Undercared-for Chronic Suffering: Experiences with Medically Unexplained and Contested Illnesses and Symptoms

Submitted by Christina LaVecchia, PhD


Medically unexplained and contested illnesses have long been a subject of interest—not only to those directly experiencing this form of suffering or caring for those who do, but also to the public at large.

Take, for instance, the 2018 Netflix docuseries Afflicted. The series portrays the experiences of people with misunderstood and stigmatized diagnoses and soon after its release was criticized by those it portrayed and by their families and caregivers as “craft[ing] the most sensationalist narrative possible” through “errors, manipulations and omissions of the [series’] edit.” Moreover, as Solona Armstrong wrote in a Medium review of the docuseries, “I would summarize the obviously biased message the film sent its audience with one phrase, spoken in the film by Dr. Friedman: ‘You can be deluded that you’re sick’.”

If these claims (about the handling of the stories on Afflicted) are true, then the show’s producers likely thought viewers would be easily persuaded that people are making these illnesses and symptoms up in their heads. Put another way, such misrepresentations are in themselves a larger cultural trope, revealing just how routinely the people suffering these illnesses and symptoms are seen as liars, frauds, and/or emotional manipulators. Also revealing of larger patterns: the significant harassment endured by those portrayed on the documentary (see, for example, Pilar’s story).

Struggles with legitimacy and stigma are also depicted in the award-winning 2017 documentary Unrest by Jennifer Brea. The film’s origins lie in Brea’s difficulty communicating the depth and severity of her symptoms to her doctors before she was diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis. For Brea the camera became a mechanism to communicate her experience and navigate frustrating, at times dismissive, care. (For yet another example of creative attempts to help clinicians understand patient experiences, see designer Katie McCurdy’s visualizations of symptoms and health histories for patients with “rare or mystery” conditions.)

Such struggles with stigma and legitimacy aren’t just an unfortunate side-effect of living with these difficult-to-diagnose and difficult-to-treat illnesses but rather what is most at stake. As one commenter wrote on the PBS webpage for Unrest, “There is an argument about nomenclature and diagnosis, but it’s for another film and another battle. It’s more important to lose the stigma first, because the prejudice of clinicians is what’s killing us, not the name.” These are the stakes behind a qualitative systematic review and thematic analysis underway in the KER Unit (the full protocol has been registered with PROSPERO, CRD42019122506).

Our review explores what we have termed undercared-for chronic suffering: the experiences of patients, clinicians, and caregivers with chronic conditions and/or symptoms that (1) do not lend themselves to clear imaging, measurement, and/or treatment and (2) are characterized by long, expensive, and potentially confusing or conflicting diagnostic journeys. We offer the term undercared-for chronic suffering to bring focus and legitimacy to patients’ experiences with these conditions/symptoms and lessen the focus on their unclear scientific diagnosis.

Our analysis of our included studies is still in progress, but we anticipate that our thematic synthesis will include experiences like the following, which we observed in our preliminary manual searches on the topic:

  • patient perceptions of or attitudes toward their conditions, symptoms, and related experiences;
  • effects on patients’ lived experience (functionality, self-management, finances/occupation, social relations, etc.);
  • clinicians’, patients’, and/or caregivers’ perceptions of, experiences with care (communication, diagnostic process, conflicting/confusing information, continuity and integration issues, feeling doubted/unimportant/dismissed, feeling powerless/frustrated, etc.);
  • clinicians’ attitudes toward patients with these symptoms/conditions.

We aim to describe the contributors to patients’ experiences of undercared-for chronic suffering (positive and negative), as well as the experiences of the clinicians who treat and caregivers who care for this patient population. In doing so, we hope to understand the elements of patient support that can mitigate its well-documented propensity for frustrating conversations (and relationships) between patients and clinicians, difficulties with self-management and treatment, and patients’ feeling misunderstood, unimportant, and/or delegitimized.


  1. https://medium.com/@afflicted/the-truth-behind-netflixs-afflicted-92e92d32cd7c
  2. https://medium.com/@solonaarmstrong/afflicted-on-netflix-is-hurting-everyone-not-only-the-chronically-ill-63e21334f919
  3. https://medium.com/pictal-health/its-complicated-60b2cb9c2398
  4. http://www.pbs.org/independentlens/films/unrest/
  5. http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42019122506


LaVecchia profile photo

Christina M. LaVecchia, Ph.D., earned her doctorate in rhetoric and composition and is a research fellow in the KER Unit who specializes in qualitative research. She uses her rhetorical training to collaborate on patient-centered research related to patient-clinician communication (particularly rhetorical listening practices) and the social experiences of patients with illness and navigating the power differentials that inflect their care—like those experiencing undercared-for chronic suffering.



Universal Healthcare

Submitted by Paige Organick

As exemplified with Drew Calver1, the Texas high school teacher rushed to the hospital for life saving treatment after a heart attack in 2017, our current healthcare system is neither careful nor kind. From the hospital bed, he worried about affording his care, but was reassured his insurance would cover all expenses. Nonetheless, his initial bill totaled $108,951 after insurance, partly because his hospital was not in his employer’s insurance network.

