“Right now, I am foggy in my head. I have tinnitus. I have radiating arm pains. I have trouble walking. That’s what’s getting me down. Will the drugs make any of this worse?”
She allowed that they could, but it depended on the drug. The discussion became difficult for me or my parents to follow, despite all three of us being doctors. There were too many options, too many risks and benefits to consider with every possible path, and the conversation never got to what he cared about, which was finding a path with the best chance of maintaining a life he’d find worthwhile. She was driving exactly the kind of conversation that I myself tended to have with patients but that I didn’t want to have anymore. She was offering data and asking my father to make a choice. Did he want the red pill or the blue pill? But the meaning behind the options wasn’t clear at all.
I turned to my mother and father, and said, “Can I ask her about what happens if the tumor progresses?” They nodded. So I did.
The oncologist spoke straightforwardly. His upper extremity weakness would gradually increase, she said. His lower extremity weakness would also advance but respiratory insufficiency—difficulty getting enough oxygen—from the weakness of his chest muscles would become the bigger problem.
Will that feel uncomfortable, my father asked?
No, she said. He’d just grow fatigued and sleepy. But the neck pain and shooting pains would likely increase. He could also develop trouble swallowing as the tumor grew to involve critical nerves.
I asked her what the range of time looked like for people to reach this final point, both with treatment and without.
The question made her squirm. “It’s hard to say,” she said.
I pushed her. “What’s the shortest time you’ve seen and the longest time you’ve seen for people who took no treatment?”
Three months was the shortest, she said, three years the longest.
And with treatment?
She got mumbly. Finally she said that the longest might not have been that much more than three years. But with treatment, the average should shift toward the longer end.
It was a hard and unexpected answer for us. “I didn’t realize,” my father said, his voice trailing off. I remembered what Paul Marcoux, Sara Monopoli’s oncologist, had told me about his patients. “I’m thinking, can I get a pretty good year or two out of this?… They’re thinking ten or twenty years.” We were thinking ten or twenty years, too.
My father decided to take some time to consider his options. She gave him a prescription for a steroid pill that might temporarily slow the tumor’s growth, while having relatively few side effects. That night, my parents and I went out for dinner.
“The way things are going I could be bedridden in a few months,” my father said. The radiation therapy had only made matters worse. Suppose chemotherapy did the same? We needed guidance. He was torn between living the best he could with what he had versus sacrificing the life he had left for a murky chance of time later.
One of the beauties of the old system was that it made these decisions simple. You took the most aggressive treatment available. It wasn’t a decision at all, really, but a default setting. This business of deliberating on your options—of figuring out your priorities and working with a doctor to match your treatment to them—was exhausting and complicated, particularly when you didn’t have an expert ready to help you parse the unknowns and ambiguities. The pressure remains all in one direction, toward doing more, because the only mistake clinicians seem to fear is doing too little. Most have no appreciation that equally terrible mistakes are possible in the other direction—that doing too much could be no less devastating to a person’s life.
My father went home still uncertain what to do. Then he had a series of five or six falls. The numbness in his legs was getting worse. He began losing the sense of where his feet were underneath him. One time, going down, he hit his head hard and had my mother call 911. The EMTs arrived, siren wailing. They put him on a backboard and in a hard collar and raced him to the ER. Even in his own hospital, it was three hours before he could get the X-rays confirming that nothing was broken and that he could sit up and take the collar off. By then, the stiff collar and rock-hard backboard had put him in excruciating pain. He required multiple injections of morphine to control it and wasn’t released home until near midnight. He told my mother he never wanted to be put through that kind of experience again.
