Authors: Atul Gawande
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.
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.
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.
Creed gave her a hug and one last reminder before we left. “What do you do if you have chest pain that doesn’t go away?” she asked.
“Take a nitro,” Cox said, referring to the nitroglycerin pill that she can slip under her tongue.
“And?”
“Call you.”
“Where’s the number?”
She pointed to the twenty-four-hour hospice call number that was taped beside her phone.
Outside, I confessed that I was confused by what Creed was doing. A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course?
“That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference
between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—much as nursing home reformers deploy staff to help people with severe disabilities. In terminal illness that means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out with family once in a while—not on whether Cox’s life would be longer or shorter. Nonetheless, when she was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.
Hospice is not an easy choice for a person to make. A hospice nurse enters people’s lives at a strange moment—when they have understood that they have a fatal illness but not necessarily acknowledged that they are dying. “I’d say only about a quarter have accepted their fate when they come into hospice,” Creed said. When she first encounters her patients, many feel that their doctors have simply abandoned them. “Ninety-nine percent understand they’re dying, but one hundred percent hope they’re not,” she told me. “They still want to beat their disease.” The initial visit is always tricky, but she has found ways to smooth things over. “A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.’ ”
That was how she started with Dave Galloway, whom we
visited after leaving Lee Cox’s home. He was forty-two years old. He and his wife, Sharon, were both Boston firefighters. They had a three-year-old daughter. He had pancreatic cancer, which had spread; his upper abdomen was now solid with tumor. During the past few months, the pain had often become unbearable, and he was admitted to the hospital several times for pain crises. At his most recent admission, about a week earlier, it was found that the tumor had perforated his intestine. There wasn’t even a temporary fix for this problem. The medical team started him on intravenous nutrition and offered him a choice between going to the intensive care unit and going home with hospice. He chose to go home.
“I wish we’d gotten involved sooner,” Creed told me. When she and the hospice’s supervising doctor, JoAnne Nowak, evaluated Galloway upon his arrival at home, he appeared to have only a few days left. His eyes were hollow. His breathing was labored. Fluid swelled his entire lower body to the point that his skin blistered and wept. He was almost delirious with abdominal pain.
They got to work. They set up a pain pump with a button that let him dispense higher doses of narcotic than he had been allowed. They arranged for an electric hospital bed, so that he could sleep with his back raised. They also taught Sharon how to keep Dave clean, protect his skin from breakdown, and handle the crises to come. Creed told me that part of her job is to take the measure of a patient’s family, and Sharon struck her as unusually capable. She was determined to take care of her husband to the end, and perhaps because she was a firefighter, she had the resilience and the competence to do so. She did not want to hire a private-duty nurse. She handled everything, from the IV lines and the bed linens to orchestrating family members to lend a hand when she needed help.