Two years ago we wrote “Let’s hear it for the ‘d-patients’” — doctors who become e-patients themselves. We said “D-patients prove that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservation movement.”
A new article in our Journal of Participatory Medicine provides a compelling example: A Physician’s Experience as a Cancer of the Neck Patient: The Importance of Patient Participation. The author, Itzhak Brook MD, makes our point:
I am telling my personal story in the hope that health care providers will realize the difficult challenges faced by a patient diagnosed with cancer and undergoing extensive surgeries. I am also discussing the importance of active participation of the patient and their family members in all phases of care.
JoPM co-editor Charlie Smith adds, in his introductory note: (emphasis added)
You may wonder why a physician’s account of his illness and the frustrations he experienced merit publication in this journal. But, if a doctor has this degree of anxiety, this much difficulty getting information about his care and this degree of struggle making good decisions, then patients can easily understand why they feel so overwhelmed and incapable, at times, of truly “participating” in their own care. What we are advocating for is difficult in the best of circumstances and requires all hands on deck for the task!
I – and many other patients – know exactly what Dr. Brook means when he says:
…both of these approaches [physicians who acted “half full” and “half empty”] deprived me of being truthfully and fully informed about my prognosis, which is essential for making logical choices concerning treatment. I preferred those who told me the truth about risks and my prognosis, even if it was not rosy. I always voiced my preference to the physicians so that they would be aware of my wishes and so we could, hopefully, develop a trusting relationship.
When his radiation oncologists failed for five days to get the machine fixed or send him somewhere else, he asserted himself and did get sent elsewhere. He writes, “This lack of initiative left me feeling that they were indifferent to my plight.” That too will sound familiar to some.
Then, when he reported side effects and needed to be cared for:
“I needed the doctors to be there for me but, instead, they left me feeling like I was pestering them with trivial issues and complaints. Everything was so new to me. I was concerned and worried about my symptoms and looked to them for advice on how to cope. I also needed reassurance that these were expected symptoms and that they would go away afterwards. Fortunately, I found receptive ears and helpful advice from the clinic nurse.”
In my speeches I often start by saying, “Patient is not a third person word. Your time will come.” What a great example this narrative is.
There’s much more in the full article. Please, patients and providers alike, read the whole thing and think about when your time will come.
I wonder if there has been much discussion of class issues as they regard empowered patients and increased patient-doctor interactions. I am reminded of Malcom Gladwell’s discussion of class and communicating with doctors in “Outliers” (I believe that was the book).
If it’s difficult for a trained physician to navigate these waters, what about everyone else who doesn’t have the benefit of knowing what all the words mean, who is completely intimidated by the doctor’s demeanor, and who expects — thanks to their station and training in life — to be told what to do, so they can do it — and hopefully survive?
To me — coming from rural Pennsylvania, with great-grandparents who farmed in Kansas, where the closest doctor could be a day’s wagon ride away, and who got in the habit of medical independence (or just making do) because they just didn’t have easy access to good medical help — I am keenly aware of the different behaviors and philosophies and approaches people take to medical care, thanks to external circumstances — especially economic and cultural ones.
I think behaviorally adapting to generations of poor medical access can be as much of an issue in modern healthcare delivery, as poor flow of information, inconsistent (or unavailable) patient records, and lack of access to caring doctors. Class and culture can also play huge roles, and I worry that the solution-crafters of the ePatient movement are coming from a position of urban, university-educated, upper-middle-class privilege, familiarity with all the right terminology, comfort levels with discussing issues with professionals as peers, and generally being in charge of their own lives… all to a degree which would be unthinkable to someone who works two relatively unskilled jobs, one of which is calling bingo at the local VFW on Thursday nights, because she has to pay her bills (that would be one of my rural relatives who has struggled terribly for decades with a chronic condition that was never properly diagnosed until a happy accident several years back).
What about the (many, many) people who fall outside the charmed circle of access and privilege? NOT, mind you, that I think anyone whose life is in danger and struggles to access competent, caring healthcare help, is charmed…
I’m just sayin’…
Hey Kay, good to see you again. We do talk here a lot about issues of access, the “digital divide,” etc.
I’m not an expert in it, but interestingly, at a meeting last month in Washington of a consumer consortium, the representative from a minorities advocacy group (sorry I don’t recall the name) said “We’re not worried about the digital divide anymore – our main problem today is awareness.”
Re who’s “sourcing” this movement – we’re certainly open to everyone’s contributions. The Society for Participatory Medicine only costs $30 to join, and as it says on the join page, anyone who needs it can request a scholarship. By all means bring ’em!