“I may need to miss class because ESPN is filming a piece about my brother who had ALS, ” said one of my students. Although I remember studying about ALS (Lou Gehrig’s disease), I didn’t remember the bulbar onset form of ALS with symptoms that include uncontrollable outbursts of laughter and weeping. With ALS, patients have described the absolute worst thing being the loss of control over their bodies and their emotions. For a control-freak like me, I can’t imagine much worse, except perhaps the loss of my kids. It is a deep-seated fear, so much so that I become like those in medieval times, wanting to make a sign to ward off evil spirits. Even writing it makes it too close to reality, so much so that I hesitated before writing this sentence. Superstitions like this are funny constructs designed to give us the illusion of control: If I do X, I can prevent Y.
So much of medicine can be described like this, though we couch it in percentages and terms like risk or probability. We tell our patients, if you exercise, eat right, and lead a healthy lifestyle, we can prevent_____ (fill in the blank here).
When a diagnosis like ALS is given to a young, healthy male, it leads me back to that same feeling of helplessness we spend our lives in medicine avoiding if at all possible. We try to avoid uncertainty, but in reality, there is so much in medicine that we have no control over. There are whole TV programs and countless books devoted to mystery disorders that we don’t know how to treat and that we can’t diagnose.
I tell my patients all the time that medicine is an art, not a science, though we make it out be one, with research studies and laboratory testing. And then we are taken aback when we fail our patients, either through misdiagnosis or a medication prescribed that is ineffective, and our patients blame us. We were the ones who presented medicine as an exactitude, so is it any wonder? How can anything be exact when we are dealing with human beings, uniquely formed and miraculous?
Pharmacogenomics is presenting itself and teasing us with the promise of “personalized medicine”. Finally, we think, by breaking ourselves down into our quaternary code of A, C, T, and Gs, perhaps we have unlocked the key to health and long life. If you study the ICD-9/10 books, you see that we have a lot of codes for symptoms and illnesses, but not as many for treatments. In some cases, all we can do is describe an illness, and then perhaps be able to predict its course. What we cannot always do is predict its path through someone’s life or psyche, and frequently all we can do is ease their pain. We murmur platitudes, sincere in their sympathy, but ineffective, “I’m so sorry to hear that your brother died,” knowing the reality of his diagnosis meant his death was inevitable, no matter what we might have done.
If we talk to our patient and discuss the innate difficulty in treating human beings, do we do them a disservice? There are those patients who want to believe we are the experts, and that we have it all figured out. There is much to be said for the placebo effect, which is very real.
In teaching, it is difficult to convey this duality to students. I expect them to know these signs & symptoms about this diagnosis, and how to recognize and treat this, but in practice, it will rarely be this straight-forward. Patients will expect answers and sometimes, we will not have any to give. Is it a reality they must come to on their own, or must we break down their belief in a system which is not perfect in order to make them better clinicians?
One of my patients today was angry at the entire medical profession. He frowned at me, his bushy eyebrows knitted together, lips drawn together tightly. His answers were short, and he eyed me like I might snatch the oxygen tubing from around his neck. His gruff words and stiff manner belied his belief that we, in the medical community, were not doing enough to treat his multiple medical problems. He listed example after example of his previous providers’ mistakes. In each example, the underlying theme was that no one had listened to him. His unspoken words said, “Please hear me.”
The key, I think, is in listening to our patients. Because they are unique, each with their own story, I tell my students that a patient’s history is the key. Inevitably, on tests, they will miss a detail of the patient’s history that is pivotal, something that changes everything. The same can be true in real life. My grumpy patient left and hugged me, not because I made any changes in his medications, or discovered anything that might cure him of any of his diseases, but because I took the time to hear him. Even with all of our technology, our attempts to whittle people down to codes and numbers, nothing replaces one human being listening carefully to another human being’s story.
Today I am grateful to be in a profession where listening is still considered important, though the time pressure to see more and more patients has worsened across the country. I am thankful I was able to make a difference for this one patient, to help restore his faith even temporarily in a medical system that is imperfect, staffed by imperfect humans in an imperfect world. I am grateful for my students who quest every day to master all that they need to learn to be good physician assistants. I pray that all of us can survive our absolute worst thing no matter what it might be, with grace and understanding.
This is a beautiful post written by a man who was diagnosed with ALS at age 39 and who did his best to live with grace and humor despite his illness. It inspired my title of this piece: