My pain didn’t go away as expected. Not as I expected. Not as any of the dozen plus clinicians who treated me expected. Not as the worker’s compensation claims adjusters expected. I was labeled a challenging patient, a “difficult” patient, and punted down the line to the next care provider, the next treatment. The next failure.

It was I who was challenging. It was I who was difficult. Not my pain. Not the situation I was in. Not my suffering. Not the treatments that didn’t work. Not the adversarial workers compensation system. Not the systemic lack of knowledge about the complexities of pain, especially ongoing pain that doesn’t behave or resolve as everyone expects.

I was the problem. Just me.

Looking back, it’s no wonder I was so ashamed of my pain. No wonder I felt that I was to blame. That it was all my fault. That I was the failure.

Words matter.

I was recently a part of an amazing pain conference, the Oregon Pain Summit. It was a conference filled with compassionate, knowledgeable, and empathetic clinicians. A conference where I gave the keynote and moderated a patient transformation panel. Person-centered care was front and center. The weekend provided immeasurable hope for the future of pain understanding and care. And yet, these same terms came up

Challenging patient. Difficult patient. The worst patients.

These terms were not at all said with malicious or hurtful intent. That it happened in this setting shows this is a cultural problem, not an individual problem.

This way of thinking and speaking is the default mode in medicine. It is the water we swim in in healthcare.

There are these two young fish swimming along, and they happen to meet an older fish swimming the other way, who nods at them and says, “Morning boys. How’s the water?” And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes, “What the hell is water?” ~ David Foster Wallace

Context as a drug: some consequences of placebo research for primary care; Complicating Relationships: The Water that Doctors Breathe

I’ve done it, too. I’m a product of these waters myself. As a firefighter paramedic I referred to patients as frequent flyers, as needy, as difficult. I’m sure I’ve been a part of conversations where we talked about the worst kind of patients.

It was a part of the culture. Part of our own protective mechanisms, perhaps. Our own ways of dealing with challenging and difficult situations. With sometimes dealing with the worst kinds of situations.

What the hell is water?

When these terms came up at the conference, I was empowered, and encouraged, to call it out. To bring attention to the water. To explicitly point out the milieu in which we’re swimming as we navigate the complexities of pain, trauma, suffering, and being human.

We are not challenging patients, we have challenging pain or challenging conditions. We are not difficult patients, we are in difficult situations or facing difficult circumstances. We are not the worst patients, we are experiencing the worst days, months, years of our lives. We are living out our worst nightmares, perhaps living out your worst nightmares, too.

When it is made personal, when it said about us, about our character, and not about what we are going through, it hurts. It hurts a lot.

My speaking up was received in the spirit it was intended: to bring awareness to the water we swim in, to shed light on the culture of which we are all a part.

A culture where patients are so often shamed and blamed for their pain, for not getting better…for not being easier to treat.

Words are not just words—the language we use, both with and about patients, must be chosen carefully in order to care best for the patient.

Andrew S. Epstein, MD: Not Just Words: Caring for the Patient by Caring About Language
The challenging patient checking out Multnomah Falls in Oregon
Multnomah Falls, after the Oregon Pain Summit

We need to change the culture

When treatment doesn’t work, it’s natural to find something to blame. When we face someone or something we do not understand or know how to deal with, it is easy (and human) to assign blame. To blame the patient. To blame the clinician. To blame ourselves, to blame the other.

It’s a zero-sum game.

Thankfully, we don’t have to stay there. The science shows us there are better ways forward. The people who have lived with pain who are living well or have recovered show us what is possible. There is realistic hope for all of us.

One need not attain full physical recovery in order to heal.

Drew Leder, The Experiential Paradoxes of Pain

Our challenges

These are challenging and difficult situations for all: patients, clinicians, and carers alike. These are our challenges, not patient challenges alone (and not just patients who are challenging).

Clinicians go into healthcare wanting to help patients. When they cannot help, I imagine it must be frustrating and, well, challenging.

No clinician wants to feel they can’t help or do any good. No patient wants to feel they cannot be helped, or that they are no good.

In this together

Together, we can move mountains, or at least do some good. We can walk together through these difficult situations. We can face together these challenging circumstances. We can help each other make sense of what is happening and explore possible paths forward.

What is really challenging is moving mountains together!

Bronnie Lennox Thompson has written beautifully on ‘othering,’ and how to avoid it. Maybe there is some of them in us and some of us in them. Maybe there is some of you in me and some of me in you.

