MDM BLOG

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.

ICAN Tool

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.

 

 

A patient’s story

Submitted by Kasey Boehmer

A couple of weeks ago, I had the opportunity to catch up with a member of a family who have all together struggled with their own chronic health conditions. Their story resonated deeply with me, as it highlighted both the incredible amount of work they have taken on to manage their conditions and get the best care, as well as how this work drew on capacity that they could have better spent on the things where they find joy. This patient was kind enough to summarize the story and allow me to share it:

Caring for a 21-year-old daughter with complex, chronic conditions that have required years of finding the right specialists and other medical practitioners.  Drug and other regimens have been exhausting for her, her mother and me.  I, too, suffer from different complex and chronic conditions that are similarly exhausting.

That we are both successful, high-functioning individuals does not ameliorate our struggles in any way, other than we are more adept at working with our medical teams (which have created on our own, owing to the lack of a Mayo model despite “world-renowned” medical institutions in our area).

My wife, who has to care for both us, has had to neglect her own medical needs from time to time as a result of her attention to me and my daughter, and the costs associated with our care.  We have a son who is perfectly healthy, but he has had to bear the burden of having two family members draw down multiple family resources:  cognitive, emotional, behavioral, and financial.

In essence, we have had to create your own Minimally Disruptive Medicine. We have able to do so because we are both professionals, with strong networks of physicians and other health professionals, and with highly flexible work schedules as contrasted with most patients and caregivers.  Nonetheless, even with these capacities, our chronic care needs have detracted from using those resources for other things that we love, value, and enjoy doing, including our careers. Wouldn’t it be nice if the healthcare system created MDM for everyone, so that we and others didn’t have to marshal so much of our capacities for making it happen?

Bringing health and health care issues to the forefront

Submitted by Madge Kaplan

Every now and then, as IHI’s Director of Communications and the host and producer of WIHI, I get the opportunity to bring forward issues health and health care improvers are particularly wrestling with. These are issues born of one of the hallmarks of quality improvement – innovation – but they can easily fall between the cracks and fall off schedules because sometimes the implementation requires a fundamental change in mindset and attitude among health care providers most of all. Victor Montori’s leading edge work on Shared Decision Making (SDM) and Minimally Disruptive Medicine (MDM), and the contributions from his team, fits into a tension we often come back to on WIHI: whether health care is serious about getting to know and respond to the needs and real lives and contexts and experiences of patients or pay lip service to the same while going about its own business.

I’m hopeful it’s the former. IHI’s “What Matters” initiative, which shares many of the same principles as MDM, is gaining traction; Don Berwick’s recent call for an Era Three for the health care quality improvement movement, has reminded many of the centrality of the provider/patient relationship that must be protected especially in the midst of health care transformation; and there are new concepts such as “co-production” that are helping to frame this brave new world of doing with patients rather than doing to them.

So, let’s be optimistic that the several hundred who tuned into the live broadcast of the January 28 WIHI with Dr. Montori, Kasey Boehmer, and Dave Paul from the KER Unit at Mayo, along with IHI’s Andrea Kabcenell, are going to think differently about the next discussions they have with patients with chronic conditions. It was also a treat to have Dr. Montori live in the WIHI studio, so much so we did some additional videotaping and produced these equally inspiring clips. Let’s keep the conversation going!

Madge

 

Madge Kaplan is the Director of Communications for the Institute for Healthcare Improvement.

 

What is capacity coaching? And a new pilot initiative where they are trying it out!

Submitted by Kasey Boehmer, MPH

We’ve been talking with wellness coaches at Mayo Clinic a lot about the idea of “capacity coaching,” which marries some traditional elements of wellness coaching with the concepts of minimally disruptive medicine. Capacity coaches have conversations with patients that help them build capacity for both health and life, and when integrated with the care team, provide a point person for helping the team understand the current state of the patient’s workload-capacity balance. The Zablocki and Hines VAs are just kicking off a pilot in their women’s health clinics to implement the ICAN Discussion Aid in their practice for patients with diabetes or diabetes and depression and designate a member of the team as the capacity coach. I spent time discussing these ideas with Dr. Kathryn Havens of the Zablocki VA after our kickoff workshop together. Dr. Havens will have some thoughts regarding the workshop and the pilot here soon as well. More to come!

