Technical versus Humanistic Shared Decision Making revisited: Evaluating its occurrence

Submitted by Marleen Kunneman & Victor Montori

In an earlier post, we reflected on technically correct and humanistic shared decision making (SDM). In our view, it is unclear “whether having a technically correct structure of the SDM process improves the likelihood that the care decisions made will contribute to improve the patient situation.” We called to look beyond what is technically correct, to uncover humanistic SDM and caring conversations.

We recently published a systematic literature review in which we assessed the extent to which evaluations of SDM assess the extent and quality of humanistic communication, such as respect, compassion, and empathy. We looked for studies evaluating SDM in actual clinical decisions using validated SDM measures. We found 154 studies, of which only 14 (9%) made at least one statement on humanistic communication. This happened in framing the study (N=2), measuring impact (e.g., empathy, respect, interpersonal skills; N=9), as patients’ or clinicians’ accounts of SDM (N=2), in interpreting the study results (N=3), and in discussing implications of the study findings (N=3).

In addition, we looked whether the validated SDM measures used contained items on humanistic communication. The eleven SDM measures used contained a total of 192 items. Of these, only 7 (3.6%) assessed aspects of humanistic communication.

Our review shows that assessments of the quality of SDM focus narrowly on SDM technique and rarely assess humanistic aspects of the patient-clinician conversation. We conclude that considering SDM as merely a technique may reduce SDM’s patient-centeredness and undermine its contribution to patient care.

In evaluating technical SDM, we have measured with our eyes and our ears. Perhaps the fox from “The Little Prince” was on the right track when he noted: “It is only with the heart that one can see rightly; what is essential is invisible to the eye.”

The full paper was published in Patient Education and Counseling and can be found here.

This study was part of the Fostering Fit by Recognizing Opportunity STudy (FROST) program, and has been made possible by a Mapping the Landscape, Journeying Together grant from the Arnold P. Gold Foundation Research Institute.

A Pragmatically Comprehensive Model for Delivering Care to Patients with Multiple Chronic Conditions

Patients with multiple chronic conditions must deal with complex circumstances and significant burdens of treatment and disease. Stakeholders at all levels are invested in finding innovative ways to effectively care for these patients. Here, Dr. Aaron Leppin and colleagues show how Minimally Disruptive Medicine can be operationalized to optimize care for these complex patients. This paper introduces the first conceptualization of a specific care delivery model built upon the theoretical precepts of MDM. (Leppin MDM Healthcare Paper)

NAPCRG Plenary on Minimally Disruptive Medicine – audio is out!

The North America Primary Care Research Group hosts the foremost international annual conference on primary care research. In 2014, it took place in New York City on November 21-25. It started with a plenary by Victor Montori on Minimally Disruptive Medicine. The audio for that plenary has now been released and can be enjoyed on the Soundcloud website or App. The audience resonated with the message of Minimally Disruptive Medicine. A blog Victor penned discussed the upcoming talk as focused on a careful and kind approach to healthcare. The audience gave these ideas a standing ovation, but not all found the solution complete: Martin Roland for one thinks more primary care research to address the enormous needs of patients with multiple chronic conditions is needed. And that is what we are trying to do.

REPOST: Is Burden Of Treatment A Barometer Of Quality Of Care? from Carl May

Frances Mair and I have an Editorial in this week’s British Medical Journal that sets out some of the key problems around Burden of Treatment and multi-morbidity. That the BMJ should commission this editorial from us shows that the idea of Burden of Treatment is getting traction across the healthcare economy. And why shouldn’t it? The bug issue here is patient and carer workload – something that we know much less about than we should. The editorial comes hot on the heels of an important meeting sponsored jointly by the National Institute of Health Research and the Royal College of General Practitioners that sought to develop a strong research agenda on multi-morbidity. The key message that I took away from that meeting was that there was a real risk of turning multi-morbidity into a kind of new disease in itself – in the way that we often now hear chronic illness and long-term conditions spoken about in a quite undifferentiated way. In fact, the big problems here are at a system level, and they’re the problems that Frances and I discuss in our editorial. I was a plenary speaker at the RCGP NIHR Multimorbidity meeting and I’ve embedded my powerpoint presentation below.

