Being Mortal: Medicine and What Matters in the End (19 page)

She worked hard to take the setbacks and side effects in stride. She was upbeat by nature, and she managed to maintain her optimism. Little by little, however, she grew sicker—increasingly exhausted and short of breath. In a matter of months, it was as if she’d aged decades. By November, she didn’t have the wind to walk the length of the hallway from the parking garage to Marcoux’s office; Rich had to push her in a wheelchair.

A few days before Thanksgiving, she had another CT scan, which showed that the pemetrexed—her third drug regimen—wasn’t working, either. The lung cancer had spread: from the left chest to the right, to the liver, to the lining of her abdomen, and to her spine. Time was running out.

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THIS IS THE
moment in Sara’s story that poses our difficult question, one for everyone living in our era of modern medicine: What do we want Sara and her doctors to do now? Or, to put it another way, if you were the one who had metastatic cancer—or, for that matter, any similarly advanced and incurable condition—what would you want your doctors to do?

The issue has gotten attention, in recent years, for reasons of expense. The soaring cost of health care has become the greatest threat to the long-term solvency of most advanced nations, and the incurable account for a lot of it. In the United States, 25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life, and most of that money goes for care in their last couple of months that is of little apparent benefit. The United States is often thought to be unusual in this regard, but it doesn’t appear to be. Data from elsewhere are more limited, but where they are available—for instance, from countries like the Netherlands and Switzerland—the results are similar.

Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. A 2011 study, for instance, found that medical spending for a breast cancer patient in the first year of diagnosis averaged an estimated $28,000, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. Costs fell after that to about $2,000 a year. For a patient whose cancer proves fatal, though, the cost curve is U-shaped, rising toward the end—to an average of $94,000 during the last year of life with a metastatic breast cancer. Our medical system is excellent at trying to stave off death with $12,000-a-month chemotherapy, $4,000-a-day intensive care, $7,000-an-hour surgery. But, ultimately, death comes, and few are good at knowing when to stop.

While seeing a patient in an intensive care unit at my hospital, I stopped to talk with the critical care physician on duty, someone I’d known since college. “I’m running a warehouse for the dying,” she said bleakly. Of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the ICU for the second time in three weeks, drugged to oblivion and tubed in most natural orifices as well as a few artificial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone and a fungal pneumonia that arises only in the final phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheostomy, and she had mentioned that she didn’t want to die that way. But her children couldn’t let her go and asked to proceed with the placement of various devices: a permanent tracheostomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.

Almost all these patients had known, for some time, that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage.

“We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point,” my friend said. “The problem is that’s way too late.”

In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an ICU because of terminal illness is for most people a kind of failure. You lie attached to a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said good-bye or “It’s okay” or “I’m sorry” or “I love you.”

People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.

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IN THE PAST
, when dying was typically a more precipitous process, we did not have to think about a question like this. Though some diseases and conditions had a drawn-out natural history—tuberculosis is the classic example—without the intervention of modern medicine, with its scans to diagnose problems early and its treatments to extend life, the interval between recognizing that you had a life-threatening ailment and dying was commonly a matter of days or weeks. Consider how our presidents died before the modern era. George Washington developed a throat infection at home on December 13, 1799, that killed him by the next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson all succumbed to strokes and died within two days. Rutherford Hayes had a heart attack and died three days later. Others did have a longer course: James Monroe and Andrew Jackson died from progressive and far longer-lasting (and highly dreaded) tubercular consumption. Ulysses Grant’s oral cancer took a year to kill him. But, as end-of-life researcher Joanne Lynn has observed, people generally experienced life-threatening illness the way they experienced bad weather—as something that struck with little warning. And you either got through it or you didn’t.

Dying used to be accompanied by a prescribed set of customs. Guides to
ars moriendi
, the art of dying, were extraordinarily popular; a medieval version published in Latin in 1415 was reprinted in more than a hundred editions across Europe. People believed death should be accepted stoically, without fear or self-pity or hope for anything more than the forgiveness of God. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours. Last words came to hold a particular place of reverence.

These days, swift catastrophic illness is the exception. For most people, death comes only after long medical struggle with an ultimately unstoppable condition—advanced cancer, dementia, Parkinson’s disease, progressive organ failure (most commonly the heart, followed in frequency by lungs, kidneys, liver), or else just the accumulating debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology can sustain our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are? Is someone with terminal cancer, dementia, or incurable heart failure dying, exactly?