Two mornings later, I got a call from my mother. Around 2:00 a.m., my father had gotten out of bed to go to the bathroom, she said, but when he went to stand up, his legs wouldn’t hold him, and he went down. The floor was carpeted. He didn’t hit his head and didn’t seem hurt. But he couldn’t get himself up. His arms and legs were too weak. She tried to lift him back into bed, but he was too heavy. He didn’t want to call an ambulance again. So they decided to wait until morning for help. She pulled blankets and pillows off the bed for him and lay down beside him, not wanting him to be alone. But with her bad arthritic knees—she was seventy-five years old herself—she found she now couldn’t get up either. Around 8:00 a.m., the housekeeper arrived and found them both on the floor. She helped my mother to her feet and my father into bed. That was when my mother called. She sounded frightened. I asked her to put my dad on the line. He was crying, frantic, sputtering, hard to understand.
“I’m so scared,” he said. “I’m becoming paralyzed. I can’t do this. I don’t want this. I don’t want to go through this. I want to die rather than go through this.”
Tears wet my eyes. I’m a surgeon. I like solving things. But how do I solve this? For two minutes, I tried to just listen as he repeated over and over that he couldn’t do this. He asked me if I could come.
“Yes,” I said.
“Can you bring the kids?” He thought he was dying. But the hard thing was that he was not. He could be this way for a long while, I realized.
“Let me come first,” I told him.
I set about arranging a plane ticket back home to Ohio and canceling my patients and commitments in Boston. Two hours later he called back. He’d calmed down. He’d been able to stand up again, even walk to the kitchen. “You don’t have to come,” he said. “Come on the weekend.” But I decided to go; the crises were mounting.
When I made it to Athens early that evening, my mother and father were sitting at the dinner table eating, and they had already turned the six hours he spent paralyzed on the bedroom floor into a comedy in the retelling.
“It’s been years since I’ve been down on the floor,” my mother said.
“It was almost romantic,” my father said, with what I can only describe as a giggle.
I tried to roll with it. But the person I saw before me was different from the one I’d seen just a few weeks before. He’d lost more weight. He was so weak his speech sometimes slurred. He had trouble getting food into his mouth, and his shirt was smeared with his dinner. He needed help standing from sitting. He’d become old before my eyes.
Trouble was coming. Today was the first day I really grasped what it would mean for him to become paralyzed. It meant difficulty with the basics—standing up, getting to the bathroom, getting bathed, getting dressed—and my mother wasn’t going to be able to help him. We needed to talk.
Later that night, I sat with my parents and asked, “What are we going to do to take care of you, Dad?”
“I don’t know,” he said.
“Have you had trouble getting your breath?”
“He can breathe,” my mom said.
“We’re going to need a proper way to take care of him,” I said to her.
“Maybe they can give him chemo,” she said.
“No,” he said sharply. He’d made up his mind. Even just the side effects of the steroids were proving difficult for him to tolerate—sweats, anxiety, difficulties with thinking and moodiness—and he’d recognized no benefit. He did not think a full-blown course of chemotherapy was going to make any radical improvement, and he did not want the side effects.<
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I helped my mother get him to bed when it got late. I talked with her about the help he was going to need. He was going to need nursing care, a hospital bed, an air mattress to prevent bedsores, physical therapy to prevent his muscles from stiffening. Should we look at nursing homes?
She was aghast. Absolutely not, she said. She’d had friends in the ones around town, and they’d appalled her. She could not imagine putting him in any of them.
We’d come to the same fork in the road I have seen scores of patients come to, the same place I’d seen Alice Hobson come to. We were up against the unfixable. But we were desperate to believe that we weren’t up against the unmanageable. Yet short of calling 911 the next time trouble hit, and letting the logic and momentum of medical solutions take over, what were we to do? Between the three of us we had 120 years of experience in medicine, but it seemed a mystery. It turned out to be an education.
* * *
WE NEEDED OPTIONS, and Athens was not a place where anyone could expect the kinds of options for the frail and aged that I’d seen sprouting in Boston. It is a small town in the foothills of Appalachia. The local college, Ohio University, is its lifeblood. One-third of the county lived in poverty, making ours the poorest county in the state. So it seemed a surprise when I asked around and discovered that even here people were rebelling against the way medicine and institutions take control of their lives in old age.
