Today it’s hard to find a healthcare professional who doesn’t want to “put the patient first,” practise “patient centered care,” or make the patient “part” or even “the centre” of the healthcare team. When you discuss any potential or actual bureaucratic, governmental, insurance company, or even internet interference in clinical practice, clinicians complain that non-healthcare professionals fail to understand the sacred trust that exists between clinician and patient and the duty to “first do no harm,” and protect the patient.
When, however, the conversation moves from the abstract patient to the real life patient whom clinicians meet in their daily practice, it’s amazing how quickly we, as patients, can slip off our sacred perch and be categorized as “difficult.” The rapidity of our descent into difficultness has always intrigued me. Who exactly is “the difficult” patient? What exactly do you have to do to move from worthy to difficult? Call the physician at home every couple of hours? Scream at nurses in the hospital or sit on the call bell? Be, god forbid, “non-compliant?”
When I talk to ER docs, or surgeons, or even primary care physicians (the ones who are supposed to be extra-special caring) I also hear many complaints about their “difficult patients.” “You see a patient whose chart is the size of a dictionary, and you run in the other direction,” one internist told me recently. (I cringed when I heard this. What happens when I’m 80 and my medical chart is as thick as my wrinkles are deeply etched?) Another ER doc (like so many ER nurses) complained about all the “frequent flyers”—patients who repeatedly visit the ER, often with chronic conditions—coming to his institution. OMG! I thought, would that be how they talk about me if I had sickle cell anemia, or repeated falls from dementia, or some other chronic physical or mental problem? I’ve heard nurses complain about patients who are simply anxious about a procedure, or ring the call bell once too often. Comparing them to patients who are much worse off, they wonder what this person has to complain about.
Most non-healthcare professionals would heartily agree that screaming, using abusive language, punching, and other violent behavior falls into the category of “difficult.” But it’s a bit frightening to hear healthcare professionals label patients as “difficult” only because they are anxious and terrified at being in an alien land—i.e. a hospital; ask too many questions when the nurse or doc is busy; ring the call bell because illness has reduced them to the status of an infant who can’t do anything for herself; or express a slight doubt about treatment.
I understand that many healthcare professionals may lack empathy because they are overworked, exhausted, hungry, and perhaps even depressed and anxious themselves. Some would also insist that they are caring with their patients no matter how “difficult,” these patients prove to be. Nonetheless, I worry that using the term “difficult” establishes a framing effect—a cognitive bias—that may result in poor communication and tense patient-clinician relationships. Well-intentioned healthcare professionals may convey their feelings about so-called difficult patients to those patients and to other people who will care for those them. This will color the behavior of other caregivers and turn the patient record into a kind of rap sheet—the proverbial gift that keeps on giving. (Just say the word “difficult patient” to yourself and consider how you would respond to that person. Does your stomach clench, your blood pressure rise, and your mind race to the most negative image when you contemplate interacting with that person? Then think about how a nurse, told by her manager that she is about to care for a “difficult patient and family” has been set up to approach them? Framing patients as “difficult” can lead practitioners to convey subtle signs of impatience, lack of sympathy, negative judgments about the patient or his or her behavior, among other things. As Dominck Frosch and his colleagues have documented in a study in Health Affairs, this can, in turn, lead patients to fear asking questions of, discussing concerns about treatment with, or even concealing critical information from their caregivers.
The potential to create unproductive and unsafe relationships could, perhaps, be reduced if the terms used to describe patients changed: if clinicians talked about the “difficulty” they had dealing with a particular patient or situation rather than characterizing the patient as “difficult.” Such a reframing might make it more possible to search for options, alternatives, and solutions to those “difficulties.” Conceptualizing the patient as difficult, on the other hand, makes that process very hard once the problem is almost defined as someone else’s character rather than one’s own response to a challenge or individual.
The point here is that words matter. If we can shift the clinical and relational terrain by adding a y, or ies to the word difficult, isn’t it worth a try?
Suzanne Gordon is a healthcare journalist and co-editor of The Culture and Politics of Healthcare Work Series at Cornell University Press. Her latest book is Collaborative Caring: Stories and Reflections on Teamwork in Healthcare, which she co-edited and she is co-author of Beyond the Checklist: What Else Healthcare Can Learn from Aviation Teamwork and Safety. Most importantly she is a patient.
Competing interests: None declared.