Victor M. Montori @manosin
Activity by Victor M. Montori @manosin
Submitted by Marleen Kunneman, PhD; Michael R. Gionfriddo, PharmD, PhD; Victor M. Montori, MD, MSc
Metaphors are common in clinical medicine and can be helpful in discussing and understanding the complexities of health and illness. Blood vessels are like plumbing, the brain is like a computer, and when facing illness we use all weapons available to fight the disease. The creativity of the human mind is boundless. Metaphors can help communicate and retain complex concepts between clinicians and between clinicians and patients, with clinicians who use more metaphors considered better communicators.1 Yet, these metaphors can be unhelpful when they become so internalised that we don’t recognize them anymore, and, unconsciously, they shape how we think and act. 2
When it comes to medical decision making, the relationship between the clinician and the patient is often compared to a pilot that takes a passenger to his destination, a plumber that fixes the leak, or a mechanic that fixes your car. We need to accept that the pilot, the plumber and the mechanic are the experts and that they are therefore able to make decisions about how to address the problems. We, the ordinary people, have not studied and/or gained sufficient experience to understand these issues, let alone to be meaningfully involved in making such decisions. Such metaphors are often used by opponents of shared decision making to illustrate that the expertise necessary to understand the complex issues of health and illness is not easily translated in the limited time frame of an encounter, and therefore, patients should respect and trust clinicians’ expertise and delegate to them the difficult task of deciding what to do.
In shared decision making (SDM), clinicians and patients work together to figure out how to best address the patient’s situation. It is a conversation between the clinician and patient, a way to craft care, and a way to fundamentally care for this patient, not just for people like this patient. 3 This characteristic makes it inappropriate to use metaphors like mechanics fixing a car. Mechanics take care of cars, not of the owners. It is rare, exceptional, for a mechanic (or pilot, or plumber) to see the owner’s situation in high definition. At best, in fulfilling their duties – fixing the car – they can honor the relationship between the ‘object’ and the ‘owner’. In fundamentally caring for this patient, however, clinicians must take care of both the object – the body – and the owner. This is because, as Hitchens said, patients don’t have a body, they are a body.4
A serious illness that disrupts a person’s hopes and dreams should not be compared to a bump in the road which causes your car to break down. The car does not ‘feel’. The car does not experience side effects. Having an issue or needing maintenance does not change the cars experience of being a car or how it views itself, or it’s ‘carness’. Conversely, humans do feel, they experience side effects, and illness can affect how people view themselves and their place and relationship with society. Furthermore, if the patient’s situation is not addressed in a way that fits their life, they cannot just go back to the shop and undo the repair. Or just replace the broken parts, or, for that matter, get a new ‘object’ and replace the old one altogether. If only health were that simple. Indeed, in a service industry like automobile repair, you don’t co-create an oil change.5 But when it comes to care, clinicians and patients co-create ways to address the patient’s situation. It is this patient’s situation that should shape how care is decided on and delivered, and the method behind care and decisions about health care is the deeply human activity of having meaningful conversations between clinicians and patients.
Using de-humanizing comparisons can be problematic in shaping how we think and act, and in how we are understood and perceived. Most importantly, when using such metaphors, a fundamental aspect of medicine – caring – gets lost, forgotten, or neglected. Metaphors are common and they can support a complex conversation about health or illness, but we must be careful that these metaphors do not distract us from caring.
Authors: Claudia C. Dobler, Gabriela Spencer-Bonilla, Michael R. Gionfriddo, Juan Pablo Brito
Shared decision making (SDM) has been widely advocated  and called the pinnacle of patient-centered care . Translating this ideal into reality has proven challenging . Several papers have identified barriers to the translation of SDM into practice [4-6]. A number of challenges arise in the context of intercultural and inter-linguistic SDM, which may be particularly pertinent to immigrant populations. Some of the challenges of SDM in an intercultural context have been summarized in a paper by Suurmond et al. . These challenges include 1) language barriers, need for interpreters, 2) differences in health beliefs and concepts of illness between the patient and clinician, 3) differences in role expectations, e.g. an apparent preference for a paternalistic approach or desire for family-centered model of decision making, 4) consultation situation (e.g. time constraint and lack of culturally adapted patient information), and 5) low health literacy. Recently, our SDM Working group at Mayo discussed this article with the lens of applying the lessons to the development of an SDM tool for immigrant patients discussing preventive tuberculosis treatment with their clinicians.
A core component of SDM is communication. When clinicians and patients have to communicate through an interpreter, the work of SDM is complicated by: incorporating a third party into a sometimes intimate conversation, disruption of typical communication flow, lengthening of the medical encounter, and the telephone effect when interpreters engage in interpretation and curation of language rather than pure translation. Interpreters, whether professional or lay, may make judgments about which information is important to convey to patients (and back to the clinician) and which information is not. Little is known about how this form of triadic communication affects the process of SDM and the extent to which interpreters’ knowledge, attitudes and beliefs affect SDM and the use of SDM tools in clinical encounters. A recently published study that analyzed three consultations with an interpreter in which an Option Grid for osteoarthritis was used, found that discussions of treatment options were mainly between clinician and interpreter . Patients had only minimal participation in the discussion with an average of four words articulated when they had an opportunity to speak, indicating that patients did not have a significant role in discussing treatment options.
In addition to differences in language, patients may have illness narratives  and health literacy which do not align with those of their clinicians. Providing care is also complicated by the fact that immigrants, especially those newly arrived in the destination country and with limited socio-economic resources, can have pressing material needs and concerns like providing for the daily needs of their families. A holistic approach to improving health and well-being must also take into account each patient’s context in the decision making process.
A single solution will not address all of these barriers, and more research is needed to determine the effectiveness of available interventions. For conversations that require interpreters, more research is needed around the dynamics of these triadic conversations as well as strategies for facilitating SDM in this context. For example, future research in this area could evaluate the effect of academic detailing (on SDM and the use of encounter decision aids), or training of interpreters on using SDM during the clinical encounter. Testing whether this could be achieved with interpreters working over the phone has the potential for widespread implementation. Research is also required to find models of SDM that do not only facilitate collaborative deliberation between two individuals (the patient and the clinician), but facilitate the inclusion of family members and carers into the decision making process. To adapt to cultural differences, group education classes or shared visits in addition to individual encounters may help create a cohesive narrative between patients and clinicians. This strategy is currently being implemented by one of our collaborators in China. As many cultures have a family-centered model of decision making, patients’ families could be integrated into these group classes as well.
At times, SDM conversations will need to incorporate existential or practical needs that extend beyond a specific medical decision. Thus, components of the ICAN tool, which can help prompt conversation about the patient’s context and situation including goals, priorities, capacity, and burden , may be a useful addition to a SDM intervention in this disease context.
While ongoing refugee crises throughout the world have highlighted the limitations of current approaches to SDM, these challenges exist to varying degrees in all encounters; we all have our own microcultures and idiosyncrasies. Discovering how to communicate with one another in an effective, respectful, compassionate, and empathic manner is essential for the realization of the promises of patient-centered care.
We welcome the opportunity for continued conversations and collaborations. Please share your comments, stories and experiences in this area. Contact us at KERUNIT@mayo.edu.
Submitted by Jennifer Clark, M.D.
Obesity is a complex condition that places a substantial burden on patients. Not only does excess weight gain increase one’s risk for many serious health issues, including coronary artery disease, obstructive sleep apnea, type 2 diabetes, stroke, and various malignancies, but obesity and its associated health problems also result in significant economic impact for individuals and the United States health care system as a whole. Additionally, the emotional impact of obesity should not be forgotten; studies suggest that obesity and depression often go hand-in-hand. Obese individuals are at a significantly higher risk for major depression, and the burden of depression is often reduced with sustained excess weight loss.
