In 1996, Sackett and colleagues published, “Evidence-Based Medicine: What it Is and What it Isn’t.” The incessant drum beat of the “hierarchy of evidence” has caused physicians to forget that the aim of EBM is to, “integrate the experience of the clinician, the values of the patient, and the best available scientific information to guide decision-making about clinical management.” A brilliant scientist and friend is struggling with chronic health problems. Her doctors certainly have the “best available scientific information” at hand, but they don’t seem to understand how to integrate the values of the patient in medical decision-making- and maybe they don’t have enough experience either. Here’s a scientist’s powerful cautionary tale of how NOT to practice EBM.
So, I am having yet another conversation with one of my physicians this morning. I have lost count of the number of times I have been in clinics and hospital these past 12 months. Many years ago, I used to read in amazement raw clinical trial results and patient medical records, and now I find I have as many drugs and comorbidities (that’s medical conditions) as the people I read about. Because my beloved PCP (GP; primary care physician) decided to become a hospitalist several months ago, I have had to see a bewildering number of docs who are filling in for her. My complaint this morning is that no one will sign off on my regular prescription for zolpidem (Ambien), which I have been taking for 5-6 years. This young kid who looks as though he is just out of university is saying it has serious short-term effects like rebound and long-term associations with cognitive decline. Am I aware of them? Do I know how serious a sedative this drug is? This is how the conversation goes:
“I have forgotten about 90% of what I’ve learned in this lifetime of scientific research, but I am still doing active medical research and teaching physicians like you about a variety of things so you can treat your patients better. I am coming to the point in my life where lots of things are going wrong with my organ systems and am in constant pain from several sources, but I want to keep working until I’m on my deathbed. Some days are horrendously difficult to get through, but are still worth it because I learn something and something I do benefits someone. You know the one thing I really look forward to? In fact, the most precious 15 minutes each day?” He looks uncomfortable. “It’s when I take the zolpidem. In 15 or 20 minutes I will be asleep and all pain will cease. I don’t care for my dreams that much, but I am healthy and not in pain. And I will sleep with a couple of breaks for six-and-a-half to seven-and-a-half hours. Then I wake up in pain, and that’s how my day begins. Most nights I will roll around thrashing in bed with 30-year-old insomnia and pain and unable to sleep before I reach for the pills about an hour or an hour-and-a-half before turning out the light. Some nights I sleep a couple of hours without the pills and will be a zombie the next day, because I know how important it is to take breaks from it some nights and I have read all the research on the subject.”
By this time tears are starting to run down my face. He tells me reluctantly that he will prescribe 30 pills, which I argue should be higher, because I have run out, need time, still have to choose a new PCP, and a round trip to my pharmacy is well over an hour, and I’m already tired of going back and forth. (One of the things I loved about my old doc is that she totally got that, which is why she prescribed my drugs in batches of 90.) He also wants me to go to the sleep lab. I tell him the irony of that because in the late seventies I was in medical research working with sleep lab guys on studying melatonin and its metabolites. I am not against a night in the sleep lab, but do you really think you can tell me something I don’t know that I have not learned in 30 years of insomnia as a trained scientist and researcher? (It’s like the day of my official diagnosis of peripheral neuropathy: they wanted to do endless tests and I stopped them. When asked why, I said it’s because you can’t cure it and there’s nothing you’ve suggested and I’ve tried that controls the pain, so what’s the point in refining a diagnosis that you can’t do anything about?)
In his notes I later see that I am “resistant” to alternative treatments. He is young; he does not yet understand that for some medical conditions, he has to let go, and let the patient decide what is the best path. On the other hand, the folks at the hospice, where I volunteered to spend time with dying patients (after training) before the pandemic, can’t wait to have me back once I am fully immunized against COVID-19. They say that it’s because I understand what happens when the medical world fails you and you have to let it go. I call it dignity.