The “Difficult” Patients

I have always preferred the difficult patients. In fact, I was once known for it. I used to perk up when I heard the word.

“Difficult” is a Label—Not a Diagnosis

“Difficult” is not a diagnosis, but it certainly is a label that can become permanently affixed to patients for all sorts of reasons. The designation is passed along relentlessly in reports and handoffs. It can change the care a person receives and the attitudes of the staff providing it. Some nurses immediately feel defensive when they are told they have been assigned a “difficult” patient. I don’t.

For the record, I do not prefer difficult people. I have had to complete employer based active-shooter training as a nurse, and I find that ghastly. I do not believe abuse toward healthcare workers is ever acceptable. Nor do I delusionally believe that every conflict can be resolved with enough compassion.

I am not saying that every angry, demanding, mistrustful, “nonadherent” or emotionally intense person is secretly easy to deal with. That is not how it works. I have learned, though, not to treat behavior as a diagnosis. Behavior is more like a symptom. Sure, the behavior may be difficult. But the person may not be. The person often has a reason, and that reason is often not explicitly documented in the chart.

A Behavior Is Not a Whole Story

A patient may say that they cannot remember to take a medication consistently when the real problem is that they cannot afford to refill it. Financial distress can be embarrassing. It may feel safer to appear forgetful or disengaged than to admit that you do not have enough money. This is especially true when you are not sure anyone can assist.

A patient may habitually arrive late for treatment and insist that the schedule simply does not work for them. Beneath the argument may be an unreliable ride or vehicle, a job they cannot afford to lose, a child they must get off to school, or a transportation schedule that takes more energy and time to use than anyone realizes.

A patient may repeatedly “refuse” a recommendation, not because they are apathetic or ignorant, but because only they understand the nuanced ways accepting the recommendation may cost them later.

Once someone finally feels safe enough to tell you the real story, an entire interaction can change. Every time a person has unburdened themselves to me and told me what is actually wrong, I have genuinely appreciated it. It is an honor to hear what others have stopped listening for.

Empathy is Not the Same as Excusing Behavior

Admittedly, I have a lot of empathy. Too much, sometimes. But I do not want to suggest that abundant empathy is all that is required to solve every problem. Empathy does not make unsafe behavior acceptable. It does not eliminate the need for robust boundaries. It does not create resources that should exist but don’t, or make every option possible for every person. Empathy can be a superpower when it keeps us curious long enough about our patients to root out the problem we are trying to solve, though.

I have cared for patients who struggled heavily with mental illness, cognitive impairments, trauma, and emotional dysregulation. One thing I believe medicine often overlooks is how difficult chronic disease is to manage even when som eone is not struggling psychologically or cognitively.

Kidney Failure Does Not Erase Existing Struggles

I once cared for an in-center dialysis patient who had experienced a traumatic brain injury. Emotional regulation was really hard for him. He was prone to outbursts and truly inappropriate comments. He argued with staff over everything. He swore. Much of the time, he was truly miserable to be around. Like many other patients, he hated being at the clinic. He hated everything about the environment. The lights, sounds, alarms, voices, smells, interruptions, and constant activity overloaded him. He was overstimulated and overwhelmed before treatment even began. He had to force himself to show up because it was psychologically difficult for him to get through.

I have said it many times and I will say it again: kidney failure does not care about preexisting mental health conditions. Those conditions do not suddenly improve or resolve when a patient needs to start dialysis. If someone was already struggling to manage the demands of life, regulate their emotions, remember tasks, organize appointments, or function under stress, it stands to reason that they will continue to struggle after kidney failure. The more medical conditions and treatment demands a person must manage, the harder it becomes—especially when overload is already their baseline.

The patient with the TBI was angry a lot. So, I talked to him about it. He told me how overstimulating the dialysis clinic was for him. The lights and sounds made him feel even worse than the treatment itself. He was much calmer and happier in his apartment, where he could play his guitar. I asked him whether he would mind dialysis less if it gave him more time at home to play his guitar. He said he would.

That is how this “difficult” in-center patient became an excellent peritoneal dialysis patient. It turned out, he didn’t need another lecture or contract about his behavior. He needed the treatment framed in a way that gave him more than it took away. He needed someone to understand that the environment (not the dialysis itself) was part of the problem.

Labels Can Shape Care

Once a person is labeled “difficult” and seen through that lens, nearly everything they say or do can be interpreted through it. When a “difficult” patient advocates for themselves by asking questions, it may be described as “challenging medical authority.” That is very troubling, because healthcare professionals do not hold any authority over patients, despite what parts of the medical establishment may still imply. We have expertise. We have knowledge. We have responsibilities. We may make suggestions, but the patient is ultimately the person who must live with the consequences.

A “difficult” person’s fear may be interpreted as resistance. Requests for more detailed explanations may be judged as noncompliance. Anxiety may look like apathy. Anger and frustration begin to look like personality flaws instead of responses to an overwhelming set of circumstances.

Once the “difficult” label is affixed to the patient, it travels with them. Every new clinician may enter the encounter prepared for battle based upon the reports of the previous clinician. Patients can sense this friction. And, based on their previous healthcare experiences, they may have prepared for battle, too. Now two people who need to be cooperating professionally are becoming increasingly dismissive of each other and defensive of themselves. The perceived “difficult” patient is amplified by the provider’s expectation that the patient will be difficult. The patient expects the clinician to be dismissive. The clinician expects the patient to be confrontational. Each person’s guarded behavior confirms the other’s assumptions. It becomes a self-reinforcing cycle.

Reframing

What happens if we reframe it? What happens if, instead of asking ourselves why a patient is “difficult,” we try asking:

• What is making this situation difficult?

• What is this person afraid will happen?

• What are they trying to protect?

• What has happened previously to this person?

• What are we asking them to do?

• Have we failed to explain anything in a relatable way?

To reiterate, these questions do not excuse abusive behavior. They do not require staff to tolerate threats, harassment, abuse, or cruelty. Understanding the source of a behavior and setting boundaries around it are not mutually exclusive. Good care sometimes requires both. Sometimes, looking for the answer will reveal a problem we didn’t know about before. Sometimes, it is a problem that can be solved. A schedule can be adjusted. A social worker can help with transportation or find a medication assistance program. A quieter treatment option may be possible. A patient may need to work through some grief before they can make decisions. Sometimes, the underlying problem it is not one we can solve. But even then, naming it honestly can reduce the struggle around it and open up a conversation.

A patient who feels heard and seen may still disagree. They may still decline what you can offer. They may remain angry. But there is a meaningful difference between anger that has been acknowledged and anger that has been repeatedly dismissed and ignored. We should be comfortable acknowledging the feelings that come with illness.

The Real Problem

I guess the most useful question I have found is, “What is the real problem here?” That question changes the goal. It changes the patient from a problem to be managed into a person experiencing a problem that needs to be managed. It acknowledges that the patient may be scared, sick, exhausted, stressed, grieving, financially strained, or overwhelmed. None of that makes our encounters easier, but it often makes the person seem far less “difficult” than everyone else before had decided they were.

I do not prefer difficult people. I prefer the moment a person who has been labeled “difficult” finally tells me what is actually wrong. I prefer being able to hear what others have stopped listening for. I prefer what becomes possible when we stop treating “difficult” as a diagnosis and start treating is a symptom and a reason to ask another question.