Understanding the whole patient

Obesity, the epidemic affecting two-thirds of the U.S adult population, is complex. Practitioners are well versed on the intricacies and challenges when addressing patients dealing with obesity. However, regardless of its complexity, the way in which we address the issue tends to be simplified. Over-generalized recommendations in terms of physical activity and nutrition are often shared in a finite amount of time. These generalized recommendations have a tendency to make assumptions that diet and exercise are the primary concerns for our patients dealing with obesity. Where we tend to fail is in understanding who our patients are in that moment. What are their emotional, physical and environmental circumstances that will contribute to their success or demise? And furthermore, our recommendations are just that, OUR recommendations. How often, in clinical practice, do we make the patient the expert? Our patients are experts at understanding their own lives. They inherently know what will and won’t be successful, making them best suited to make or assist in decision making affecting their health.

What we propose is a way to perhaps be more effective long term by gaining an understanding in the concept of the patient’s whole life capacity and the implementation of shared decision making in the treatment of chronic conditions.  In other words, understand who the patient is as a person first, rather than viewing a ‘case’ or a ‘diagnosis’ to be prescribed a protocoled treatment.

In this context, we will use the diagnosis of obesity as the chronic condition.

Imagine a new person walks into your facility or practice – what can be determined at a glance?

  • He lives with his grandfather
  • He has weekly meetings with his sponsor for Alcoholics Anonymous
  • He’s a triathlete
  • He has an eating disorder
  • He’s had intermittent debilitating back pain since high school
  • He is power of attorney for his sister
  • He has a manager who uses bullying and manipulation as strategies to coerce her staff
  • His biggest fear is that his stepchild will not have his seizure medication

 Maybe one of these is accurate; maybe several or all of the statements are true.  So what? In order for him to be successful in managing whichever treatment plan prescribed, his circumstances and values must be considered.  As providers, we have an obligation to consider the following: “Before [I] make recommendations or prescribe medications, how do I understand my patient’s capacity?” This does not have to equate to less efficiency or grossly increased amounts of time spent with your patients (unless such resource is available). However, some up-front work will need to be done, which in our case study has indicated improvement in long-term patient quality of life and life satisfaction.

How much preparatory work? Practitioners who have used the ICAN Tool have noted the tool takes approximately 2-3 minutes for the patient to fill out. How often is a patient waiting in a room or office between care givers during an appointment? This tool could fit nicely in that space. ICAN affords the patient several moments to reflect on what is going on in the complex contexts of life in addition to managing a chronic condition.

Reviewing the Cumulative Complexity Model, we recall the burden of treatment is worsened by things in health care such as disease specific guidelines and quality targets, multiple treatment plans that are misdealt with, monitoring and tests, limited care prioritization and poor care coordination; the patient shoulders workload within a limited capacity which is influenced by scarcity and the burden of illness, which in turn impacts abilities and outcomes. When outcomes are missed, workload increases, and treatment burden becomes more unsustainable.

Certainly, this is demanding work – for both patient and the healthcare team.  How do we sort this out?  We posit that the investment of time using the ICAN tool early on in treatment offers a comprehensive look at the complexity factors. The use of the ICAN tool as a functional discussion aid, or communication tool, allows comfortable and often organic information exchange without adding to the time-burden or barrier of the provider. Remember: We do not have to address every point!

Whether you use this shared-decision making tool or another similar tool, the concept of learning about the patient’s life is critical.  As a provider, you can take highlights that are most important or identify where your patient has the most confidence to change into consideration when prescribing – Rx doesn’t have to be a pill or procedure. Work with patient to design a ‘next step’.

Review of key terms:

  • Burden of Symptoms; Burden of Illness: The Cumulative Complexity Model
  • Workload encompasses everyday life: The demands on the patient’s time and energy, including demands of treatment, self-care, and life in general.
  • Capacity concerns ability/skills to handle work (e.g., functional morbidity, financial/social resources, literacy/language), readiness to change, social support, beliefs
  • Workload-capacity imbalance is when workload exceeds capacity – this drives patient complexity. Treatment and illness burdens serve as feedback loops, linking negative outcomes to further imbalances, such that complexity may accumulate over time.
  • Complexity: A dynamic state in which the personal, social, and clinical aspects of the patient’s experience operate as complicating factors – factors which appear and accumulate over time, interacting with each other in emergent and cyclical ways.

Submitted by Nicole Burow and Jennifer Zundel


Upcoming MDM Workshop

MDM Conference Blog

You may have seen some buzz on social media about a course in Minimally Disruptive Medicine and Shared Decision Making that we are offering for the first time this year. We wanted to give you an inside scoop.

Should you attend? If you are a physician, nurse, or healthcare provider (quality improvement specialist, pharmacist, social worker, health coach, care coordinator, etc.) interested in applying principles of patient-centered care at the front lines, YES! If you are a researcher or patient advocate interested in these topics, YES! Here’s what will happen during our time together.

