The Story Of Healthcare Reduced To A Bell Curve?

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


#PtExp #PX #cancer #hcldr #hccosts #hcsm #stories #storytelling #lcsm #bcsm #hcmktg #mktg #storyteller #hcpt #consumerism #CX #UX

4 responses to “The Story Of Healthcare Reduced To A Bell Curve?

  1. I have had experiences like that. I had a primary care who was caring, spent as much time as necessary with me, and actually listened to what I had to say along with suggestions I had for my own care. But that was early 90s, and he left practice to go into research. Since then, it’s been a succession of PCPs and an assembly-line visit most of the time and nobody listened to me; who knows my body better than I do? I could pretty much tell them what was wrong or what needed to be done, but they didn’t listen. Until I met my oncologist. He and his team of Nurse Practitioners spend as much time with each patient as needed, which means I am never seen on time. But I know the reason why and don’t mind waiting. I’m sorry your dad’s experience with VA was the way it was.

    • Ruth

      Thank you for the comments and your understanding. I think it is important for healthcare to stop and consider for a moment that this is all basic human interaction. The more we advance it seems as if it is the more we lose personal connections. At the end of it all, it is a face to face dialogue that needs to be handled based on that specific individual.

      I remember being in my own clinical during training, and the chairman walking into the room. Everyone was in a rush. He stopped everyone and said this, “Why are you rushing? We need to focus on this patient. The other patient will will want our attention and focus as well. All we can do is care for one patient at a time.”

      That has stuck with me ever since. I know physicians and all of us in healthcare have a difficult time, but at the end of the day, all we can do is focus on one patient at a time.

      One story. One person.

      Happy Holidays.


  2. One more comment; I was a nurse for ~20 years and often was in trouble for spending time with patients [GASP] instead of paperwork. Part of the reason I’m not a nurse any more.

  3. Perhaps the VA is the best healthcare system in the US because it is the only one that is fundamentally run for health rather than profit. That has a major cultural effect on the staff and makes them more ‘human’. It is also connected with clinical skills rather such as listening than sending patients off for as many tests as possible for a profit.
    Profiting hospitals have created and promoted the idea that technology equals certainty and underplays the direct and indirect risks of its use.
    In the case of Ca pancreas screening, I think that the problem is what can be done with a positive result considering some will be false positives. Scans are not particularly good here and if you get a negative scan, what next? You would need to know where the cancer is to biopsy it so you would now have to remove the whole pancreas to find out if they had cancer or not, leaving the false positives with diabetes and no digestive enzymes. Few would accept chemotherapy or radiotherapy without a certain diagnosis and anyway, Ca pancreas is not very responsive.
    So decisions on screening tests are extremely complex and go beyond the accuracy of the test itself. They also have to take into account the consequences and outcomes of further treatment for positives, especially false positives.
    However and regardless of this, you will probably see Ca19/9 added to the list of screening tests of hospitals that are run for profit in the near future.

    As for Bell Curve Medicine, I am a great supporter but what you are describing is not Bell Curve Medicine but what administrators do to it. The original says that only average people are average and that some need more time and others less. They are individuals with individual needs.
    So then somebody puts a single block over the middle part of the bell, say at 1SD which covers 67% and says that that is what all patients are getting. The admin turns round and says ‘See, you coped’ and remeasures the new bell curve where the most needy were denied time so the curve is shifted to the left: patients receive less care and services. Now they have a new norm and put a new block over the ‘average’. And they just keep doing this year after year to drive down the quality of care.
    And the better that the doctors are at complying with the targets, the quicker the administrators can drive down the level of care.

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