How Minimally Disruptive Medicine is happily disrupting health care

~ Carolyn Thomas

by Carolyn Thomas   ♥   @HeartSisters

I’ve been on an adventure recently to a magical, faraway place. It was my second visit to the world-famous Mayo Clinic in beautiful downtown Rochester, Minnesota. My first trip there was exactly seven years ago as a freshly-diagnosed heart attack survivor. I had applied (and was accepted) to attend the annual WomenHeart Science and Leadership Symposium for Women With Heart Disease at Mayo Clinic – the first Canadian ever invited to attend. This is a training program that arms its graduates with the knowledge, skills and (most of all) Mayo’s street cred to help us become community educators when we go back to our hometowns.

Thus, a circle that began with me sitting in a 2008 training audience was completed as I became one of the presenters onstage in front of an audience of cardiologists at a Mayo medical conference on women’s heart disease. (Thank you Drs. Hayes, Mulvagh and Gulati for your persistent invitations!)  But long before I took the stage last weekend, I’d been invited to come to Rochester a day earlier to meet with some pretty amazing Mayo staff.

These people included those who work at Mayo Clinic’s Knowledge & Education Research Unit – the KER team (pronounced “care”), led by the charismatic visionary, Dr. Victor Montori.

If Dr. Montori’s name seems familiar to regular Heart Sisters readers, it’s because I’ve spent years writing about his team’s work and quoting him on important concepts like the patient’s “burden of treatment“ (just a few examples here, here, here, or here).

And as physician and KER Unit team member Dr. Gabriela Spencer Bonilla explained to me:

“Physicians can underestimate a patient’s burden of treatment because they’re not there in that patient’s day-to-day life.”

As a 46-year old woman living with a serious chronic illness told researcher Dr. V.T. Tran in a study on this burden of treatment: (1)

“There is stuff that I am SUPPOSED to do, and stuff that I actually DO.  If I did everything I am SUPPOSED to do, my life would revolve around doctors and tests and such and there wouldn’t be very much left for living my life.  So I’ve made a bunch of choices (with the input of my family and friends, because it’s important for me to have their support).”

Some of you know how cringe-worthy I consider the commonly used term “non-compliant“ to describe patients who don’t follow doctor’s orders. But Dr. Montori offers this alternative possibility to his colleagues:

“What if every time we see a patient who is ‘non-compliant’, instead of blaming the patient, we looked at ourselves?  What if the patient who stops taking our medicine, or stops following our advice, is telling us that health care is no longer meeting their needs?”

And as Dr. Montori explained further in a Wall Street Journal interview:

“We’re working to ensure we know what matters to patients. We need to deliver medical treatments in a way that is mindful of the work required in being a patient, and patients’ capacity to get this work done.”

“What patients really want is often not to have better blood pressure or lower cholesterol. What they usually want is to feel better, not die before their time, and be able to do what they need to do to fulfill their obligations and pursue their dreams.”

This philosophy of care requires healthcare providers to embrace something they certainly didn’t learn back in med school – committing to work toward the patients’ goals, not the arbitrary raising or lowering of diagnostic test numbers that are most likely the physician’s goals.

Almost every day, for example, I hear from my readers whose drug side effects are making day-to-day life truly miserable, yet whose cardiologists remain pleased because those target blood test numbers are being lowered “successfully”. The patient’s quality of life is thus considered secondary to meeting arbitrary surrogate endpoint goals like focusing on test result numbers.

In an innovative approach that is nothing less than an utter transformation of medical practice, Mayo Clinic’s KER team has evolved the concept of Minimally Disruptive Medicine (MDM) – and it will require what Dr. Montori calls a “patient revolution“.  In a nutshell, MDM asks this simple question about your health care:

“What is best for you and your family?”

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A 2009 paper that Dr. Montori co-authored with Drs. Carl May and Frances Mair called “We Need Minimally Disruptive Medicine“was named earlier this year one of the 20 most outstanding papers of the last 20 years published in the prestigious British Medical Journal (BMJ).

When I first wrote here about Minimally Disruptive Medicine, one of my Heart Sisters readers protested.

She was alarmed because women heart patients are already known to be under-diagnosed (and worse, under-treated even when appropriately diagnosed) compared to our male counterparts.  See also: Cardiac Gender Bias: We Need Less TALK and More WALK

This patient believed that she’s already been the unwitting target of such “minimal” health care and wanted no part of minimizing anything else about that care. 

I think it was that word “minimally” in the term Minimally Disruptive Medicine that may have frightened her off at first.