See video discussion

Pursuing Minimally Disruptive Medicine: Correlation of patient capacity with disruption from illness and healthcare-related demands

The Journal of Clinical Epidemiology published an article by Kasey R. Boehmer, MPH, Nathan D. Shippee, PhD, Timothy J. Beebe, PhD, Victor M. Montori, MD, MSc entitled Pursuing Minimally Disruptive Medicine: Correlation of patient capacity with disruption from illness and healthcare-related demands. Check it out here.

Careful and kind care, part 2: Slides & video from Maine Quality Counts By e-Patient Dave

REPOSTED with permission by e-Patient Dave

This series of posts to start 2016 is motivated by a desire to help healthcare achieve its potential. I believe that’s not possible unless we’re clear about what the potential is and clear about the challenges and obstacles.

Before moving to additional subjects, today I want to go one step deeper on Dr. Victor Montori’s concept of care that is “careful and kind.” (See Saturday’s post, if you missed it.) I have three reasons to go deeper before moving on:

  • The best care I personally have ever received (since childhood) has always been careful about how I’m feeling, and kind to me, now matter how badly I was feeling. Healthcare can be that great– it’s healthcare’s potential.
  • really, really honor the doctors and nurses who are able to blend their long professional education and clinical experience with that kind of caring – especially in the increasingly nasty financial environment they all face (at least in America) as money pressures imposed by management and insurance companies increasingly interfere with what both patients and clinicians want. All praise to these clinicians, who insist on being caring professionals regardless of the pressures.
  • It’s really, really important to understand how the principles in Saturday’s post translate into thinking about the patient’s world: the life of the individual patient, with his or her challenges. Why’s that important? Because so often health planners complain about the difficulties of patient “compliance” without thinking concretely about the challenges of doing everything right.
    • If you give anyone more work than they can handle, don’t blame the victim. That’s abusive … and besides, you’re recommending something that’s not going to work, which is a waste of breath.

In this 43 minute speech, Victor walks through the patient reality, especially what he’s discovered as a practicing physician. Note that by 1:25 in the video he lays it on the table:

I’ll put forward that the biggest challenge we have in our ability to provide care for people like Maria Luisa [the patient in slide 2] is to answer this question: “What’s best for her?”

That’s healthcare’s potential. See how it plays out in the speech video.

In a follow-up email to me about Saturday’s starter post, Dr. Montori said:

We are really obsessed with the question: What is best for me and for my family? From this question stems the others that require a joint understanding of what is the patient situation that requires action; what are the actions that are available and sensible and address the patient situation in a manner that fits their context and reflects what patients consider important and the reasons they have to value such things.

He also pointed out that the post really “didn’t do justice” to the concept. Well, yeah – one thing at a time.:-) We gotta start with the basic idea.

He continued:

For patients with chronic conditions, they have to make treatments work in their daily life. To enact those treatments they need time, attention, effort, support that normally goes to other aspects of life. So treatment competes with life for these “resources.” If the treatment work fails to note that, and life always win, then there will not be enough capacity to enact treatments and patients will be considered noncompliant, even though this is the result of OUR joint failure to design treatments that fit.

KER Treatment that Fits diagramThen, alluding to Saturday’s graphic, at right:

So we do not see much room for “doctor goals” and “patient goals”.There is the patient situation and we have to work out together how to address it. Goals are too future oriented to be real (try answering “how do you see yourself in 5 years” 5 years ago – would you see the [you] of today? I seriously doubt it). Ratherfocus on the present and see howpotential futures may play in what we need to do today. But not just in abstract but considering the challenges and opportunities of your life situation. And not just to make some tests look pretty but to really advance your situation in a manner that is meaningful to you and to your family.

To learn more about this approach – more rigorously – visit the MDM blog. “Check out the front page of that blog and you will see some additional resources including a full presentation with slides on MDM.”

(Even in its first few minutes, that’s an excellent presentation about the role of information in the conduct of care.)

Delivering – and insisting on – real care in a time of culture change

The other thing, which I think will start coming to a head in 2016, is that in addition to financial pressures, this change is full-blown culture change. As in all culture change, we as newly activated, responsible consumer-patients must raise our own consciousness about what’s important to us and what we say it would feel like to really be TAKEN CARE OF.

What stories do you have, of being well cared for or poorly cared for?  Please respond in comments.

epatient daveCancer survivor “e-Patient Dave” is an international keynote speaker on healthcare who consistently earns extraordinary ratings by understanding each audience and working closely with each client to define their unique “home run.” Audiences have ranged from the Institute for Healthcare Improvement to the Danish Patient Safety Association and the Israel Internet Society. His compelling TEDx Talk “Let Patients Help” was for years in the top half of most-watched TED talks of all time.  Visit his website at http://www.epatientdave.com.

