Physical Therapy and Patient Experience
The hard lessons shaping the future of health care
A few months ago, Jerry Durham and I were discussing what we could write together to inspire newly graduated PT’s as they started their careers. Something weird happens when you have seen patients day after day for years. You start to think you know stuff, and that you should be sharing that with the people that are joining you there. As usually happens, things got stuck along the way, and we got stuck. We got stuck because we wanted to hear from our patients what was awesome about seeing a PT, and how we helped them. The answers we got back were more “opportunities for growth” lessons, and coming from the people that we serve, these are most critical.
Whether you’re a “physiotherapist” or a “physical therapist”, we’ll use PT interchangeably. It only matters where in the world you studied as to the name that you use. We’re all here to work on pain, movement and keeping people healthy and happy. Except, we haven’t done that so well up to this point, or perhaps we’ve done it to a certain level, but we’re ready to step up to help our patients better.
What does PT really do?
PT is a profession at a cross roads. If you were going to join us, and study PT, I’d warn you that you’re about to walk in to a minefield. A large number of my graduating PT class have become MD’s to have a more “credible” profession, yet our skills are critical for pain management. This is a huge area of healthcare need and deficit. Pain management is a minefield of fear, uncertainty, blame and well, pain!
That uncertainty is the opportunity to redefine ourselves professionally, and where we fit in to the health care system. Describing what we do is something we’ve often struggled to do well — and without a definition we’ve created a situation where patients don’t know what to expect from us. At the least, they should expect to be heard, understood and appreciated as a person, and a solution to their problems co-created and designed to fit in to their specific life situation. To create the solutions requires us to define what we do. We are treating your nervous system, your brain and your life situation — and the pain that causes you to come to us for help is unlike anyone else’s experience.
So many times I have tried to run away from this profession. Some of the detours have been successful, others were “what not to do” experiences. There were times when I worked in catering companies or selling books, rather than seeing patients, because this work is hard. Burnout is creeps upon you in sneaky ways.
What I’ve come to learn is that in PT we’re detectives of your nervous system — helping you to decode your experience and find the places for change and retraining your brain before you change your body. Knowing the anatomy and physiology is only a bare minimum. We must know people, we must do the emotional work, and manage ourselves because you don’t get to have a bad day. We are the most powerful tools we have to help people that come to us for help, and if you can’t give empathy and compassion, you might be the nocebo that stops people from getting better. We have to listen to people’s stories, even when they’re uncomfortable — and patients can tell us where we need to step up to do better.
Remembering the Human Connection
I asked Alan Brewington how PT helped him along his journey with arthritis. Alan is a consistent and uplifting voice supporting people along the way with arthritis, and he is no stranger to the PT clinic. His response to my questioning was to direct me to this story he had written. It broke my heart to read about Alan and his PT, and the problematic line of friendship and professional relationships. Alan tells the story of feeling abandoned and betrayed by his PT, who he trusted and relied on. He tells the story of developing a close professional relationship, only to have that broken up by insurance, and perhaps as a response to Alan not getting “better”. Working with people as a profession is about partnership and trust, and honouring the connection that we make with them. We ask people to be vulnerable to us, and open up their life experiences as well as their joint ranges of motion — and we need to acknowledge the two-way nature of that. It is an “odd job” as Alan commented, ‘sometimes you are an interpreter for the patient, for the patient to doctor, drill sergeant, ass kicker, friend, and shoulder to rest on.” Alan implores us to meet people where they are at, and know that we “can’t be everything to everyone and that’s just a part of the human experience.”
See, the tough thing is that Alan has chronic pain. He is one of those amazing people that has pain, AND manages it every day. Alan lives a big and engaged life in spite of his arthritis, and makes it his mission to help others down the same road. What he asks from us as a profession is that we hear his story, meet him where he is at and help him in the way he needs us to, to get through this flareup, and minimize the next one.
Have we been making pain worse?
I asked Joletta Belton about PT. She’s another of our chronic pain patients who spiralled right down to a place where her pain became everything, and a meaningful full life lived in the past. Joletta has lifted herself right back up to a place where she is now empowering others to do the same, but as a profession we didn’t help her get there. She had to fight and struggle to find the right information and people to help her get better — which she finally did at the San Diego Pain Summit. Since that time, Jo has been sharing her stories, insights and glorious photographs taken literally along the road to the active and healthy life she has reclaimed. It’s been a rough road.
“I wish I could say I had a positive experience, that PT helped me reduce my pain, but unfortunately that was not the case. I’d had arthroscopic hip surgery after over 13 months of being in pain. I thought that was going to fix me. It did fix my anatomy, but it didn’t fix my pain.
