“I am standing behind a set of very bright orange books. Why We Revolt and its author patiently wait to engage holiday-shopping people at the Barnes and Noble store within the massive Mall of America in Minnesota. As I recall that Sunday, one couple stands out.
Against the glitter and color, they appeared gray-scaled, as if they were wearing their black cloud. She was sitting on a wheel chair, and he was pushing it, but both were leaning forward and looking tired. They travelled past my book display, but our Patient Revolution poster caught his attention. He stopped, read a bit more, and then pulled the chair back so that both could read it.
‘Hi there! Do you want to know more about this book?’
‘What is it about!’
A demand more than a question.
As they resisted eye contact, looking down or at the poster, I described the book: ‘It is a series of essays and stories, the first group about how healthcare has stopped caring; the second about careful and kind care.’ I spoke about how we must change healthcare from an industrial operation fueled by greed and often cruel to one based on solidarity and capable of caring with love.
He looked up at me and asked another question-demand: ‘And who is going to pay for love!?’
Before I could answer, they moved further into the store, wheeling toward aisles marked Poetry and Romance.”
Who is going to pay for love?
Victor shared this experience with the Patient Revolution board a few weeks ago, the moment when he was confronted by the concept of monetizing kindness. The Patient Revolution is about bringing careful and kind care back to the patient and clinician experience. It’s about opening this onion of healthcare and finding the humanity trapped inside; no more layers keeping patients and clinicians from seeing one another as people.
When Victor told us this story, I couldn’t stop thinking about it. The board meeting progressed and I was tuned in but there was this nagging thought, the accusatory question of “who pays for love?”
I’m not sure there’s an easy answer to who owns the line item for love, but I have seen the price we pay without humanity as part of the healthcare equation. I’ve seen what loveless care looks and feels like. It's the diagnosis of a health complication given to a computer screen instead of to my face. It's asking if I have insurance coverage instead of "Are you okay?" while my child is sobbing and throwing up in my arms.
Oftentimes, we look at the healthcare system as this giant hydra, all the heads spitting and arms flailing, an insurmountable, unconquerable enemy that we need to dodge and weave to get past. And while “the system” can seem like an overwhelming, daunting monster, it’s not. At the core of “the system” are “the people,” and our voices need to be heard again. Yes, we need to work within the confines of billing codes and scheduling conflicts, of insurance companies and pharmacy benefit managers, but there are small changes that can make a world of difference NOW, without needing to implement huge, sweeping changes.
A revolution is not coming; the revolution is here. It thrives within each patient who is honest with their clinician about their health concerns and who pushes for compassionate care. It grows within each clinician who asks their patient, “Did I get it?” at the close of each visit. The revolution has roots in the relationships between patients and clinicians who see one another as fellow human beings. It can start by feeling heard. And being seen. And it can flourish by being partners in the journey towards good health.
Who pays for love? I remain unsure, but the cost of letting healthcare remain heartless is a higher price to pay than any of us can afford. We need to start truly and openly sharing why love matters in healthcare; it starts with our voices and our stories.
Have you experienced love as part of your healthcare experience? What happened? Did it make a difference? How did you know? Share your story with the Patient Revolution team through Facebook, send us a Tweet, or email us at firstname.lastname@example.org.