Rose‘s skin seems to be transforming into implausibly thin, mottled parchment. She was never a big woman, but now that dry, once-soft outer shell lies draped over her slowly-wasting bones. Her memory is failing. Her hair is reduced to white wisps that barely cover her scalp. She can’t walk, and can’t stand up without the help of two people — often family members, often members of the nursing home staff. Every transfer from her bed to her wheelchair, and back again, is fraught with the possibility of another fall and more broken bones. Conversing is difficult for Rose and her visitors, because her mind is fuzzy and her hearing half-shot. She sleeps 22 to 23 hours a day. On and off, she’s in pain.
She’s my wonderful mother-in-law, and she’s dying.
Not even a dozen years ago, she accompanied my wife and me and our three-year-old daughter on a trip to China, where we adopted our second girl (Rose helped pay for the adoption, and she was our rock on that difficult trip). A couple of years before that, I remember playing tennis with Rose on the hard courts of her Virginia hometown. She was already past 70 then. Still feisty. Still lovely in her own way.
Time took that away from her.
Now she seems halfway gone mentally, though her husk of a body lingers. Her husband, Dan, my father-in-law, is scared at the thought of losing her, and is trying to keep her alive. Rose is too weak, and too meek, to protest, although she has said in so many words that she’s ready to die. When she says she doesn’t want food, Dan tries to coax her to eat. Sometimes, when she expresses a desire to sleep, he does what he can to keep her awake, hoping she’ll watch the game with him, like old times.
Their five children are at peace with letting Rose die and have quietly planned her funeral, but no one quite dares tell the family’s patriarch how to proceed. Maybe no one truly knows what’s best. Maybe it isn’t their place. Who gets to decide these things? Shouldn’t Rose?
It may not matter that my in-laws are fundamentalist Christians; I imagine these dynamics sometimes play out in secular families, too. In any case, Rose and Dan see life as a sacred gift from God. But it’s clear that Rose’s current life is a burden to her more than a gift. And for once, I find myself quietly cursing science and medical advances — or at least, I bristle at how thoughtlessly we apply them. We use them to prolong the exits of millions of people every year, keeping them alive up to and past the point of indignity. A generation or two ago, Rose might have expired with quality of life more or less intact — sooner, but arguably better.Her long decline, surrounded by beeping, whirring technology that monitors her and beeps rhythmically and always wants access to her half-collapsed veins, is not something I’d want for myself. I reject the all-too-common ending described in a gut-wrenching recent article by Dr. Louis M. Profeta, an emergency physician in Indiana:
[We] can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip. You see, now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in cage of bed rails and soft restraints meant to “keep her safe.”
She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew. She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up exposing the underlying bone, which now becomes ripe for infection.
Almost half of the elderly population in the U.S. dies in nursing homes or hospitals. When they do, Profeta says,
… they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways. We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heartbeat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “What in the hell were you thinking?”
Me, I keep coming back to this. After Rose dies, people will say they hope she’ll rest in peace. Shouldn’t more of us have considered giving her peace sooner, when it still mattered, before she passed away?
(Image via Shutterstock. The names in this story were changed for the sake of privacy.)