“I couldn’t have gotten this bad without medical help.”
I recently uttered those words to a roomful of PTs, leading to a collective GASP. Someone (me) had just sucked all of the air out of the room.
This happened when I spoke at the APTA’s Combined Sections Meeting in Anaheim on the patient panel. I’m excited to have been invited to guest blog here this month, in the spirit of patient-centeredness. I suffered from disabling, chronic pelvic pain for more than a decade. These days, I am a healthcare attorney in Chicago, focused on helping providers (mostly PTs) establish their own client-centered practices, and I also do extensive healthcare advocacy work. My perspective in this post therefore finds its roots in my experiences as both a patient and as a professional.
Give the people what they want.
Unless you have had the traumatic experience of living in pain, you do not understand it. Such illnesses obliterate all of one’s vigor and create a witheringly ill “professional patient.”
But because many are fortunate to avoid this experience, really listening to patients is the best way to hone your empathy and begin to fathom what it means to live in chronic pain.
I lived with horrific, consistently worsening pelvic pain for nearly 12 years. I saw countless providers, each of whom added their own element of chaos to my condition, which was rapidly spiraling downward. I’ll give you an example.
I approached one pelvic pain physician with symptoms of intermittent stabbing pain. She prescribed me more and more medications over the year she saw me, including several topical medications. My skin became incredibly inflamed, and my pain skyrocketed. She upped their dosage and frequency. I got worse. Fast-forward two years to my first appointment with my current and final pelvic pain physician in Chicago, Dr. Frank Tu. He suspected a dermatological reaction to those meds and stopped them immediately. After two months, my swollen tissues gradually reduced in size, and the heightened sensitivity followed. I’ve since discovered that I’m allergic to the preservatives used in most liquid and topical medications.
Why hadn’t my previous doctor even considered that her treatment might be contributing to my pain rather than helping it?
The answer: she wasn’t introspective in her treatment.
She didn’t critically evaluate those decisions and thus didn’t note that I was rapidly deteriorating under her care. She didn’t refer me to another specialist when I kept getting worse. After I cancelled my last appointment, she never called to follow-up about why I disappeared and if I’d found help elsewhere.
So, how can you do better? I’ve got ideas.
Lesson #1: Patients want a provider who is on “their side.”
You can’t help everyone who calls you, and if you feel like you might be doing a patient a disservice by continuing to treat her, then help her find a provider who will be the ally she needs. Your patient deserves to recover as quickly as possible, and she deserves to have you honestly reflect upon your capacity to help her.
A patient needs a provider who is validating and who exudes both confidence and competence. Are you that provider? Maybe you need to realign your treatment approach to ensure your patients feel supported, or to place empathy front-and-center again in your practice. At CSM, I spoke about meeting Dr. Sandy Hilton, my PT who helped me make a full recovery. She did everything right. Some have asked me: “exactly what did she do?” (i.e.: How can I become Sandy?). That misses my point. Sandy is and was human, and while she helped get me my life back, she did what those before her should have done: listened, validated, supported, encouraged. To “become Sandy,” you need to exhibit those behaviors in your own way, which is how they’ll be received as genuine by your patient and how they’ll come most naturally to you. You are not the best provider for every patient. You should be yourself in your treatment approach, and you should focus on manifesting a trusting patient-provider relationship as the nucleus of your practice.
Patients in pain often lack support. You can be an unconditional ally to them and provide validation in a way that those intimately involved in their lives cannot. Remember that watching your patient writhe in pain traumatizes her family and friends, and she may feel alienated, isolated, or misunderstood by them. She might hide her pain to avoid hurting them. She needs you to validate her experience by inquiring about, listening to, and reassuring her.
Lesson #2: Technology is on your side.
When I was in pain, technology was the only way I remained even somewhat connected to the outside world. Going outside my room was too difficult, so I spent a lot of time online.
To help your patients feel supported, you must convey that you are accessible. For a pain patient struggling through a flare, an email with words like “you’re not broken” allows her to read and reread it. You have such an amazing power when it comes to encouraging your patients – as a provider, you’re seen as near-infallible and she’ll take your words to heart. Bolster your patient’s recovery by exhibiting your unwavering confidence in her ability to persevere. When I was a patient, these emails were invaluable; I would read and reread them, and Sandy’s words were sometimes my only source of hope.
