The Element of Surprise
Every day so full of surprises, occasions for wonder and wondering. Every day traveling through life. Some days feeling like I’m riding a skateboard, on a brick paved steep hill, sometimes going down and others going up. Surprise surprise. So how surprised was I when got a call, and notice of news that could be a harbinger of a life-limiting diagnosis? How do we measure surprise? On a scale of 1 – 10? And then again, there could be any number of things to be surprised at in any given moment. I was surprised by the alarm and urgency in the tone of the LPN’s voice insisting that I return to my physician’s office for additional diagnostic blood work and an imaging exam, ASAP. It was not a shocked kind of surprise but, rather, an anticipatory surprise of the ‘wow-it’s-a-new-adventure-coming’ kind of surprise. It was, additionally, a kind of ‘I-don’t-think-so’ surprise.
Spoiler Alert! It was no death knell, but it did require three months of negotiations, patience, compromise, power plays, and a Big Talk with my physician to convince her that Death was not at my door. How’s that for a pickle?
In retrospect, these three months spotlight how fickle, fragile, and fraught with obstacles is the road to understanding and managing our own health and/or the health care of another for whom we are responsible. It’s a tiny micro-view that begs one to imagine circumstances of a much more complex condition. The culprit precipitator of this event was one lab value (out of 30) that was slightly, or as my physician later said, “minimally”, out of range. Unbeknownst to my M.D., blood had been drawn by a different lab, for a different reason, on the very next day. The results are thus:
My M.D.’s lab: “53” range = 15 – 46
Other lab: “26” range = 0 – 33 This is just the beginning. Having worked with many physicians I’ve wondered about how well they got along on the playground, or even if they played there? My experience leads me to believe that, as a group, they hate to lose and don’t easily take “No” for an answer. Yet there are good ones within this group who are very appreciative of a R.N. who, when caring for one of their patients, gives them a heads-up that their patient is going down. This is the kind of physician I call my PCP, Primary Care Provider. We worked together in the hospital and have had a mutually beneficial professional relationship for eight years. And now this.
The Emergence of A Conflict
But, then again, this was the first time I’d really said “No”. I didn’t even say ‘No”, at first. I said that I was other ways busy and that I would get back to her in about a month, and went about my business.
In the meantime, the insurance company, for whom the second blood was drawn, required an Attending Physician Statement and a stress test for me. The power dynamic is now in place. My PCP wants me to have tests done for her, and I want the APS and stress test for me and, I want them done before I have additional diagnostics. This is an Insurance Company I’m dealing with and I want something from them. The lines are drawn and the lonely LPN is tasked with calling me again. Struck speechless with my seeming stubbornness, he leaves to consult with the M.D. who promptly grabs the phone to speak to me, personally. Well I was honored and I said so. It’s been two months after my retirement since I’ve gotten a call from a physician to chat. Well, this was a quite Loud and Passionate chat to inform me that I could have the Big ‘C’ and that it’s best to “catch these things early”. With Jedi inspired calm, the conflicting lab results were presented, along with a graph of the last five years of blood tests, including the value of “68” (for the test in question) at the time I was diagnosed with Lyme Disease. My chosen PCP slammed the phone down. I called back to make an appointment for the additional labs (no imaging), the stress test for the same day, and for the following week, a 30-minute “Consultation” with ‘you-know-who’. This was going to be The Big Talk.
The additional labs were drawn, the PCP refused to OK the stress test “before she saw me”, and I have no idea what the status of the Attending Physician Statement was, or is. The process was terminated. The lab results all came back “Normal” and I was armed and ready for The Big Talk.
In preparation, I researched* the lab test and results in question so as to better understand her urgency. My assessment, of what she was saying could be going on, was confirmed during the passionate phone call and, if that was the situation, and if I was one of fewer than 3% in whom the condition evolves into the Big ‘C’, then there was no cure anyway. Many treatments and experiments that could be administered but that wasn’t where I was going.
- It is so very important to understand your health status as much as you can, and to ask questions. We are also often asked to make an immediate decision when waiting a bit has no significant impact on the result. Speak up.
- Notice the variation in lab values from one day to the next. Know the body you’re walking around in better than anyone else.
- Consider the relationship you have with your physician(s). It’s important to work with professionals we trust and feel respected by.
- Practice your response to the possible news of a life-limiting, or potentially life-limiting diagnosis. Life, itself, is terminal.
The Rest of The Story
The Big Talk went OK. I’m disappointed that the issues discussed required a separate appointment with another $30 co-pay. Not because of the $30.00 but because we should be getting to know each other’s values and expectations during every appointment, if not sooner. It’s for the same reason that I oppose Insurance Companies, Medicare, Medicaid paying M.D.’s for having “end-of-life” discussions. These should be on-going. Mindful Dying starts while we’re living.
It was made gently, but firmly clear, that there would likely come a time when I would not take my physician’s advice. In the same manner, I heard that I was free to find another physician if she could no longer meet my needs. I’m glad this was said.
The most disturbing thing about this entire encounter is how much presumed power is expected by the providers of our health care services. And they have a lot of power. They are the gateways to care. I was dismayed by the power that was exercised over me, by my physician, in her own interests – or at least without consulting me first. The APS was delayed. The stress test was not scheduled as requested. And I agreed to having the additional labs drawn, in spite of the evidence and my interpretation that it was un-necessary. After all, she does have the authority to continue my maintenance meds, or not.
We parted with the weight of knowing we’d been in company with a worthy warrior. As I turned to leave, I heard “still ‘no’ on the imaging exam?”
I have to draw the line someplace.
* Reference: Manual of Diagnostic and Laboratory Tests, and a Pathophysiology Textbook were what I consulted. There are many, many options.
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