We are all human

It is in our shared humanity, shared vulnerability, shared uncertainty, shared hope, that we can find better ways forward. That we can create better narratives and help each other tell better stories. Stories that aren’t so frightening or so fraught. Stories that are more accurate. Stories that make both biological and biographical sense.

We don’t have to have all the answers to be able to recover and heal and move forward. There is so much we can do with what we do know. So much we can do with what we discover along the way.

A challenge for us

It turns out I am a challenging patient of sorts. I do want to challenge the status quo, I do want us to challenge ourselves to change the culture.

It is in our shared humanity, in finding ourselves in each other, that we can shape a more healing culture. A more caring and more therapeutic culture. A culture that is better for clinicians and patients alike.

It won’t be easy. We will be swimming against the current, but together we have a chance to turn the tide.

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12 Responses to "The challenging patient…"

  1. Hi Joletta, thanks for another great article, I always enjoy reading your blog!

    It was very timely, as it made me think of a situation at work today (I work in a physio outpatients department). A colleague of mine had what some might call a ‘challenging’ or ‘difficult’ patient. The gentleman had recently received a course of passive treatment from another physio (ultrasound) and was very keen to buy his own ultrasound machine so he could self treat. He was very distressed and disabled by his pain. He also had a lot of other stress in his life, through a number of family issues. Understandably, he was also very angry about his situation.

    My colleague is a very kind, sensitive and compassionate person but ended up feeling helpless because she could not seem to find a way to reach out to this patient and help him. She attempted to address some of the other factors in his life that might be contributing to his problem, but each time she was rebuffed with an angry retort. I agree with you that there is a great responsibility on us, as clinicians, to work with and collaborate with our patients to help them rebuild their lives, but I think this has to work both ways too. If a patient does not want, or does not appear ready to work with you, it makes any sort of collaborative relationship very difficult.

    I would be very interested to hear any thoughts you may have about this.

    Best wishes.

    • Hi Matt,

      Thank you so much for your kind words and for sharing your thoughts and this story.

      From my perspective, it seems the clinician may see this patient as challenging because he is not doing what she, the clinician, wants. The patient may also see the clinician as challenging because the clinician isn’t doing what he, the patient, wants. Both sides blame the other and both sides are frustrated as there is no moving forward.

      So who is being challenging or difficult? Is it the patient? Is the clinician? Is it useful to think in such terms? I would argue it is not. The situation itself is difficult, the circumstances are challenging.

      From my experience, clinicians often feel helpless when they try to force conversations, like seeking out what else may be contributing to a person’s pain, rather than leading the patient lead the conversation. If the ultimate goal is to help the patient, what is most relevant to the patient, what concerns the patient, what the patient believes, should be the starting point. That’s where the narrative begins, and where the collaboration begins. To change the narrative to one that might be more accurate or helpful it cannot just be imposed on the patient. If it doesn’t make sense to him, within the framework of his own story and beliefs and values, it’s may very well be met with anger because he’s not feeling heard, not feeling his concerns are being addressed or that is concerns are being trivialized.

      Very well-meaning, kind, compassionate clinicians try to impose narratives rather than co-create them. They want what they believe is best to be the path forward and can be a bit dismissive, often unintentionally, of what the patient believes is best. But this is the patient’s life, not the clinicians. If it is their life being rebuilt, they should be the architect. Their knowledge and expertise in their pain, themselves, their goals, their lives is just as valuable as the clinicians knowledge and expertise about pain, rehabilitation, recovery. Too often the latter is the only voice that counts. That is the water we swim in, the culture we are a part of, not any sort of individual failing.

      From Stephen Loftus in Pain and It’s Metaphors: A Dialogical Approach “The traditional view of Western health professions has been that the practitioner’s expert, monological voice is the only voice that counts, the only voice with authority. In the dialogical position advocated here, allowing for multiple voices to be heard, there are other ways of looking at problems and interpreting them. If the problems are ever to be dealt with satisfactorily, it is important that these other voices are taken into account.”

      A wonderful resource on how to co-create narratives is Conversations Inviting Change, by John Launer. The book should be mandatory reading in health care, in my opinion! Some articles I would recommend are “My Story is Broken, Can You Help Me Fix It: Medical Ethics and the Joint Construction of Narrative” by Howard Brody and “The Nature of Suffering and the Goals of Medicine” by Eric J Cassel.

