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