ICAN and 4C: Complementary approaches to contextualizing care

by Saul J. Weiner

A care plan is “contextualized” when it takes into account the particular challenges a patient faces when trying to improve their health through health care.  For instance, if a patient can’t afford a particular brand name medication because they lost their health insurance, and the result is that their asthma has flared, a contextualized care plan might include switching them to a cheaper generic.  Unfortunately, all too often, physicians and the health care team do not identify the underlying contextual issues and the result is a care plan that looks good on paper, but is unlikely to work for the particular patient.  In the example of the patient with worsening asthma, above, s/he would leave the appointment with a higher dosage of a medication that is already too expensive to take.  We call such a failure to contextualize care a “contextual error.” In short, it apparently just did not occur to the doctor that their might be a contextual factor that would account for the worsening chronic condition. In a large observation study in we invited hundreds of patients to audio record their visits we found that when care is “contextualized” (meaning contextual errors are avoided) patients have better health care outcomes. In a secondary analysis of a randomized study in which we trained actors to portray patients with contextual issues and then looked at what tests and treatments doctors ordered, we also found that health care costs are lower because doctors order fewer unnecessary tests and treatments.

So, how do we promote contextualization of care? It’s helpful to compare two approaches that come at the program from different angles. Let’s consider first the Instrument for Patient Capacity Assessment (ICAN). As the authors explain, ICAN “is designed to help patients and health professionals discuss areas of the patient’s life and issues in treatment for context-centered care. It promotes consideration of the ways in which life, the pursuit of health, and health care interact. It does so by creating a conversation 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, and recognizes and cultivates opportunities to advance the person and their situation.”

Specifically, the discussion aid prompts patients with questions including “What are you doing when you’re not sitting here with me?” and “Where do you find the most joy in your life?” One could think of these as “big picture” questions that set up the conversation with a wide angle lens.  They can be a good way to begin to get to know the patient better, and that knowledge may in turn lead to contextualization of care.

Now let’s consider “4C” which stands for Content Coding for Contextualization of Care. 4C is actually a coding system designed for listening to audio recordings of provider patient encounters to assess the provider’s attention to patient context. The 4C model precisely tracks the pragmatic problem solving approach to contextualizing care in the setting of the clinic encounter. It consists of 4 consecutive steps, each with its own term: First, the clinician looks for signs that something might be going on in the patient’s life that is posing challenges for their health care.  This is called a “contextual red flag.” Going back to the asthma case above, a comment by the patient that “boy, it’s been tough since I lost my job” would be such a red flag. The mere fact of losing control of a chronic condition that was previously well controlled is a contextual red flag. Second, if a contextual red flag is present, does the provider explore it, typically by asking the patient what is going on?: “Mr. Jones, I’m sorry your asthma has recently gotten worse. Are their challenges you are facing that might account for that?” We call this step “contextual probing.” Third, in response to the probe does the patient reveal the underlying contextual issues that account for the presenting problem?: “Yes, doctor. Ever since I lost my insurance it’s been hard to afford that inhaler so I’m not taking it regularly.” That’s a “contextual factor.” And, finally, does the provider make use of the information to actually craft a contextually appropriate plan? As noted, switching the patient to a generic would count. Doing so constitutes “contextualizing care.” As illustrated, 4C tracks whether a health care provider identified a clinically relevant problem that might be du
e to a life challenge and then gone looking for that life challenge to see if it can be addressed.

How do the ICAN and 4C approaches compare? ICAN starts wide and zooms in. 4C starts by zeroing in on a problem and then zooming out.  Each has the shared aim of arriving at a plan of care that fits the individual needs, circumstances and preferences of each patient – that is, the patient’s context.

If you’d like to learn to measure the health care implications and costs of effectivelybook cover
contextualizing care, check out Listening for What Matters: Avoiding Contextual Errors in Health Care or click here, for a new book published by Oxford University Press, and released January 2016.

–Saul J. WSaul J Weiner.Photoeiner, MD is Staff Physician at Jesse Brown VA Medical Center and Professor of Medicine, Pediatrics and Medical Education at the University of Illinois at Chicago.

With acknowledgement to Kasey Boehmer for helpful feedback.