Calver’s case demonstrates part of the high treatment workload patients undergo to afford their care. If they’re lucky enough to be insured, they must do a lot of cognitive work to figure out if their provider is in-network or not. After treatment, patients wage small and numerous battles with insurance to prevent bankruptcy by a bill magnitudes higher than those in similarly developed countries.

Due in part to a complicated patchwork of fragmented insurance and healthcare providers, administrative complexity has made the US the top spender on healthcare in the world with some of the lowest health outcomes. Americans, compared to similarly wealthy and developed countries, have a shorter life expectancy, higher rates of disease, the highest rate of infant mortality, and the lowest chance of making it beyond middle age2.

Universal Healthcare

Image from Peterson-Kaiser Health System Tracker

Some of these health outcomes could be improved through Senator Sanders’ proposed Medicare for All act, which would better prioritize preventative care measures. 49% of Americans have employer-insurance4, and as they move jobs their insurance changes, then once they hit 65 they move to Medicare. Insurance companies provide treatments rather than continual maintenance of overall health, passing the buck on to the next payer for incentivizing healthy living and preventative care programs. However, under a single-payer system, the government would be greatly incentivized to fund public health and preventative care measures, keeping the population healthier and in less need of healthcare, similar to other Western countries.

Medicare for All would decrease patient’s treatment workloads Under a single-payer system, Calver would not have needed to worry about being in the right hospital, or having the right doctor in the wrong hospital, in order to afford his care. And although Calver had a crushingly high bill, his bill would have been even higher without insurance, as the 29 million uninsured Americans would have faced. When care is this expensive and this administratively complex, navigating care becomes stressful, causing people to either avoid the doctor’s office altogether or to avoid routine care, only seeking care when they need hospitalization or expensive procedures.

However, Medicare for All won’t be a panacea for our healthcare system. Despite Medicare for All increasing access to care, it may restrict certain services and procedures. If 29 million more Americans suddenly accessed healthcare, there would be a shortage limiting access to certain services such as access to doctors and limited supplies of medications. Additionally, Medicare for All would only cover a contested list of “medically necessary” procedures. This list ranges from the obviously important, like breast cancer screenings, to colonoscopies. What it may not include is prescription drugs for fertility, weight loss, or potentially abortions, as they are so hotly contested right now. Calver’s procedure may have been unavailable due to medical shortages, or some aspects may not have been covered.

America is at a crossroads, and how we move forward reveals what we value in healthcare and the treatment of fellow citizens. Our current industrialized healthcare system benefits those with good insurance and who can afford care. These lucky patients enjoy some of the best diagnostic treatment and advanced procedures in the world. While Medicare for All would potentially limit access to some treatments, it overall would bring other benefits that emphasized overall population health, an arguably more careful and kind approach. The passage of Medicare for All would mark a massive shift in America’s values, evolving the rugged individualism America was founded on into making room for a more communal, equality based healthcare system.

1 “Life Threatening Heart Attack Leaves Teacher with $108,951 Bill”. NPR Morning Edition. https://www.npr.org/sections/health-shots/2018/08/27/640891882/life-threatening-heart-attack-leaves-teacher-with-108-951-bill

2 “For Americans Under 50, Stark Findings on Health”. Sabrina Tavernise. The New York Times. https://www.nytimes.com/2013/01/10/health/americans-under-50-fare-poorly-on-health-measures-new-report-says.html

3 “Mortality Rate, Infant (per 1,000 live births)”. The World Bank.  https://data.worldbank.org/indicator/SP.DYN.IMRT.IN

4 “Health Insurance Coverage of the Total Population”. Henry J Kaiser Family Foundation. https://www.kff.org/other/state-indicator/total-population/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D

The Proposed Affordable Drug Manufacturing Act

Submitted by Paige Organick
Illustrations by Kevin Shaw

Senator Warren and Representative Schakowsky introduced the Affordable Drug Manufacturing Act in December of 2018. This act would require Health and Human Services to publicly manufacture generic drugs if one of the following conditions are met:

Rx Bottle.png

  • Two or fewer companies produce the drug
  • There is a drug shortage
  • The price of a drug has created a barrier to patient access.

Should it pass, this bill would be consequential. Currently, 40% of generic medicines are made by just one drug maker. Monopolies like this contribute to soaring drug prices that exclude patients who fill nine out of every ten prescriptions with generics.1 By breaking the generics monopoly and promoting competition, the act’s intent is to improve the affordability of medicines for most patients, even those still under patent protection.

Out-of-pocket costs are important in making treatment decisions for at least 80% of patients.2 By addressing the financial burden of treatments, this bill could support what we at the KER Unit call “minimally disruptive medicine”. Faced with expensive medications, patients, especially those with multiple chronic conditions must choose between buying groceries, paying rent, and purchasing their medications. When they skip their medications, healthcare labels these patients as “noncompliant”. These “noncompliant” patients must then cope with preventable symptoms and complications, the care these require in turn and their costs, and the judgment often dished to them by those who blame them for not taking personal responsibility for their care.

