Sometimes we get help from unexpected sources. Two of my patients showed me this, during their recent hospitalizations.
The first is a woman I’ll call Hazel. I’ve taken care of her for twenty years, and she’s probably had emphysema for ten of those, but had not yet ever been hospitalized for it. She has continued to smoke, and I suspect that she has not gone out of the house much for at least the last year, in response to the breathlessness she has been denying. She hired a part-time caregiver for her autistic grandson (for whom she is the guardian) “to do all the fun running around stuff that I’m too old for.” (She is my age: 51.) But finally, she couldn’t breathe even while sitting still, and came to the ER with O2 sats in the mid-80s.
Being hospitalized was a terrifying experience for her. Not only because it’s terrifying for everyone, but because she was completely alone. Her grown children are not around, and her grandson decompensated so spectacularly with her sudden departure, that her husband was stuck at home with him.
I visited her twice. The first time, she was a hyperkinetic mess, and it wasn’t helping her breathing. The steroids made her talkative and weepy and a little paranoid, and she seemed to be using up the air around her faster than we could provide more. We talked a little about how she doesn’t take care of herself but focuses on others, and that she could die from this self-neglect. I might not have been breathless myself, but my words were hot air for all they seemed to sink in.
The second time, a few days later, she was a different woman, and not only because of all the medicines and breathing treatments. She told me how she’d been kept up at night by the constant crying of the woman in the next room. Night after night, she heard what sounded like plaintive appeals, and she ached to go comfort her. She actually asked the nurses if she could go hold the woman’s hand, since she wasn’t doing anything else and didn’t mind.
The nurses explained that hygiene and HIPAA both precluded this. So Hazel turned to another source instead: the janitor. Hazel and the janitor (I’ll call her Rosario) had already gotten to know each other, trading names and ages of children and grandchildren, worst and best stories, favorite prayers. Hazel told Rosario how bad she felt, listening to her neighbor cry and not being able to do anything.
“You worry about yourself!” Rosario chided her. “She has her daughter by her bed, day and night, holding her hand, you just don’t know that because you only hear her crying. You have you to take care of, and your grandson to go home to!”
“She’s right,” Hazel said to me simply, at that second visit. And we were able to have a first conversation about what that self-care would look like.
The second patient (I’ll call Wayne) is a driven IT executive in his mid-40s, who has also been disregarding my advice for several years. He has hypertension, hyperlipidemia, diabetes, gout and obesity, and only ever sees me when the gout flares. Until suddenly he had trouble seeing and visited his eye doctor who measured his blood pressure at 220/120 and saw retinal hemorrhage. He scared the patient just enough for him to come straight to my office, but when I explained he now needed to go straight to the hospital, he balked.
“Can I go tomorrow?” he asked. “I have a big meeting this afternoon.”
In the end, I really thought he might not go to the ER as directed, but he did. He spent 24 hours there, a day that has done more to change his attitude than anything I’ve said in ten years.
At our last clinic visit, I said, “This medicine is working — will you keep taking it?”
His prior habit had been to accept the medication, then stop it when it ran out.
“Doc,” he said, looking more directly at me than he had ever done before, “I am now doing everything you tell me, and I’ll tell you why.”
He went on to tell me how scary it was to be in the hospital with “the doctors working around the clock to get my blood pressure down.” What really drove the message home, though, was his roommate, a man immobilized by a stroke. Forced into unaccustomed bedrest, Wayne spent hours looking at this man, and talking with the man’s wife.
“They were feeding him Enfamil — well, I guess not Enfamil, but something like that — through his nose. I asked her what was wrong with him, and she said he’d had a stroke. I had no idea that’s what a stroke was! I said ‘I was supposed to have a stroke.’ She said ‘Don’t have a stroke.’ I had no idea.”
What impressed me most about these stories was not so much that my patients have been “scared straight” for the time being, but that it wasn’t other doctors — or nurses — who drove the message home. Instead, it was another human being, who was open enough to listen and share, at exactly the right moment.
Antoinette Rose is an internal medicine physician.
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