Preface/disclaimer: I know this post may be slightly emotional. It is slightly provocative. I am in no way, shape, or form indicating that any mistakes were made, nor am I placing blame on anyone, I am just rising questions as to why I believe stories matter in healthcare.
Last night I was sitting on the couch looking at the Christmas tree and my fathers Christmas ornament was hanging from its branch staring back at me. I was thinking back on my father, our conversations, his stories, and his quick demise with pancreatic cancer.
Tears begin to swell in my eyes, roll down my cheeks, and blur my vision. I remember my father telling me to be nice to the physicians because they were good people and took great care of him.
Then the thought came to my mind.
My father who never sought care in the VA system received disability for being wounded in Vietnam. He received an additional benefit when he was diagnosed with diabetes a few years ago, related to his exposure to Agent Orange. There is potential that my mother may receive a small benefit due to diabetes being a precursor to pancreatic cancer which ultimately took my fathers life.
Wait a minute. I remember years ago when I used to work in this particular healthcare system that several of the PCP’s (PCP=primary care physician) used to make fun of the VA system and its perception of “poor” care.
My father went to his PCP on a routine basis for years. His PCP knew that my father was a veteran of the Vietnam War. He also knew that my father was exposed to Agent Orange. He was actually the one that diagnosed and caught my fathers onset of diabetes. Again, great care by his PCP.
Yet I stop to question in the mix of making sure my father had his yearly DRE and PSA, his colonoscopy every 10 years, why did he not consider doing or adding CA-19/9 to his workup?
How is it that a system such as the VA which may not be the most certified, accredited, top hospital in the US able to understand the story of my father? What happened to my fathers story in the dialogue between he, his PCP, and the pathways in place of the healthcare organization that he frequented? (Which is on Leapfrog’s top hospital list)
How did my fathers story get lost in the mix?
Granted, I know that it would not have changed the outcome for my father, but perhaps he may have been with us more than 6 weeks.
I know CA-19/9 is not the most accurate test, nor is it routinely ordered as a screening test. But why not? Are we so worried about litigation and adherence to protocol that we are paralyzed to think outside the bell curve?
If the story of my father, or another consumer, indicates that he or she may be at an increased risk for pancreatic cancer,or any other type of cancer, then why do we not consider changing the routine screening, workup and following of that patient?
Have we moved from personal care to cook booking healthcare?
Has the story of healthcare become some focused on cost out, process improvement, standardization, and production that we forget to stop and focus on the patient story in front of us?
Have physicians in primary care been forced to become data collectors, focused on inputting all of the necessary fields in the allotted time given for each appointment? Have administrators reduced PCP’s to clinicians and not providers? Has technology advanced so far that it has removed physicians from focusing on the one thing that matters the most, the patient sitting in the chair directly in front of us?
The days of physician knows best have passed not due to the lack of expertise, but the lack of stories.
No more house calls. No more Christmas cards. No more catching up on each others family. It’s head down, data collected, checking all the boxes, and getting to the next patient in the next room. It’s following a curve and missing the path less traveled.
Healthcare needs stories. Patients and consumers have plenty of stories wanting to be heard. Healthcare, please look into the whites of our eyes and understand our story. One at a time.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek
~CancerGeek#PtExp #PX #cancer #hcldr #hccosts #hcsm #stories #storytelling #lcsm #bcsm #hcmktg #mktg #storyteller #hcpt #consumerism #CX #UX