#33 Will You be a Difficult Patient?
Patient memoirs serve a valuable function to show physicians and nurses what the experience looks and feels like from the other side of the stethoscope. Overwhelmingly, the reports are not good.
In The Unying, Ann Boyer’s memoir of her breast cancer diagnosis and treatment, she offers a scathing account of her doctors and the medical system that offered few resources for patients, like herself, with scanty support systems. Boyer doesn’t intend to be a difficult patient, but she does not think that her first oncologist will take on enough risk to treat her aggressive type of cancer. She leaves him to get a second opinion. Another time, when Boyer deceives a hospitalist into discharging her prematurely, she wasn’t just trying to be dishonest, she just needed to go back to work to support herself as a teacher.
In her book, In Shock, Dr. Rana Awdish takes readers with her down the horrifying road of her severe illness and treatment at the very hospital where she works as attending faculty in pulmonary and critical care medicine. During one of many visits to the emergency department when she with returns with terrible pain, Awdish hears her nurse tell the physician entering the room that Awdish was being “difficult.”
Awdish writes, “The label stung me in a way I hadn’t expected.
‘Difficult’ How many times had I used that label to describe a patient or a patient family? More than I’d care to admit. We label patients. We label them as cooperative, or drug-seeking, realistic, or difficult. It functioned as an abridged report to our colleagues of what to expect.
‘Difficult’ was shorthand for ‘The patient is not going along with the plan. I have a good solid plan, and they weren’t on board.’ I wondered why we ever presumed that our plan should be the barometer by which we measure compliance. Why our agenda was preformulated and not collaborative. We insisted on creating a dynamic in which one person wins and the other loses.” (p. 157)
Yes, indeed. We (doctors and nurses) judge our patients in one way or another because that is what humans do. We have a strong negativity bias and we naturally look for things that look wrong or dangerous to us. There are several problems with all the harsh judgements, though. Because of confirmation bias, we tend to interpret new information as being supportive of the opinions we already hold. We actually search for things in the world that support the negative beliefs that we already have.
If we believe that some patients routinely dramatize their behavior to obtain more pain medicines than they actually need, we will only find evidence for that when we interact with those patients. We will watch them from outside the door to their room and notice that they don’t seem to be in pain when no one else is around. That observation serves as evidence that the patient is drug-seeking and faking it.
Many, many patients with severe pain are denied relief or given inadequate doses of opioid pain relievers because of the fear of feeding or causing addiction or simply because the physicians and nurses do not wish to be manipulated. The official scrutiny of physicians for over-prescribing opioids is real and persistent. Additionally, as Awdish observes, doctors and nurses have created a dynamic where one person wins and one person loses. Highly driven people who become doctors and nurses do not like to lose.
The adversarial dynamic has absolutely been created in the minds of the doctors and nurses by their own thoughts. Those are some of the most poisonous thoughts we can have. When we think that our patients or their families should be behaving in a different way or complying 100% with our plan, we will be disappointed and frustrated quite often. Our competent patients have the autonomy to go along with the plan or not. This is one of the four tenants of ethical medical care.
If we always want to win in the dynamic, then the patient surely loses. Awdish goes on to explain how she thought and felt after being called difficult. Her explanation opened my eyes to the “patient” side of this interaction.
“In that bed, in pain, I felt terribly, frighteningly vulnerable, dependent on the care of strangers for my most basic needs as well as the most complex care. I felt powerless in a way that is impossible to imagine, from a privileged position of wholeness and well-being. I know this because after this failure, I pathetically tried to ingratiate myself to the team. I believed that I needed to make them like me in order to care for me. I believed I had to earn pain control through good behavior. I felt I had to prove to them that I was deserving.” (p.157)
Imagine having to “earn” pain control through good behavior. I was reminded of how my dog earns treats for sitting on command. Most of us have not experienced severe pain or the intense discomfort of opioid withdrawal. Our patients are just trying to feel better from their back pain or their sickle cell crisis and, in the moment, they don’t care about opioid prescription rules or regulations. The fact that we have the means to help them feel better and withhold it in a judgmental or punitive way is cruel, wrong and absolutely unnecessary.
The dynamic between nurses, doctors, and their “difficult” patients can change by changing the way that we think about them. Our thoughts and beliefs about them are so deeply entrenched that everyone in the intensive care unit or the emergency department believes they are true. Some beliefs are rooted in racial or cultural stereotypes and caricatures that we learned during our training. Our thoughts about “difficult” patients are entirely optional and can be changed. I feel so strongly about the matter that I wrote a book about it.
I did not read Awdish’s book before I wrote mine. We both reach similar conclusions about ways to find areas of agreement and collaboration with patients who challenge us. We could drop the thoughts that frame the doctor-patient relationship as adversarial. We can be creative and find other solutions. We are not fighting against the patients and their families, we are fighting the underlying disease and treating the symptoms. Awdish declares,
“It’s no one’s right to define the parameters or prerequisites of someone else’s suffering.” (Page 158)
The arrival of the patient at the clinic, ICU or emergency department is a neutral event until a physician or nurse has a thought about that person. By habit and by training, our thoughts trend strongly negative. I call them judgments. How we think about our patinets is a choice. We could choose to evaluate the very same patient and find something positive or relatable. Kinder and gentler thoughts (that are still believable) will lead to more positive emotions in the physicians and nurses. We get better results when we feel compassion and curiosity.
Not only are we quite literally hurting our patients with our harsh judgements, we are making ourselves feel terrible. Always thinking “things shouldn’t be this way” or “wasn’t it better in the good old days” just leaves us feeling dissatisfied and cynical. That line of thinking just fights against reality and reality always wins. When physicians and nurses accept that a few challenging patients will disagree, sign out, yell, and complain, those situations become easier to accept. We can’t just wish away that part of the human experience.
Take a moment to reflect and consider before passing harsh judgement on the patients you find difficult. One day every one of us will find ourselves on the stretcher as a patient and we can only hope that our nurses and doctors will extend to us the benefit of the doubt and fair treatment. Every person deserves this.
