The Scientist, The Doctor, and the Patient…
This past week I’ve been hyper-focused on updating our long-term disc data and finally met my match yesterday. These are low back stem cell patients who had bulging low back discs treated with precise stem cell injections. It’s always an arduous task to pull all of this together, especially when some of the patients were treated in 2008 and 2009. Yesterday I called a woman from out of state. She was treated in 2009 by having her own specially cultured stem cells grown to larger numbers for a number of weeks and then re-injected into her low back disc using highly specialized imaging guidance. We could only inject one disc (L5-S1) and had plans at some point to inject her other L4-L5 disc. For our treatment registry and an IRB approved study, I needed a Likert number now and later an updated functional questionnaire. For those of you who don’t know, a Likert percentage of improvement is a great little number. This is what patients and doctors often use to communicate about the success (or lack thereof) of a procedure. For example, the patient might say that they feel 50% better. That little percentage improvement number encompasses so much: pain, function, and most importantly, value to the patient. It also transmits that information in a much more elegant way than say a standardized function questionnaire that might take 15 minutes to fill out.
So my question to this woman was: “On a scale from -90% worse to 100% better, how would you report your success or lack of success with the low back disc procedure?” She quickly replied that the horrible pain was 100% better, but that she still had pain from the L4-L5 disc that she needed to get treated. This was a problem for the scientist in me, as the 100% number she gave me didn’t really encompass the whole picture of her improvement, because she admitted she still had some pain. So I rephrased, ” Well if you had to look at the whole picture of your pain, what’s the number? I realize that the horrible pain is gone, but you’re telling me that you still have some pain from your disc we didn’t treat.” She replied that the pain that kept her from walking was a 100% gone, which was a very big deal for her. In addition, Dr. Schultz had hit that pain “dead on” when he injected her stem cells into that lowest disc. I thought to myself, Hmmmmm, this isn’t going to be easy. I rephrased my question a few more times, but I never could get another number and eventually our conversation drifted onto other topics. In the end I realized there was a conflict here. The scientist in me was only interested in a number that I could use to help quantify the success or lack of success of her procedure. Other numbers spit out of a functional questionnaire would follow. However, the physician in me realized that to her, she was being entirely accurate. The pain that disabled her for years died in full on that day in 2009 that Dr. Schultz injected stem cells into that part of her disc that was causing her the trouble. Almost like remembering a distant horrible memory, saying anything other than that it was completely eliminated from her consciousness 5 years ago was an insult to her experience. So what did I do? I reported it as, “100% relief of index disabling pain, patient still relays remaining pain from untreated disc that she is unable to accurately quantify”.
The upshot? My experience with this woman highlights the tug of war between scientists who love to quantify, doctors who understand that oftentimes quantification must mix with qualification in living and breathing patients, and the patients themselves who just want to get better and are generally oblivious at all of our attempts to define them by mere numbers. For patients it’s the experience that counts, and when you’ve had a painful and disabling monkey on your back for years and someone takes it away, it’s really “100% gone”. A valuable lesson that when the scientist gets thwarted by the difficult to quantify patient, that’s sometimes a good thing…Learn about Regenexx procedures for spine conditions.