Summary: Reflecting on my own experiences, I wonder if my modus operandi would be considered truly participatory. On the one hand, I fit the description of an activated, empowered and engaged participatory patient. I’ve made lifestyle changes to support healthy and joyous living, and feel that I manage my health issues (asthma, kidney stones, GI issues, and cancer) well. But, on the other hand, I am often uncomfortable or unwilling to share my actions, questions and concerns with my health care providers.
Keywords: Participatory medicine, patient-provider communication.
Citation: Kastner K. What “participatory” means to me. J Participat Med. 2010 Dec 29; 2:e23.
Published: December 29, 2010.
Competing Interests: The author has declared that no competing interests exist.
Reflecting on my own experiences, I wonder if my modus operandi would be considered truly participatory. On the one hand, I fit the description of an activated, empowered and engaged participatory patient. I’ve made lifestyle changes to support healthy and joyous living, and feel that I manage my health issues (asthma, kidney stones, GI issues, and cancer) well.
With each medical issue I face, I ask, listen, research, and ponder. Often, I’ll run a dilemma past family and close friends because they know me better than any given doctor, and because they often have had experiences that I can learn from. For example, a close friend, experienced in treatment with various steroid medications, suggested that I ask about long-term side effects of my steroid inhaler asthma medication, which I did at my next appointment. I kicked myself later for not thinking of doing this sooner, but realized that discussion of my medication with her was simply another form of “participatory medicine.”
Pitfalls of Patient-Provider Communication
On the other hand, what I often don’t do is share my decision making process, the conclusion it leads me to, or the actions taken with health care professionals. The reason is that, if my path does not follow strict evidence-based guidelines, I don’t want to get “tut-tutted” or left feeling guilty for not following the letter of the law. I’d rather spend my time and energy furthering my recovery than defending my decisions.
Allow me to cite another example: I am advised to drink eight glasses of water before my ultrasound. However, that much water always causes my bladder to “seize”. So, when I’m asked if I drank the requisite amount, I just say, “yes I’ve drunk the eight glasses” (I’ve had this done enough that I know, in actuality, that an accurate study can be made with considerably less ingested water than this). Ideally, I’d like it to be noted in all my charts that my bladder “seizes” when I drink too much water, and that I should be advised to ingest no more than three or four glasses. Since I realize that my providers aren’t commonly getting access to chart notes, I (often belatedly) realize that I need to start taking responsibility for requesting copies of notes to share with my primary care provider and other health care professionals. And so this is another way for me to “participate.”
Another example comes from the management of side effects of my kidney stone prevention treatment (potassium citrate), which causes me to have stomach soreness at the recommended dosage. Consequently, I cut back the dose to a level that I can tolerate. When I first went in to have my blood and urine checked, it was evident that I hadn’t taken my medication as prescribed. I’m happy to say that my urologist agreed, while feeling obligated to state that the medication should not actually cause the stomach upset, to give me the option to try my own approach. I only wish he’d curbed the “tut tut” that came with along with the permission! In this case I “participated” by adjusting the medication to a level that I could tolerate, receiving the doctor’s blessing later (even if it was slightly begrudging).
My participation has given me the confidence that, whether or not scientific evidence exists, my own experience is still valid. However, I neither have the energy nor the patience to try to get my health care professionals on board with my notions about participatory medicine. For me, a key aspect of being a participatory patient is to know and trust myself. I believe that health care professionals who support the participatory movement should be as committed to their patients’ individuality as they are to the scientific evidence. But this in no way suggests that I am dismissive of evidence-based medicine. They just need to learn how to balance the two in their practices.
The doctor-patient relationship is certainly important, but in between doctor’s visits our worries, dilemmas, and struggles to make the right choices are what we “participate” in every day. We human beings are complex on so many levels–and, especially, with our health and its many uncertainties. The participatory movement needs to recognize, acknowledge and support these issues. When my individual needs and choices are acknowledged, supported, or even encouraged by the health care enterprise, I tend to feel much safer sharing my “participatory process” with them.
Copyright: © 2010 Kathy Kastner. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.