This act, along with other proposals including the Preserve Access to Affordable Generics and Biosimilars Act, are unlikely to pass for many reasons, including the substantial campaign contributions that pharma makes to regulators.3 Yet, these initiatives may slowly erode the fabricated consensus that market forces alone can solve the problem of drug affordability, and re-energize the role that regulation can play in creating affordable healthcare.

1 Why pharma companies are bowing out of generics”. Dan Gorenstein. Marketplace on NPR. https://www.marketplace.org/2017/08/02/health-care/drug-prices-why-pharma-companies-are-bowing-out-generics

2 “Talking About Costs of Care During Shared Decision Making – Part One: The Problem”. Alan Balch. Journal of Clinical Pathways. https://www.journalofclinicalpathways.com/article/talking-about-costs-care-during-shared-decision-making-part-one-problem

3 “Database Details Drugmakers’ Contributions to Congress”. Emmarie Huetteman and Sydney Lupkin. CNN News. https://www.cnn.com/2018/10/25/health/drugmakers-congress-contributions-partner/index.html

Extending the Applicability of Clinical Practice Guidelines to Patients with Multiple Chronic Conditions

This is a reprint of a previous publication held on guidelines.gov. We will work to update information within in coming blog posts.

By: Aaron L. Leppin, MD and Victor M. Montori, MD, MSc

Currently, half of all American adults have a chronic disease and 1 in 4 live with the burdens of multiple, concurrently active chronic conditions (1). The population is aging and the incidence and prevalence of chronic disease are increasing. As such, typical patients with any chronic condition are increasingly likely to be patients with multiple chronic conditions (MCC). Patients with MCC are a priority population and Federal stakeholders have called for new and effective ways of meeting their healthcare needs (2,3). Optimizing clinical practice guidelines for the care of patients with MCC could play a key role in this regard.

The Dilemma for Clinical Practice Guidelines

Clinical practice guidelines, for scientific and practical reasons, orient themselves around the management of specific diseases or clinical circumstances. They provide condition-specific guidance on how one would optimally manage a disease if and when that condition existed in a vacuum, independent of any interacting or intervening factors. This understanding is necessary, but, in many cases, does not directly or reliably apply to the care of an individual person—especially a person with MCC (4).

Although all patients exist in unique biopsychosocial contexts, the care of patients with MCC is particularly complicated by the interaction of multiple, concurrently active chronic conditions. When individual, disease-specific treatment strategies are pursued for these patients—indiscriminately and in parallel—the resulting care can be ineffective, impractical, and unsafe (5,6). Advocates of patient- or person-centered care recognize that the best way to manage complex patients is with comprehensive and flexible treatment strategies that can adapt to the nuances of individual contexts.

Guideline developers who desire to incorporate and encourage this understanding face a key dilemma. Person-centered disease management strategies, by their very nature, lack the disease specificity to fit into traditional, disease-oriented practice guidelines. The inability of guidelines to incorporate person-centered recommendations accentuates the significance of this dilemma by ultimately limiting the guidelines’ usefulness.

Consider Stanford’s Chronic Disease Self-Management Program (CDSMP), for example. The CDSMP is a group-based, disease-agnostic self-management program designed to generically enhance patients’ capacity to deal with the burdens of chronic disease. Participants select which self-management strategies they will use from a menu of options and according to their preferences. They also prioritize the conditions or issues they will seek to address based on their own perceptions of context, need, and ability. The body of evidence related to the CDSMP suggests that it improves patient-reported outcomes regardless of patient diagnosis (7,8). As such, CDSMP implementation is a key priority of the Department of Health and Human Services’ effort to optimize the care of patients with MCC (2) and the Centers for Disease Control and Prevention has recommended it become part of routine care for all patients with any chronic condition (8).

Arguably, the CDSMP should be a component of clinical practice guidelines for every chronic condition, and yet it appears in none. One reason for this, paradoxically, is that person-centered approaches to chronic disease management are rarely the best option for optimal management of any single disease if and when that disease existed in a vacuum. The CDSMP is not the most efficacious treatment for depression, for example, nor is it the most efficacious treatment for diabetes or arthritis or cancer. But what is the single best intervention for a patient with depression, diabetes, arthritis, and cancer? The answer to this question is not currently known, but to a patient living in that context—and to the clinician caring for him or her—it remains the most important question to have answered.

The Opportunity for Person-centered Guidelines

Some guideline developers have succeeded in incorporating person-centered recommendations into clinical practice guidelines. Examples include advocating for the use of clinical judgment in formulating treatment plans and for using shared decision-making strategies that incorporate patient values, preferences, and priorities. These recommendations are useful but, in contrast to their more traditional and disease-focused counterparts, they encourage things that are often difficult to identify, operationalize, and enact—such as attitudes or concepts. The ultimate and practical value of clinical practice guidelines rests in their ability to provide direction on what to do (and, implicitly, measure). This is straightforward in some clinical circumstances, but in the setting of chronic disease—and especially among patients with MCC—it is rarely obvious or clearly actionable. The key challenge and opportunity for clinical practice guidelines for chronic disease management, then, is to identify a mechanism for translating person-centered intentions into clearly described and actionable clinical activities.