Even as obesity continues to affect a greater number of this country’s adults, more and more treatment options are becoming available to assist patients with losing weight. However, these treatments involve a dizzying variety of risks, benefits, cost, and relative impact, making for a difficult decision for patients and a challenging discussion for physicians. The importance of this patient-physician interaction and the presence of shared decision making is apparent, as the treatment of obesity, like any other chronic disease, cannot be separated from the patient’s life and circumstances. Instead, it must be personalized and integrated into the context of one’s life.
The patient-physician conversation is an important setting for exploring how current evidence and knowledge may help patients clarify which treatment option makes intellectual, practical, and emotional sense for them. Shared decision making (SDM) tools used during the clinical encounter support these vital conversations about diagnostic and treatment decisions. Such tools have been devised for complex conditions including diabetes, Graves’ disease, and rheumatoid arthritis; however, no SDM tools have yet been developed to support conversations about the treatment of obesity. Therefore, I have decided to join the Knowledge and Evaluation Research Unit to work with the team in developing a SDM tool for obesity treatment. Once created, it will facilitate patients’ engagement in the decision-making process to ensure that the chosen treatments are congruent with each patient’s values, preferences, and lifestyle.
I am very honored and eager to begin working with patients in this capacity as a compliment to my clinical training as a resident physician here at Mayo Rochester. It is my hope that in working on this project, patients will be more confident, active participants in choosing the right treatment for them based on current evidence. I know that I will learn so much from the process and from patients, and I couldn’t be more excited to be working with the KER Unit to further the cause for patient-centered outcomes and research!
Jennifer Clark is an Internal Medicine Resident at the Mayo Clinic.
Submitted by Jennifer Barton, M.D.
Communication is a challenge in my practice. As a rheumatologist in a busy, public hospital clinic, I had the privilege of caring for patients who spoke Spanish (a third), Cantonese (a third), Vietnamese, Russian, Lao, Tagalog, or English. Much can be conveyed in a smile or a warm handshake, but this is insufficient when patient and doctor need to make decisions about a complex chronic condition like rheumatoid arthritis (RA). In particular, it was hard to identify how best to manage their conditions with one of over a dozen available treatments. In my toolbox, there was a gaping hole with no tools available to facilitate RA treatment conversations for this needy population.
Sitting at my desk on a Sunday afternoon drafting a grant proposal to create tools for shared decision making for diverse populations with RA, I came across a paper describing a clinical trial of a decision aid for diabetes. Diabetes and RA share many similarities:
This decision aid was colorful, broken out into “issue” cards – like baseball cards (except not by player, or in this case by drug, but by feature), which I thought would be a great template for an RA decision aid, one that could be presented in different languages for patients with limited health literacy.
On a whim, I wrote to the corresponding author to see if I could learn more about the process and perhaps even use their tool as a template. Within hours, I received an enthusiastic reply from Victor Montori at the Mayo Clinic. This led to a phone call, the proposal, funding, and the work generated from fruitful collaboration and inspiration.
The journey from grant writing to project completion was filled with many adventures. I had never worked with designers or with patients in research. I looked forward to the meetings of our patient advisory board. They were full of laughter and shared stories. Thanks to them I learned about real life with RA. I got a chance to listen to the patients share experiences living with RA, getting tips, and finding value and support in one another. Working with patients was hands down the most satisfying and humbling part of the process for me.
Our most recent paper describes the results of a pilot study of 166 patients with RA from vulnerable populations (racial/ethnic minority, age >65, limited health literacy, immigrant status, non-English language) that tested a low literacy RA medication summary guide and RA Choice, the decision aid. We showed that the tools improved knowledge and reduced decisional conflict in this diverse population.
