The Revolution Will Be Podcasted

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Dr. Victor Montori joins podcast host and patient advocate Christopher Snider this week on the Just Talking podcast.  They chat about Victor's experiences growing up in Peru, defining his medical career at Mayo Clinic’s Knowledge and Encounter Research Center, the importance and value of love in conversations with patients, the reasons for Why We Revolt: A patient revolution for careful and kind care, and the mission behind The Patient Revolution.

You can listen to the podcast by clicking the link below, or by visiting the Just Talking website

Join us for #PATIENTCHAT

On January 26th at 10 am Pacific/1 pm Eastern time, the @PatientRev team will be partnering with @PatientChat for the second #patientchat of 2018.  We'll be using our Reflection Tool to help clinicians and patients alike treat the whole patient.  

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To join the chat, sign into Twitter at 10 am Pacific time/1 pm Eastern on January 26th and follow #patientchat.  We're looking forward to having you join the discussion!

Postcards from a Patient Revolution

What does a Patient Revolution look like?  People in the patient community are raising their voices:

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Want to share postcards from your Patient Revolution?  Send your photos and captions to submissions@patientrevolution.org.  We want to hear from you! 

Be sure to follow us on Instagram at @PatientRevolution, and keep up with the hashtag on Facebook and Twitter with #patientrev.  And thank you for being part of the revolution!

Who Pays for Love?

“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.”

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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 support@patientrevolution.org.

Panel Discussion - Monday, Dec. 18th

Citizen action

Join us Monday, Dec. 18th at 5:30pm ET

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Victor Montori MD

Paul John Scott

Monika Duitch DNP, CNP, RN

Why We Revolt

Café Steam in Rochester, MN will host an engaging panel of on the problems facing our healthcare system and the need for a new model of careful and kind patient care. We will be discussing Dr. Victor Montori’s new book Why We Revolt: A patient revolution for careful and kind care and the actions of a grassroots movement that fights back against industrial healthcare.

Victor will be joined by Paul John Scott and Monika Duitch. If you can't attend the panel in person, it will be broadcast on Facebook LIve.

WIHI: The Careful and Kind Patient Revolution

WIHI

According to the Institute for Healthcare Improvement website, "WIHI is IHI's free "talk show" program that helps health care improvers keep up with the freshest and most robust thinking and strategies for improving patient care." 

And last week, co-founder Dr. Victor Montori, director Maggie Breslin, and board member Kerri Sparling of the Patient Revolution team members visited with WIHI last week, talking about the current healthcare system and how to bring careful and kind care to patients and clinicians alike.

You can listen to the radio show below!

A Patient Revolution Looks Like ...

At the heart of careful and kind health care, we find people talking with and listening to each other. And yet these powerful acts of honest discussion are often dismissed because they seem so ordinary. We want to try and shine a light on the power of conversation and engagement. We want you to draw from past experience and your vision for the future to tell us what a patient revolution looks like.

Maybe a patient revolution looks like a clinician saying "I didn't know that about your life."  (We heard this from a clinician who used our reflection tool!)
Maybe a patient revolution looks like a doctor giving you a lizard to carry around in your purse to remind you to quiet your lizard brain. (We heard this story from a #DSMA twitter chat.)

What does YOUR patient revolution look like? 

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Please share what a patient revolution looks like to YOU by sending your photos and captions to submissions@patientrevolution.org.  We want to hear from you!  And we want to share your stories, because they matter the most. 

Be sure to follow us on Instagram at @PatientRevolution, and keep up with the hashtag on Facebook and Twitter with #patientrev.  And thank you for being part of the revolution!

Tweaking the Truth

How often do you tell the truth, the whole truth, and nothing but the truth at a visit with your clinician?  When your doctor asks, “How often are you exercising,” my inclination is to lean back and move my arms as if I were running.  “Exercise?  Every day!  Nine times a day?  A lot.” 

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Which isn’t always the full truth.  What makes honesty so challenging to achieve in the doctor's office?  Why do patients feel that total transparency isn’t encouraged, or embraced?

We asked some patients for their perspectives, and here is some of what they shared:

“I actually try to be super honest but sometimes I find doctors to be leading with wanting specific answers.  There’s also the guilt. I don't care what the doctor thinks of me but honesty invites more guilt to myself that I'm not doing better.”

“I'm afraid of being labeled ‘non-compliant.’  We have a laundry list of things to do and if I only get nine out of ten done, then I feel like a failure, instead of celebrating the nine things I did well! I struggle with this.”

“I think, for me, I know what I should do. But in reality, doing it every day is exhausting and I get sloppy. But I'm not sure my doctor could ever understand that. So I don't feel I can admit it.”

“Because we know what we are supposed to do, but no one can do the "right" thing 100% of the time and we don't want to be critiqued for it. I LOVE my medical team, but I still don't want them to think I am not 100% perfect.”

Even clinicians found themselves hesitant to share fully during their own visits as a patient.  One shared, “I'm a doctor and even I find myself stretching the truth about how much I exercise when I see my endo. It's almost feel more pressure as a doctor to stretch it because I feel there are certain things expected of me- that somehow I'm not allowed to be human.”

Another said, “My perception, when people lie, is that they've been scolded or "yelled at" for not following their prescriptions perfectly, so they are afraid it'll happen again. Once I validate their struggles, the entire conversation changes. Unfortunately, many clinicians don't have time to do that.”

So none of us are perfect, but we're not sure how much imperfection we're allowed to share before we put our care at risk?


A few years ago, we were working with a primary care practice in New Haven to develop our reflection tool. Two of the questions on the document are....

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  • What is one thing your doctor is asking you to do for your health that feels like a burden or feels harder than it should?
  • What is one thing your doctor is asking you to do for your health that is helping you feel better?

We found that people often put the same thing in both categories.  From the resulting conversations, it seemed they were looking for a way to say "I'm trying" to their clinician. 

"I'm trying to eat better and exercise more. But it is also really hard."

And when they were able to do this, clinicians almost always responded with empathy. The patient's willingness to be vulnerable opened up a space for the clinician to acknowledge that none of us is perfect and making an effort is often the best we can hope for.

So patients - in your next visit, consider telling your clinician what you're trying to do and see if that vulnerability opens up a space for careful and kind care in your visit.

And clinicians, consider what you could be doing to create an environment in which patients feel more comfortable being vulnerable.  

It is a leap of faith to accept another's truth

This story was shared as a response to Why We Revolt. If you've got a story to share about blur or greed or timelessness or love in healthcare, reach out

Image submitted by Paula, representative of the spirit of her story

Image submitted by Paula, representative of the spirit of her story

When my husband was nearing the end of his almost decade long push to stay alive as long as he could, given his terminal cancer diagnosis, he asked me to manage his care with nausea as the primary concern when I knew he was also in a lot of pain. 

His mind was not always clear at that point so I questioned him to make sure he meant what I heard him to say.  He confirmed his request and I did my best to quash the terrible nausea he suffered, before concerning myself with alleviating his pain. 

It was years later in my own cancer treatment I found out how debilitating non-stop nausea is and I understood.

We were in a long term fight to keep him alive.  During that time we perfected our ability to act as a team, with almost mechanical common drive, in all aspects of his healthcare.  We had also promised each other at the beginning of this journey, to be impeccably honest with each other.  

It is a leap of faith to listen to the patient's wish.

-Paula