What the "difficult" patient really means

I've heard warnings outside of hospital rooms," lots of "good luck" and "don't be surprised if that doesn't go smoothly" walking into an evaluation for a new patient coming into the hospital. I've been told to go all sorts of places and stick my questions everywhere from "my nose," south. Maybe it's my decade of working in restaurants, or having a grandmother that many labelled as "difficult" (who was the softest woman I knew), but those are my people. Why? Because so much of that anger and frustration comes from feeling like people stopped seeing you when you entered the hospital doors.

They became a number, a diagnosis, a discharge plan. That’s not what I saw.

When everything is acute, uncertainty is in the driver’s seat

Hospitals are medical machines, massive organizations that need to run efficiently in order to keep beds full, diagnostics running, and people moving through. Technology and medicine has made massive progress in recent decades and the bar for admission and discharge have changed alongside it. Get in, get better, move along. I’m not including the layer of insurance reimbursement because the water gets so muddy you can’t see through it when we add them to the mix. This is about the patients.

In order to maintain the level of efficiency AND safety, patients entering the hospital are given a number, providers will use shorthand for diagnoses to catch each other up, transfer care or discuss next steps. When you’re on the provider side of the conversation, it’s easy to drop into the healthcare language- level of function, lab results, discharge status, home setup, prognosis, none of those involve seeing the patient as a person. On the patient side, the machine runs efficiently if providers are able to conveyor them through the system. Labs drawn, meds delivered, tests run, meetings timed, discharges set.

When I was a “baby OT,” fresh out of grad school and working at a large hospital in Boston for clinical rotations, I had to come to terms with the reality that we cannot spend hours in rooms. There are so many rooms, and still many unknowns at that level of acuity. It’s the freshest of “what happens now,” scary, wonderful, and terrifying updates in each hallway, with everyone on both patient and provider sides, trying to make solid plans on shaky foundation.

Part of the loss of control comes from providers taking over to try and save lives, to preserve a level of function that will preserve or improve quality of life. In many instances, especially in trauma centers, stuff is hitting the fan and everyone is doing what they can to help. The patients that buck at this phase are usually doing so because of pain, a terrible diagnosis/prognosis, or fear. Some people like to be surrounded by others when things are going sideways and some would prefer to be alone but cannot because they need medical intervention. I’ve had the experience of walking into a room to do therapy with someone who just received terrible news from the medical team, or their scheduled pain medications aren’t covering pain, or they found out something happened to someone they care about while they are in the hospital. Any of these highlights their loss of control, but this is about what happens when they leave that acute phase and the label of “difficult” can become a part of the conversation.

Grasping at control once we start to see the path forward

By the time the patient transfers to acute rehab, like the one I worked at for over a decade, the dust has started to settle and they (and their family) are starting to get their bearings. These patients, whether it’s been a few days or a few weeks, are now coming to terms with changes that they did not foresee and are now navigating a (potentially) different future. In this setting patients may be showering for the first time since they went into the hospital, getting out of a hospital gown and back into their own clothes, are hooked up to less equipment, are able to leave their room, or are seeing themselves in the mirror for the first time. All of this is a heavy transition, especially if it’s coupled with feeling well enough to want control back, what they had had before entering the hospital.

There’s a difference between “no, I’m not well enough to be here and not ready for this level of activity” and “no, I have had no say in who is coming in and out of my room, where I’m taken to for tests (etc) and haven’t had a full night sleep in weeks, and I’m tired of feeling like a number.” The former is a medical acuity situation, the latter is my favorite patient to work with.

Why? Because you have to feel well enough to fight.

Now, when I talk about fighting, I’m not talking about harassment, outbursts, or violence, none of that is condoned. I’m talking about the “grumpy,” “difficult” patient that says something like “oh great, what do you want from me” when you pull back the curtain at 7:15am, the ones that say “I don’t see how doing this is going to get me out of here” when I hand them hand weights, and “when can I get out of here” or “I’m so tired of answering these same questions” when I ask about their home setup.

Those who are thinking about leaving the hospital are wrapping their head around what that’s going to look like, after this part is done. People who are hopeful and determined.

The problem with the “difficult” patient title, is that it is easy to be saddled with and difficult to shake. It can alter the lens through which the hospital sees patients, speaking from my own experience as the family member of a “difficult” patient. My grandmother had breast cancer and complications that had her in and out of the hospital for years while she was in treatment. I could hear her in the hallway before I got to her hospital room, her revolving door of home health therapists and nurses who worked with her after discharge, and this “oh that’s just who she is” that blanketed over her very real fear of a loss of control, dignity and autonomy over her life.