Now after all the hard work, and the results of the pilot study showing the tools worked in our patient population, we want to share the tools and improve conversations for patients with RA and their clinicians everywhere. RA is a chronic, disabling condition which leads to early mortality. Patients made vulnerable by how we deliver healthcare to them experience worse outcomes, and communication in these groups still needs work. Our hope is that with these tools and continued attention to the needs of all groups in the RA community, we can help reduce disparities and improve care for all patients with RA.
Jennifer Barton, MD
Associate Professor of Medicine, OHSU
Staff Rheumatologist, Portland VA Medical Center
Dr. Barton is an academic rheumatologist with a research focus on health communication and rheumatic diseases.
For more information on Rheumatoid Arthritis (RA) Choice, click here.
Sat May 7th. All set, ready to go! Excited to visit the KER Unit for a few weeks and to join them at the SAEM SDM Consensus Conference in New Orleans. This will be my first visit to the Mayo Clinic, and one I’ve been looking forward to since I became a research collaborator last winter.
Wed May 11th. We just returned from the Consensus Conference. It was inspiring and motivating to see so many participants (most of them clinicians) trying to find ways to make SDM work in practice and to improve care for their patients. Victor presented his keynote lecture ‘What is SDM? (and what it is not)’ and we worked on writing a paper on this keynote for Academic Emergency Medicine.
Thu May 12th. First day at the KER Unit. What a day! I attended a course on EBM, discussed grants and ongoing research projects with Juan Pablo, Mike and Aaron, and had a braindump on SDM (old and new thinking) with Victor and Ian. Note to self: replace ‘yes, but…’ by ‘yes, and…’.
Sun May 15th. Friday, I finished the AEM paper with Ana and Erik. Gaby presented her study on the effects of social networks in management of diabetes on Saturday. In the evening, we got together for drinks and laughs (with bubbles, cheese and chocolates) at Annie’s place. Today, I’m going out to meet Nilay for brunch.
Mon May 16th. Started with the weekly huddle this morning: what a great way to get an overview of what each member of the team is working on right now. I worked on our Choice Awareness project* and attended the Patient Advisory Group to discuss Juan Pablo’s project on SDM in Thyroid cancer treatment. Amazing how this group of patients manages to come together every month (for over 10 years!), to improve the work of the researchers and to make sure that researchers don’t lose the connection with ‘the real world’.
Tue May 17th. Trying to see whether the Choice Awareness project can take us to the moon! Maybe. Also met with Kasey to learn more about the ICAN tool.
Wed May 18th. No trip to the moon (yet), we will have to find other methods to make this journey. I worked with Victor to build my Apollo II. Juan Pablo and Ian joined, which led to a conversational dance of thoughts, (crazy) ideas, hypotheses, and approaches. Best day ever! In spite of, as well as because of the challenges we faced this morning. In the afternoon we came together with a group of clinicians and researchers interested in SDM in diagnostics to see how to take this field forward.
Fri May 20th. Yesterday, I discussed the progress and challenges around the Choice Awareness project in the SDM journal club. We went for dinner and drinks afterwards to continue our discussion on SDM old and new thinking. I continued with the project today, focusing on capturing the differences in SDM between a mechanical approach and a human connection. It takes two to tango, but we have no way to measure that dance. Speaking of dancing (and of mechanical approach versus human connection), in the evening we had a birthday party at the local salsa place.
May 22nd. BBQ with the KER Unit team at Aaron’s place yesterday and smores at the river with Gaby, Mike and the Montori family today.
May 25th. Worked on the Choice Awareness project for the past few days. Met with the department of Neurology yesterday to discuss possible collaboration. Kasey received good news (scholarship), as did Laura (residency). Maggie arrived, and Ana said goodbye. Sara had her last day before her maternity leave. I worked on Aaron’s manuscript and discussed a second paper for AEM on SDM/informed consent with Rachel.
May 26th. Last day at the KER Unit. Overwhelmed by how much I learned about the team, the work, the collaborations. And, to be honest: about myself and about my work as a researcher. I’m impressed how a team that advocates kind and careful care manages to practice what they preach and welcome guests in such a warm and friendly way. After saying goodbye to Kirsten, this kind and careful visit ended with a road trip with Ben to the airport. What an experience.