Minimally Disruptive Medicine as a Proposed Solution

In an effort to guide understanding in this regard, our research team at Mayo Clinic has spent the last 5 years developing a patient-centered and context-sensitive model of care called minimally disruptive medicine (MDM) (9). Our particular contributions add to and draw from those of the International Minimally Disruptive Medicine Workgroup (www.minimallydisruptivemedicine.org ) and are informed by the synthesis of insights from our own internally and externally funded research projects, the engagement of key and diverse stakeholders, and ongoing and reflective transdisciplinary discourse.

In summary, and in the simplest sense, MDM describes patient context as a balance between workload and capacity. Workload comprises all the things patients must do (physically, cognitively, or otherwise) to be well and to fulfill meaningful goals for and roles in life and health. In the complex circumstances of individual patients with MCC, the unique compositions of workload will vary—inevitably including contributors from health, healthcare, and life—but the resulting construct emerges as an experience that is consistent and relatable—namely, a burden. Capacity comprises all the resources—physical, mental, social, financial, personal, and environmental—that patients with MCC can mobilize to carry out the work of life, health, and healthcare, and, in turn, counteract or avoid the experience of burden.

For patients with MCC, capacity is always at risk of being overwhelmed. As the limits of capacity are breeched, patients begin to experience care as a disruption to their lives. They may begin to haphazardly prioritize aspects of the workload that are feasible, but of little value. In these cases, patients are prone to clinical and personal decompensation. It stands to reason, then, that for health care to be effective for patients with MCC, special efforts must be taken to augment the balance of workload and capacity so that it favors the patient (10). The advantage of this conceptualization—which itself derives from a synthesis of mathematical, psychological, and social underpinnings—is that it serves to make sense of patient context (11). For guideline developers, this also begins to overcome the challenge of translating person-centered intentions into clinically actionable recommendations. Such recommendations are necessary to facilitate the development of person-centered quality metrics that are more appropriate for patients with MCC.

Recommendations for Consideration

To extend the applicability of clinical practice guidelines to patients with MCC, we present three strategies that are consonant with a person-centered approach based in MDM. In order of increasing complexity and uncertainty, they are:

  1. The MCC caveat: a simple statement that acknowledges the limitations of disease-centered treatment recommendations for patients with MCC. This statement should serve to reduce clinicians’ expectation that following a recommendation—especially when it is not strong—will do more good than harm. It should also alert policy-makers to the potential disservice done to patients with MCC when disease-centered recommendations are linked to quality metrics that guide incentives and practice.
  2. The MCC context assessment: an explicit recommendation for the assessment of patient context before applying disease-centered treatment recommendations. These assessments should include an evaluation of patient workload and capacity. As an example of a workload assessment, Mair and May have proposed a question as simple as “Can you really do what I am asking you to do?” (12). Ideally, this question should follow a careful consideration of and deliberation about what should be done.
  3. The MCC treatment optimization: a proactive adaptation of the disease-centered treatment recommendation based on understandings elicited from the context assessment. In accordance with a MDM approach, this amounts to enacting efforts to support patient capacity to implement essential care and/or removing non-essential care and tailoring treatment approaches to something more feasible and effective. For example, a patient-centered guideline for diabetes management in the context of MCC might read:

If the MCC context assessment suggests that optimal diabetes-oriented care is likely to be ineffective or impractical for the patient at this time, the clinician—in partnership with the patient—should look for opportunities to remove low value and excessively burdensome care (including unnecessary testing and appointments), regardless of indication. If no such care is identified or if its removal does not sufficiently change the patient’s context, patient-centered adaptations of the diabetes treatment strategy outlined here may be pursued. In order to do this, the clinician should first partner with the patient to assess the relative value of optimal diabetes-oriented care in achieving important patient goals. If this value is judged to be low, the clinician and patient can consider temporarily modifying or suspending diabetes-oriented treatment targets (e.g., HbA1c targets) and/or changing management strategies (e.g., by changing from insulin to an oral antidiabetic medication) to better fit patient preference and capacity. Alternatively—and if optimal diabetes-oriented care is essential for achieving important patient goals—supportive efforts should be taken to enhance patients’ capacity to fit this care into their lives (e.g., by connecting patients to community-based resources that can help with transportation, prescription refills, self-care).

A key and inherent limitation of person-centered clinical practice guidelines is that they will never be able to provide patient-specific recommendations for how to adapt disease-centered guidelines. What they can do is provide conceptual direction on how such adaptations should be made. MDM may provide a framework for orienting this guidance and for making sense of the application of patient-centered clinical wisdom. To that end, we have proposed and organized a flexible toolbox of interventions that clinicians can use to match their efforts to the unique contexts of patients with MCC (11).