One of the last times she was hospitalized I was visiting while she was going through her discharge- medications, recommendations, home therapies, and she was refusing to take her morning meds. All she wanted was to go home, to be in her own house, not be told what to do, and to feel like she had a say. The nurses told her that without taking her meds she would not be discharged. Simple enough- take the medications she had been on before the hospital and would continue to be on for the future and she could leave. But she couldn’t see the forest for the trees at that point and simply wanted out (spoiler: she did take the meds when it was explained that they were her “ticket” to freedom).

The problem with being “difficult”

The goal of acute care and rehab is to provide high quality care and support for patients, without exception. Being “difficult” doesn’t impact care, but it will definitely impact experience. In the years I worked in rehab here are the problems I saw for these patients:

Refusing therapy- This is someone who has spent decades as a capable, competent, and independent person, now being asked to do something they’ve done, potentially since they were very young, in front of complete strangers. A lot of therapy, especially Occupational and Physical therapy is done in open gyms, where someone might be seeing how much function or strength they’ve lost since entering the hospital. Pride is an incredible asset when we work alongside it. Putting ourselves in our patient’s shoes is one way to bridge that “difficult” patient gap.

Wanting to leave too soon- No one wants to be a number, not even at the deli. Your room number isn’t your identity, it’s the place you’re staying while you get stronger/healthier. Patients that “just want to get out of here” aren’t always in denial about what they can and cannot do safely, they want to be in a familiar setting, one that’s comfortable and they control who comes in and out. The faster they can get out, the less real this whole thing becomes.

Refusing help with daily tasks- “I can do this myself” is a tightrope that Occupational Therapists learn quickly, and over and over, on the job. Being in close quarters with people who may be coming to terms with their new body post injury, surgery or diagnosis is delicate. I have stood behind hundreds of wheelchairs when people see themselves in the bathroom mirror for the first time after a stroke, surgery, facial injury or accident. It takes their breath away. Every time. To be in someone’s most vulnerable state with them is to stand beside them when the reality of their situation may be sinking in.

Arguing with every recommendation- These are professional, evidence based recommendations, not a pile of “shoulds” to drop in their lap. Patients pushing back on a recommendation create space for conversation about why that won’t work or what about the tool or strategy feels like it won’t be successful. It may also be the first opportunity for them to say “no” when they’ve been a part of the medical machine.

What looking past the label makes possible

For a few years I worked on Saturday mornings in acute rehab, when multiple admissions would come in from surrounding hospitals trying to clear beds on Friday afternoons. Typically Occupational Therapy is the first therapy to evaluate a new patient, because part of our assessment is bathing, grooming and dressing. Read: I’m the first therapist to see a patient that’s still in a hospital gown after transport yesterday, a night in a new hospital and now a full day of evaluations. Also… I’m the one that helped them get the shower they’ve been dreaming about for 2 weeks.

The transformation in rapport from walking in to a room with a new patient, still in bed in a hospital gown to a freshly showered person in their own clothes is astounding. Putting your own clothes on after weeks in a gown, no more sponge baths (if that’s a safe option), and someone talking about what you have to look forward to “when you get out of here” brings color back to people’s faces and has quelled many a frustrated first impression from patients.

There are also those who still aren’t buying what you’re selling, even after a hot shower and teeth brushed at the sink. Those who may have been in and out of the hospital multiple times or think that getting home, for the sake of being at home, will fix everything. The “difficult” brand comes from those who need more than a hot shower, those who may feel like it’s been a long time since someone looked them in the eye when speaking or stopped to ask them about more than their symptoms. Again, it isn’t an “us vs. them” of patients and providers, the medical machine is a juggernaut for both sides of the care experience.

What I don’t want for “difficult” patients is for that assumption to be internalized by them and continue to travel with them beyond the hospital. No one is pumped to be in an inpatient setting when they could (in their mind) be at home. Remembering the context is important, we’re all part of families and may have been assigned roles or attributes that we cannot get out from under, so it’s important to offer a 30,000 foot reframing for families and providers.

The patient is trying to hold on to who they are, their choices, their autonomy and dignity, in spite of everything happening around them at once. Keeping that front and center has led to more breakthrough conversations, helped decrease anxiety around “what happens now,” and helped families leave the hospital on the same page. There is a person in that bed, with a life, a family, a whole world that jammed up when they went into the hospital and it’s our job to help them get back to it.

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