Tuesday, September 27th, we will officially open the conference in KER Unit fashion with a wonderful cocktail hour and welcome reception. Then, September 28th and 29th, each day will have: one opening plenary and closing talk, two large-group workshops, a small group breakout session. (Don’t worry we have coffee breaks, too!)

Everyone will get to participate in all four large-group workshops on: 1) ICAN in practice 2) actions for Minimally Disruptive Medicine in practice now 3) in-encounter shared decision-making, and 4) user-centered design to develop patient-centered care strategies. Every participant will get a chance to attend two small group breakout sessions designed to facilitate discussion with experts in each topic. These are opportunities for participants to go more in depth with ideas they discover during the plenary sessions and large group workshops and wish to dive deeper into content.

We have planned for plenty of time for you to network with experts and with other like-minded individuals across institutions through long lunches at nearby local restaurants, two planned networking opportunities, as well as more time for socializing and a sit-down dinner Wednesday evening.

We have put a lot of heart into this content and we want your input too! If you have a specific interest you would like us to cover during the course or any questions, please feel free to reach out to us by email at boehmer.kasey@mayo.edu or on Twitter @kerunit.

Where can we apply the MDM? An Experience in Family Medicine

I write these reflections as a senior medical student in Lima, Peru.  The clinical rotations were most attractive to me as they were packed with opportunities to face diagnostic challenges and craft treatments for complex health problems. This was fun, but more awaited me as I took on a rotation in the primary care center. I did not expect much would come of this, until it did.

My experience in ambulatory care involved patients not really heard or examined properly treated in ways that lacked clear scientific basis. I was surprised by how often patients were treated as a person in the family medicine clinic. Focusing beyond the disease, clinicians took time to hear the complaints and reasons for the consultation, to acknowledged the context of each person, and to discover the patient’s story, the complete one.

Loving Care

Without dividing the patient into specific organ
s and systems, I saw the value of a holistic approach. With this perspective, it is evident that the whole is not equal to the sum of its parts, but is enriched by their inter-relationship. The biological, psychological and social spheres of a person substantially influence each other and their health. Thus solutions require multidimensional thinking. For example, a patient with diabetes, hypertension, coronary heart disease, knee osteoarthritis and low back pain cannot achieve optimal health if abandoned at home with no interaction with others. The patient may also have negative ideas about their current living conditions. Family medicine takes these aspects into account and listens to the patient to propose comprehensive solutions, and the process of identifying and vetting them should be informed by the best available and pertinent research evidence. Medical decisions are not made for the patient, but with the patient, empowering patients and engaging in shared decision making (KER Unit SDM).

The new paradigm

Understanding the health needs and expectations of each patient, and understanding what problems the patient wants to solve and how it may affect other areas of the patient’s life is central to the practice of family medicine and of the medicine I would like to practice. I have found these principles in Minimally Disruptive Medicine (MDM), a humane, conscientious and comprehensive health care model that pays special attention to the work of being a patient. I see MDM as naturally fitting in the work of family physicians, and in my professional activities once I become a physician.

Christian Abelardo Siccha Sinti

Christian Siccha
6th Year medical student
Lima Peru

Helping to reduce the burden of taking 83 pills a week – A nurse’s perspective

I had a patient recently (a male in his late 60’s), whose treatment plan includes taking 83 pills a week! Pills he cannot easily afford and often neglects to take. I met with him to do a medication reconciliation recently and started by asking him what “matters to you”. He said “getting my house in order”. I asked what barriers he might have to doing that and he smiled and said “all these pills!” So that’s where we started. I helped him take all of the pill bottles out of pharmacy bags, new prescriptions ordered the week before, bottles in bags stapled shut and unopened. We went through a list together marking “morning, noon, evening, and night”. We talked through what the pills were for and when and how to take them. He verbalized understanding with teach back, a bit overwhelmed, but smiled as he said “a small fortune here!”. He was given a new, larger pill box, actually two, and a larger plastic tub for all his bottles. He left feeling “more in order” as he said. I wondered about getting him a security guard to protect the patient and ‘his loot’ on the way to the car!

I called the patient’s primary care physician and expressed my concerns over the number of pills this patient, who by the way also had early stages of dementia ( part of the new medications we took out of the unopened bags and bottles) was taking. The physician said he had no idea how many pills it added up to! The primary care physician said “I’ll take a look, but unfortunately each of his specialists feel strongly about what they are treating him for (diabetes, COPD, early onset dementia, urology and cardiac) and I’m not sure who might feel their medications are less important.” An appointment was set for a review of the patient’s med list with the primary care physician. The patient rescheduled this appointment, and the next appointment he ‘no showed’. Perhaps overwhelmed?

