Dying: Between the Past’s Acceptance of Inevitability and Today’s Denial

The following is an excerpt from Being Mortal: Medicine and What Matters in the End by Dr. Atul Gawande. This 2014 This book was quite a sobering read that I think everyone, especially those in medicine should pick up. As Dr. Gawande states at the beginning of it, medical education is so focused on saving lives that physicians may be the least prepared for their patients to deal with the inevitable flip side of this coin of existence. But this unpreparedness is not limited to medical professionals. It’s not that common nowadays to come across a writing that puts the reader face to face with the reality of aging and finality of life. It’s one thing to recognize in an abstract sense that we will all die. But Dr. Gawande narrates in very explicit detail how most of us as individuals, and all of us as a society are so not ready to deal with it that we ultimately suffer when it’s our turn. This unpreparedness is emboldened by modern medicine, which as he puts it focuses on the technical aspect of fixing the body while ignoring the sustenance of the soul. We don’t know how to die and rarely recognize when it’s time to let go because we confuse acceptance of reality with giving up.

How do you want to live out your old age if you get there? If you, God forbid, happened to be afflicted by a terminal illness, how will you want to proceed with your medical care? Will you sign a “Do Not Resuscitate” order? At what point will you accept that you’ve had enough and want to just die in peace? What will you say at the end? Have you thought about any of this?

I recommend this book not because it’s great writing, which it is, but because it forces the reader through a number of clinical cases and personal narratives to confront the very thing we’re very good at avoiding even the thought of – our own ultimate frailty and inevitable death.

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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 treatment 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 with 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, kidney, 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 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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