Certainly, guidelines must continue to communicate what the best science supports for optimal management of a given disease if and when that condition existed in a vacuum. As the prevalence of MCC rises however they must also provide specific, actionable, and patient-centered guidance on what is practically feasible, technically safe, and ethically appropriate in each setting. Traditionally, professional societies and guideline panels have focused on the former. America needs bold and innovative guideline developers willing to focus on the latter. When guidelines change, policy and practice can follow. To the extent this occurs, patients with MCC could be the first to reap the benefits.


Aaron L. Leppin, MD
Assistant Professor of Health Services Research
Knowledge and Evaluation Research Unit
Mayo Clinic
Rochester, Minnesota

Victor M. Montori, MD, MSc
Professor of Medicine
Knowledge and Evaluation Research Unit
Mayo Clinic
Rochester, Minnesota


The views and opinions expressed are those of the author and do not necessarily state or reflect those of the National Guideline Clearinghouse™ (NGC), the Agency for Healthcare Research and Quality (AHRQ), or its contractor ECRI Institute.

Potential Conflicts of Interest

Dr. Leppin states the Mayo Clinic research was supported by funding from NIH and AHRQ. No support was received from industry of any kind. Both authors declare no financial or personal conflicts of interest with respect to this commentary.


  1. Ward BW, Schiller JS, Goodman RA. Multiple chronic conditions among US adults: a 2012 update. Prev Chronic Dis. 2014;11:E62.
  2. Department of Health and Human Services. Multiple chronic conditions—A strategic framework: Optimum health and quality of life for individuals with multiple chronic conditions. Washington (DC): Department of Health and Human Services; 2010.
  3. Parekh AK, Kronick R, Tavenner M. Optimizing health for persons with multiple chronic conditions. JAMA. 2014;312(12):1199-200.
  4. Wyatt KD, Stuart LM, Brito JP, et al. Out of context: clinical practice guidelines and patients with multiple chronic conditions: a systematic review. Med Care. 2014 Mar;52(Suppl 3):S92-100.
  5. Boyd CM, Darer J, Boult C, Fried LP, Boult L, Wu AW. Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases: implications for pay for performance. JAMA. 2005;294(6):716-24.
  6. Dumbreck S, Flynn A, Nairn M, et al. Drug-disease and drug-drug interactions: systematic examination of recommendations in 12 UK national clinical guidelines. BMJ. 2015;350:h949.
  7. Ory MG, Ahn S, Jiang L, et al. Successes of a national study of the Chronic Disease Self-Management Program: meeting the triple aim of health care reform. Med Care. 2013 Nov;51(11):992-8.
  8. Brady TJ, Murphy L, Beauchesne D, et al. Sorting through the evidence for the Arthritis Self-Management Program and the Chronic Disease Self-Management Program, executive summary of ASMP/CDSMP meta-analyses. Atlanta (GA): Centers for Disease Control and Prevention; 2011 May. 30 p.
  9. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009;339:b2803.
  10. Leppin AL, Gionfriddo MR, Kessler M, et al. Preventing 30-day hospital readmissions: a systematic review and meta-analysis of randomized trials. JAMA Intern Med. 2014;174(7):1095-107.
  11. Leppin AL, Montori VM, Gionfriddo MR. Minimally disruptive medicine: a pragmatically comprehensive model for delivering care to patients with multiple chronic conditions. Healthcare. 2015(3):50-63.
  12. Mair FS, May CR. Thinking about the burden of treatment. BMJ. 2014;349:g6680.


My kidney donation experience: A pathway for minimally disruptive medicine

Submitted by Kelly L Nottingham, MPH

Hearing the words from a doctor that ’You need a kidney because your kidney function has declined significantly’ is not what you ever want to hear in reference to you or a family member.   In early 2014, our family was confronted with this exact situation.  We heard those words in reference to my mother.  Having a fistula implanted, determining the best fluid intake, dietary restrictions and pending dialysis was our new normal.   So, when my mother was diagnosed with end stage kidney disease and put on the transplant list, there was no question I would immediately begin the process to become a potential living donor.  There was no hesitation that I would subject myself to the blood work and testing.  I never realized that the process could take months… and in my case years to become “cleared” for donation.  In August 2014, I made the three hour drive to the large academic medical center to undertake my two-day, intensive evaluation.  The evaluation involved blood work, imaging, EKG, Echocardiogram, stress test, 24 hour blood pressure monitoring, glucose tolerance test, psychological exam and complete physical.  With each encounter, the healthcare professionals reassured me that I looked like a viable donor but they would know more after they presented my case to the “committee.”

When I left the medical center, I felt confident that I would be cleared and we could get the transplant underway.  I had just started a new job and thought it would be easier to take leave before I had gotten too engrained in the position.  However, that wasn’t my reality.  The follow up phone call I expected in the next week did not occur as I had hoped.  I was subjected to additional blood work and asked to ‘lose weight.’  Being the over-achieving first born, the fact that I did not qualify immediately was devastating and frustrating.  I immediately changed my diet and started exercising more.  For the next year, I endured additional testing, appointments and an ongoing internal feeling of letting my mother and family down as I was a “near perfect” match based on my blood and tissue typing.