How difficult it is when the treatments for ‘optimal’ health supersedes living optimally! Such a burden we unfairly place on patients in healthcare sometimes. New meds to try, old meds we rely on.

I’m not giving up though. I will continue to help this patient lighten his load so he can run the way he desires, as much as he is able, in these next few years! Now, we just need to find out how to encourage him to get to his next appointment, but those barriers are another story!

Through all of my day, thinking about my patient’s priorities and ‘what matters to them’ has changed how I approach transitional care for my patients. I have “what matters to me” on my wall to remind myself to keep my needs and wishes in perspective too. I meet patients with their priorities and capacity in mind. It’s a start, but it’s making a difference in my nursing care!



Renee’ Herman, RN, BSN, MHSA
High Risk Transitional Care Coordinator
Saint Luke’s Hospital

50 Courageous Years as a Diabetic Patient

I would like to thank the KER Unit for allowing Karen and me to be a part of the Diabetes Research Advisory Group for the last eight years.  I feel it has been a rewarding part of the relationship between the doctors and my care at Mayo Clinic.  I would also like to take this time to give a huge and sincere thank you to all the diabetic caregivers and family support we need for our chronic condition.

I have been Type 1 diabetic since age 5.  I never knew life without anywhere from 2 to 6 shots a day every day.  When I started in 1959, the only way of testing the sugar in my blood was by using urine test strips.  And then the only way of knowing when it was high was when it bright green.  This meant it was already too high and I needed to do something to get it down.  On the other end of the scale, I would go into reactions so we knew it was too low and I needed some sugar to bring it back up.  I started my day with a routine of checking my test strip and then sterilizing my syringe and needle before filling the syringe with the insulin the doctor had prescribed.  My sister has told me that she never came down the stairs to breakfast until after I was given my shot, because, she did not know if it was a screaming day or a crying day and the “doctor office smell” in the kitchen was not pleasant.

As the years went by, the insulin changed every few years and with it came changes and complication for my care.  I was told once that the old insulin would build up in my system, and as I changed to the updated insulins, the old insulin reserves would let go and send me into a  reaction.  I had this happen time and time again.  I have gone through every phase of insulin infusion there was up to 2005.  From the glass syringe with stainless steel needles, using an injection device to make the needle go in much faster to disposable needles to the pen and finally to the insulin pump for the last 7 years I needed the insulin.

I never knew life without my diabetic doctors and their staff.  I have been a part of Mayo since 1962 when I was transferred here for my brain tumor and diabetic care with Dr. Allan Frethrum on 9 Plummer.  I have ridden the ambulance too many times to count and have spent time in every hospital that was and part of Mayo.  I am proud to say that without my wonderful caregivers, wife family and friends, I now am a 50 plus year survivor of diabetes, cancer and a pancreas transplant.

On August 14th 2005, I received the greatest gift from a donor from Colorado of a pancreas.  I am now 10+ years as a normal everyday human being with no restrictions as to what I can and cannot eat.  I have the best care in the world right here at home and 30 minutes away at Mayo.  I am proud to also say that I have not spent 1 day in the hospital in over 10 years.  Thank you, Thank you, Thank you caregivers and Mayo.

Submitted by Gary Hahn
Gary Hahn Gary Hahn metal

Making a difference one clinician at a time

Submitted by Renee Herman

I wanted to start my day by sending you a “thank you!” for your work.  I have no awards to give you, live applause from the audience, or notations that reference your terrific work in journals. Today, from me, I can only give you the experiential, warm hearted “thank you!”

Almost two years ago now, I accepted a position here in the heart of Kansas City (literally a bi-state city) at Saint Luke’s Hospital ‘on the Plaza”.  We are a part of a larger health care system, but this hospital is the heart of the system, in the heart of the city. My ‘title’ has changed several times, which tells you the changing dynamic of what I do.  Most recently, I wear the title of “High Risk Transitional Care Coordinator” which in its simplest description is a role whereby I identify or get referrals for those high risk, complex care, often chronically ill patients who are underinsured and under resourced. From May to December 2014, I received over 150 referrals, and this past year, had over 200.  These referrals came from all over the acute care setting, but also extended into the post acute care setting including several Patient Centered Medical Homes (PCMH) and Saint Luke’s Home Health Care and Hospice team.  In the acute care setting, I have had referrals from the Emergency Department where our high risk patients are some times first identified, to all inpatient units, including transplant units for heart, kidney and liver. Most often, the referrals come from frustrated staffs who just ‘don’t know what to do with this one’. So, they call me.  There are plans to expand this role into a ‘department’, but in this every changing healthcare environment, new programs like this one that was funded as a ‘pilot’ by a grant, often have as the number one question, “Where do we go from here?.”  So, for now, I am the “department” though I have  found great support by working with area ‘safety net clinics’, other community services, and terrific Community Healthcare Workers who often assist me.