But keep in mind that, as Dr. Montori’s colleague Dr. Frances Mair once explained, the concept of Minimally Disruptive Medicine is NOT about providing minimal care to patients.

Instead, it’s about offering you minimally disruptive yet maximally supportive health care – care that helps you to pursue your own goals as a patient, while minimizing the health care footprint on your life. It’s about reducing your burden of treatment as a patient, and improving your quality of life.

To get the care that is best for you and your family, Mayo’s KER Unit team suggests that you deserve two important things.

  • The first need is health care that is careful – delivering the care that you need, not more and not less, just right, the first time, both safe and of high quality.
  • The second need is health care that is kind – respecting your limited resources as a patient (including time and energy) and also respecting your unique goals and aspirations.

One of the newest and most innovative tools developed by the investigators of Mayo’s KER Unit team is called the ICAN tool (Instrument for Patient Capacity Assessment).  ICAN is a discussion aid for health professionals to use with their patients to better understand their patients’ real lives.

Having way too much fun with Dr. Victor Montori (top centre) and the KER Unit team!

You’ll hear the word “capacity” quite a lot, by the way, when you visit the KER Unit team. What they’re talking about is the patient’s capacity to do the work of being a patient as well as the barriers patients face in doing that work successfully. People living with two or more chronic illnesses already know what I’m talking about; examples of this relentless daily work on the To Do lists of these people include tasks like medication management, self-monitoring, visits to the doctor, laboratory tests and required lifestyle changes. And that doesn’t include the work of just living with debilitating symptoms every day.

Imagine for a moment being greeted by your physician, or your nurse practitioner, or any other health care provider with opening questions like:

  • “What are you doing when you’re not sitting here with me?”
  • “Where do you find the most joy in your life?”
  • “What’s on your mind today?”

That’s how the ICAN tool starts off. These questions strive to create a conversation between provider and patient that:

  • shifts the focus from the medical condition of the person to their situation in life
  • identifies what the person values doing and being
  • explores how healthcare and other resources serve or limit this person
  • recognizes and cultivates opportunities to advance the person and their situation.

But is it realistic to expect already overworked health care providers to spend time learning more about their patients’ capacity, treatment burden and home life?

ICAN was created for physicians by other physicians, in consultation with many other health professionals (primary care physicians, specialists, nurses, wellness coaches, and community health workers).

And Dr. Montori reports a positive response so far – particularly for providers caring for two distinct types of patients: the new patient (offering a baseline background view of somebody you’ve just met) and the stuck patient (helping providers understand what’s contributing to that patient’s difficulties) adding:

“Clinicians don’t perceive this tool as taking too much time.” 

Minimally Disruptive Medicine is an idea whose time has come.

We’re seeing a comparable variation on this theme in the promising trend among a growing number of physicians towards what they call “deprescribing“ of pharmaceutical drugs.  For example, the more chronic illness diagnoses you have, the bigger the fistful of daily meds you are likely being prescribed, sometimes ordered by different doctors, sometimes ordered to address distressing side effects of other prescription drugs, and each one with its own list of potential side effects, or – worse! – dangerous drug-drug interactions that are potentially fatal.

While at Mayo Clinic, I learned that there are several more projects in the works at the busy KER Unit. Their team, for example, is now working on developing “capacity coaching” to help patients manage the burden of their chronic illness diagnoses – or what the team’s Health Services Analyst Kasey Boehmer calls “recreating their biography.”

I can’t wait to see what’s next from this inspiring team of trailblazing disrupters.

♥

(1)  Tran, V.T. et al., Taxonomy of the burden of treatment: a multicountry Web-based qualitative study of patients with chronic conditions. BMC Med, 2015. 13: p. 115.

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Q: What will it take to get healthcare providers to embrace the ICAN tool and other concepts of Minimally Disruptive Medicine?

See also:

-read Dr. Montori’s new book “Why We Revolt: A Patient Revolution for Careful and Kind Care“.

-Mayo Clinic’s KER Unit: Minimally Disruptive Medicine Program

-Mayo Clinic’s KER Unit: Shared Decision-Making Program

-Mayo Clinic’s KER Unit: Evidence-Based Practice Research Program

-Living with the “burden of treatment”

-“I’m just not a pill person” – and other annoying excuses

-Kindness in health care: missing in action?

-Why don’t patients take their meds as prescribed?

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Published by Carolyn Thomas

22 thoughts on “How Minimally Disruptive Medicine is happily disrupting health care”

  1. What a refreshing concept! Also an essential one.

    Quality of life can only be defined by the patient, not the doctor. And collateral damage from treatment or drug side effects does not enhance it. It’s also part of why healthcare can be ridiculously expensive. The ‘throw everything at the problem’ concept is just too costly, in every way, and often not effective. Look at what often happens to people at the end of their lives! Tens of thousand of dollars are too often spent to make someone’s last days miserable.

