1. Behuniak, Susan M. PhD


Dying patients should be given the choice, whenever possible, of spending their last hours in a private room.


Article Content

I am at a nursing home, keeping vigil at the bedside of a patient I'll call Maggie. In hospice terminology, Maggie is "actively dying," but she can still open her eyes when I speak to her and answer my questions with a nod of her head. As a hospice volunteer, my role is to keep her company during her last hours. I'll offer words of support and a soothing touch, watch for signs of pain, and let her know that she isn't alone. But the real work is hers.


Soon her dying proceeds in earnest, and my death watch begins. But intruding into these solemn moments are sounds that make Maggie moan and cause her eyes to flicker: the voice of a man, just a few feet away, loudly discussing with Maggie's hard-of-hearing roommate the color of her phlegm; women's rippling laughter, as nurses' aides call to each other up and down the hallway; an elderly woman bleating from a nearby room, "Nurse!!-Nurse!!-Nurse!!"; and rising above it all, a whistled tune I recognize as the theme of the Andy Griffith Show, coming from a TV across the hall.

Figure. Susan M. Beh... - Click to enlarge in new windowFigure. Susan M. Behuniak

How is a person supposed to die amid all this commotion?


I know: people die every day under all kinds of circumstances. But this nursing home floor is a unit for the critically ill. Shouldn't it be more conducive to healing, resting, and yes, even to dying?


Maggie resides in a "semiprivate" room-a euphemism for a room occupied by two patients. But these rooms are not half private, nearly private, partly private, or even somewhat private. They offer no privacy at all, only an illusion of it, as thin as the curtain pulled between the two beds.


Sit on one side of this curtain and experience the absurdity of the semiprivate room. You hear everything that happens on the other side, whether you want to or not: moans and sobs, vomiting and flatulence, gasps and groans, prayers and curses. You hear family disputes and tearful goodbyes. And you hear the most intimate details of the other person's illness-pressure ulcers, bowel movements, terminal diagnoses-even funeral plans. Sometimes, sensitive visitors whisper to the patient; occasionally, they peek around the curtain to see who might be listening. But most visitors-even most physicians-buy into the sleight of hand of the curtained wall and talk as if the room had been divided into two soundproof chambers. And amid the sounds coming through the door that remains open no matter what, you can smell what room sanitizers cannot cover: urine, excrement, vomit, open wounds, fear-and death approaching.


I toured a hospice in Russia several years ago where actively dying patients were moved from wards to a private "dying room" (a term staff members used only among themselves). Some of my American companions wondered whether this move upset the patients because it signaled that their time was up. No, the Russian clinicians told us, people go gladly, because the room is a refuge, a place of peace and compassionate care away from the eyes and ears of others. My companions persisted: doesn't such a designated room stigmatize? Doesn't it segregate the living from the dying? Doesn't it hide dying and make it a mystery? No, our Russian hosts firmly replied, the room allows the dying their dignity. Then, curious about our questions, they asked us: What do Americans think patients gain when they're required to die in the presence of strangers? As we conferred with one another, the translator tried again: How does the patient profit? I found the question, thus rephrased, unanswerable.


As I sit this evening with Maggie, I wish that she'd been given the choice to die in a quiet, private room, a place where dying-a transition as profound as birth and as deserving of protection-was honored.