What is your opinion of the Minnesota Community Measures’ “D5” criteria for diabetes management? What are the risks and benefits of adopting guideline-driven care? Do the D5 measures reflect a friendly contextualization of care?

I think the topic of guideline-driven care is an important one, and I find myself having mixed feelings about it.  As a medical student and learner faced with a new or complex problems, I think guidelines can serve as a starting point for reading or from which to build a care plan. In the context of the D5, for example, the guideline gives me an idea of what aspects of evidence-based care I should be thinking about when I am beginning to get to know a new patient with diabetes.  However, I think solely utilizing guidelines comes with risks. They assume every patient is similar and therefore can be managed in a similar manner.  A guideline can put patients into boxes, and can quickly take away from personalized clinical reasoning.  It would be easy to go throughout your day just checking boxes and following algorithms, but this approach may often miss the bigger picture of looking at the patient as a human with a host of social, behavioral, and economic challenges that all play into their health.

I remember my preceptor mentioning the D5 guidelines to me before going into a patient room last week, asking to make sure the patient was taking their aspirin and if they were still smoking, as those are aspects we are now evaluated upon.  In one sense I think the D5 guidelines are helpful as they do aim to improve health outcomes and have been shown to reduce the risks for diabetes complications including heart attack and stroke.  They provide a guide for patients, outlining a clear set of key action items that a patient can work on together with their health care team.  However, I think it’s important to realize these shouldn’t be the sole focus of patient care and can/should be adapted to fit the individual needs of the patient at hand.  I think it’s also difficult to assess a physician based on how many of their patients are meeting specific guidelines.   Each patient and patient population is different.  Having good control of blood pressure or blood sugar may look different in a completely healthy person versus a patient with multiple other comorbidities, and guidelines or evaluations may need to be adapted to reflect this.

Mary Rolfes wrote the following as part of her 3rd-year family medicine clerkship at the Mayo Clinic School of Medicine.

Prior to starting the clinical portion of my training, I often wondered what it would be like to be the provider for a patient who is not able to manage their disease as advised. My goal was to have an approach to the patient that was not paternalistic, but I find this to be easier said than done. Mainly, the difficulty arises from the role placed automatically upon the physician, whose counsel is sought by patients because that physician is perceived to be an expert in his or her field. It’s a challenge to rise to this role, to speak confidently (as we are taught to do early on in third year), and yet to balance this with humility — the quality that patients actually need.

Recently, I was expected to discuss a patient’s case with a team, in front of the patient, in the patient’s hospital room. I was to have a plan and sound “confident and unwavering.” But, honestly, I struggled — because there is so much at this stage, and will be at every stage of my career, that I do not and cannot know. Even if I was already the world’s expert on a limited subset of disease in one specialty, I still would not know the details of this patient’s life, the detail that will cause this patient to not be able to adhere to a plan, unless I begin a conversation with them from the standpoint that only they can teach me about themselves. I can be truly confident of what I know if I humbly gather that information and tailor disease-related advice to the patient’s context.

Ms. Montenegro is a third-year Mayo Clinic School of Medicine student, writing as part of her family medicine clerkship.

As a study coordinator at the Knowledge and Evaluation Research (KER) Unit, I have over 10 years of experience in conducting research across a broad array of contexts and designs. Most often, we evaluate patient-centered interventions and their impact in the clinical encounter. These interventions are not drugs or devices, in which participants are often extracted from their personal and clinical care contexts to participate in strict protocols, but rather are tools to support clinicians and patients in improving their conversations and decisions. To see the effects of our tools, we record the clinical encounters and ask users (clinicians and patients) for their experiences. Because our recruitment and data collection takes place in the context of clinical practice without time deliberately allocated for research effects, often in a tightly scheduled and carefully choreographed setting (or in a chaotic mess, depending on the clinic), and because clinicians and patients may be overwhelmed or anxious, it is important that all protocols for recruitment and data collection are designed and implemented with minimal disruption to the clinical workflow and to the patient agenda.

