From the bottom: The Patient in Room Twelve

I answered the call-light from my patient in hospital room twelve. As usual, she was perched on the side of the bed obediently waiting even though she was capable of ambulating herself. At ninety-one she was sharp and spry, but she had been told to call the nurse and so she was complying, going along to get along, not the kind to rock the boat. I accompanied her as she shuffled slowly but steadily to the bathroom. She was just another person without a real reason for being in the hospital. Just "waiting for placement" it's called.

She looked up at me from the toilet and smiled. I smiled back. After a few moments, I noticed she was sobbing.

"What's the matter?" I asked her, caught off guard by the display of emotion. So far, she'd always been chipper.

"I-I-I c-c-can't g-go th-th-th ere."

"Can't go where? To the Rehabilitation facility?"

"Y-y-yes. I-I've been there. I-I know what it's like."

I sighed as I watched her cry openly, stuttering as she spoke. I rubbed her warm, bony back and listened attentively. She continued like this for hours while I pecked around my brain for appropriate responses, trying to remember the rules of therapeutic communication: Don't offer solutions, just listen and empathize, encourage self-expression. But, as my weightless, hollow replies faded fast in the face of the hard truth she was speaking, I could eventually only nod my head in solidarity.

"You're right," I said. Then I found myself offering drugs.

Naturally, I've faced this intractable situation many times before. The elderly often are not honest with their families since they don't want to "be a burden". They go along to get along; they don't want to rock the boat. But they feel comfortable talking to me and I have nothing to offer except a warm hand, platitudes, and Ativan. If I were religious I could offer them god. But there is one thing I definitely can't tell them: that it will "be okay".

But when I think about the situation more deeply I find myself roiling. Why can't I? What is the reason for this iniquity we unleash on the elderly in the last stages of their lives? Most of us say we would rather be "sent out to sea on a block of ice" or drink a "suicide cocktail" than face the sterile inhumanity of the dreaded nursing home. We promise our families we "won't put them there". Yet we do, time after time, because, in the end, it's the only practical choice.

The industry representatives call these perceptions "myths" and insist that care these days is "patient-centered" and "holistic": the decorative phrases of the day, hung loosely on the ugly reality of the cost-effective status-quo. No doubt, there have been some modest cosmetic alterations, and for the rich and/or the lucky there may be some enlightened options, but anyone who has visited or worked in the average nursing home recently, it is obvious that society hasn't made meaningful changes.

This is a national crisis, a human rights issue. This is not just something that needs some minor adjustment. It requires full-fledged balls-to-the wall reform.

...And don't blame the overworked, underpaid staff. The most pressing problem is that nursing homes are still structured as warehouses where inconvenient people are sent to die. The last thing most of us desire is to feel useless and forgotten, yet this is how we treat the elderly and infirm members of our society. The alienating and isolating warehouse mentality that persists is apparent in the design and day to day operations of most of these facilities.

So how do we change it? I think that the analysis of this problem is best approached through examining how most nursing homes manage the private/public dichotomy of space. The preferred private/public ratio is unique to each individual, but most of us require a bit of both. These facilities get things backwards. They isolate when they should be integrating and integrate when they should be isolating.

I'll explain what I mean.

With respect to the private space, most nursing homes integrate. That is, they force people to share. Anyone who's ever lived with another person knows, this arrangement always puts stress on a person since compromises and sacrifices must be made, but for an infirm person, the assault on solitude is extreme, since they can never escape it, and the anxiety it induces persistent. This is why private rooms should be the rule rather than the exception. It wouldn't require much to accommodate this, since a private room doesn't have to be large or elaborate, just a room of one's own.

But, of course, this is an obvious and easy alteration of the current structure: the real innovation should be in the public sphere, where nursing homes isolate when they should be integrating. Oh, I know, the bingo games, meal-time, movie night, but these social activities are merely contrived distractions; they do little to stimulate the mind, or make a person feel "useful". The person remains separated. They are separated from nature, separated from the staff, separated from society.

Would it take much to change this? Here's one suggestion: operate the nursing home as a business where residents can participate in some shared goal commensurate with their interest and ability. Make the product tangible and relevant. Make the nursing home into a day-care center, a bakery, a soup kitchen, a shelter for stray animals, a garden, a book store, a bar. Who cares if it takes a person two hours to pick a tomato or shred some lettuce or shelve a book or read a story to a child, or feed a cat or make a Singapore Sling. That's not the point. And don't do it once a month, or once a week, or once a year, make it the center of nursing home life. Don't force it on people. If they'd rather sit around and do nothing, or that's all they can do, at least they'll be in a stimulating, sensory environment full of soft fur, the laughter of children or the baking of bread. This is real patient-centeredness. This is real holistic care.

The bottom line is this: as a nurse, I want to be able to look at the patient in room twelve in the eye and say "yes, it is going to be okay," and mean it. Patients, families and caregivers facing this situation shouldn't be tormented with guilt and anxiety when this inevitable problem rears its terrible head. We should, instead, feel assured that the place our loved-one is going is doing much more than maximizing safety: it is providing a truly desirable place to live.