I spoke, for instance, to Margaret Cohn. She and her husband, Norman, were retired biologists. He had a severe form of arthritis known as ankylosing spondylitis and, because of a tremor and the effects of a polio infection in his youth, he faced increasing difficulty walking. The two of them were becoming concerned about whether they’d be able to manage in their home on their own. They didn’t want to be forced to move in with any of their three children, who were scattered far away. They wanted to stay in the community. But when they looked around town for assisted living options, nothing was remotely acceptable. “I would live in a tent before I would live like that,” she told me.
She and Norman decided to come up with a solution themselves, their age be damned. “We realized, if we didn’t do it, no one was going to do it for us,” she said. Margaret had read an article in the newspaper about Beacon Hill Village, the Boston program that created neighborhood support for the aged to stay in their homes, and she was inspired. The Cohns got a group of friends together, and in 2009 they formed Athens Village on the same model. They calculated that, if they could get seventy-five people to pay four hundred dollars per year, it would be enough to establish the essential services. A hundred people signed up, and Athens Village was under way.
One of the first people they hired was a wonderfully friendly handyman. He was willing to help people with all the mundane household matters that you take for granted when you’re able but that become critical to surviving in your home when you’re not—fixing a broken lock, changing a lightbulb, sorting out what to do about a broken water heater.
“He could do almost anything. People who joined felt the maintenance guy alone was worth the four hundred dollars,” Margaret said.
They also hired a part-time director. She checked up on people and pulled together volunteers who could stop by if the power was out or someone needed a casserole. A local visiting nurse agency provided free office space and a member discount on nursing aide costs. Church and civic organizations provided a daily van transportation service and meals-on-wheels for members who needed it. Bit by bit, Athens Village built services and a community that could ensure that members were not left flailing when their difficulties mounted. It came not a moment too soon for the Cohns. A year after they’d founded it, Margaret took a fall that put her permanently in a wheelchair. Even with both of them disabled and in their mideighties, they were able to make staying at home work.
My parents and I talked about joining Athens Village. The only other option was home hospice care, and I hesitated to raise it. Its mere mention would drag the dark, unspoken subject of dying onto the coffee table between us. Discussing Athens Village let us pretend what my father was going through was just a kind of aging. But I steeled myself and asked whether home hospice was something to consider, as well.
My father, it turned out, was willing to contemplate hospice, my mother less so. “I don’t think it’s necessary,” she said. But my father said that maybe it wasn’t a bad idea to have someone from the agency tell us about it.
The next morning a nurse practitioner from Appalachian Community Hospice stopped by. My mother made some tea, and we sat around our dining table. I will confess to expecting little of the nurse. This wasn’t Boston. The agency was called Appalachian Community Hospice, for God’s sake. The nurse blew me away, though.
“How are you?” she said to my dad. “Do you have a lot of pain?”
“Not right now,” he said.
“Where do you get the pain?”
“In my neck and in my back.”
With that opening, I realized, she had established a few things. She’d made sure he was in a state of mind to talk. She’d made instantly clear that what she cared about was him and how he was doing, not about his disease or his diagnosis. And she’d let us know that, surrounded by a bunch of doctors or not, she knew exactly what she was doing.
She looked to be around fifty, with short, cropped gray hair, a white cotton sweater with an embroidered rose across the front, and a stethoscope sticking out of her bag. She had a local, country accent. And with it, she got right to the point.
“They sent me out with hospice papers,” she said to my father. “What do you think about that?”
My father didn’t say anything for a moment. The nurse waited. She knew how to be silent.
“I think it may be best,” he said, “because I don’t want chemo.”
“What kinds of problems are you having?”
“Nausea,” he said. “Pain control. Grogginess. The medicine makes me too sleepy. I’ve tried Tylenol with codeine. I’ve tried Toradol pills. Now I’m on ketamine.”
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 c
ertificate, 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.
Being Mortal: Medicine and What Matters in the End Page 21