Careful and Kind: Talking with Dr. Victor Montori

Victor Montori, MD, MSc, works at the Mayo Clinic in Minnesota as a diabetes doctor. He graduated medical school in his hometown of Lima, Perú, and completed postgraduate training at Mayo Clinic in the U.S. and at McMaster University in Canada. Considered a “a patient’s doctor,”, Montori received the Karis Award, a patient-nominated recognition for his compassionate care. A researcher in the science of patient-centered care, Montori and his colleagues have authored over 500 research articles. At 39, he became a Professor of Medicine. Today, Victor is one of the most highly cited clinical researchers in the world. 

In 2016, Victor founded The Patient Revolution, a nonprofit organization to transform industrial healthcare into careful and kind patient care for all. And here on the Patient Revolution blog, we're talking with Victor about the origin, implementation, and overarching aims of the Patient Revolution.

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Q.  Dr. Montori, thanks for chatting with us today.  Could you introduce yourself and share a bit about your involvement with The Patient Revolution?

A.  I am Victor Montori, diabetes doctor and professor of medicine at Mayo Clinic in Rochester, MN, USA. With friends and colleagues I research patient-centered care and in 2016 founded the Patient Revolution. Today, I chair its board.

Q.  What does The Patient Revolution mean to you?

A.  It is a grassroots effort to upend healthcare, to take it from an industrial machine to a human system of careful and kind care for all. At the system level, healthcare must become accountable to the patient and support the front line of care; it is not about the payers or investors, it is about the patient. At the level of care, the system needs to care always not by accident, and avoid being cruel. Both can be achieved by noticing patients, seeing them — they biology and their biography, the content and context of their situation — in high definition, by treating each person kindly as one of our own, and by responding scientifically and carefully to their situation. The system can support this difficult work by removing from care environments distractions set in place to achieve industrial goals (like documentation and billing routines) and by creating the opportunity for unhurried encounters in which care can flow without friction, elegantly.

None of this will be possible if what animates the healthcare system is greed. Rather we need to build patient care on solidarity, on the notion that we are on the same boat, on the idea that collaboration is better than competition, and on the recognition that the fate of our human adventure depends on our common fate. These are fundamental changes, not subject to reform but in need of a revolution. I expect these changes to be brought about about by the organized actions of citizens, patients, and students. A patient revolution. Professionals, many trapped cogs in the machines, will eventually follow.

Q.  How do you see the Patient Revolution next week?  In a year?  Five years from now?

A.  As we talk, a book Why We Revolt, and the first medical student chapter of The Patient Revolution are coming together. Activities in communities and in clinical encounters, and work to develop the basics of the movement represent our current reality and urgency. I don’t think we will be much further in a year - I expect many more people will be aware of our work, will have read the book, and will have formed local citizen chapters. In five years, i would expect to see that our language and the actions it should inspire will be noticeable as new care systems and experiences intentionally bloom everywhere. Change will become unstoppable. Within ten years, I would want to see most people receiving care in a dramatically different system, one that is careful and kind.
Q.  How can clinicians get involved in helping create careful and kind care?

A.  At the frontline, clinicians can fight their own sense of impotence and believe in a better practice. They should reflect on love in their practice, work with their colleagues to have time to reflect and dialogue making their practice deliberately elegant. They should engage with frontline and support staff to ensure every patient is noticed, that everyone is fully present in every interaction, and that the patient’s needs are first in everyone’s priorities. They should forgo actions that take their time and energy but only produce income to them without benefit to the patient. Instead, they should work to reduce the healthcare footprint they, their care, and their system imposes on people’s lives. And they should be more vocal - in their practice, in their community, on social and regular media, in the political process, and armed with a stronger and collective voice, one that perhaps is still trusted, clinicians must tell their stories and invent new ways of imagining care, ways that turn away from industrial healthcare and toward patient care.

Q.  How can patients make a difference in this efforts towards careful and kind care?

A.  I always hesitate to ask patients to do more. As we fall ill, what we want and need is to wrapped in care and love to help us heal, of if incurable, to help us adapt and thrive. We need strong relationships to fall back on when we experience adverse outcomes, and a community to lift us up when we are in need of recovery and regeneration. But, because we have developed a sense of what the system can do, patients can also give powerful testimony, tell stories of wonderful care, even when surprising and almost accidental, and of incidental cruelty. Patients can also tell us stories of what happens in their lives, the consequences of the industrialization of care, and shine light on the opportunities for innovation that exist when we focus on their care, and not on the business opportunities set up by payers and investors.

