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

Turning towards careful and kind patient care

Listen to Victor talk about a patient revolution for careful and kind patient care on the Health News Review podcast. 

CLINICIANS: Consider sharing a short clip from the podcast in your next all-staff meeting. Maybe the bit about time at the 8:50 mark? What would it mean for us to think about time differently? How do the time limits imposed by industrial healthcare impact your ability to care for your patients?

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I worry about being judged...

Fear of being judged is a strong motivator for not speaking up.  Sharing a story you are not confident will be well received requires making yourself vulnerable and potentially being challenging to someone in a position of power and from whom you are hoping for care and support. Let's start by acknowledging that this is really hard. And that it can be the most powerful way to puncture the cloud of assumptions that surrounds most patient-clinician interactions.

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Someone recently shared the following story through our interactive Plan Your Conversation tool. 


1. I want to talk about...
getting a wheelchair

2. It is important to me because...
I need to be able to get around better and do more things, and I think a
wheelchair will help me do that. For instance, I don't go to large medical
buildings, or events at my nieces' schools, because it's too far to walk.

3. It might help you to know...
that even though I appear to be doing ok at appointments, it's because I'm
sitting down and had some quiet space before you came in, there is not
extra noise in here to distract, I decreased how much I did in the days
previous to coming, and I will spend extra time in bed afterwards.

4. I want this conversation to lead to...
a recommendation for a wheelchair fitting.

5. I’m nervous this conversation will lead to...
being told that a wheelchair is not good for me because you are worried I
would do less. However, I think a wheelchair would help me be able to do
more.

A little bit of storytelling can make the assumptions so easy to see. The clinician may see wheelchairs as a mechanism for doing less but for the patient, they could be a way to do more. The version of the patient that sits in front of the clinician during a visit isn't the everyday patient. For those visits, the patient takes care to present their best self, making compromises in other parts of their day to make that happen.

I hope the person that submitted this is able to share this with their clinician and I hope it leads to a rich dialogue in which all the options and trade-offs are discussed. Maybe this person ends up with a wheelchair fitting and maybe they don't, but I can only imagine that a conversation in which this story is shared and truly heard would be one that reflects as least some aspects of careful and kind care. 

Our Barrier Cards explore the reasons why patients often don't share the things weighing on their minds or stories about their lives during their visits with their clinicians. Many of the tools and programs developed by The Patient Revolution are designed to help patients and caregivers find their way over these barriers. Do you have a story about a time when you felt judged or didn't share information with your clinician because you were worried about being judged? Tell us. 

MedX: Empathy, Patient Stories, and Empowerment

"Medicine X is a catalyst for new ideas about the future of medicine and health care. The Medicine X initiative is designed to explore the potential of social media and information technology to advance the practice of medicine, improve health, and empower patients to be active participants in their own care."  - Medicine X website

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Last month, the Patient Revolution team was at the Medicine X (aka MedX) conference in Stanford to facilitate a workshop "An Exercise in Empathy: Creating the space for careful and kind care."  The workshop was amazing, with a small but nimble group of attendees joining in for a conversation centered on a series of empathy cards.  The conversations were rich and helped shine an empathetic light on different perspectives, breaking down silos and barriers and helping people see one another as people, despite societal labels like "patient" and "doctor."

Patient Revolution director and MedX co-presenter Maggie Breslin said, "it was great to bring together a group of patients and clinicians and create a space for them to reflect on and share about on their own experiences. The places of agreement, the moments of disconnect, they all spoke to the complexity of care and the reasons why scripts and standardization will never be the answer to helping complex people manage complex lives."

Co-presenter and Patient Revolution board member Kerri Sparling agreed.  "After 31 years of living with type 1 diabetes, I know that empathy breeds better understanding and ultimately a better healthcare experience for everyone involved.  I'm excited that the Patient Revolution is helping change the clinical encounter from the ground up, empowering patients and doctors alike to see one another as real people with an emotions invested in health outcomes."

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But the Revolution team wasn't just there for the workshop; we were taking in the main stage talks, attending workshops, and chatting with patient advocates in attendance.

"I found the variety and scope of patient voices to be a real success of the conference, particularly those that were challenging in some way to a traditional and/or clinical point of view," said Maggie.  "Alice Wong's talk which asked who gets to decide how gene editing is used and which disabilities are allowed to exist was the most resonant of these for me. It was a reminder that suffering is not binary and exists along with joy and fullness and that making assumptions about someone else's experience almost always sets you up to be wrong."

Maggie was also impressed with how patients are taking the lead in changing healthcare.  "Dana Lewis' Open APS project was a powerful example of patients developing products in line with the principles of Minimally Disruptive Medicine - to respect patient capacity and minimize treatment burden. Seeing the work to make that a reality, despite all the barriers set up to make it hard if not impossible. I found it really inspiring. A testament to what people can do when they push on the system."

"It really is something to see patients take the stage and tell their stories.  So much of what I've experienced in healthcare sees the clinician's perspectives as 'the right perspective,' not taking the patient's lived experience into account when assessing treatment options, next steps, etc," said Kerri.  "People talk about how patients are at the center of healthcare but the reality is that we're barely considered part of the hierarchy at times.  I'm excited to see a real revolution take place, where patient voices are as dominant as all other stakeholders, speaking their truth without hesitation or fear."

The Revolution is here.  Are you ready?

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. 

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...

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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.