Patients need answers. Doctors don’t always have them.
Why do we keep coming to doctors? We just wait and wait, and nothing changes.
I overheard one of my patients say this just as I left the exam room.
This patient is like many patients I see who have a collection of symptoms, large and small, that affect and debilitate even the most resilient people. These symptoms include excruciating headaches, brain fog, persistent fatigue, chronic pain, and weakness, and there are many others. The symptoms persist despite normal test results. Patients with unexplained symptoms often go to many different clinics and see many different specialists who try and elucidate their diagnoses. But they are often left only with a list of diagnoses that have been eliminated. And if a diagnosis is provided, it is possible that curative treatment isn’t available. Sometimes even symptom relief is limited.
Visits such as these are frustrating for everyone. Patients are desperate to find even the slightest relief. Doctors are desperate to provide something to help. When every option provides minimal relief to none at all, what should physicians do?
Tell the patient you don’t know. That we don’t know. That science doesn’t yet know.
Doctors are increasingly talking about uncertainty, which is recognized as a constant in our line of work. To be clear, there are a lot of things that we are certain about. Advances in science and research have allowed for a greater understanding of more diseases than ever before. Further, we have more treatments than ever before. This shouldn’t be underestimated. People are living longer and healthier lives. Doctors are well trained to investigate, diagnose and treat many and even most conditions.
But uncertainty in medicine is omnipresent. In medical education, uncertainty is encouraged as a bridge to curiosity. In research, uncertainty prompts scientific questions and study. In clinical practice, uncertainty drives the process of diagnosis and investigation. Uncertainty might be uncomfortable, but in many ways it can be helpful. It is humbling, and it is motivating. Recognize what you don’t know, ask the right questions and work toward an answer.
Uncertainty, however, can also make the clinical encounter feel fragile. For patients who are suffering, a diagnosis of “I don’t know” is not particularly comforting or reassuring. I often hope that ruling out life-limiting diseases will alleviate some anxiety for my patients, but in reality it does not negate the debilitating effects of their symptoms. I feel obligated to present my uncertainty, but I don’t want my patients to lose faith. When I explain that there is no known diagnosis or treatment and that I am uncertain how to help, I don’t want patients to feel abandoned or even worse, that I don’t care.
Uncertainty also slots itself into a more existential role. If I am not able to provide the type of “medicine” the modern-day physician provides, what role do I play as a physician? If every disease has been ruled out and there is no further testing, no further investigations, no clear treatments I can provide, am I even the right person to be treating my patients?
I don’t think these questions have easy answers, which is why many patients with unexplained symptoms see so many physicians, and often other allied health professionals, including physiotherapists, psychologists, and naturopaths. Each time, they hope this new person will have an answer to their illness. For many of these patients, going to the doctor is an extraordinary affair. Their debilitating symptoms mean that the transportation, and often the hours-long wait at the doctor’s office, can be exhausting. To leave no different than when they came must feel so disappointing and fruitless. And this brings me back to my patient, the one I overheard asking why she continues to see doctors if they haven’t much else to add. She waited for me, and I felt that I had nothing more to offer.
At some point, after all the specialists have been seen and all tests completed, physicians have to acknowledge that there are limits to our knowledge and understanding of disease. That even the best, most experienced among us might not have an answer. To explain to our patients that there are things we just do not know is a fact in the same way a diagnosis of hypertension can be a fact. We owe patients this humility and honesty. And then, I think, there is a role, once all the investigations are done, to act as an anchor, a home base for patients.
Maybe one day we will have answers and diagnoses and treatments to illnesses we don’t understand now. Regardless, I hope and expect that many of my patients will grow old and experience life. With time, hopefully, most of them will age into a disease that we do understand. And when that happens, I want patients to feel comfortable enough to approach me, and to find me just as present to treat that new disease as the one they’ve lived with all their life.
Alison Lai is a fourth-year general internal medicine fellow with an interest in medical education and medical humanities.