This, from a reader and physician, is consistent with some of the ideas I expressed here, about the importance of patients telling their stories:
I love the N=1 blogging about sleep apnea!
I read your listserve EVERY day, (though sometimes not in great detail).
I am a surgeon, [health services] researcher, ethicist, the column is great.
I don’t care at all about sleep apnea, I love your stories about it because they are a perfect description of what it is to be a patient, the urgency of the problem — to you — and how clinicians do not get that at all, I love your desire to make sense of what is happening and your efforts to try to fix it with data and trial and error….any clinician reading it should have the good sense to understand that we rarely get this kind of insight into what it is like to be a patient and recognize how much we are missing…in our exam room, in the hospital, in the literature….
Someone recently told me that Tom Daschle said, “If you don’t show me data I won’t believe you, if you don’t tell me a story I won’t care.”
One of my recurring themes (mostly on Twitter) is that the health system treats patients like garbage. I do not believe for a second that clinicians want to be participants in that, but sometimes they are — trapped in the same crappy system that we, patients, are.
Perhaps one way to help make things a little better is to increase communication about what patients are going through when they’re not in front of the clinician. Sometimes we aren’t able to express our anxieties in the doctor’s office — they take more time to surface or we don’t think we can broach them. Sometimes the struggles we go through at home and with prescribed treatments never get back to those who are supposed to be caring for us. That’s a shame and all contributes to a poorer experience and worse care.
Likewise, perhaps patients more fully understanding what clinicians deal with but don’t say could be a helpful step. Some of my more mature reflexes in handling my own care have come from better understanding system pressures on clinicians. (One example: Whenever a clinician suggests a follow-up visit, I always ask why, what she is looking for, and whether I can assess the need for the visit on my own. Very frequently this avoids unnecessary care and my own frustration in wasting time and expense with a follow-up. Better! And it all comes from a more nuanced understanding about unstated limits of clinical knowledge and assumptions clinicians make about my ability for self-care, not to mention financial pressures to keep schedules full.)
Taking these steps need not be by purely anecdotal means. But as a way of sensitizing each other to some of the real issues that arise as we navigate the system, it’s perfectly fine. (There is absolutely room for more generalizable, rigorous study.) At least this physician and reader finds this valuable, and maybe it will help her practice and improve the experiences for other patients (?).
It’s nice to hear that what I write is valuable to others. Given I do this for free (and for myself), this is a welcome bonus.
PS: I have tried and failed to find that quote attributed to Tom Daschle. Maybe he never said it. But if he did, and you know where to find that documented, please let me know.