Along the way I learned the system was not always focused on me and how the experience was affecting me and my family.  I discovered that I had to become my own advocate and push and prompt the transplant team to retest and not count me out.  I also had the stress of feeling like a failure to my mother and family.  In October 2015, I made the drive back to the medical center for another intensive two-days of testing.  While it was much easier this time physically, it was emotionally taxing to know that I could have more “targets” to meet – even though I had lost 15 pounds and reduced my cholesterol significantly.  The physicians all noted that I had made significant life changes but this time there was something in my blood work.  I had an elevated APTT and they needed additional testing to ensure there were not genetic issues.  Defeated, I made the long walk to the lab for additional blood work.

A week later, I was asked to drive back to the medical center for another appointment.  This time it was with a hematologist.  This doctor would be determining my fate – – could I or could I not be a living donor and also, did I have some terrible bleeding disorder.  Luckily, this physician saw the desperation in my eyes.  He first reassured me that I did not have a bleeding disorder and that I was cleared based on his evaluation.  At this moment, my only response was tears.  Granted, I had heard these words before but this time, this was all we needed and it only took another month.

After my mother was cleared for surgery in December 2015, we had to just wait for a surgery date.  We scheduled the date for surgery for March 6, 2016.   The surgery date had only taken 24 months to finally be scheduled.  One month prior to surgery, I got a frantic call from my transplant coordinator who needed me to have a skin check or we could not do the surgery.  After all of the appointments, the regulations had changed in January and this was another requirement to be considered a viable donor.  Luckily, I work at a medical school and I begged coworkers for a favor and was able to meet this task.

Becoming a donor was an easy decision for me but the process was emotional, frustrating, terrifying and quite disruptive at times. My experience demonstrates the complicated process by sharing the unclear outcomes, personal role disruption, conflicting information and an overall sense of urgency.  Although I achieved my ultimate goal of donating my kidney, the disruption and chaos involved in the process made it far from a successful experience.  In August 2017, I started my PhD and decided to focus my research on the importance of live kidney donation and what can be done to improve the overall process – specifically focusing on the living donor.  In the US, 116,571 people are in need of a lifesaving organ transplant with over 3,000 new patients are added to the kidney waiting list monthly (OPTN, 2017). According to Organ Procurement and Transplantation Network (OPTN), a public-private partnership that links all professionals involved in US donation and transplantation system, 17,107 kidney transplants have taken place in the United States with 5,537 of those kidneys coming from living donors (OPTN, 2017).  Many patients on the kidney transplant list die or become too ill to eventually have a kidney transplant.

I want to address the disruption – by focusing on the donor and how the evaluation process can be improved.  Grounding my work in Minimally Disruptive Medicine, an approach grounded in a conceptual model and three cumulative complexity model theories (Normalization Process Theory, the Burden of Treatment, and the Theory of Patient Capacity), I hope to use my lived experience to help others (May, 2009 & Shippee, 2015).  It wasn’t until I read, The Lived Experience of “Being Evaluated” for Organ Donation: Focus Groups with Living Kidney Donors, by Hanson, et al that I realized my experience was not unique (Hanson, 2017).  Other living donors had some of the same experiences and feelings as I did during the process.

While I would never change my mind to not donate my kidney, having more clarity about the evaluation process, calibrated expectations about potential delays, and insights from real experiences from other living donors could have made the process easier. Developing, testing, and implementing tools to support this process may begin to address donor needs. Incorporating kind and careful minimally disruptive medicine concepts into live kidney donation could improve the overall process for the donors and ultimately increase live kidney donation over time.


Hanson, CS, Ralph, AF, Manera, KE, Gill, JS, Kanellis, J, Wong, G, Craig, JC, Chapman, JR, Tong, A. (2017) The Lived Experience of “Being Evaluated” for Organ Donation:  Focus groups with Living Kidney Donors.  Clin J Am Soc Nephrol. doi/10.2215/CJN.03550417

May C, Montori VM, Mair, FS.  (2009) We need minimally disruptive medicine.  BMJ. Aug 11; 339: b2803

Organ Procurement & Transplantation Network (OPTN). (2017)  http://optn.transplant.hrsa.gov/  Accessed on 01Nov2017.

Shippee, ND, Shah, ND, May, CR, Mair, FS, Montori, VM.  (2015). Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice.  J Clin Epidemiol. 65 (10):  1041-51


I would like to acknowledge Marleen Kunneman, PhD, Anna Kerr, PhD, Melissa Thomas, PhD, MPH, and Lisa Forster, MS for reviewing and editing the document.

A Patient, Minimally Disruptive Medicine, and a Palliative Care Program

Submitted by Paige Organick, Nataly  Espinoza Suarez, M.D., Anjali Thota and Bjorg Thorsteinsdottir, M.D.

An 84 year old woman, whom I will call Amy, went to the hospital 4 years ago to receive a pacemaker. The surgeons botched the surgery, and subsequently told her she’d have, at most, 2 years to live. Four years and many procedures, interventions, and subsequent infections later she is still going strong. She carries a bag for her PIC line and cares for her husband, who is 94% blind, on dialysis, has had cancer, and is recovering from leg surgery. Amy and her husband live alone in their own home. If there ever was a couple in need of minimally disruptive medicine (MDM) to decrease their treatment burden, it is this couple.