When we conduct our research, we immerse ourselves in the clinical settings to understand the clinical workflow and identify patients while being as visible (as to keep staff aware of our study) and invisible (as to avoid disrupting the staff) as possible. We consent patients in the exam rooms (a private location) during the wait time between being roomed and seeing the clinician, which has led to higher enrollment than calling the patient ahead of time. Importantly, by assessing eligibility prior to the encounter and by finishing data collection (i.e. surveys) at the same visit, we prevent scheduling extra patient visits to the medical center for the study (with its associated interruption to patients’ daily routines, time away from work and family, parking woes, and other burdens). This means that everything, from informed consent documents to post-intervention surveys, must be succinct. Our researchers must give up “nice-to-have” items in the surveys, for example, that can be omitted as nonessential. This means briefer study time and less effort for the research participants and a faster flow of study patients through the clinic. The purpose of our research is to learn how to support kind and careful medical encounters.  In order to observe clinical conversations, we use a small camera that, while unobtrusive, stays evident in the room, and has a clear and easy way to be turned off or to be reoriented (e.g., toward the ceiling or the floor to capture audio only) if any of the participants prefer not to be recorded at any time. The recorder reduces the research presence in the encounter as the researcher does not need to be in the room observing the discussion or taking notes. As patients and clinicians engage, it is evident that the small camera becomes ignored or forgotten as the visit progresses.  This is as close to the real world as we can get while minimizing the research imprint.

Our experience in conducting single and multi-site studies- for examples, conducting Chest Pain Choice in the emergency department, Depression Medication Choice and Diabetes Medication Choice in primary care, Graves Disease Treatment Choice and PCI Choice in specialty ambulatory clinics, and AMI Choice in hospital care- is that research can be designed and implemented in this fashion across a wide range of clinical settings and in urban, suburban, and rural settings.

Along with colleagues at the KER UNIT, we are working toward a new standard.  In our view, the design and conduct of clinical studies must achieve the research goals while minimizing the work allocated to participants.  Protocols are not only reviewed to meet ethical standards, but also to maximally collect information (about outcomes that matter to patients and clinicians), while imposing the smallest possible footprint on clinical care activities.  Importantly, by minimally disrupting practice, our outcomes best reflect the effect of the intervention in daily routine.

I recognize that other projects (i.e. FDA regulated) may have more stringent protocols that cannot be bent to fit the context of care.  They could still benefit however, from review that ensures their protocols meet ethical standards, and impose on participants the smallest possible burden necessary to effectively answer the research question.   This may require extra effort and conversations with funders and designers but is crucial to conduct research that is respectful of patients and clinicians time and energy.

Our adherence to this new standard, Minimally Disruptive Research, requires participants (both patients and clinicians) as research partners to engage with investigators at every step of the research process to ensure that all procedures are as easy as possible. The test the implemented protocol must pass in all eyes is that it results in CAREFUL and KIND RESEARCH.

What strategies does your team use to be kind and careful when conducting research about the experience and delivery of clinical care?

Submitted by Sara Dick, MSc, CCRP

Contributing Authors: Gabriela Spencer Bonilla, BA, and Marleen Kunneman, PhD

 

Restoring coherence amid uncertainty

Submitted by Ronald Epstein, M.D.

A couple of months ago I was awakened with abdominal pain. I couldn’t sleep. The pain was unfamiliar, different from my prior kidney stones. It was more in the front of my abdomen, not the side; it didn’t wax and wane.

The pain got worse and my wife drove me to the emergency room. As a doctor who is no stranger to the emergency room as a patient, I took the opportunity to note the quality of attention I received from each person I encountered, and the degree to which they were present, seemed interested in me as a person and expressed caring.

The first thing I learned is that attentive presence has nothing to do with role. The clerk at the front desk first asked for my name, date of birth and insurance information; he made eye contact with a knowing look. That look made me feel more attended to, even before he said he’d get me seen right away. The person who transported me in a stretcher to the CT scanner asked how I was doing and she seemed interested in the answer. Both the clerk and the transporter were part of the healing enterprise. On the other hand, the tech, obviously harried, took my blood pressure without sharing any of her presence. I found her lack of presence disruptive; for her I was merely a task to be completed, not a person to be known. It was disruptive to a fragile sense of coherence in a moment of vulnerability. The same blood pressure check with some expression of human connection would have been more healing, less jarring.

For those who were engaged with me as a suffering person, I encountered different types of responses during my short stay. Some were interested in fixing my problem. Dr L, who attended me, did not waste any time getting me medicine for the pain and nausea. The pain resolved quickly and after a while I felt less nauseous. But it wasn’t just the pain and the nausea; there was more. I was worried. He inquired. Perhaps, he said, we should wait to see what the blood and urine tests show before ordering a CT scan. That could save you an unnecessary test and some radiation exposure if you really don’t need it. I agreed. More importantly, I was part of the plan, part of a collective effort to make sense of this unexpected event. Later, tests unrevealing, he explained, Would be an hour to drink the contrast solution slowly, and another hour to get the interpretation after the scan, and then we’ll see. I wanted to know why I was having pain and agreed to the scan. I didn’t get the sense that he was treating me specially because I’m also a doctor. He addressed me as a person first, a patient second. He communicated his interest in me as well as the illness, that he’d accompany me along the way, that I’d have a say.

