The "Difficult Patient"

Today it’s hard to find a health care professional who doesn’t want to “put the patient first,” practice “patient centered care,” or make the patient “part, or even the center, of  the healthcare team.” Bring up current problems with clinical practice (be they managerial, insurance company, or regulatory) and you will inevitably hear health care professionals talk about the importance of the doctor/patient, nurse/patient relationship.

Nurses, in particular, are adamant that they are members of THE Caring Profession and that their fundamental role is to be THE patient advocate. (This formulation does nothing enhance teamwork since it drives physicians, PTS, OTs and other non- RNs crazy. “What does that make me?” they may retort, “The patient’s enemy?”) Patient-centeredness, and the sanctity of the patient/clinician relationship is  the talk everyone is talking.

When you start actually probing and physicians and nurses (as well as others in health care) describe the real life patient (rather than the patient as abstraction), things start to get a bit more complicated. It’s amazing how quickly so many of these patients – who were absolutely revered a few minutes earlier — suddenly become “difficult,” when clinicians start discussing actual patient encounters.

A couple of months ago, I was talking to a nurse at a major American teaching hospital. She began to describe a “difficult” patient and the patient’s even more “difficult” family.  The patient was a young woman who was engaged to be married when she had developed a serious health problem.  She had to have surgery and now found herself in the hospital, in pain, constipated, her life plans on hold. She was, according to the nurse, “not responding well” and her family was equally problematic – calling the nurse manager, complaining about everything. When the nurse manager gave her her patient assignment, she was warned that she would be dealing with a very “difficult” patient and family. The RN gritted her teeth and went in to assess the young woman. The woman was upset because she had to have an enema, which she’d never had to have in her life. The patient was distraught about her condition, when, in fact, the RN said, the patient was so much better off than almost any other patient on the floor.  The RN expressed her irritation about how “difficult” the patient was (her words not mine).

Nonetheless, she exercised professional discipline and tried to reassure the young woman about the enema, her recovery, and her future. By the end of the day, the family was reassured and had ceased complaining and everyone – including the manager – complimented the nurse on the good care she had given.

What surprised me about this discussion was how little sympathy the nurse expressed toward the patient and how easily the manager and then the nurse had categorized her as “difficult.” Since I could totally relate to the young woman’s anxiety and dismay, I actually found it a bit scary to think about the reaction her plight elicited.

This happens very often when I talk to nurses, doctors, and other health care professionals. I was recently talking to a young Canadian who’s just gotten a nursing job after graduation. Once again, the nurse lamented the fact that so many patients are so “difficult.” “You cannot imagine what these patients are like,” the nurse said,” always on the bell, always demanding. They just expect you to be there to take care of their every need.” This nurse is not a callous human being. Yet, it only took a few months post graduation for the RN to develop a definition of “the difficult patient” that goes way beyond what non-healthcare professionals would expect it to be.

I talk to ER docs, or surgeons, or even internists and get the same thing. “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” coming to his institution. (A “frequent flyer” is what you get called if you have mental or a chronic illness and have repeat visits to the ER). Among themselves, nurses, doctors, social workers – you name it – speak in very derogatory tones about patients who have mental or so-called psychosomatic illnesses. This in spite of the fact that many, when talking about patients publicly, acknowledge that every illness has a mental, pscyho-social component. The mentally ill come in for particular derision, even though people are talking about patients who have an “Illness” or “disease,” and who are not deliberately play-acting.

Most non HCPs (healthcare professionals) would heartily agree that screaming, shouting, punching, constantly complaining when there is, really, not much to complain about constitutes being “difficult.” The descriptor “difficult,” however, is not attached only to this kind of patient but to anyone who mpves out of the narrow bandwidth of what seems to be “the good patient.”

To me and many other patients or would be patients, it’s pretty frightening to learn how quickly HCPS can go from loving us in the abstract to describing us as the medical equivalent of cop-show “perps” or “unsubs.”  It doesn’t seem to take much to become a “difficult patient.” All you seem to have to do is be anxious, upset, frightened, worried, terrified at being in an alien land – i.e. a hospital – and not keep it to yourself.  Ask a few questions when the nurse or doc is busy. Ring the call bell more than once because illness has reduced you to the status of an infant who can’t do anything for herself. Express a slight doubt about treatment. Have a question. Doubt a treatment recommendation. Come into the office, ER or hospital frequently because you have a chronic illness and pouf, you have become “difficult.”

Reading this, many HCPs might respond that they describe patients as “difficult” because they are tired and overworked and, after eight or ten hours on the job –totally fried. Many insist that, in spite of this, they don’t let their innermost thoughts show and are outwardly caring and sympathetic to their patients – even the ones who kick and scream and punch. I am sure that is true.

We now know a lot about the phenomenon of framing– how we think about things and interpret them – and how framing affects our behavior. Research on how the brain works also tells us that we are notoriously poor judges of ourselves and our own behavior. Read Daniel Kahneman’s book Thinking Fast and Slow (about how the brain works) and you’ll discover that a stranger on the street is sometimes a better judge of how we come off than we are ourselves. Well-intentioned as they may be, many health care professionals convey what their feelings about “difficult” patients to those patients.

Whether they intend to do it or not, they are “framing” the patient to themselves and others they work with in a way that colors how others view and then treat that patient. (Just say the word “difficult patient” to yourself and imagine how you would respond to that person. See how your stomach clenches, your blood pressure rises, and your minds races to the most negative images). It’s because how we frame things is so important to how we behave that this issue is so important.  Many HCPS, it has been documented, clearly convey their negative feelings about the “difficult patient” in the broader culture as well as to patients, which is why Dominck Frosch’s recent study in Health Affairs documented that so many patients are terrified of even asking a single question to the doctors and nurses.  They are afraid to participate in – or question – decisions about their care for fear of being labeled “ a difficult patient.” (Read Chloe Atkins book My Imaginary Illness, to learn more about the consequences of this labeling).

What can be done about this? Well many people smarter than I am have been thinking about this problem and making recommendations.  The Gordon and Betty Moore Foundation, for example, has just engaged Frosch as a fellow who will help advance their efforts to encourage patient and family engagement and he has lots of ideas about how to help patients navigate this negative framing.

That said, I want, in this and future blog posts to offer some ideas and suggestions of my own. The other day, for example, I was talking with my friend Sioban Nelson, Dean of the Faculty of Nursing at the University of Toronto. We were discussing the problem of “the difficult” patient, and Sioban mentioned what it is like to take care of patients with whom you have difficulties. Wow, I thought, that is a very interesting reframing of the problem. Rather than the patient being “difficult” why not think of the problem in terms of “difficulties” that one has, as a professional, with the patient (as in, I am have difficulties dealing with this particular patient). This reframing changes everything.  Instead of making the patient the problem, the issue is one’s own difficulty dealing with the patient. This makes it possible to search for options, alternatives, and solutions to those “difficulties.” Conceptualizing the patient as difficult, on the other hand, tends to make it very hard to imagine options, alternatives, and solutions, since the problem becomes turning a “difficult” person into an easy one.