Those who have enough of their health must speak up and motivate others to join, their stories reminding the rest of the amazing transformations we can accomplish when we collaborate and we stop seeing the realities of today as immutable. Movements have a way of collapsing under their own weight, of becoming focused on their own importance - patients will keep this movement’s momentum forward, its intentions honest, its message coherent. I believe the revolution will be led and powered by patients, by citizens, not by professionals. I believe we will prevail.

Are you interested in joining the Revolution?  You can sign up for our newsletter here and receive the latest from the Patient Revolution team every month.  You can also share your thoughts over at the Patient Revolution Facebook page or on Twitter, tagging @patientrev in your reply.  And for more from Dr. Montori, you can follow him on Twitter @vmontori.

Patient Perspectives: Improving the Clinical Encounter

What would improve your experience at the clinician's office?  We asked this question of several chronic illness patients and their caregivers, and while the health conditions in play were diverse, a few common threads emerged in their answers:  empathy, respect, and experience.

Stacey, mother of a child with type 1 diabetes, ""Hi, my name is..." I'm amazed how many pediatric nurses don't do this. Please don't touch my kiddo until you say hi and introduce yourself. As a parent of a T1D child, I find myself constantly teaching him respectful ways to assert himself at checkups, etc."

"I'm torqued before I even get to see the clinician," offered chronic illness patient Christel.  "'Here's the paperwork you need to fill out in pen with all of your medical history.' Wait 45 minutes. No idea what's going on, because when you ask, the front desk people say they have no idea what's going on and when I'll be seen. Put in an exam room and the 'pre-show' begins: No one reads the paperwork. Everything I've just written down is asked again - without looking at the paperwork. And then ... stuck in an exam room with no idea when you'll be seen because the last person says the clinician will be in to see you in a 'little while.' I get that they're double and triple booked - I get that clinicians are under tremendous stress - I get that the system is broken, but until you solve the front end before you see the clinician, the system will stay broken."

Sarah lives with diabetes and feels that more time would improve the relationship most of all. "More face to face time so that the doctor or CDE can not only suggest changes but also an open discussion time to go over their thought process to achieve [those changes]." 

People living with chronic illness repeatedly brought up the need to be heard by their clinicians - to be heard and to have their health issues seen in a realistic context.  Emily, a patient with chronic illness, shared, "Not being talked down to and being asked ridiculous questions, like 'I see your sugar was 350 on jan 27th, why is that?' That was 3 months ago, I have NO Idea."

"Check the judgement at the door - yes, you have a medical degree but I am the one living with the disease," said Stacey, who lives with multiple chronic illnesses.  "Respect that and the fact that I may likely know my body better than you do so please be a partner in my care not a dictator."  And fellow chronic illness patient Kate added that she wants to have her concerns heard and acknowledged, not dismissed. 

Renza said, "Also, maybe some information about online and face-to-face peer opportunities, where I can find stories of others living with the same condition so I don't feel like I'm the only one navigating this thing, and an understanding that while I may be there to see them about diabetes, diabetes is not the only thing in my life."

Patients want to be seen as people, and to have their healthcare experiences delivered and received with care and kindness.  They want their time, concerns, and lived health experience respected and valued as much as their clinician's agenda.  Unfortunately, many of the responses showed a lack of kind and caring healthcare, or even an awareness that people deserve this level of empathic care in the first place.  Karli, a caregiver, said, "Your questions lately are raising my blood pressure. I didn't know I had so much suppressed rage about medical care. It also makes me realize that no one ever asks these questions!"

Not all clinical encounters are difficult.  Good clinician/patient relationships exist, and are highly valued.  One patient equated finding the right clinician is like going on a date.  "You need to find a good fit, personality wise, that you can trust with your health concerns.  That person needs to have a connection with me, not simply an understanding of the specifics of my disease."  Briley, living with chronic illness since childhood, added, "Right now I wish for immortality of awesome providers so they didn't need to retire." 

There is a common thread in all these stories; how meaningful it can be when you feel seen and heard and how disappointing it is when you don't. 

Do these stories resonate with you? Have you ever thought about sharing these feelings with your clinician? What do you think would happen if you did? Give it a try with the Plan Your Conversation Cards (printable version and digital edition) and tell us about it.

