BY: PAMELA SCHAEFFER, Ph.D.
One of my favorite articles in this issue (though naturally I like them all) is Mark Crawford's overview of patient empowerment as an aspect of person-centered care. The impetus for the article was a session I attended at an annual conference of the Institute for Healthcare Improvement. Two men led the session.
One was a patient who had won, against all odds, a battle against a virulent form of cancer. The other was his primary care physician who had been willing to engage his well-informed patient as a full partner — and sometimes even let him take the lead. The two of them — patient Dave deBronkart and Daniel Z. Sands, MD, went on to found the Society of Participatory Medicine ("bringing together e-patients and health care professionals," www. participatorymedicine.org)
For me, reading Crawford's finished article brought back a lifetime of experiences with physicians, most of them pre-dating the terms (though surely not the concepts) "empowered patient" and "person-centered care."
I dialed back, for instance, to the late 1960s when an adventurous toddler of mine was sitting on a cushion of fallen leaves, contentedly exploring sticks and acorns in a patch of woods behind his grandmother's house in Chappaqua, N.Y. Although I had begun to sense that this was a child magnetically drawn to danger, and I was warily watching to be sure what was in his fingers stayed out of his mouth, who could have guessed his deceptively bucolic pastime was about to turn a nest of yellow jackets into an angry swarm? Who knew those things even lived in the ground? The stings were swelling fast when we arrived at the nearest doctor. (My memory is fuzzy. Was he a pediatrician? More likely a general practitioner. Was there no emergency room in town?)
The doctor's office, as I recall, was a comfortable, book-lined room in his home, and his unruffled response to my growing panic was to reach for a large black reference book and peruse the index. When satisfied with an entry he found, he reviewed it with me, his finger underlining the relevant text. Assured of the recommended dose of cortisone for a child of this size, the doctor administered same, and until the next mishap, my child was cured. But my confidence was not aroused.
I was visiting from St. Louis where doctors knew how to fix things; they didn't look them up. Or so it seemed to me in those blissfully naïve days of my relative youth.
Fast forward to Winter, 2011, when I took my 93-year-old mother, now living in St. Louis, to the emergency room after consulting with her internist on the phone. My mother's problem: She was agitated and hallucinating, a frightening scenario to confront for the first time. The internist had already ticked off a couple of suspects on the phone — electrolyte imbalance, urinary tract infection — and I had my own possible culprit in mind, a medication my mother had begun taking for post-shingles pain. I mentioned the medication to the ER doc, who of course was ordering up a gamut of tests. When he returned to report the test results (all negative), he surmised that the medication indeed might be the cause. "It can cause hallucinations," he said. "I Googled it."
Googled it? He'd Googled it? This was, I realized, a new century's rendition of the big black book. "We can't keep up with all the new medications," he said. "That's often the best place for us to find information when we need it."
I confessed that I'd Googled the medication too, but hadn't found hallucinations listed as a side effect. He passed on his first choice for a reliable Internet site: www.drugs.com.
In the four-decade interval between those two episodes, I'd learned a great deal. From a variety of life experiences, I had scooped up a lot of medical information (enough to make me dangerous, as they say), and a lot about the practice of medicine. I have learned much more about what doctors do and don't know, been deeply impressed by what they sometimes can make happen (miracles, it has seemed on more than one occasion) and been appalled at times by arrogance or carelessness.
I have also, maybe especially, learned to sing the praises of those docs who level the playing field by opening a book, or admitting they Google for information, or who acknowledge that, while they can propose some options, they often can't be sure what's best, because good medical practice is as much art as science, with a bit of luck and maybe magic tossed in.
The articles in this issue illustrate multiple dimensions of person-centered care — and even the theology that undergirds it. By all means, read that; read it all. But surely, where person-centered care is the goal, a respectful, trusting and open relationship among physicians, patients and their families is at the core.
Copyright © 2012 by the Catholic Health Association of the United States
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