My PTs never asked questions about how the pain affected my mindset, my relationships, my life. They never asked about what the pain was limiting me from when I was outside the clinic, what I was worried about, what I believed about my pain, and how I saw my future. Instead it was always pain scales and strength tests and measuring ranges of motion. The idea that my hip was “weak” was continually reinforced, but I was never weak to begin with. I had been a firefighter, a runner, a heavy lifter. I’d had excellent range of motion post-operatively, which got better, true, but was never poor to begin with. I could perform every functional task thrown my way. I was doing step-ups to the treatment table and single-leg squats on the Bosu ball. All the while I had debilitating pain. Sure, I could tolerate it during therapy, I wanted to be a good patient. I wanted to do what was asked and do it well. But while I could function at the clinic, at home I was wiped out, exhausted from the pain, paralyzed by my uncertain future.
At home the pain became everything and nothing else seemed possible. Home was 166 hours of my week, the clinic only 2. In those 166 hours I was constantly worried: worried that I messed up my surgery, that I wasn’t healing properly, that I was doing damage with every ‘wrong’ move, ‘wrong’ posture, doing damage with every step, with every bit of hip flexion that hurt. I had to be doing it wrong, after all, or else my movement, my posture, wouldn’t have needed to be corrected in therapy, right? If I wasn’t doing it wrong, my pain would be better, right? And I was never once told that my pain might not be tissue-based, that pain didn’t equal damage. I was never once told that maybe there was something beyond posture, strength, and biomechanics going on.
But my pain was not a lack of strength or poor posture or a limited range of motion. My pain was not a 7 or 9 or 4 out of 10. My pain was not aching or stabbing or shooting or pins and needles. My pain was in every aspect of my life much more so than it was in my hip. And with no explanation as to how pain can persist long after healing takes place, long after strength returns, long after range of motion is restored, I was left confused, uncertain, worried, I was left blaming myself for not getting better, and the pain got worse. And when the pain got worse, I’d get passed along to the next PT, the next modality, the next treatment. I was a difficult case.
If just one PT had told me that pain wasn’t in my tissues, that pain doesn’t equal damage, that it’s more complex than that, especially the longer we’re in it, it may have saved me years of suffering. If one PT had asked how pain was affecting my life and helped me to work to overcome those perceived barriers, I may have realized it wasn’t the pain that was limiting me, it was my beliefs, my expectations, my fears. If one PT had treated me as a person rather than as a difficult case, a problem to be solved, perhaps my suffering would have ended sooner.”
Changing the Pain Experience
The truth is, health care collectively has done a bad job with persisting pain. Any pain that flares up from time to time, but is ok if you stretch and stay fit? Yup, that’s still chronic pain. It’s a disease of the perception of brain and your nervous system perceiving greater danger to you than is actually present. There is no separation of mental and physical when treating the body — even with a simple ankle sprain. You can have phantom limb pain when the previously painful limb has been removed — and it’s still excruciatingly painful.
One of the problems that we’ve had in helping you is that we haven’t used the right language and helped you make sense of your pain. We’ve been stuck in a model of injury and damage, which we now know is incomplete. We have a way to go to help change this status quo, in our everyday practice and as a profession advocating for change in health care. We’ve helped a lot of people, but perhaps not for the reasons we think we have.
We have specialist “Pain PT” but pain is literally the pain point for which people come to see us. Our job is, as Alan say, a “weird one”. We’re part “Brain Hacker” — we’re detectives of the nervous system working alongside the people that come to us for help. We’re also “Hope Dealers” and storytellers helping people to re-wire their brain, self concepts and behaviors, and make sense of their own stories. Our patients expect that we know our “stuff “as a bare minimum. The assessment, diagnosis and treatment is expected. We need to make sure you get the “Why” right. Why do we do what we do? Our job is to break down the pain experience and come face to face with the human stuff first — the vulnerability of needing help, the anger and frustration at a body that won’t play anymore, and the fear of what this pain might mean for the future.
Doing it Better with flareup.io
Today is World Physical Therapy Day. September is also Pain Awareness month. I’ve been collecting and reading stories of people living with pain in PainTalks, and talking with people on Twitter. We can’t sit by any longer without making something that gets pain management out of the clinic and in to people’s lives. It’s a small start in the right direction, and we’re keen to see if you’d to be a part of what we’re making in digital health and pain management. We’d love you to check out flareup.io and join us there on our journey. Signing up for our email list is a tick for us that we’re making something that people want.
Our mission with flareup.io is to be able to break apart the clinical interaction, and help people with pain find their story and the meaning around their pain. Creating understanding is critical for creating the conditions within brain and body for pain to change, and for life experience to get better. We know from our Paintalks stories that getting better is a personal definition and is tiny steps in the right direction to reclaim life and living from the pain experience. Similarly, as a profession PT can get better little by little — and we’d love you to join flareup.io to tell us this is a step in the right direction.