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.