she wanted to know what could happen to her. I said that it was possible that nothing like this episode would ever happen again. I was concerned, however, that the tumor would likely cause another blockage. She’d have to return to the hospital in that case. We’d have to put the tube back in. Or I might need to do surgery to relieve the blockage. That could require giving her an ileostomy, a rerouting of her small bowel to the surface of her skin where we would attach the opening to a bag. Or I might not be able to relieve the blockage at all.
She didn’t ask any more questions after that. I asked her what she’d understood. She said she understood that she wasn’t out of trouble. And with those words, tears sprang to her eyes. Her son tried to comfort her and say things would be all right. She had faith in God, she said.
A few months later, I asked her whether she remembered that conversation. She said she sure did. She didn’t sleep that night at home. The image of wearing a bag in order to eat hovered in her mind. “I was horrified,” she said.
She recognized that I was trying to be gentle. “But that doesn’t change the reality that you knew that another blockage was in the offing.” She’d always understood that the ovarian cancer was a looming danger for her, but she really hadn’t pictured
how
until then.
She was glad we’d spoken, nonetheless, and so was I. Because the day after her discharge from the hospital, she started vomiting again. The blockage was back. She was readmitted. We put the tube back in.
With a night of fluids and rest, the symptoms once again subsided without need for surgery. But this second episode jolted her because we’d spoken about the meaning of a blockage, that it was her tumor closing in. She saw the connections between events of the previous couple of months, and we talked about the mounting series of crises she’d experienced: the third round of chemotherapy after the previous one had failed, the bad side effects, the pulmonary embolism with its terrible shortness of breath, the bowel obstruction after that, and its almost immediate return. She was starting to grasp that this is what the closing phase of a modern life often looks like—a mounting series of crises from which medicine can offer only brief and temporary rescue. She was experiencing what I have come to think of as the ODTAA syndrome: the syndrome of One Damn Thing After Another. It does not have a totally predictable path. The pauses between crises can vary. But after a certain point, the direction of travel becomes clear.
Douglass did make that trip to Florida. She put her feet in the sand and walked with her husband and saw friends and ate the no-raw-fruits-or-vegetables diet I’d advised her to eat to minimize the chance a fibrous leaf of lettuce got jammed trying to make it through her intestine. Toward the end of the time, she had a fright. She developed bloating after a meal and returned
home to Massachusetts a couple days early, worried that the bowel obstruction was back. But the symptoms subsided, and she made a decision. She was going to take a break from her chemotherapy, at least for now. She didn’t want to plan her life around the infusions of chemotherapy and the nausea and the painful rashes and the hours of the day she’d spend in bed with fatigue. She wanted to be a wife/mother/neighbor/friend again. She decided, like my father, to take what time would give her, however long that might be.
ONLY NOW DID
I begin to recognize how understanding the finitude of one’s time could be a gift. After my father was given his diagnosis, he’d initially continued daily life as he always had—his clinical work, his charity projects, his thrice-weekly tennis games—but the sudden knowledge of the fragility of his life narrowed his focus and altered his desires, just as Laura Carstensen’s research on perspective suggested it would. It made him visit with his grandchildren more often, put in an extra trip to see his family in India, and tamp down new ventures. He talked about his will with my sister and me and about his plans for sustaining beyond him the college he’d built near his village. One’s sense of time can change, though. As the months passed without his symptoms worsening, my father’s fear of the future softened. His horizon of time began to lift—it might be years before anything concerning happened, we all thought—and as it did, his ambitions returned. He launched a new construction project for the college in India. He ran for district governor of Rotary for southern Ohio, a position that wouldn’t even start for another year, and won the office.
Then, in early 2009, two and a half years after his diagnosis, his symptoms began to change. He developed trouble with his
right hand. It started with the tingling and numbness in the tips of his fingers. His grip strength gave out. On the tennis court, the racket began flying out of his hand. He dropped drinking glasses. At work, tying knots and handling catheters grew difficult. With both limbs now developing signs of paralysis, it seemed like he’d come to his line in the sand.
We talked. Wasn’t it time for him to stop practicing surgery? And wasn’t it time to see Dr. Benzel about surgery for himself?
No, he said. He wasn’t ready for either. A few weeks later, however, he announced that he would retire from surgery. As for the spinal operation, he still feared he’d lose more than he’d gain.
After his retirement party that June, I braced for the worst. Surgery had been his calling. It had defined his purpose and meaning in life—his loyalties. He’d wanted to be a doctor since the age of ten, when he saw his young mother die from malaria. So now what was this man going to do with himself?
We witnessed an altogether unexpected transformation. He threw himself into his work as Rotary district governor, whose term of office had just started. He absorbed himself so totally that he changed his e-mail signature from “Atmaram Gawande, M.D.” to “Atmaram Gawande, D.G.” Somehow, instead of holding on to the lifelong identity that was slipping away from him, he managed to redefine it. He moved his line in the sand. This is what it means to have autonomy—you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.
The job of district governor meant spending the year developing the community service work of all the Rotary Clubs in the region. So my father set a goal of speaking at the meetings of each of his district’s fifty-nine clubs—twice—and took to the road with my mother. Over the next several months, they crisscrossed
a district ten thousand square miles in size. He always did the driving—he could still do that without trouble. They liked to stop at Wendy’s for the chicken sandwiches. And he tried to meet as many of the district’s thirty-seven hundred Rotarians as he could.
By the following spring, he was completing his second circuit through the district. But the weakness in his left arm had progressed. He couldn’t lift it above sixty degrees. His right hand was losing strength, too. And he was starting to have trouble walking. Up until this point, he’d managed to persist with playing tennis but now, to his great dismay, he had to give it up.
“There’s a heaviness in my legs,” he said. “I’m afraid, Atul.”
He and my mother came to visit in Boston. On a Saturday night, the three of us sat in the living room, my mother next to him on a couch and me across from them. I distinctly remember the feeling that a crisis was creeping up on us. He was becoming quadriplegic.
“Is it time for surgery?” I asked him.
“I don’t know,” he said. It was time, I realized, for our own hard conversation.
“I’m worried,” I said. I recalled the list of questions Susan Block, the palliative medicine expert, had said mattered most and posed them to my father one by one. I asked him what his understanding was of what was happening to him.
He understood what I understood. He was becoming paralyzed, he said.
What were his fears if that should happen, I asked?
He said he feared that he would become a burden on my mother and that he wouldn’t be able to take care of himself anymore. He couldn’t fathom what his life would become. My mother, tearing, said she would be there for him. She would be
happy to take care of him. Already the shift had started. He was having her do more and more of the driving, and she arranged his medical appointments now.
What were his goals if his condition worsened, I asked?
He thought on this for a moment. He wanted to finish his Rotary responsibilities, he decided—he would be finishing his term in mid-June. And he wanted to make sure his college and family in India were going to be all right. He wanted to visit them if he could.
I asked him what trade-offs he was willing to make and not willing to make to try to stop what was happening to him. He wasn’t sure what I meant. I told him about Susan Block’s father, who’d also had a spinal cord tumor. He’d said that if he could still watch football on television and eat chocolate ice cream, that would be good enough for him.
My dad didn’t think that would be good enough for him at all. Being with people and interacting with them was what he cared about most, he said. I tried to understand—so even paralysis would be tolerable as long as he could enjoy people’s company?
“No,” he said. He couldn’t accept a life of complete physical paralysis, of needing total care. He wanted to be capable of not only being with people but also still being in charge of his world and life.
His advancing quadriplegia threatened to take that away soon. It would mean twenty-four-hour nursing care, then a ventilator and a feeding tube. He didn’t sound like he wanted that, I said.