I encourage you to disregard your old notions of the patient/professional boundaries, or about whether it’s appropriate to respond to patient inquiries “after hours.” After all, your profession centers on supporting those whose pain knows no boundaries. Build that “after hours” time into the picture when assessing your patient load and your rates. It’s absolutely your responsibility to ensure your own self-care, but it’s also your responsibility to be empathetic to the unbounded wrecking-ball effect that pain has on your patients’ lives.
So how can technology help you through this process? Putting your clinic email securely on your phone makes it easy to see when a patient is in distress. If you don’t have the time or energy to respond in-depth, a simple message will help her immensely: “I’m so sorry you’re going through this. I only have a second, but I wanted to reassure you that you’re not broken, and this pain – while really crappy – isn’t causing any damage. You’re going to be OK. Let’s touch base tomorrow.” I guarantee that if you send that email, your patient will read it more than once and that it will help reduce her panic response to her pain. There are apps available now to streamline this process, and you should select one with which you feel comfortable (and are thus most likely to actually use).
Lesson #3: Reconsider your practice (maybe).
Are you thinking to yourself that these suggestions simply don’t work with your practice? You can’t be emailing with patients on “your time,” it’s too draining to hear patients’ horrible stories of pain all day, you have a waiting room full of hurting people… If that’s the case, my advice is that you get out now.
Do I mean that you should stop being a physical therapist?! Maybe. But you should definitely get out of the “pain business.” At CSM, a provider approached me to explain that when she treats people in pain, she tries not to ask too many questions because hearing about it is too draining. She asked what I thought she should do, and if I understood that side of it. I was horrified and don’t even recall my response.
If you’re doing that in your practice, I plead with you to remember that you’re dealing with vulnerable people who are experiencing unthinkable suffering. If you are “turning off” your empathy when you’re with them, they may be better off without you.
Lesson #4: Determine if you can see patients remotely.
I’m a healthcare lawyer, so part of my job entails navigating the parameters of allowable telehealth practices. For two years during law school, each week, I made an expensive and challenging overnight trip out-of-state for PT. My experience would have been vastly improved had I been able to see my PT via video-conference.
I concede that face-to-face contact is usually ideal. But considerations like patients’ mobility may change that “ideal,” and providers should be prepared to adapt to patients’ needs. For me, it would have been so helpful to use web-conferencing for some guided stretching or to discuss my HEP. Talk to someone (like me!) to see how you can offer telehealth services without breaking the law or your insurance contracts.
Lesson #5: Listen.
Ask questions. Listen until the patient stops talking. Repeat.
It’s both therapeutic and medically-imperative that you listen to your patient’s story before making assumptions about how to treat her. So often, my providers asked me a question and then interrupted my response with their next question. Sometimes, their next question wasn’t even related to what I was saying – it was simply what they needed to know to submit my claim to insurance. In doing this, they missed many important details about my functioning, pain, and goals.
It’s also imperative that you ask questions that may be taboo, like whether the patient has pain with sex. If your discomfort keeps you from asking those questions, imagine how high your patient’s discomfort must be from actually suffering from something so taboo, and having no one even ask about it.
And this brings me full-circle to my first point: patients desperately want a provider who’s an ally, and that’s even harder to find when suffering from something that even providers get squirmy discussing. Try to be that provider whose adaptable, nonjudgmental, fluid treatment approach provides the kind of support that is necessary to help a patient overcome chronic pain.
-- Erin K. Jackson, JD, MA
Erin is a healthcare attorney in Chicago and former pelvic pain patient who now advocates for patients. She and her husband operate their own law firm, where they focus on supporting providers who are establishing and seeking to creatively optimize their practices. If this is you, she’d love to learn about your work. She is also an advocate for improved access to healthcare and speaks about her experiences “in the system.” In her free time, she takes full advantage of her newfound health by rock-climbing, practicing yoga, and running along Lake Michigan with her dog, Crosby.
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