Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. 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. In ordinary medicine, the goal is to extend life. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now.
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Sara Thomas Monopoli was pregnant with her first child when her doctors learned that she was going to die. It started with a cough and a pain in her back. Then a chest X-ray showed that her left lung had collapsed, and her chest was filled with fluid.
A sample of the fluid was drawn off with a long needle and sent for testing. Instead of an infection, as everyone had expected, it was lung cancer, and it had already spread to the lining of her chest. Her pregnancy was thirty-nine weeks along, and the obstetrician who had ordered the test broke the news to her as she sat with her husband and her parents. Her mother, who had lost her best friend to lung cancer, began crying. The doctors wanted to start treatment right away, and that meant inducing labor to get the baby out.
For the moment, though, Sara and her husband, Rich, sat by themselves on a quiet terrace off the labor floor. It was a warm Monday in June, Monopoli was thirty-four. She had never smoked, or lived with anyone who had.
She exercised. She ate well. The diagnosis was bewildering. We can find the right treatment. She had wavy brown hair, like her mom, and she was perfectly healthy. The next day, Sara underwent blood tests and body scans.
Paul Marcoux, an oncologist, met with her and her family to discuss the findings. He explained that she had a non-small cell lung cancer that had started in her left lung.
Nothing she had done had brought this on. More than fifteen per cent of lung cancers—more than people realize—occur in non-smokers.
Hers was advanced, having metastasized to multiple lymph nodes in her chest and its lining. The cancer was inoperable. But there were chemotherapy options, notably a relatively new drug called Tarceva, which targets a gene mutation commonly found in lung cancers of female non-smokers. There is no cure for lung cancer at this stage. Even with chemotherapy, the median survival is about a year.
But it seemed harsh and pointless to confront Sara and Rich with this now. Vivian was in a bassinet by the bed. They were working hard to be optimistic. As Sara and Rich later told the social worker who was sent to see them, they did not want to focus on survival statistics. Sara was started on the Tarceva, which produced an itchy, acne-like facial rash and numbing tiredness.
She also underwent a surgical procedure to drain the fluid around her lung; when the fluid kept coming back, a thoracic surgeon eventually placed a small, permanent tube in her chest, which she could drain whenever fluid accumulated and interfered with her breathing. Three weeks after the delivery, she was admitted to the hospital with severe shortness of breath from a pulmonary embolism—a blood clot in an artery to the lungs, which is dangerous but not uncommon in cancer patients.
She was started on a blood thinner. Then test results showed that her tumor cells did not have the mutation that Tarceva targets. Marcoux recommended a different, more standard chemotherapy, with two drugs called carboplatin and paclitaxel. But the paclitaxel triggered an extreme, nearly overwhelming allergic response, so he switched her to a regimen of carboplatin plus gemcitabine.
Response rates, he said, were still very good for patients on this therapy. She spent the remainder of the summer at home, with Vivian and her husband and her parents, who had moved in to help. She loved being a mother. Between chemotherapy cycles, she began trying to get her life back. Then, in October, a CT scan showed that the tumor deposits in her left lung and chest and lymph nodes had grown substantially.
The chemotherapy had failed. She was switched to a drug called pemetrexed. Studies found that it could produce markedly longer survival in some patients. In reality, however, only a small percentage of patients gained very much.
On average, the drug extended survival by only two months—from eleven months to thirteen months—and that was in patients who, unlike Sara, had responded to first-line chemotherapy. 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. 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.
Or, to put it another way, if you were the one who had metastatic cancer—or, for that matter, a similarly advanced case of emphysema or congestive heart failure—what would you want your doctors to do? The issue has become pressing, in recent years, for reasons of expense.
Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit. 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. Medical spending for a breast-cancer survivor, for instance, averaged an estimated fifty-four thousand dollars in , the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy.
For a patient with a fatal version of the disease, though, the cost curve is U-shaped, rising again toward the end—to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer. Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery.
But, ultimately, death comes, and no one is good at knowing when to stop. Demagogues shout about rationing and death panels. Market purists blame the existence of insurance: if patients and families paid the bills themselves, those expensive therapies would all come down in price. The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made.
Out 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 I. 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. 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. And, six months after their death, their caregivers were three times as likely to suffer major depression. You lie on 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. People have concerns besides simply prolonging their lives.
Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. 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. For all but our most recent history, dying was typically a brief process. Whether the cause was childhood infection, difficult childbirth, heart attack, or pneumonia, the interval between recognizing that you had a life-threatening ailment and death was often just 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, , that killed him by the next evening.
Rutherford Hayes had a heart attack and died three days later. Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi , the art of dying, were extraordinarily popular; a medieval Latin text was reprinted in more than a hundred editions across Europe. 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 incurable condition—advanced cancer, progressive organ failure usually the heart, kidney, or liver , or the multiple debilities of very old age.
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 sustains 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, incurable congestive heart failure dying, exactly? I once cared 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 renal failure.
I performed an emergency operation to remove the damaged length of colon and give her a colostomy. A cardiologist stented her coronary arteries. We put her on dialysis, a ventilator, and intravenous feeding, and stabilized her.
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.
“Letting go,” and why it’s so hard to do: Atul Gawande explores the challenges of end-of-life care
A surgeon and writer, Dr. In his article Dr. Gawande explains that expense is the reason that end-of-life medical care has become a topic of discussion. However, if the disease worsens, treatment escalates, and cancer-related expenses create a U-shaped curve.
Atul Gawande: “Letting Go: What Should Medicine Do When It Can’t Save Your Life?”
July 27, Thank you for the post, Alex. First of all, he was willing to be there. But most of all, he had the concern, the ability, and the courage to help the family face the fact that no amount of tertiary care was going to stop the cancer. July 27, at PM.
Summary : In the August 2 issue of the New Yorker , Boston surgeon Atul Gawande writes about the ambiguities that plague end-of-life care. Ultimately, Gawande suggests, the problem with the way we deal with death today is that we have forgotten the art of dying. Palliative and hospice care can help us recover a lost art, he adds, though not quite in the way most of us expect. The goal is not to cut costs and curtail suffering by shortening the process of dying.