    It’s important for all of us to decide how we want our lives to be. It means patients need to learn new ways of thinking as well as doctors. I find that often my patients themselves have gotten so used to having their lives defined by what clinicians think they should do, they haven’t even figured out for themselves what they want to be able to do.

    What kind of healthcare is that? Time to change it.

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    1. You are SO right, Kathi – that ‘throw everything at the problem’ mindset is simply not the answer to every test result. When I worked in palliative care, there was an oft-quoted saying among our colleagues: “Not everything that can be done should be done.” Minimally disruptive medicine is indeed a revolutionary concept!

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  2. I was told that one year after my MI I would be able to get off all meds except Aspirin 81mg. It has been more than a year now and the only one that has been stopped is Plavix???

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    1. I’m not a physician so cannot comment on your specific case, Thomasena. But as many experts say, including the American Heart Association: “If you’ve had a heart attack, you will most likely be prescribed medication that you will take for the rest of your life.” Ask your physician to go through your list of meds with you.

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  3. Carolyn — thank you for another thought provoking posting.

    I am a social worker by training and many of the questions you wish medical providers would ask are exactly what social workers think about all day long. Social workers are well integrated into fields like oncology and palliative care (there are professional organizations for both), but they seem to be relatively absent in cardiology. I have found the lack of emphasis on me as a person rather than as a constellation of symptoms to be very disruptive to my sense of well-being.

    The other thing I wonder is about the generational shift that is happening in medicine, but will take many years to complete — mainly, an approach that is more patient-centered than physician-centered. I think younger providers are more on board with this idea than those that were trained in the era of “doctor knows best.”

    To adopt the ICAN approach, physicians have to be willing to let go of, or at the very least, share, their position as the expert in the room.

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    1. I really appreciate your thoughtful comments, Taryn. (I feel a new blog post coming on – thanks to you – about this mysterious shortage of social workers in cardiology!) In a perfect world, adequate social work staffing would be routine, along with, of course, the evolution of cardiology as a team sport.

      In other words, the social worker shouldn’t be the only person on the patient’s team who knows the answers to those important questions. Your last comment confirms this belief of mine: knowing more about the patient “as a person” makes every physician a more effective expert.

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      1. Yes — healing is a personal matter that requires more than technical expertise. I work on training health services folks on interprofessional teamwork and it is interesting how students long for this approach, but they don’t get much encouragement in the field.

        If you are ever in Seattle, I’d love to chat further about social workers and cardiology and all things heart-related. My professional life has been spent in oncology and palliative care, but since my heart attack, I am trying to figure out how to “help” in cardiology. 🙂

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  5. I’ve been thinking along the same lines for at least six months. Recent surgery necessitated a large white board to list my routine meds and diabetes care. And it did not include such things as ointments, drops, etc.
    As the surgery was on my right hand, my daughter came from out of state to help. She was kept very busy indeed.

    I have begun by notifying my doctors that I would no longer continue a particular treatment that was disruptive and ineffective. I was sure about this and didn’t need to be afraid, as the doctors received the news without complaint.

    My next step is to discuss checking through my meds to see if I can eliminate or decrease any.

    Due to my age, I now allow myself to loosen up on dietary restrictions from time to time.

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  6. Frankly I would be dumbfounded at best, or annoyed at worst if at a medical appointment I was asked “What are you doing when you’re not sitting here with me?” or “Where do you find the most joy in your life?” unless I was explicitly going to them to talk about my “home life”. Maybe I’m being too sensitive but that is my initial reaction. I would prefer for my medical clinicians to ask what is working/what’s not working that we’ve prescribed/suggested? or something along those lines.

    Am I missing something Carolyn?

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    1. Thanks for weighing in here, Judy-Judith. Such questions are so foreign to current health care encounters that no wonder feeling “dumbfounded” or “annoyed” might be an initial reaction. Medical care is traditionally focused on a patient’s physical presentation (hence the general lack of acknowledgment, for example, of things like depression following a heart attack – or, as I mentioned in the comment below to Penny, even the most basic questions before hospital discharge). Here’s another perspective in viewing this scenario. During the past two years with my new family doc, she has been more interested in learning abut my home (i.e. real!) life than my former doc had been for 33 years. She genuinely sees me as a whole person, while it was clearly evident that the latter saw me as just the 9 a.m. blood pressure check or meds refill. The difference for me between the two has been profound.