With love, Marleen
*Note: Results of our Choice Awareness project will be presented at the European Association for Communication in Healthcare (EACH) Conference in Heidelberg (September 7th-10th, 2016). Oral presentation on September 10th: ‘Choice Awareness as Pre-requisite for Shared Decision Making in Videos of Clinical Encounters’.
Submitted by Renee Herman
I wanted to start my day by sending you a “thank you!” for your work. I have no awards to give you, live applause from the audience, or notations that reference your terrific work in journals. Today, from me, I can only give you the experiential, warm hearted “thank you!”
Almost two years ago now, I accepted a position here in the heart of Kansas City (literally a bi-state city) at Saint Luke’s Hospital ‘on the Plaza”. We are a part of a larger health care system, but this hospital is the heart of the system, in the heart of the city. My ‘title’ has changed several times, which tells you the changing dynamic of what I do. Most recently, I wear the title of “High Risk Transitional Care Coordinator” which in its simplest description is a role whereby I identify or get referrals for those high risk, complex care, often chronically ill patients who are underinsured and under resourced. From May to December 2014, I received over 150 referrals, and this past year, had over 200. These referrals came from all over the acute care setting, but also extended into the post acute care setting including several Patient Centered Medical Homes (PCMH) and Saint Luke’s Home Health Care and Hospice team. In the acute care setting, I have had referrals from the Emergency Department where our high risk patients are some times first identified, to all inpatient units, including transplant units for heart, kidney and liver. Most often, the referrals come from frustrated staffs who just ‘don’t know what to do with this one’. So, they call me. There are plans to expand this role into a ‘department’, but in this every changing healthcare environment, new programs like this one that was funded as a ‘pilot’ by a grant, often have as the number one question, “Where do we go from here?.” So, for now, I am the “department” though I have found great support by working with area ‘safety net clinics’, other community services, and terrific Community Healthcare Workers who often assist me.
In the midst of gearing up with information for this role, trying to understand my patient population so that I could give them the care and service my patients really needed, I found about your work at Mayo Clinic. I’m a Minnesotan by birth and have visited Rochester since I was young (side note: it’s where I first learned about the power of illegal drugs from a video I saw at a Mayo learning center. It greatly impacted my life as a grade school child.). I watched Mayo Clinic grow from a ‘hospital/clinic’, to now a ‘health care system’ occupying city blocks! The strong feelings I have about Mayo’s reputation for quality and patient centered care set the stage favorably for you, even before I listened to you on an IHI radiocast. Again, Mayo Clinic lived up to its reputation in my life and when I heard you talk about your work, it literally made me cry with excitement. Finally, someone within the medical profession ‘gets it!’ I was seeing what your were describing in my patient population and right then, could name many of my patients who were really trying, but not succeeding, and suddenly it all made sense as to ‘why.’
Now, in working with my patients, I try to really hear them as they set out for me in their own words, what they can and cannot do to manage their own health care. Sometimes, they show me by what they are, or are not doing, what ‘really matters to them’. It makes sense to me now and I can better explore with them their feelings of ‘never quite feeling like they are ‘measuring up to what they’ve been asked to do by their Doctor or health care team. Some have even said to me, “It’s impossible!” and now, I can agree. When I ask patients “What Matters to You”, they often look at me and say, “No one has asked me that before”, and they go on to tell me. Interestingly, what seemed “impossible” for them, when broken down into ways that are manageable and meaningful to them, seem more “possible”. I have story upon story of patients whom I have helped in the “transition” between the hospital and home, the “transition” off of home care and into the PCMH, and from ‘managed health care’ that was put upon them, to ‘self management’ of care that fits with their healthcare priorities. From the End Stage Renal Disease patient who rides an electric wheelchair daily for 45 minutes to dialysis by bus because she wants to live independently in the only subsidized apartment she could find (we were able to get her a bed, which was what ‘mattered to her’ in her health care plan), to the Heart Failure patient who was illiterate and labeled ‘non-compliant’ (we helped him to log his weight daily because he could read numbers and his ‘self management ’ confidence rose significantly because he now had something he could do to show he was trying to follow his treatment plan, and that was what ‘mattered’ to him), my ‘tool box’ of ‘helps’ and understanding, has been significantly aided by your work. We have long way to go to actually ‘do’ what your work has shown would actually transform the care of our complex care, chronically ill patients, but even in the basic ways I’ve applied your studies, I’m finding increased satisfaction in my work, less ‘burnout’ from ‘trying to make patients do it our way’, and positive outcomes in the lives of the patients I’m asked to help.