      Even with the best narrative and/or clinical skills, not every clinician is the right fit for every patient. Is that because the patient is challenging, or difficult? Or is it because the clinician is challenging, or difficult? Again, I don’t think blaming either, or calling them challenging or difficult, is useful. It will always be a matter of perspective. Is the patient not ready, or is the clinician not willing to meet the patient where they are? If we shift the perspective perhaps we will see it is the clinician who does not want, or does not appear ready, to work with the patient. After all, if the clinician isn’t ready to meet the patient where they’re at, that also makes any sort of collaborative relationship difficult!

      For me it’s about widening our lens. Pain is complex, humans are complex, human interactions are complex, the cultures and environments we live and work within are complex. None of this comes down to individual faults or difficult people, in my opinion. There are many difficult circumstances we are all trying to figure out, many challenging situations we are all trying to work through. We will only figure out the best ways forward when we lay aside blame and judgment and work together.

      Thanks for asking for my thoughts. Hope something in there grabs your attention! If you have trouble accessing the papers I linked and are interested in reading them, I’m happy to email them to you. Would love to keep the discussion going, too!

      • Wow, thank you Joletta for that extremely helpful and detailed response, it made for a very interesting, albeit uncomfortable read at times for me!

        I tried to put myself in my colleague’s shoes and think about how I would have responded if I had had such a patient in front of me. I must admit, my first response was to think “Hold on, I am the expert here, you’ve come to me for my expert opinion, perhaps you should listen to me”, but after reading your response above, I think we (as physios) have almost certainly been guilty of trying to impose our knowledge and beliefs on patients, and this can lead to an escalation in anger with both the patient and the clinician becoming increasingly defensive, with neither party feeling like they are being listened to.

        I would be very grateful if you could email me those articles you provided links to, as I was having difficulty accessing them.

        Thanks again.

        Matt

        • An email will be on it’s way shortly! Thank you for taking the time to reflect on my comments and see things through a different lens. One of the passages from Howard Brody’s paper includes the following:

          “One important element of the joint construction of narrative is that the patient is fully involved throughout the process. The physician does not hand the new narrative…to the patient in the way that the traditional physician hands out a prescription at the end of the visit. There is an ongoing, partly nonverbal give-and-take as the physician listens carefully, throws out a few tentative comments, and modifies her approach depending upon how the patient responds to her initial offers of advice, explanation, and reassurance. If the patient indicates acceptance and relief, the physician moves quickly to complete her account of what is bothering the patient and what should be done about it. If any of these comments produce a raised eyebrow or other evidence of questioning or resistance, the physician will stop at that point and explore much more fully what the patient might be thinking. The involvement of the patient is critical in the next element of the joint construction of narrative, which is that the narrative must be meaningful from the patient’s point of view…Moreover, the patient has to accept that the story is truly about him.”

          John Quintner would call this intersubjectivity. or the ‘third space’. Here’s a link to a recent blog post on the subject: http://www.fmperplex.com/2019/01/28/intersubjectivity-in-clinical-encounters/

          And I’m going to email those papers to you now! Please stay in touch. I love discussing this stuff and learn so much from these exchanges!

      • Please can you send the papers mentioned above- I am a physio in SA and very
        Much interested in treating patients with the correct “words”

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  4. Wow….just discovered your site while researching the effects of language on our neurophysiological states and healing. Wow. Wow. Wow. Thank you for sharing. You are incredibly insightful and wonderfully articulate. More importantly, you are prepared to share your story with transparency and vulnerability. Thank you, thank you thank you🙏🏼🙏🏼🙏🏼

    Keep on writing, we are listening with hearts wide open💜
    Anna

    • What a wonderful message to receive today, Anna! Thank you for your kind words, encouragement, and support. They mean more to me than I can express. It’s so cool you discovered my site while researching the effects of language on our neurophysiological states of healing!

      What a fascinating realm to explore. Language and meaning are so important to me, even more so as time goes on and I reflect on my own path through pain and healing. I recently wrote a chapter for the second volume of Meanings of Pain where I was able to explore and reflect on language, meaning, and story more than I ever have before.

      I would love to learn more about why you were researching such a topic and hear what you’ve found!

      I’m so appreciative of this message. Thank you for taking the time to connect. And for listening with your heart wide open. I’m beyond grateful 💜🙏

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