Though I’m not unhappy with the Stanford Medx xMOOC on Patient Engagement it does seem ironic that the course seems so unresponsive and instructivist. That’s exactly how I experience the medical system and really, I wish it didn’t trigger negatives in me but there it is–a system unable to see its own faults against my mistrust.
The discussion area is essentially a series of one-shot comments without any of them sprouting out into real discussions. Also comments don’t appear to “count” or can’t be found without extensive searching and I’m thinking that challenging or deemed off-topic comments are edited out. More obviously of course is I’ve had so much shit from los medicos I’m blinded by bias, seeing only the bad and maybe being paranoid. Probably and so what?
Even though ANES205 Patient Engagement irritates me in a lot of ways, I am learning strategies on how to deal with my own difficulties. An example is in my comment below (that disappeared from the discussion area) on the irrelevance of specialists as a resource that is unreachable–they see you, you don’t even ask to see them. Boy it’s going save a lot grief cutting them out of my reality. These are people so exalted in the system that their directives are not even meant for implementation–only to inspire awe and to amaze the foolish into thinking they give a rats-ass. They clearly have a function but no obligation to patients.
The other realization I’ve had is the medical system is so without imagination that being a patient at a distance erases you from their minds. These are tactile people, slaves to their sensing you in person. On the phone, printed out on a chart, or online you aren’t there. Adrift and vaporous you must enter their cloud chamber to materialize before them. Out of sight, out of mind.
To be fair, as a problem I’m not much fun. My heart leaks at the incision where my second implanted aortic valve rests. As a result, my chemo mix needs to be altered (which hasn’t happened delaying my further chemo by making me too sick and weak to continue). Weaker chemo will stop destroying the ability to slow the leakage by making platelets to plug holes in the incision. But the chemo also makes me dizzy and clumsy by lowering my blood pressure causing me to have to stop my BP medications which also help reduce heart pain….
In the midst of this I have not been able to talk to anyone at the doctor level or higher since before chemo started six weeks ago. You cannot call the specialists though I’m told they do communicate with my patient navigator who is silent and my own doctor only knows what I report to her.
My Medx comment on someone’s comment:
“…really like your global outlook on a patient’s “world.” My experience is actors in my medical practitioner world fall in and out of use. Specialists are normally the first to go. Existing behind departmental walls and protected by receptionist / assistant bouncers my sense it they treat by permission only and are best un-relied on for your own survival. Next level are “statuses” you are given to assure you that care is consistent and even available on demand. These assurances are simply empty products of faceless institutions. No one has time to monitor your care outside your actual presence in their face.
My sense is all institutions exist for their own survival and rationalize down to efficient processing only. Patient engagement is seen as an interruption in the flow of “care” so will be noticed. It’s hard to be a patient with so many actors trying to shape you into a mold that fits their system.”