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      1. I do understand your point of view about your doctor. However, I feel it takes a certain kind of individual to be able to field personal responses – therapists spend hundreds of hours of training to learn how to ask and respond. Most all the doctors I have right now are quite compassionate and I’m comfortable telling them almost everything. I guess I just don’t want them being the ones asking the questions!!! Do you think I have a control issue????????

        I’ll have to do more thinking on this one!!!!

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        1. A control issue? Interesting possibility! Seems like you might be suggesting that a doctor or nurse has to be a trained therapist in order to be able to ask me about the joy I find, for instance, in spending time with my new little grandbaby. Or conversely, to ask me if paying for all my cardiac meds each month is ever a financial problem for my family. Those are important information-gathering questions – and should be asked!

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          1. Ok Ok, I think it’s fine to ask you about your new Grandbaby and the cardiac med payment – the direct and leading questions “What are you doing when you’re not sitting here with me?” – “Where do you find the most joy in your life?” are what annoyed me. Guess I’m taking things toooooooo literally in my “senior years” . . . and/or I’ve become a grumpy old lady . . . probably both.

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        2. Hope you don’t mind me jumping in here…. For me, I would appreciate those types of “greetings” because I want Doctors to understand I am striving for the best quality of life for me. I feel if they understand my passions & hobbies, they can prescribe & “tweak” my meds accordingly. This goes for lifestyle choices & learning my “new normal” limitations etc.

          Great input here… Thanks for the conversation. Heart UP!
          Steph

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          1. Hi Steph – always happy for you to jump right in!! Your astute comment reminded me of the many Heart Sisters readers who have told me over the years of the great loss they felt over no longer being able to do _____ (insert name of important activity they used to do before being diagnosed with a life-altering chronic illness) and made me wonder how many of their physicians were even aware of and/or appreciated the grief and sadness brought on by those losses. And conversely, as you point out, if their docs knew what brings meaning and purpose to the lives of these same women, maybe such awareness could dramatically affect the shared decision-making behaviours of both parties.

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  7. This is an amazing, yes, revolutionary concept.

    And, as someone with multiple chronic illness diagnoses who spends too much time with my life revolving around medical visits and medications, I fully appreciate the brilliant concepts behind it.

    However, while in the rarified world of Mayo and other top-notch facilities, I can fully envision this theory put into practice, I have a harder time seeing it in the day-to-day world of not so great (and overworked) doctors out there.

    I’m old enough to remember when the “mind-body” connection was a revolutionary concept. Sadly, it quickly evolved into a “blaming the patient” theory, or “it’s all in your head.” Doctors of lesser intelligence or an ability to think outside the box just didn’t understand the importance of the knowledge of this connection and how it could be used in bettering patients’ lives.

    Instead, it became a way to further pigeonhole patients (women in particular) into that “she’s overly emotional”, “she’s neurotic” — “if you would just relax you’d be fine” box. And, I believe rather than helping (by extending medicine rightfully into the realm of so-called complementary medicine – like acupuncture, hypnosis, massage therapy, and so forth) the “revolution” of the awareness of the mind-body connection seemed to lead doctors to prescribe more “mind-altering” drugs–overuse of Xanax, antidepressants, sleep meds and the like.

    So, I LOVE the concept of minimally disruptive medicine. I am thrilled by the things that Dr. Montori has to say. And, the question, “what are you doing when you’re not sitting here with me?” is brilliant. But in an over-burdened healthcare system with so many burned-out doctors, I fear the true meaning of Minimally Disruptive Medicine may become distorted and ultimately abused.

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    2. Thanks so much Penny for such thoughtful comments. I too wondered the same thing (how can this really work out in the real world?) when I first learned of the MDM concept. But *something* has to shift in medicine, and this is the way to go.

      For example, high hospital re-admission rates are a serious (and expensive) problem for all hospital administrators. Yet before I was discharged home from the CCU after my own heart attack, not one doctor, nurse, or janitor – not one single person in that entire coronary unit asked me even one question about my life at home: was there anybody there to help me? was there anybody at home I’d have to take care of? could I arrange enough time off from my stressful job to recuperate? could I afford the fistful of cardiac meds I was expected to take every day for the rest of my natural life? Having those ICAN conversations before discharge would have not only helped me, they could have also helped that hospital to reduce re-admission rates.

      I was encouraged while visiting the KER Unit to hear the team’s field stories (one from visiting nurses working in a poor Philadelphia neighbourhood, for example) that illustrated how this novel approach actually can and does work in the real world beyond that rarified air at Mayo.

      And as I suggested to the team at the time, it’s precisely those real life STORIES that will help them spread the word and convince the skeptical.

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