Opening the Conversation

A few weeks ago, I did the first progress note for a patient that I’d seen for a little over a month. He has a progressive neurologic disease that has been taking its toll for 24 years. He has been in and out of therapy the whole time, trying to preserve function, maximize his available mobility, and hold on to some quality of life/independence. He’s kind of a tough nut to crack, but we have both been working hard at our therapeutic alliance, and I’ve come to appreciate who he is as a person. I respect his wishes to work on just one muscle group at a time and avoid all fine motor activities. In return, he respects my wishes to avoid all 4 letter words and refrain from shouting about political issues. We got off to a rocky start, but we’re building trust and learning about each other’s communication styles.

As expected, he didn’t have a miraculous recovery to display at this progress note, but I was excited to see that he did make some small improvements in strength, endurance, and sitting balance. This gave me hope that we were on the right track and that he might be able to regain a little independence with things like feeding himself, holding his head up for longer stretches, and assisting with transfers. So, I shared this with him. “Ok, good news! Your right arm got stronger, your left leg got stronger, and you’re able to sit for way longer without falling over or asking for a rest. I think we should keep moving forward with our treatment plan!” And this tough nut, who likes to curse and rant, cried real tears. He shared with me that no therapist ever has told him that he actually made progress. He described the way that they always remind him about the goals he didn’t achieve, the independence that he does not have, and the progressive loss of function that characterizes his diagnosis. He said, “And they tell me all this every damn time, as though I don’t live in this body every day. I KNOW what I can’t do. Believe me, I know. But to have someone tell me we might actually be getting somewhere, even it’s just to scratch my own nose? You might be blowing smoke up my ass, but I can’t tell you how amazing it is to hear a little positivity for once.” I told him to keep up the good work, tweaked his home exercise program a little, discussed some ideas for things we might work on during the next reporting period, and sent him on his way.

That was 3 weeks ago, and I haven’t stopped thinking about our exchange. Research tells us that what we say as clinicians matters. Patients who receive compassionate care from providers have wildly improved outcomes, in a wide range of fields. Patients who receive information in positive language feel better and improve faster. Treating people with compassion and kindness actually improves health outcomes for the providers as well. So why has this man received 24 years of physical therapy without a single message of affirmation and validation of his efforts? Why do we, as clinicians, deny our patients better outcomes and deny ourselves the psychological benefits of being kind and protection against burnout?

Maybe his therapists worked in busy outpatient clinics that primarily treat orthopedic conditions, so they felt uncomfortable and unsure of how to proceed with his care. Maybe they were expected to see patients every 15 minutes and didn’t have enough time to allow for slow, incremental progress. Maybe his therapists were put off by his personality and communication style and were in a hurry to get him out of their clinics. Maybe they were unaware of the ways that compassionate communication can enhance physical progress. Maybe the billing department didn’t understand how to appeal insurance denials to get access to further therapy for patients with progressive, degenerative diagnoses.

Does it really have to be like this, or could we re-imagine a system in which clinical AND business decisions are made with compassion at the root? What if we included compassion training in medical education, as a way to optimize patient outcomes in adjunct to medical interventions? What if this patient of mine, receiving nothing but negativity for 24 years, had received validation and compassion in his first few rounds of physical therapy? How much better might he be today, after decades in a system that served to support him rather than cut him down?

I want to explore this idea of intentional compassion as a way of moving through life. I want to examine some of my interactions with patients, experiences as a therapist, observations as the wife of a physician, and as a human in the world. I can think back on my 7 years as a therapist and 12 years working in medical offices to almost infinite examples of care that minimizes the patients in front of us rather than using language and compassion as a modality to improve patient outcomes. And, as a provider, I can think of just as many instances of my employers treating me as just a cog in the wheel, rather than as a person whose performance can also be optimized with a compassionate, humanitarian approach. Sometimes, especially when I feel overwhelmed and undervalued, I race through patient interactions just trying to check all the boxes rather than actually seeing the person in front of me. As I have watched my husband go through 10 years of medical education and training on the way to becoming a physician, I can think of even more examples of these toxic environments that serve only to dehumanize and burn out aspiring providers.

I invite readers to think of experiences as patients where compassion was either painfully absent or served to enhance your medical treatment. I also invite readers to think of experiences as providers, where you were able to augment your medical care by showing up with compassion, or where you were too rushed, frazzled, or burned out to be present and act with empathy toward your patient. As I share and re-imagine my experiences, I would love to hear your stories and re-imaginations. Let’s use conversation and community to support each other.