Being Mortal: Medicine and What Matters in the End (28 page)

He went on. “I woke up this morning and it was a big change. I couldn’t stand up. I couldn’t push the pillow up in the bed. I couldn’t handle a toothbrush to brush my teeth. I couldn’t pull my pants or socks on. My torso is becoming weak. It’s getting hard to sit up.”

“Hospice is about palliative care,” she said, about giving care to help manage these difficulties. She went through the services that Medicare would cover for my father. He’d have a palliative care physician who could help adjust medications and other treatments to minimize his nausea, pain, and other symptoms as much as possible. He’d have regular nursing visits plus emergency nursing support available twenty-four hours a day by phone. He’d have fourteen hours a week of a home health aide, who could help with bathing, getting dressed, cleaning up the house, anything nonmedical. There’d be a social worker and spiritual counselor available. He’d have the medical equipment he needed. And he could “revocate”—drop the hospice services—at any time.

She asked him if these were services he’d like to start now or think about.

“Start now,” he said. He was ready. I looked at my mother. Her face was blank.

The nurse practitioner got into the nitty-gritty: Did he have a DNR? A baby monitor or a bell for him to summon a caregiver? A 24-7 presence in the house to help?

Then she asked, “What funeral home do you want to use?” and I was divided between shock—are we really having this conversation?—and reassurance at how normal and routine this was to her.

“Jagers,” he said, without hesitation. He’d been thinking about it all along, I realized. My father was calm. My mother, however, was stunned. This was not going where she’d been prepared for it to go.

The nurse turned to her and, not unkindly but nonetheless all too clearly, said, “When he passes away, don’t call 911. Don’t call the police. Don’t call an ambulance company. Call us. A nurse will help. She will discard the narcotics, arrange the death certificate, wash his body, arrange with the funeral home.”

“Right now, we’re not thinking of death,” my mother said firmly. “Just paralysis.”

“Okay,” the nurse said.

She asked my father what his biggest concerns were. He said he wanted to stay strong while he could. He wanted to be able to type, because e-mail and Skype were how he connected with family and friends all over the world. He didn’t want pain.

“I want to be happy,” he said.

She stayed almost two hours. She examined him, inspected the house for hazards, sorted out where to place the bed, and figured out a schedule for the nurse and the home health aide to visit. She also told my father he needed to do just two main things. She figured out he’d been taking his pain medications haphazardly, tinkering with which drug he took at what dose, and she told him he needed to take a consistent regimen and log his response so the hospice team could gauge the effect accurately and help him find the optimal mix to minimize pain and grogginess. And she told him that he needed to no longer attempt to get up or around without someone helping him.

“I’m used to just getting up and walking,” he said.

“If you break your hip, Dr. Gawande, it will be a disaster,” she said.

He agreed to her instructions.

In the days that followed, it astonished me to see the difference the hospice’s two simple instructions made. My father couldn’t resist still tinkering with his medications, but he did it much less than he had and he kept a log of his symptoms and what meds he took when. The nurse who visited each day would go over it with him and identify adjustments to make. He’d been oscillating wildly, we realized, between severe pain and becoming so drugged he seemed drunk, with slurred, confused speech and difficulty controlling his limbs. The changes gradually smoothed the pattern. The drunken episodes all but disappeared. And his pain control improved, although it was never complete, to his great frustration and sometimes anger.

He also complied with the instructions not to attempt to get around without help. The hospice helped my parents hire a personal care aide to stay overnight and assist my father to the bathroom when he needed it. After that, he had no more falls, and we gradually realized how much each one had set him back. Every passing day without a fall allowed his back and neck spasms to reduce, his pain to become better controlled, and his strength to increase.

We witnessed for ourselves the consequences of living for the best possible day today instead of sacrificing time now for time later. He’d become all but wheelchair bound. But his slide into complete quadriplegia halted. He became more able to manage short distances with a walker. His control of his hands and his arm strength improved. He had less trouble calling people on the phone and using his laptop. The greater predictability of his day let him have more visitors over. Soon he even began hosting parties at our house again. He found that in the narrow space of possibility that his awful tumor had left for him there was still room to live.

Two months on, in June, I flew home from Boston not only to see him but also to give the graduation address for Ohio University. My father had been excited about attending the convocation from the moment I had been invited a year before. He was proud, and I had envisioned both my parents being there. Little is more gratifying than actually being wanted back in your hometown. For a while, however, I feared my father might not survive long enough. In the last few weeks, it became apparent he would, and the planning turned to logistics.

The ceremony was to take place in the university’s basketball arena with the graduates in folding chairs on the parquet and their families up in the stands. We worked out a plan to bring my father up the outside ramp by golf cart, transfer him to a wheelchair, and seat him on the periphery of the floor to watch. But when the day came and the cart brought him to the arena doors, he was adamant that he would walk and not sit in a wheelchair on the floor.

I helped him to stand. He took my arm. And he began walking. I’d not seen him make it farther than across a living room in half a year. But walking slowly, his feet shuffling, he went the length of a basketball floor and then up a flight of twenty concrete steps to join the families in the stands. I was almost overcome just witnessing it. Here is what a different kind of care—a different kind of medicine—makes possible, I thought to myself. Here is what having a hard conversation can do.

8
• Courage

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 seems 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 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 trade-offs 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.