Now that Mother Teresa has been discredited in some quarters, who remain as the consensus everyday saints of this world? Kindergarten teachers, soup kitchen volunteers, and nurses. Nurses take care of patients while doctors diagnose and prescribe. Nurses change your sheets, wipe your bum, listen to your complaints, and nurture you back to health. Doctors care about disease. Nurses care about you.
When I was first paralyzed from transverse myelitis and lying in the hospital, scared out of my wits, only the nurses seem to empathize with the trauma I was going through. One night nurse was so kind, gentle, and reassuring -- she thought taking care of patients like me was a calling from God – I dreamed of marrying her so that she could take care of me permanently. In one drug-induced moment, I actually proposed to her. She pointed out that I already had a beautiful, loving wife, straightened my lifeless legs, and left the room.
But not all nurses are angels, I’m sorry to say, and even the best-intentioned ones often get it wrong. According to a new study appearing in the journal of the American Association of Neuroscience Nurses, the all-knowing, all-caring nurse is a bit of a myth. Especially with patients with “an impairment-producing health condition,” nurses are often on the other side of a cultural gap that can leave those patients feeling angry, frustrated, or in some way diminished.
Many nurses, like many doctors and other institutional caregivers, are highly trained in the physical treatment of patients but as unschooled in the social and psychological treatment of patients as the average Jill or Joe. The behavior is usually unconscious. Nurses are not out to demean their charges any more than the guy who starts pushing your chair in the mall for no particular reason is out to patronize the user. He just thinks, wrongly, that disabled equals helpless and he’s there to help.
The aforementioned study focuses on a number of ways that nurses can drop the ball in dealing with permanently impaired patients. I’ll briefly hit on four of them:
• “Ignoring Or Minimalizing The Patient’s Knowledge.” Many nurses, like many doctors, don’t listen to a patient’s own assessment of things. They give you stool softeners without asking if you need a stool softener. They often ignore your own self-diagnosis, especially if you are older, figuring you’ve just read too many advice columns. Or they treat you like an inanimate object. One lady in the study, confronted by handlers who wouldn’t listen to how she should be moved, said she felt like “a pale shriveled corpse being tossed like trash from one place to another…”
• “Detached Interpersonal Interactions.” Both nurses and doctors are task-oriented and simply want to perform the task and go on. They often talk about you in front of you as if you weren’t there (waitresses do that, too). When it’s time to stick a needle in your arm and take blood, it doesn’t matter if you are asleep or puking in your soup. Often painful procedures will be done without being explained to the patient. Ever have a nurse flip you over in the middle of the night without saying a word? You start to feel like a piece of meat.
• “Placing A Negative Skew On Your Life Quality.” Nurses often project their own fears about impairment onto an impaired patient. In my own case, it would usually come in the form of a question, e.g.: “You don’t have a home attendant? How do you go to the bathroom?” Or: “You drive? That’s amazing.” Anything you might do besides being a patient sounds either heroic or foolhardy. They hold the same cultural bias as many others, namely that a disability equals a suffering-filled, attenuated existence.
• An Inherent Power Differential. This is the crux of the whole matter, I think. If you are laid up in the ER, paralyzed, with a 104 degree fever, you are definitely dependent on the people caring for you. That’s a situational power differential. If care-workers consider you helpless and powerless simply because you are impaired, that’s an assumed power differential, much different and much more potentially harmful to you, the patient. In the same way that doctors and nurses shouldn’t romanticize your “bravery” at driving on your own, you shouldn’t romanticize their inerrant power to tell you how to live or think about your impairment. You can respect their medical knowledge without worshiping them.
Many nurses have their set ways of doing things and will never become more than get-it-done functionaries. Others are simply harried. Maybe I’ve just been lucky, but, in my experience, most of the nurses I’ve encountered want to communicate and want to learn more about both you and your condition. In fact, if you speak up and insist on being listened to and question things you don’t understand, they might even learn a thing or two. And probably thank you for it.
(NOTE: Many thanks to Sam Maddox for the above research report.)
© 2013 Allen Rucker |
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The Best Seat in the House:
How I Woke Up One Tuesday and Was Paralyzed for Life