There was a lot of waiting, first, to drink the contrast solution, then get the scan, then wait for the result. Then, a surprise. Not another kidney stone (I knew that), not diverticulitis (the ED doc thought it would be). The scan showed some thickening of the stomach lining, probably an ulcer, he said. Could be gastritis, could be an ulcer, could be something else, he said. In retrospect, I realize that he was preparing me for something, treading softly. The report from the radiologist said, possible infiltrative process, he said. I did not like the sound of that. I imagine that if I wasn’t a doctor he would have explained that he needed to make sure it wasn’t cancer. Now we were both in uncertain terrain. The pain gone, I felt fixed in a physical sense, but I was far from back to normal. I was anxious. Dr L suggested a call to GI, an endoscopy. No alcohol were his parting words.

Illness is a disruption of what we take for granted. Bodies hum along quietly, out of awareness, then “something” happens. For those who are relatively healthy, that something, fortunately, is an exceptional occurrence. For those who are chronically and seriously ill, some somethings are part of the fabric of life. However trivial or monumental a something might be, the resulting disruption is physical, psychological and existential; we experience it as suffering. Physicians normally respond to suffering by trying to fix a problem, to diagnose and treat, to remove the threat. But often the threat cannot be removed completely. There is a residual, a fear, a not-knowing. With the advances in CT and MRI scanners and ultrasound, it is now possible to see in ever more exquisite detail what previously would have evaded detection – usually a good thing, but this increased precision comes at the price of finding more lumps and bumps that are meaningless, harmless. Increasingly, we all become acquainted with these “guests” — who reside in our livers, our kidneys, our brains — and try to determine if they are innocent or nefarious.

I had entered that field of uncertainty, together with Dr L. In few words, he communicated that he wasn’t confusing the prescribing of treatment with the relief of suffering. Presence makes suffering tolerable, less disruptive. Presence can restore a sense of coherence. Even transient illnesses involve a sense of loss or threat, but in more serious, chronic or life-threatening illnesses that sense of loss can become so wrapped up with a person’s identity that they feel that they’re no longer whole. Helping patients reclaim their identity – that which defines who they are as a person regardless of the ravages of disease – is essential when patients are seriously or terminally ill, but it can be just as important at other times. Whatever transpires, whatever the diagnosis, and whatever uncertainties remain, physicians can support the integrity of the person. For patients whose illnesses don’t go away, sometimes the most important thing a doctor can to is to let them know that she is there not only to solve a problem but to help them discover that illness does not have to diminish them.

For me, in those few minutes in which the uncertainty about diagnosis emerged, Dr L was able to give me choices and help me be in control, at least to some degree. What transpired the next day – the endoscopy – suggested something benign but unusual-looking. A week later, Dr K, the endoscopist, called with the biopsy result. Here was another opportunity to address the person and the patient. It was certainly benign, he said, but some uncertainty remained whether the inflammation was acute or chronic. I felt fine. I opted out of another endoscopy, offered “just to make sure.” I knew better. Often more tests muddy things as much they clarify. The kind of reassurance I was looking for was knowing that I’d be accompanied, and that’s what I had.

It’s strange to write about a health care episode that went well. There’s so much wrong with health care. But patients know when health care is about people first then diseases. They feel seen, recognized, accompanied. It doesn’t take much. A quality of gaze, a warm inflection of speech, a momentary pause. Words that bring us together, human to human, rather than words that create distance. Gestures to honor a wholeness that would otherwise remain unseen.

 
Dr Epstein is a professor of Family Medicine, Psychiatry, Oncology and Medicine and Director of the Center for Communication and Disparities Research at the University of Rochester School of Medicine and Dentistry. His book, Attending: Medicine, Mindfulness and Humanity (Scribner, 2017), will be released in January 2017.

Contact information:
1381 South Avenue, Rochester, NY 14620 USA
+1 (585) 506-9484
ronald_epstein@urmc.rochester.edu

 

 

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

Coach Nicole weighs in on MDM.  Check out her post.

Register for the MDM Conference.

 

 

 

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 Siccha
6th Year medical student
Lima Peru

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

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 14^th 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