Being Mortal: Medicine and What Matters in the End (25 page)

In my career, I have always been most comfortable being Dr. Informative. (My generation of physicians has mostly steered away from being Dr. Knows-Best.) But Dr. Informative was clearly not sufficient to help Sara Monopoli or the many other seriously ill patients I’d had.

Around the time of my father’s visits with Benzel, I was asked to see a seventy-two-year-old woman with metastatic ovarian cancer who had come to my hospital’s emergency room because of vomiting. Her name was Jewel Douglass, and looking through her medical records, I saw that she’d been in treatment for two years. Her first sign of the cancer had been a feeling of abdominal bloating. She saw her gynecologist, who found, with the aid of an ultrasound, a mass in her pelvis the size of a child’s fist. In the operating room, it proved to be an ovarian cancer, and it had spread throughout her abdomen. Soft, fungating tumor deposits studded her uterus, her bladder, her colon, and the lining of her abdomen. The surgeon removed both of her ovaries, the whole of her uterus, half of her colon, and a third of her bladder. She underwent three months of chemotherapy. With this kind of treatment, most ovarian cancer patients at her stage survive two years and a third survive five years. About 20 percent of patients are actually cured. She hoped to be among these few.

She reportedly tolerated the chemotherapy well. She’d lost her hair but otherwise experienced only mild fatigue. At nine months, no tumor could be seen on her CT scans at all. At one year, however, a scan showed a few pebbles of tumor had grown back. She felt nothing—they were just millimeters in size—but there they were. Her oncologist started a different chemotherapy regimen. This time Douglass had more painful side effects—mouth sores, a burn-like rash across her body—but with salves of various kinds they were tolerable. A follow-up scan showed the treatment hadn’t worked, though. The tumors grew. They began giving her shooting pains in her pelvis.

She switched to a third kind of chemotherapy. This one was more effective—the tumors shrank, the shooting pains went away—but the side effects were much worse. Her records reported her having terrible nausea despite trying multiple medications to stop it. Limb-sapping fatigue put her in bed for hours a day. An allergic reaction gave her hives and intense itching that required steroid pills to control. One day, she became severely short of breath and had to be brought to the hospital by ambulance. Tests showed she had developed pulmonary emboli, just as Sara Monopoli had. She was put on daily injections of a blood thinner and only gradually regained her ability to breathe normally.

Then she developed clenching, gas-like pains in her belly. She began vomiting. She found she could not hold anything down, liquid or solid. She called her oncologist, who ordered a CT scan. It showed a blockage in a loop of her bowel caused by her metastases. She was sent from the radiology department to the emergency room. As the general surgeon on duty, I was called to see what I could do.

I reviewed the images from her scan with a radiologist, but we could not precisely make out how the cancer was causing her intestinal blockage. It was possible that the bowel loop had gotten caught on a knuckle of tumor and then twisted—a problem that could potentially resolve on its own, if given time. Or else the bowel had become physically compressed by a tumor growth—a problem that would resolve only with surgery to either remove or bypass the obstruction. Either way, it was a troubling sign of the advancement of her cancer—despite, now, three regimens of chemotherapy.

I went to talk to Douglass, thinking about exactly how much of this to confront her with. By this time, a nurse had given her intravenous fluids and a resident had inserted a three-foot-long tube into her nose down to her stomach, which had already drained out a half liter of bile-green fluid. Nasogastric tubes are uncomfortable, torturous devices. People who have the things stuck into them are usually not in a conversational mood. When I introduced myself, however, she smiled, made a point of having me repeat my name, and made sure she could pronounce it correctly. Her husband sat by her in a chair, pensive and quiet, letting her take the lead.

“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.