In the midst of gearing up with information for this role, trying to understand my patient population so that I could give them the care and service my patients really needed, I found about your work at Mayo Clinic.  I’m a Minnesotan by birth and have visited Rochester since I was young (side note: it’s where I first learned about the power of illegal drugs from a video I saw at a Mayo learning center. It greatly impacted my life as a grade school child.). I watched Mayo Clinic grow from a ‘hospital/clinic’, to now a ‘health care system’ occupying city blocks! The strong feelings I have about Mayo’s reputation for quality and patient centered care set the stage favorably for you, even before I listened to you on an IHI radiocast.  Again, Mayo Clinic lived up to its reputation in my life and when I heard you talk about your work, it literally made me cry with excitement.  Finally, someone within the medical profession ‘gets it!’  I was seeing what your were describing in my patient population and right then, could name many of my patients who were really trying, but not succeeding, and suddenly it all made sense as to ‘why.’

Now, in working with my patients, I try to really hear them as they set out for me in their own words, what they can and cannot do to manage their own health care. Sometimes, they show me by what they are, or are not doing, what ‘really matters to them’.  It makes sense to me now and I can better explore with them their feelings of ‘never quite feeling like they are ‘measuring up to what they’ve been asked to do by their Doctor or health care team.  Some have even said to me, “It’s impossible!” and now, I can agree. When I ask patients “What Matters to You”, they often look at me and say, “No one has asked me that before”, and they go on to tell me. Interestingly, what seemed “impossible” for them, when broken down into ways that are manageable and meaningful to them, seem more “possible”.  I have story upon story of patients whom I have helped in the “transition” between the hospital and home, the “transition” off of home care and into the PCMH, and from ‘managed health care’ that was put upon them, to ‘self management’ of care that fits with their healthcare priorities.  From the End Stage Renal Disease patient who rides an electric wheelchair daily for 45 minutes to dialysis by bus because she wants to live independently in the only subsidized apartment she could find (we were able to get her a bed, which was what ‘mattered to her’ in her health care plan), to the Heart Failure patient who was illiterate and labeled ‘non-compliant’ (we helped him to log his weight daily because he could read numbers and his ‘self management ’ confidence rose significantly because he now had something he could do to show he was trying to follow his treatment plan, and that was what ‘mattered’ to him),  my ‘tool box’ of ‘helps’ and understanding, has been significantly aided by your work. We have long way to go to actually ‘do’ what your work has shown would actually transform the care of our complex care, chronically ill patients, but even in the basic ways I’ve applied your studies, I’m finding increased satisfaction in my work, less ‘burnout’ from ‘trying to make patients do it our way’, and positive outcomes in the lives of the patients I’m asked to help.

So, from the heart of a very grateful nurse (one who has been in the profession for greater than 35 years and is still learning!), I say “thank you.”  It’s cold here…and I know even colder there, but hopefully today, your heart will be warmed knowing you are making a profound ‘experiential’ difference in the lives of caregivers and patients. Thank you. Thank you.  Keep on!

Renee Herman

Renee’ Herman, RN, BSN, MHSA
High Risk Transitional Care Coordinator
Saint Luke’s Hospital

Minimally Disruptive Medicine

Submitted by Kasey Boehmer

Monthly, we meet to discuss MDM topics. While we often talk about patient capacity as one thing, last month we had an interesting discussion about three different types of capacity:

1) The capacity to fight, particularly when a diagnosis of a chronic illness is given, an acute exacerbation occurs, or another important life event occurs that interferes with the ability to care for an existing condition.

2) The capacity to cope with both the work of patienthood and life. In some ways this is tied with normalizing the work of being a patient in light of competing priorities: making sense of it, planning it and enrolling others for help, enacting the work, and appraising its worth.

3) The capacity to thrive, which consists of the ability to author ones own story and make a meaningful life with and in spite of living with chronic illness. This capacity may follow the first two.

We discussed that these may be sequential but people may also move backwards and forwards between these phases during different points in their journey with chronic illness.

Finally, we briefly discussed the differences and similarities between the Chronic Disease Self-Management Program (CDSMP) and Capacity Coaching, which are both components of a minimally disruptive approach to care. CDSMP deals more with self-management and the capacity to cope with the complexity of chronic illness. Capacity coaching, aims to foster the patient¹s capacity to thrive. It helps people decide what story they want to write, and then asks questions to help them consider if that story is reasonable and how they might get there.


Submitted by Kasey Boehmer

We have had many clinicians ask us what using the ICAN Discussion Aid is like in busy practice. We have had questions about what value it adds to the clinic visit from both the patient and clinician perspective, as well as how long it takes. I sat down to talk with Dr. Summer Allen in this brief interview and pose some of these questions.  Dr. Allen shares her first-hand perspective regarding ICAN from her participation in the development process and from using it in her practice.