After the prolonged hospitalization, Amy was dependent on a high risk heart medication that kept her hooked up to a cardiac monitor and essentially confined to her hospital room. Fortunately, she was invited to participate in the Palliative Homebound Program of the Care Transitions team at the Mayo Clinic. The multi-disciplinary team works on the Palliative Care homebound program; in theory, they assist seniors over the age of 60 with high risk medical conditions transitioning in and out of the hospital, focusing on palliative care and in-life transitions. But it seems they do much more than that, working on fall prevention, simplifying medications, and coordinating with nursing home staff, social workers and physicians to best aid the patient in their own home. Dr. Thorsteinsdottir and a Nurse Practitioner regularly visit Amy and her husband in their own home, and in return they freely call her personal cell phone whenever they have even the smallest question.

The team freely uses the basic concepts of MDM and the accompanying theories, even though they never call it by name. They acknowledge that imbalances occur between the patient’s capacity to perform cognitive and physical actions and the workload they were assigned by their various clinicians. This imbalance causes a burden of treatment, meaning that the patient feels overwhelmed, saddled with or stressed over some aspect of their therapeutic treatment. The Care Transitions team seeks to right this imbalance of overwork on the patient’s behalf. Nurses call regularly to assess coping, ongoing need and co-ordination of necessary appointments. Dr. T and Nurse practitioners come to Amy’s home to visit with the couple, relieving much of the burden of dealing with multiple appointments. Advice from subspecialty physicians is mostly sought via clinician to clinician phone calls. This means that, to get the most care, Amy didn’t have to navigate busy downtown Rochester, deal with finding parking, then walk the long distance up the ramp and into the clinic, which she said made her too tired.

Having Dr. T come to her home made care not only easier, but also more effective. It helps Dr. T and the nurses see the home environment and identify fall risks and other hazards, and better get to know and understand the patients on their own terms. This creates holistic care where clinicians better understand their patients, their values, and how to create medical values that align with that of their clinicians. A big focus of MDM, and the Care Team, is to understanding the patient’s needs and values. For example, some may not mind getting up early in the morning to drive their spouse to dialysis; Amy can’t stand it. No matter what, this is a burden of treatment for the couple. However, Dr. T and the Care Team understands the couple well enough to figure out an alternate bus Amy’s husband can take so Amy doesn’t have to wake up so early, decreasing  Amy’s burden of her husband’s treatment, making her more happy, free, and less tired.

The Care Transitions team implicitly practices MDM, looking to simplify medical care for their patients. This indicates that the concept of MDM could be more widespread than previously believed, making it challenging to track and accurately assess how many care teams use MDM. This creates wide implications for how researchers ought to understand and track the spread of MDM. Knowledge of the term does not indicate use of the theories and philosophies behind it, and thus cannot be the sole way researchers look for other clinics using MDM, form collaborations, and provide resources for “MDM” clinics.


Do the D5 measures reflect a friendly contextualization of care?”

Deeyar Itayem is a third-year student at the Mayo Clinic School of Medicine. As part of her clerkship in family medicine, Ms. Itayem responded to a writing prompt meant to develop her thoughts about the role of a primary care physician. The prompt: “The ideas Itayembehind MDM or contextualized care ask us to respect the needs and circumstances of the patient before us as we construct our care plans. But that puts us in a weird spot, yes? Because just as MDM is this decade’s push, last decade’s push was evidence-based medicine: the idea that, through science, we can find a ‘best’ way to handle a problem, a ‘best’ treatment. It becomes our job to apply the evidence with less and less spin to it, if we dedicate ourselves to EBM purity. With that in mind, what is your opinion of the Minnesota Community Measures’ “D5” criteria (http://mncm.org/reports-and-websites/the-d5/)? What are the risks and benefits of adopting guideline-driven care? Do the D5 measures reflect a friendly contextualization of care?” Ms. Itayem’s response follows:

My first day with Dr. Lillie in clinic, we began with a meeting to discuss diabetes management of her panel. To ensure that patients were meeting goals, the team of nurses and panel assistant hovered over pages that were covered in colors that were intuitive – green was good and patients were meeting all the goals, red was bad and patients were not meeting the goals. Even listening for a minute or two, you could pick up on the dilemma: Anyone whose HgbA1c was above 7% was automatically in the red.  Despite significant improvement in HgbA1c from 11% to 8.9%, this particular patient was still in the red and was not budging. The Minnesota Community Measures D5 criteria set the rules of the land, another checklist that was initially hard for me to swallow. We have had so many lectures on the importance of checklists, and I can see how useful it can be to measure all diabetes patients with 5 simple measurements. But a part of me cringes at the simplified boxes. You can easily review the green and red boxes in the panel to make sure patients don’t fall through the cracks. However, the colored boxes didn’t tell the whole patient’s story. There was no disclaimer that described the socioeconomic reality of the patient, no blue box on the side to say that depression plagued this patient, no asterisk to report the significant improvements.

