In his final published work, “Mortality,” written while succumbing to esophageal cancer, Christopher Hitchens captures in one sentence the unavoidable truth of the dying process: “I don’t have a body, I am a body.”
No one understands this truism quite as well as journalist Katy Butler, who witnessed the prolonged process of dying that her once-formidable, war-veteran father underwent after suffering a stroke in 2001, devolving into dementia and then finally dying from pneumonia seven years later.
As doctors pushed life-support surgeries, new medications and cutting-edge interventions, Butler and her mother didn’t pray for a cure.
Instead, they wished for his death, all of which is chronicled in her troubling investigative memoir “Knocking on Heaven’s Door.”
The “end-of-life crisis,” or as Butler calls it “the caregiver crisis,” has hit epidemic levels as the number of Americans over 85 doubled to 6 million since 1990.
Baby boomers, like Butler, must now wrangle with what to do with sick elderly parents, asking questions of themselves they probably thought would never be fathomable: What can be done when a person lives too long? And has science gone too far in its mission to ward off death?
Through her experiences with her father, Butler is unwavering in her answers.
“Our optimistic science-worshiping culture wants to medicalize aging and make it nothing more than a collection of specific diseases that medicine can prevent or fix,” she writes. “But no matter what deal we make with the devil, nature outwits us. Dying can be postponed, but aging cannot be cured.”
These are bitter pills to swallow and many might fall in the trap of citing Dr. Kevorkian, death panels, and agism in health care as reasons why these end-of-life conversations should never start. But Butler argues that this very fear, our culture’s unwillingness “to engage with death until it is in our faces,” is what has gotten us so deep in trouble in the first place.
For example, 75 percent of elderly patients would rather die in their homes, yet 44 percent of them will die in hospitals, she writes. Last-ditch defibrillators, surgeries for incurable cancers and chemotherapy that only buys a few days continue to be the norm; while what she calls “Slow Medicine” — home and palliative care — remains on the fringes and is rarely covered by Medicare.
Meanwhile, about a third of Medicare patients will have surgery in the last year of their life and a tenth will have a surgery done in the last month of life, she writes — costing us an estimated $158 billion to $226 billion in medical overtreatment costs.
But what is perhaps worse is the emotional and traumatic toll continual care for a dying relative takes on the survivors, which is the true core of her book.
When Jeffrey, Butler’s hyper-intelligent Wesleyan history-professor dad, who lost his left arm while fighting in Italy during World War II, suffered a stroke at the age of 79, he was reduced to something much, much less: “With the memories, mind and reading comprehension of a highly educated 80-year-old; the spoken speech of a 4-or 5-year-old; and the physical dependence of a boy of 6.”
He could comprehend his shortcomings, and it made him “miserable,” she writes. At one point, he even commented that he had “lived too long.”
The stroke devastated not one, but two lives. “The day before [the stroke], my mother was a talented amateur artist and photographer, a woman of intimidating energy, and a spectacular housewife . . . After the stroke, she cared for my father the way she cared for my brothers and me when we were 3 or 4.”
At 77, her mother had become one of the 29 million “unpaid, politically powerless, and culturally invisible family caregivers,” while Butler herself joined the 24 million baby boomers now tending to sick parents.
When it became necessary for Jeffrey to undergo hernia surgery, his cardiologist suggested that they implant a pacemaker.
The family agreed, unaware of the downsides of what was such an (they would only later find) unnecessary preventative treatment.
Now, Jeffrey’s heart would tick on, long past his time should have been up.
“Not having a pacemaker would not have guaranteed my father a quick or easy death,” she writes. “But having a pacemaker deprived him of his best chance for one.”
Despite the surgery — or perhaps because of it — Jeffrey quickly got worse. Like about one third of those over 80, he suffered from dementia. His eyesight went, then his mobility. He began misspelling words. Then he began to see things that weren’t there. He became bladder and bowel incontinent.
“I woke up some morning in a fury. Why had his doctors not let nature take its course? If the pacemaker had never been implanted, I thought, my father might well have been out of his misery, and so would my mother and me,” Butler writes.
The family begged his cardiologist to turn off the pacemaker, but he refused. Other cardiologists refused, as well.
In 2008, Butler’s father contracted pneumonia.
Knowing that sending him to the hospital would only prolong his suffering with “life-saving” procedures, they avoided calling 911. He eventually became sick enough to be accepted into hospice care, where he finally died.