Carl May’s blog

Multimorbidity, Burden of Treatment and Intervention Design from Carl May

Minimally Disruptive Medicine in Maine

It was fun to present MDM to our colleagues associated with MaineQualityCounts. They are doing great work and this work clearly resonated with frontline folks. For example, nurses working in the Community Care Teams found it compelling to think of their work as promoting / defending patient capacity. You can review the presentation here and the video here.

It is very clear that capacity that could be deployed to do meaning-making work (spend time with family, pursue interests, support loved ones, achieve goals) will compete favorably with patient capacity vs. work of being a patient that is disconnected from patient goals. In failing, the healthcare system will respond with more work or with disparaging comments about the patient or by firing the patient. This is going to come to a head as a wave of previously underserved people, many with chronic conditions and most with limited capacity for self-care, will encounter health care systems well-oiled to achieve disease-specific performance measures. The solution here is to implement minimally disruptive medicine. It is frustrating to me that we still do not know exactly how to do it, but research grants have been submitted and our team continues to explore best approaches. We need to do more, faster. Our patients deserve it.

MDM and Right Care: Reflections on the 2013 Lown Conference

By Aaron Leppin, MD (@aaronleppinmd)

“Do as much as possible for the patient, and as little as possible to the patient.”

This was the mantra of the 2013 Lown Conference and the personal motto of Dr. Bernard Lown, a beloved clinician and activist and winner of the Nobel Peace Prize.

As a representative of the International Minimally Disruptive Medicine (MDM) Workgroup, I had the privilege of attending the 3-day conference in Boston in early December. Hosted by the Lown Institute, it brought together like-minded clinicians, researchers, patients, journalists, and patient advocates from around the world to consider some of the most fundamental problems in medicine and healthcare today—everything from the patient-centeredness of clinical encounters to the effects of policy and medical education on care activities. In many ways, the conference served as a “revival” meeting for those of us that believe healthcare should be delivered in a more effective, supportive, and context-sensitive manner.

Although the Institute (and MDM for that matter) places special emphasis on raising awareness about waste in healthcare and in developing strategies to avoid the perils of overtreatment, the Conference itself was much broader in scope. Indeed, both the Institute and MDM recognize the need for care to be “right.” In some cases, this may mean healthcare should be not only minimally disruptive but also “maximally supportive.”

For example, consider these words distributed to conference attendees by the Lown Institute:

“We envision a more just and compassionate world where health and health care are rights; where physicians serve as healers and as advocates for those who are vulnerable and most in need of care; where patients receive the medical services they need and are safe from unnecessary treatment and harm; and where health care exists for the benefit of patients, communities and nations.”

Overall, the commonality between the visions for healthcare of the Lown Institute and what we are trying to promote in Minimally Disruptive Medicine are unmistakable.

The first day of the conference was devoted to identifying “right care” through the optimization of the patient-clinician dialogue. From an MDM perspective, these discussions should include an assessment of patient capacity, context, and goals for life and health. In MDM, we promote the use of shared decision making and the establishment of a strong and meaningful patient-clinician partnership to help achieve this end. Dr. Lown, in his book, The Lost Art of Healing, also promotes the importance of the patient-clinician bond.

The second day of the conference focused on achieving right care as a society. It touched on everything from the moral and spiritual dimensions of overuse to practical strategies for engaging stakeholders in change. As most of my research related to MDM focuses specifically on patient-level interventions, I found many of these broader discussions to be quite enlightening and challenging.

The final day consisted of a number of concurrently conducted working group sessions. I attended one devoted to the development of a research agenda where I learned a lot about the work being done to characterize the problem of overuse in healthcare. Other sessions focused on Choosing Wisely (a component of the MDM toolkit), medical education, and public engagement, for example.

Overall, the Conference was a fabulous experience and the Lown Institute should be commended for the work they are doing. In my view, supporters of MDM should be (and in many ways already are) supporters of Lown.

Please consider joining myself in signing the Right Care Declaration and showing your support for a “better, more affordable, more compassionate health care system.” This can be quickly done at

Also consider following the Institute on Twitter at @lowninstitute

The Diagnosis Difference – a Pew Research Center report about chronic disease and the internet

The work of being a chronic patient and the Internet

A propos of the Pew Research Center 2013 report “The Diagnosis Difference. A portrait of the 45% of US adults living with chronic health conditions by S. Fox and M. Duggan”

 by Victor M. Montori, MD, MSc

As the epidemic of chronic disease affects more people at younger ages, our knowledge gaps about the work these patients do to achieve their goals are becoming quite obvious. Indeed, we know very little about how much in a day patients with chronic conditions devote to their health. Best estimates suggest 2 hours per day, making patienthood a part time job. What do these 2 hours include? According to seminal theoretical work by Carl May and empirical work by the International Minimally Disruptive Medicine (MDM) group, the work of being a patient comprises of (a) making sense of disease and treatments; (b) enrolling others and planning care; (c) operationalizing care; and (d) monitoring and appraising care.

