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.