How to Die Slowly in America
As America enters its second season of Obamacare enrollment, a poll released Monday confirms that for the first time, a majority of Americans want the Affordable Care Act fixed, rather than repealed, owing to its visible successes. Unquestionably, the law can be improved. Among the many harms caused by opponents of the Affordable Care Act, one of the worst can be traced back to the efforts of Sarah Palin, who launched the phrase “death panel” into the public consciousness in an August 2009 Facebook post:
The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care.
Palin was referring, however nonsensically, to a provision of the ACA that would have reimbursed doctors for discussing (discussing!) end-of-life care with Medicare patients and their families: things like palliative care, hospice care and when to suspend treatment in case of a mortal illness. Families don’t receive this kind of counseling as a matter of course, and they should, for so many reasons — we spend too much money trying to rescue bodies that are too far gone to save; it’s cruel to make families endure the end of hope and the end of life in the same moment; too many people’s last moments are tortured, not peaceful. But Palin’s lies — that is what they were — created such a firestorm that those provisions were withdrawn from the final law. So now, an area of medicine that remains woefully inadequate for many Americans will remain so, even in the face of an opportunity to develop and expand it.
My father died twenty years ago, of kidney and liver failure caused by chronic nephritis of unknown origin. He had been sick for decades, with years of dialysis, surgeries, complications, and many preliminary skirmishes with death. We spent many weeks hanging around the intensive care waiting room, where we saw families gather daily to endure every kind of grief and fear — and sometimes to fall sobbing with relief into one another’s arms, half-crazy with the happiness of an impossible recovery. When it all got to be too much we’d go downstairs to the fourth floor, the softly lit maternity ward, and admire the newborns in their rows of bassinets, and bask gratefully in the pleasure and hope all around them.
My father was only in his forties when he started getting sick, so it never occurred to either of my parents that he would in time become too sick for a kidney transplant, or that there would be so much surgery, so many complications, and so much pain. Crisis followed crisis; we had a few miraculous recoveries of our own. But all told, it was a slow, inexorable decline. And then, many years after we’d become inured to living so near my father’s death, the night came when my mother and I were unaccountably shocked to find that all the options had run out.
It was very late, a warm quiet spring night, and my father was in a coma. Dr. Warner was with us to help; there were forms to sign and machines to turn off. Even after all the machines were silenced, the intravenous medications and solutions withdrawn, my father breathed on: an entirely inhuman sound at the end, grating and raw. This surprised the nurses, how it took so long — perhaps twelve hours.
I had to go home in the meantime to look after the baby; when I returned, it was over. My father’s was the first corpse I ever touched. I’d never really believed until then that there was such a thing as a soul; that is, if you’d asked me I would have said yes, I think maybe yes. But it was not until I returned to the hospital — too late! as if it mattered — that I had the sense of his body as empty. (As I kissed his very slightly oily, freezing forehead it was stunning, the inertness of this cold, dry head, once so full and so hot, like a bull’s, charging headlong into the whole world.) His body like the shell of a hermit crab, nobody home; recently occupied, thrashing, bleeding, suffering, laughing, pleading, rasping — not only still now but abandoned, empty.
Bodies, they’re so weird! You’d never think so from watching television or movies but they go wrong all the time — stuff grows in and on them, they leak, they develop cracks and fissures, or simply stage a mysterious internal revolt. But on TV, people die all at once: They get shot and collapse very neatly; they hardly ever scream or bleed, and when they are sick they deteriorate just as neatly, with a little pallor and a little bruising around the eyelids. Then they tenderly die — after a little speech! The real thing isn’t remotely like this; not even Quentin Tarantino could make a realistic entertainment out of the crushing boredom and horror of real chronic illness, with its hemorrhages and ruptures, stench and suppuration. The person you knew disappears entirely, sometimes to reemerge from a miasma of pain and terror days or weeks later. Sometimes not.
Technology can’t always save us. As Atul Gawande wrote in 2010 we treat and treat, but, “ultimately, death comes, and no one is good at knowing when to stop.” In my father’s case, we had waited too long to stop; what his body endured was like something out of a Bosch painting. The poor guy. Broke even the hearts of battle-scarred doctors and intensive care nurses. Strangely, though, after he died, I realized how much I would miss being at the hospital every day, because it is the true IRL. I’d been learning something every minute, my head held fast, like that of Alex DeLarge, so I couldn’t look away. Ordinary “reality” had come to seem by contrast surreal, fairy-tale-like.
Politics have little place in hospital beds, but it’s clear that they will continue to distort the conversation we might be having over health care, a conversation about the practice of medicine, and about patients and their families; about real people, and what really happens to them in the hospital.
Photo by Dan Cox