The latest report from the Pew Research Center (The Diagnosis Difference, Pew Research Center, November 2013) about the use of the internet for health focuses on the self-reported practices, late in 2012, of 3000 Americans, about half of them living with one or more chronic conditions.  This report offers some key insights into how these patients perceive their information-related activities both on- and offline. Some general findings that offer context here include:

  •  Socioeconomic disadvantage is more likely among adults with multiple chronic conditions. This disadvantage extends to internet access. Access is quite prevalent (72%) but less than access among healthy adults (89%). Similarly, this disadvantage extends to access to cell phones (not clear from the report what proportion of cell phones are smart phones with internet access). This diagnosis difference contributes to the notion that patients with multiple chronic conditions swim in the deep end of the pool: face the toughest task with least help.
  • Having a chronic condition is independently associated with a lower likelihood of internet access.  Less internet access is associated with being older and have less education – both associated with having chronic disease. Yet, having chronic disease itself is associated, independently of age, income, and education, with less use of the internet. I believe this can be considered evidence in support of the notion, central to MDM, that patients are often overwhelmed and as a result experience a marked reduction in capacity to access care resources, including the internet. Their own bandwidth is taxed by the burden of treatment.

We will review these insights from the perspective of Minimally Disruptive Medicine. This approach to medical care seeks to minimize the healthcare footprint on the lives of people living with chronic conditions while advancing their goals for health and life.

The work of sense-making

The report shows that when it comes to making sense of disease and treatments, patients with multiple chronic conditions use multiple sources (81% health professional, 61% friend or family, 27% others with similar conditions). Those with internet access are more likely than their healthy peers to seek information about disease, tests, and treatments, including drug information and disease or treatment experience from others. In finding this information, patients with chronic conditions fact-check this information with their clinician.

The information seeking activity starts via a search engine (80% overall, but only 68% for patients with chronic conditions), although patients with chronic conditions are more likely than healthy people to target Federal health websites and specialized health information websites.

Because many people with chronic conditions also are caregivers for others with chronic conditions, it is not surprising that the report finds folks with chronic conditions looking for health information to help others: half of all searches reportedly are undertaken on behalf of others.

An important finding of this report is that a third of internet information adventures are frustrated by a pay wall. Only 2% of people pay; the others end up looking elsewhere and a full 17% reportedly gave up. That is, pay walls add work (if not financial burden) to the already overwhelmed patients with chronic conditions and their caregivers and reduce access to presumably valuable information.

 The work of enrolling others and planning and operationalizing care

This survey has either not captured in full the activity or the activity related to these forms of work happens offline in a hyperlocal way. Here, for example I would have expected to learn about the efforts people with chronic conditions mobilize to get information and access to support services in their own community, electronic ordering of supplies and renewal of medicines, scheduling appointments, secure emailing with their clinicians and access to their own record. Also, perhaps, access to groups online, including Facebook friends and Twitter followers, who share conditions, challenges, or can offer access to help, caregiving, or other resources. One clue in the report: those with multiple chronic conditions are twice as likely to post personal stories and questions, but this represents only 11% of them. The report does find that patients with chronic conditions, like their healthy counterparts, for the most part do not use rating services for clinicians or hospitals.

The work of monitoring and appraisal

The report refers to health tracking as a formal and informal activity that is more common among people with chronic conditions (reported by 80% of those living with 2+ and 70% of those living with 1 chronic condition). Importantly, some of this activity is formal (mostly pen and paper) and is shared with others (by 39% of trackers), particularly clinicians. For these patients, tracking is fateful: 72% think that their tracking efforts are worthwhile and 51% that tracking changed their management. But also some of this activity is informal (mostly mental tracking, reported by 43% of trackers). Informal tracking is of course more taxing of people’s limited bandwidth and as such represents a unique opportunity to support patients with chronic conditions. The overall underuse of e-tracking tools (~1% of trackers) suggests that these have not reached these users either because of their design, cost, platform exclusivity, or limited link with people’s actual meaning-making goals.

