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Clinical Uncertainty from this Side of the Bedrail: Role of Empathic Communication
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In the current issue, we are fortunate to have an esteemed group of experts exchange views over nosology in a diverse group of rheumatic diseases. How precise should the diagnosis be? Does it have dramatic therapeutic implications? What about coding and reimbursement? All good questions without easy answers.
Calabrese
We rheumatologists are certainly used to seeing many patients without clear underlying diagnoses. There are the positive ANA patients without systematic lupus erythematosus, but who are in pain and fatigued with several already told that they have the disease. There are those who are convinced they have an autoimmune disease based on little to no evidence and have medically unexplained symptoms who can’t think, can’t sleep, and are variably exhausted and in pain.
There are also those with pre-existing diagnoses, such as post-Lyme syndrome and chronic fatigue syndrome, who clearly are not well, but are searching for definitive treatments where there are none.
I feel that in my role of running an immunology clinic, dealing with disorders on both sides of the immunologic scale — ie, autoimmunity/autoinflammatory disease to primary and secondary immunodeficiencies — that I have seen more than my share of such patients over my career, but I know you have too. Yes, it’s tough for us to deal with these scenarios, but undoubtedly it is far tougher for the patients so let’s examine it from the other side of the bedrail, if you will.
Patients — and all of us, for that matter — find it hard to cope with what is not well understood. Uncertainty is a threat to coping thus the physician in their role of the healer must not only recognize this state but adopt strategies for dealing with this. It may at first seem paradoxical to assert that we must limit uncertainty when uncertainty prevails, but I am convinced that it can be done. I would like to take this opportunity to share with you my biases and habits in dealing with these scenarios, though I am quite certain that you likely have your own unique and effective ways of doing so.
The first principle I apply to confronting a patient who may have no distinct disorder but who is suffering from no matter how peculiar a symptomatology is simple: Hear them out. Listening is powerful. I like to start out by asking what their goals are for the visit and also what they believe is the nature of their condition. This often helps flesh out not only the patient’s chief complaint but also, and vitally, their chief concerns.
As you know, somatic complaints and existential concerns are not the same. I then give the patient space to “help me understand” their problem. It’s a natural concern that allowing the patient an uncontrolled narrative may take too long, but in my experience, which may employ some gentle steering, it does not, and letting people have their say at first is validating.
The second principle that I teach and role model for trainees — and one that my nurse practitioner Betsy has heard so many times that I feel sorry for her — is that at some point (generally after the ritual of the exam), I make an effort to explicitly validate their suffering, especially when there is a strong likelihood that no clear underlying diagnosis will be forthcoming.
I often start by saying that I want to assure them that first, I know their symptoms are totally real and that second, it should not even be considered that the symptoms are in some way “in their head” (in the pejorative psychosomatic model), and then finally, saying something to the effect of, “I know that these problems you are having are not your fault and I promise to help you.” I then follow this with structured silence (something I have gotten very good at in the past decade) and let them reflect. It is often surprising what one will hear at this moment.
For patients who insist on a diagnosis, I will often say something to the effect that one in three patients who have sat in the chair they are sitting in have no definitive diagnosis. This is obviously a guestimate but you get my point. This serves to let them know they are not alone. These personal habits, which have taken me many years to refine, represent a core skill set for empathic communication, and although employing them may not slow down bone erosions, they can go a long way toward improving quality of life and patient satisfaction.
These are just some the tools I use. Tell me yours through Twitter at @LCalabreseDO or email me at calabrl@ccf.org.
- For more information:
- Leonard H. Calabrese, DO, is the Chief Medical Editor, Healio Rheumatology, and Professor of Medicine, Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, and RJ Fasenmyer Chair of Clinical Immunology at the Cleveland Clinic.
Disclosure: Calabrese reports serving as an investigator and a consultant to Horizon Pharmaceuticals.