The recent arguments over tight glucose control remind me of things I experienced as a hospital nurse. Then, like now, doctors hurt patients by treating them as numbers, not people.
I used to work with patients with emphysema (a type of chronic obstructive pulmonary disease — COPD) and other lung diseases. We would frequently measure the oxygen in their blood with a “pulse oximeter.” The pulse ox reading would determine what treatments to do and how much oxygen to give. Ideal was to keep the oxygen level in the high 90s.
One night, an old man with COPD was in bed, receiving low-dose oxygen and watching TV. It was time for his pulse ox reading, and it came back at 89 (extremely low). Another nurse called the resident, who started excitedly barking orders. “Intubate him — put a breathing tube down his throat — crank up the oxygen, transfer him to the ICU.”
I had been around for a while by then. I said, “Look at him, doc. His color is good; he’s comfortable; his pulse rate is only 90. There is no way he could have a pulse ox of 89. Or even if he does, it’s not bothering him.”
The resident insisted on treating the oximeter reading instead of the patient, and the old man wound up intubated and in the ICU for two days. Luckily, he survived. It turned out the oximeter was damaged and needed replacing.
That’s what happens when you treat numbers. It’s similar to trying to force someone to reach an A1C goal set by some medical society, instead of working with that person to find appropriate goals for him. The American Diabetes Association says that the A1C target for most people should be less than 7%, and the American Association of Clinical Endocrinologists says 6.5% or less. Now many doctors are recommending higher A1C targets.
Where is the patient in all these guidelines? Don’t we have anything to say about it? Although some docs are good about working with us, most think they know best about our lives. I remember this from the hospital, too.
Back in the 1970’s, they had this machine for lung patients that provided a treatment called intermittent positive pressure breathing (IPPB). You would take a breath from the mouthpiece, and the machine would kick in a huge blast of air.
The idea was to blow open the breathing tubes so people could move more air. Most people hated it. It would literally knock them around the bed, as if they were being punched in the chest with every breath. It probably felt like that to them.
It was similar to the people using continuous positive airway pressure (CPAP) for sleep apnea, but it wasn’t gentle like CPAP. You couldn’t possibly sleep with it. You were more concerned about surviving it.
I remember the machines were green, and when the nurse would wheel one into the room, patients would groan and try to talk their way out of it. At times they would flat-out refuse. Sometimes, doctors ordered tranquilizers so patients would put up with the procedure.
We nurses would try to tell the docs how much patients hated the IPPB. Sometimes they’d order IPPB treatments and we wouldn’t give them if the patient complained too much.
There must have been a few studies that showed benefit for IPPB, although I can’t find any now. But the doctors were sure they were helping patients, even if the patients disagreed.
Finally, a couple of big studies came out indicating that the treatments didn’t help. All of a sudden, the orders stopped. But here’s the thing: There were a few patients who liked IPPB and really counted on it. But now they couldn’t get it! The patient would ask for it, and the docs would say, “That doesn’t work.” The machines gathered dust in the hospital basement.
The medical establishment then believed that one size fits all, so either everyone got the treatment or nobody did. They never considered that individual patients are different. Most doctors still don’t.
Some are starting to understand, though. A couple of my heroes are Victor Montori, MD, and Mercé Fernández-Balsells, MD. As I mentioned last year, their article in Annals of Internal Medicine concluded: “Clinicians should avoid glycemic control interventions that overwhelm the patients’ capacity to cope clinically, psychologically, and financially… Patients may opt to control their glycemia to a level that best balances the burden of medication, including the risk for hypoglycemia, with the benefit in reducing symptoms… Glycemic targets can be adjusted up or down according to the burden of treatment; side effects; and the patient’s context, values, and preferences.”
Of course, it takes time to work with patients and come up with an agreeable plan, and most doctors don’t have that kind of time. They could and should use nurses, medical assistants, diabetes educators, or patient mentors to help set the goals, but that’s probably a long way off. At this point, what can you do to help your doctor understand your needs, goals, and desires? In your experience, are you and your doctor on the same page as far as A1C and other goals?