I was once the surgeon for a woman in her sixties who had severe chest and abdominal pain from a bowel obstruction that had ruptured her colon, caused her to have a heart attack, and put her into septic shock and kidney failure. I performed an emergency operation to remove the damaged length of colon and give her a colostomy. A cardiologist stented open her coronary arteries. We put her on dialysis, a ventilator, and intravenous feeding, and she stabilized. After a couple of weeks, though, it was clear that she was not going to get much better. The septic shock had left her with heart and respiratory failure as well as dry gangrene of her foot, which would have to be amputated. She had a large, open abdominal wound with leaking bowel contents, which would require weeks of twice-a-day dressing changes and cleansing in order to heal. She would not be able to eat. She would need a tracheostomy. Her kidneys were gone, and she would have to spend three days a week on a dialysis machine for the rest of her life.

She was unmarried and without children. So I sat with her sisters in the ICU’s family room to talk about whether we should proceed with the amputation and the tracheostomy.

“Is she dying?” one of the sisters asked me.

I didn’t know how to answer the question. I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality and created a new difficulty for mankind: how to die.

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ONE SPRING FRIDAY
morning, I went on patient rounds with Sarah Creed, a nurse with the hospice service that my hospital system operated. I didn’t know much about hospice. I knew that it specialized in providing “comfort care” for the terminally ill, sometimes in special facilities, though nowadays usually at home. I knew that, in order for a patient of mine to be eligible, I had to write a note certifying that he or she had a life expectancy of less than six months. I also knew few patients who had chosen it, except in their very last few days, because they had to sign a form indicating that they understood their disease was terminal and that they were giving up on medical care that aimed to stop it. The picture I had of hospice was of a morphine drip. It was not of this brown-haired and blue-eyed former ICU nurse with a stethoscope, knocking on Lee Cox’s door on a quiet morning in Boston’s Mattapan neighborhood.

“Hi, Lee,” Creed said when she entered the house.

“Hi, Sarah,” Cox said. She was seventy-two years old. She’d had several years of declining health due to congestive heart failure from a heart attack and pulmonary fibrosis, a progressive and irreversible lung disease. Doctors tried slowing the disease with steroids, but they didn’t work. She had cycled in and out of the hospital, each time in worse shape. Ultimately, she accepted hospice care and moved in with her niece for support. She was dependent on oxygen and unable to do the most ordinary tasks. Just answering the door, with her thirty-foot length of oxygen tubing trailing after her, had left her winded. She stood resting for a moment, her lips pursed and her chest heaving.

Creed took Cox’s arm gently as we walked to the kitchen to sit down, asking her how she had been doing. Then she asked a series of questions, targeting issues that tend to arise in patients with terminal illness. Did Cox have pain? How was her appetite, thirst, sleeping? Any trouble with confusion, anxiety, or restlessness? Had her shortness of breath grown worse? Was there chest pain or heart palpitations? Abdominal discomfort? Trouble with constipation or urination or walking?

She did have some new troubles. When she walked from the bedroom to the bathroom, she said, it now took at least five minutes to catch her breath, and that frightened her. She was also getting chest pain. Creed pulled a blood pressure cuff from her medical bag. Cox’s blood pressure was acceptable, but her heart rate was high. Creed listened to her heart, which had a normal rhythm, and to her lungs, hearing the fine crackles of her pulmonary fibrosis but also a new wheeze. Her ankles were swollen with fluid, and when Creed asked for her pillbox she saw that Cox was out of her heart medication. She asked to see Cox’s oxygen equipment. The liquid-oxygen cylinder at the foot of her neatly made bed was filled and working properly. The nebulizer equipment for her inhaler treatments, however, was broken.

Given the lack of heart medication and inhaler treatments, it was no wonder that she had worsened. Creed called Cox’s pharmacy. They said that her refills had been waiting all along. So Creed contacted Cox’s niece to pick up the medicine when she came home from work. She also called the nebulizer supplier for same-day emergency service.

She then chatted with Cox in the kitchen for a few minutes. Cox’s spirits were low. Creed took her hand. Everything was going to be all right, she said. She reminded her about the good days she’d had—the previous weekend, for example, when she’d been able to go out with her portable oxygen cylinder to shop with her niece and get her hair colored.

I asked Cox about her earlier life. She had made radios in a Boston factory. She and her husband had had two children and several grandchildren.

When I asked her why she had chosen hospice care, she looked downcast. “The lung doctor and heart doctor said they couldn’t help me anymore,” she said. Creed glared at me. My questions had made Cox sad again.

She told a story of the trials of aging overlain with the trials of having an illness that she knew would someday claim her. “It’s good to have my niece and her husband helping to watch me every day,” she said. “But it’s not my home. I feel like I’m in the way.” Multigenerational living fell short of its nostalgic image, again.