Share your thoughts over at the Patient Revolution Facebook page or on Twitter, tagging @patientrev in your reply.

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Simulations for Empathic Care Workshop

In collaboration with Columbia University's Digital Storytelling Lab, we hosted a workshop to explore how simulations could be used to help patients and caregivers develop skills and prepare to navigate care for themselves or those they care about.

Simulations are a common tool in clinician training giving medical students a safe space to practice the art of diagnosis and communication with patients. We think simulation could have benefit for patients and caregivers by giving them spaces to experiment with how to share and hear challenging information. 

Some feedback from people who participated:

“What amazed me was how differently we all think. In a group of five of us working together our different minds turned things inside out and upside down, each of us looking through our own unique perspective. When you open yourself to using and building on that, solutions you would not have seen somehow magically appear.”  

"The event was excellent.  It infused creativity and down-to-Earth creativity into a challenging and highly sensitive field.  Some of the ideas conceived (i.e. situations game, apps, plays) were very cool and gave a good idea to simplify and ease into healthcare situations."

"I was inspired by the groups of people who were actively seeking alternative viewpoints, hoping to make the healthcare experience something that focused on patient well-being and whole-person care instead of checking boxes on a form.  As a patient advocate, I feel the clinical encounter can be changed - for the better - by empowering patients to raise their voices."

A look at some of the simulations that were created at the workshop:

The "breaking your leg while skiing" simulation allows patients and caregivers to explore issues related to accidents, navigating care away from home, dealing with family and friends, and managing insurance and out-of-network care experiences.

The "navigating uncertainty" game allows people to consider their resources and then respond to health events that added to and subtracted from those resources (Like the game Life but with more of a health and resilience focus)

The "shake it like you care" simulation is an app and community game that takes people through exercises to 1) build skills around awareness of who needs care 2) practice asking for care 3) practice offering care.

Caregiving Day 1 to Day 30 considers intense caregiving episodes like those at end-of-life or after significant episodes. The activity gives people exposure to the types of discussions and decisions that will likely occur and how the experience will change over time. It introduces the idea of inner voice and outer voice (What you’re thinking and what you actually say) as a tool for the complex feelings that can accompany these moments

The "what to expect at the fertility doctor" simulation gives people (women and partners) exposure to the practical and emotional experiences that will make up their engagement with a fertility clinic with a particular emphasis on how it might change over time.

Storytelling is a huge part of the life experience and should be a bigger part of the healthcare experience. Let us know if you think you or people you know would benefit from these kinds of simulations - or if there are others you can think of that would help you develop and hone the skills you need to advocate for yourself. Thanks to everyone who participated and to our partners in creating and delivering this event

Things our team can't stop thinking about...

This post contains highlights from our first newsletter which just went out. if you'd like to make sure the next one arrives in your inbox, sign up here

Matt Maleska, co-director, can't stop thinking about ProPublica's investigative report on the large number of unexpired prescription drugs thrown away each year. "The story is such a powerful example of a systemic problem in clear opposition to our values, but held in place by habit and regulation. And then you have Iowa who did something about it. A reminder that change can happen when the forces start moving in the same direction."

Victor Montori MD, chair, is thinking about The Enigma of Reason. "I can't get out of my head the notion that the most intellectual and intimidate of our cognitive functions, reasoning, may have evolved for use in groups. This would mean that certain forms of cooperation to make sound decisions such as deliberative democracy in politics or shared decision making in medicine may be using our brains optimally, and that situations or procedures that force people into reasoning alone (traditional medical model, university education, suffering) may disadvantage the loner. "

Maggie Breslin, co-director, has a game called Hello on her mind. "Hello, created by the Common Practice team, is a conversation game about living, dying, and what matters most.  I had the chance to play with some medical students a few years ago, and I remember being asked, 'What would be on your tombstone?'  I responded, 'She chose her battles.' I wonder what these participants will take from their experience." See a video of the event for a glimpse into the simple intimacies Hello fosters, and how powerful and beautiful those moments can be. 

How do we make evidence care?

The Patient Revolution chair, Victor Montori, gave a talk at EvidenceLive about how relying on data and guidelines alone to direct treatment decisions ignores a critical and significant part of the care equation.

Patients - Watch to understand how telling your clinician about what is going on in your life can transform the care you receive.

Clinicians - Watch to be reminded of how understanding a patient's context can allow you to apply guidelines and treatment options in a way that fits into a patient's life.