Immediately after the D5 meeting, Dr. Lillie sent me in to talk to my first patient who happened to be one on the panel. I walked in to introduce myself to find the patient with the D5 sheet in hand, all the boxes neatly filled out. “Green. Green. Red. Green. Green,” I said in my head. Our conversation initially centered around the numbers, how her cholesterol was “good,” daily aspirin intake was exactly as recommended,  her A1c was sooo close to 7% but red, etc. The conversation went easier as the goals were mutually agreed upon. But then I asked her to put the D5 checklist aside for a second to tell me how things were going. How was eating and exercising? How was she enjoying her days of retirement? Did she feel safe where she lived? Those were more the difficult conversations.

My experience thus far with the D5 criteria has been generally positive in that it gives patients specific measurable goals to make diabetes management tangible and the goals clear. To attain any health improvement, the importance of clear goals have been drilled into us through our “Motivational Interviewing” class. But as simple as you drill it down, diabetes is complex and the lives of the patients it consumes are likewise more involved than 5 checkboxes. The fact that it standardizes diabetes care is admirable, but it doesn’t replace the medicine that we’ve learned. What worries me is how my patient viewed it as a substitute to our conversations about her own goals. Once she hits all of the 5 goals on D5, is she done? Instead of teaching our patients how to make their own goals and crafting a culture of self-improvement, we’ve replaced that beautiful process with 5 rigid boxes standardized across the state.

Upon further research, I found websites touting D5 criteria scores for specific clinics in Minnesota. Physicians are being held accountable for their patients attaining 5 specific goals. My question is – do these scores reveal more about the physician’s worth or do they tell us more about the population they serve? Just as standardized test scores are used to assess a school’s success even though many factors play into that score. It is the same discussion. Are standardized tests important? Of course. Should a student’s score matter more than their improvement or the context of the score in their life? Hmmm.

Looking forward to navigating the checklists to come in my career. Hopefully, their implementation will help my patients receive better care, but I cannot help but cringe at the way they simplify the intricate patient lives. I hope we continue to treat patients instead of their diseases.

What are the risks and benefits of adopting guideline-driven care?

Jeremiah Joyce is a third-year student at the Mayo Clinic School of Medicine. As part of his clerkship in family medicine, Mr. Joyce responded to a writing prompt meant to develop his thoughts about the role of a primary care physician. The prompt: “The ideas behind MDM or contextualized care ask us to respect the needs and circumstances of the patient before us as we construct our care plans. But that puts us in a weird spot, yes? Because just as MDM is this decade’s push, last decade’s push was evidence-based


medicine: the idea that, through science, we can find a ‘best’ way to handle a problem, a ‘best’ treatment. It becomes our job to apply the evidence with less and less spin to it, if we dedicate ourselves to EBM purity. With that in mind, what is your opinion of the Minnesota Community Measures’ “D5” criteria (http://mncm.org/reports-and-websites/the-d5/)? What are the risks and benefits of adopting guideline-driven care? Do the D5 measures reflect a friendly contextualization of care?” Mr. Joyce’s response follows:

The Mayo motto “the needs of the patient come first” uses the singular noun; the patient is an individual. In practicing evidence based medicine, however, I think we often make the mistake of using population-based recommendations for individuals. There is an interesting precedent for the idea that a “one size fits all” model fits no one perfectly. In his book The End of Average, Todd Rose describes a U.S. Air Force study of pilot average body measurements, designed to tailor a cockpit that fit the average pilot. Out of over 4,000 pilots measured to determine the perfect dimensions, not a single one was within the average range in all of the 10 primary dimensions (Rose, 2016). This article is a fascinating physical example of a truth that undoubtedly applies to medical recommendations as well.

In practicing medicine, we should focus on tailoring the recommendations to fit the patient, rather than forcing the patient to fit the recommendation. We are all aware of the benefits of D5 recommendations on the long-term health of populations, but we also know some patients have ASA-induced asthma and others have statin-induced myositis. Still others haven’t been able to quit smoking despite their best intentions. We as future providers risk losing a therapeutic alliance with patients if we push too far or too hard. Someone with a recent diagnosis of diabetes may quickly be overwhelmed if we add on all the D5 as soon as their A1c is at 7.1%. As Rose describes in his book, the Air Force’s solution to their cockpit dilemma was increasing flexibility in the design, allowing pilots to adjust their planes. This approach resulted in a dramatic decrease in casualties. We may see the same effect when we work with patients to achieve the greatest benefit to their health. Across a panel of patients, we would be much more satisfied with a population of half-treated and gradually improving diabetics than we would be with losing many patients to follow-up due to frustration and disappointment with a rigid healthcare system.

(Rose, 2016) “When U.S. air force discovered the flaw of averages.” https://www.thestar.com/news/insight/2016/01/16/when-us-air-force-discovered-the-flaw-of-averages.htmlhttps://www.thestar.com/news/insight/2016/01/16/when-us-air-force-discovered-the-flaw-of-averages.html