There is also limited social engagement in rating services of clinicians and hospitals which is a pity because patients with chronic conditions are touching the healthcare system at so many different points so many times that they are best equipped with comparison and dose-dependent hassle information. They are the canary in the coalmine. Also they are best positioned to detect improvements in care coordination and prioritization.

Implications for Minimally Disruptive Medicine

This report advances our understanding of the challenges multimorbidity places on people’s capacity either directly or through their work as caregivers to others with multiple chronic conditions. This report is particularly informative in relation to sense-making and tracking. Clearly online information sources play an increasing role for these patients, but still healthcare professionals are key sources for original information and for fact checking what is found online.  Patients are not using paid sources and quality rating services for doctors and hospitals. Tracking continues to be a low-tech and informal activity despite its perceived relevance to those who engage more formally in tracking and sharing tracked information with their clinician.

Extrapolating a bit further away from the data, there seem to be opportunities for those who seek to serve these growing patient population. These opportunities refer to answers to the question,

How could we facilitate the work of being a patient (sense-making, enrolling help and planning care, operationalizing the care, and monitoring and appraising care) by reducing the demands tools to harness the power of the internet and of “the social” place on people’s limited capacity (bandwidth, resilience, literacy, mental and physical health, financial health, social capital, and environmental navigability)?

We shall watch carefully for innovations that answer this question with true value for patients swimming in the deep end of the pool – those most likely to struggle alone with few resources to help them. We should also thank the Pew Research Center for this very helpful report.

Minimally disruptive medicine makes to a BS Medicine podcast!

The geniuses at the Therapeutic Education Collaboration, James McCormack and Michael Allan, had me on for their BS Medicine Podcast. They dedicated their SUPERLATIVE episode to minimally disruptive medicine. It was fun(ny) and we hope informative. They offer multiple ways to enjoy their podcasts, but the most direct one I can see is here.

Measuring the burden of treatment – a review

David Eton has led a team of researchers in summarizing existing tools to measure the burden of treatment. The paper was just published. Measuring burden of treatment is one of the cornerstones of minimally disruptive medicine. Making patients and clinicians aware of the burden of treatment might be helpful in moderating the intensity of treatment to ensure it matches without overwhelming the existing capacity of the patient and caregivers. Let us know what you think of this important review.

Minimally disruptive medicine – synonyms to inspire the road ahead.

The last few weeks have seen a surge in discussions in the press about minimally disruptive medicine. The Wall Street Journal had a piece as did the Star Tribune in Minnesota here. This press in turn has led to a number of people to reflect about healthcare and to contact our research team to test the model out.

Meanwhile two teams are working on measuring treatment burden, and two reviews are considering how the Cumulative Complexity Model can help understand the (in)efficacy of lifestyle modification interventions and readmission prevention interventions. Much to do everywhere to lift the burden off patients with multiple chronic conditions.

Importantly, I think, our group has been producing some synonyms that begin to draw in the mind’s canvas different paths toward Minimally Disruptive Medicine:

– Palliative care for those far from the end of life – focus on quality of life, function, symptoms, in achieving patient goals

– Geriatrics for the young – be parsimonious, mindful of comorbidity and limited capacity (the younger parallels with frailty and life expectancy)

– Goldilocks (not too much, not too little, just right) – it is not only about reducing healthcare, it is about optimizing the healthcare footprint making sure that under use of desirable interventions is addressed as well.

– Wellness for the sick – emphasize function to increase capacity as part of the strategy to reduce treatment burden.

– Lean consumption for patients – maximize the efficiency of the work of being a patient.

What other parallels can we draw? What else could we learn about these disciplines?

The quest to reduce the healthcare footprint on the lives of individuals and communities presses on. The response from the audience at the 2013 ICSI Colloquium in St Paul, MN was quite telling: clinicians wondering how to overcome the impotence they feel as they comply with guidelines, care processes, and public reporting that they feel makes them deviate from patient goals; patients echoing my call for patients to lead a revolution in healthcare. Indeed, a patient from Texas, who pertinently had the last word at that ICSI presentation, made an impassionate plea for change, for patient-centered care, for minimally disruptive medicine. She then proposed: Let Patients Lead.  This moved me and reminded me of a friend’s friend who in reviewing the concept said that he felt this should be renamed Maximally Generous Medicine. Another synonym to inspire our journey.