It’s deathly quiet in the waiting room as I sit, fully clothed, waiting for my physician’s assistant to appear.
I’m here for my monthly follow-up visit at the pain clinic. Today I’ll be meeting with my physician for a monthly checkup. We’ll be reviewing prescriptions, and talking about procedures and pain management techniques that he’s adapted for people with energetic lifestyles who aren’t ready to let the pain control them. This is a useful meeting that I highly value, so I try to do my part and come in armed with data and questions to ask him.
Before I can pose my questions, I must first pass through the gates of the EMR. My record must be updated and the checklist followed, regardless of my obvious vexation.
The assistant enters the room, plants in front of the computer, and asks brightly “How is your pain today on a scale of 1 to 10?”. I groan. We’ve had this conversation before, and like fighting spouses we’ll play our parts knowing full well what the outcome will be before we even begin.
“Do you mean right now?”, I probe, “because it’s the middle of the day and the majority of pain with spinal arthritis is in the mornings and evenings”.
She knows a lot about arthritis from dealing with her patients and has doubtless heard this question before.
Her reply is reflexive, like a tennis player who has seen the wisp of a ball in their peripheral vision, it’s pure muscle memory. “I just need to get a number for the EMR. If 10 is the worst pain you’ve ever had and one is nothing, how would you describe your current pain?”
In my mind I understand the need to feed the beast and her desire to move on to other, more compliant patients, but I also understand that the data entered into the machine will persist and become part of my medical history. Nobody seems to care about my aggressive invasive pain in the mornings or evenings, and I catch myself wondering if I would be better off having a consistent level of pain all the time so that it would be easier for medical staff to treat me.
I’ve spent some time researching these pain scores as they have a long and florid past. Instruments known as dolorimeters have been used to apply steady pressure, heat, or electrical stimulation to an anatomical location, while investigators record the patient’s view of the degree of pain inflicted. It all sounds terribly innocuous until you come across experiments where researchers applied heat to women in labor, sometimes resulting in second degree burns.
Current pain research recognizes that this attempt to arrive at an objective pain scale is a chimera. Pain is, as my specialist likes to remind me, whatever I experience and reducing it to numbers is only useful in so much that it provides a comparative between my visits that he can use to determine if the treatment is working. Both he, and I, see no value in collecting this data but both the state and the insurance company require justification for the medications to control my pain, so our views are irrelevant.
“6”, I say, having literally no idea what that means. She transcribes it and smiles at me. We move to the next question.
“What percentage of the time is your pain controlled on the current medications?”
Now there’s a bad question to ask someone who trained as a mathematician. I immediately start rating my pain through the day, averaging it out, and then averaging out the month based on bad and good days. I realize this is idiotic, as I am propagating error at every step so that the result must be miles away from any “correct” value.
Still, the question remains.
That’s when I remember that I put my pain score into Patients Like Me’s website on a daily basis. Ah, ha! I have a valid history taken at the same time everyday that may provide some insight. I pull out my iPhone, open the app, and look at the graph over the past 30 days. The scores range from 1 to 5 so obviously I cannot be as precise as my doctor would like, but it appears that my pain is fairly well-controlled and I say, “about one in three days are not so great”.
She looks at me blankly, unsure of how to translate into a number between one and 100. Am I saying that 66% of the time my pain is controlled? Not really. I’m saying that for one day in three the pain becomes problematic, but there are also the mornings and evenings on the good days to consider.
You would think that in an era of patient collected data coming up with a way to track chronic pain scores that actually made sense wouldn’t be so hard. Isn’t it just a simple is prompting the patient to enter the score 4 times a day on their iPhone? We could even enter that into the EMR directly, right?
Yet this completely misses the point.
The numbers we are attempting to measure are not precise measures, and our state of mind at the time of questioning may further impact the results. The “Universal Pain Assessment Tool” recognizes moderate pain between scores of 3 and 7 with a differentiation of “interferes with tasks” and “interferes with concentration”. I challenge anyone to produce an accurate score using these definitions. Even smily faces do little to help me make my mind up, though they do help my autistic child to some degree.
Will my view of pain be the same at 60 as it is today at 45? I doubt it. My perceptions of pain has changed over the years and I think a comparison of these scores in the EMR twenty years from now will probably be of very little use. When you get down to it, this is transient data with low accuracy that probably shouldn’t be stored for the long-term.
To conclude, the methodologies for assessing pain required in my physician’s EMR setup don’t really help me, the patient, and probably don’t do much for my physician either. Yet, they will persist throughout my lifetime in the system and I have no way to get rid of them.