So, from the heart of a very grateful nurse (one who has been in the profession for greater than 35 years and is still learning!), I say “thank you.” It’s cold here…and I know even colder there, but hopefully today, your heart will be warmed knowing you are making a profound ‘experiential’ difference in the lives of caregivers and patients. Thank you. Thank you. Keep on!
Renee’ Herman, RN, BSN, MHSA
High Risk Transitional Care Coordinator
Saint Luke’s Hospital
Submitted by Renee' Herman
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
Submitted by Madge Kaplan
Every now and then, as IHI’s Director of Communications and the host and producer of WIHI, I get the opportunity to bring forward issues health and health care improvers are particularly wrestling with. These are issues born of one of the hallmarks of quality improvement – innovation – but they can easily fall between the cracks and fall of schedules because sometimes the implementation requires a fundamental change in mindset and attitude among health care providers most of all. Victor Montori’s leading edge work on Shared Decision Making (SDM) and Minimally Disruptive Medicine (MDM), and the contributions from his team, fits into a tension we often come back to on WIHI: whether health care is serious about getting to know and respond to the needs and real lives and contexts and experiences of patients or pay lip service to the same while going about its own business.
I’m hopeful it’s the former. IHI’s “What Matters” initiative, which shares many of the same principles as MDM, is gaining traction; Don Berwick’s recent call for an Era Three for the health care quality improvement movement, has reminded many of the centrality of the provider/patient relationship that must be protected especially in the midst of health care transformation; and there are new concepts such as “co-production” that are helping to frame this brave new world of doing with patients rather than doing to them.
So, let’s be optimistic that the several hundred who tuned into the live broadcast of the January 28 WIHI with Dr. Montori, Kasey Boehmer, and Dave Paul from the KER Unit at Mayo, along with IHI’s Andrea Kabcenell, are going to think differently about the next discussions they have with patients with chronic conditions. It was also a treat to have Dr. Montori live in the WIHI studio, so much so we did some additional videotaping and produced these equally inspiring clips. Let’s keep the conversation going!
Madge Kaplan is the Director of Communications for the Institute for Healthcare Improvement.
Mark your calendars now for New Tools and Thinking for Shared Decision Making
If you work in primary care today, odds are good that you’re seeing patients with multiple chronic conditions. Individuals with combinations of diabetes, high blood pressure, arthritis, and depression are rapidly becoming the norm in outpatient offices and clinics. And even if a provider and patient work together to choose the right medications and agree on making some lifestyle changes that will improve health, the best-laid plans often fall apart. Labeling patients “noncompliant” has been a tempting response but, many argue, is pejorative and tends to obscure what’s really going on – especially if one starts to better appreciate the unique and day-to-day burdens of being a patient with chronic disease. That’s why we hope you’ll join us for the January 28 WIHI: New Tools and Thinking for Shared Decision Making.
There’s a lot of work underway on multiple fronts to advance shared decision making, but one of the freshest, most innovative voices is that of Dr. Victor Montori, who will head up the WIHI discussion. Dr. Montori, who’s already carved out the idea and practice of Minimally Disruptive Medicine, still wants to provoke. He talks about the need for a patient revolution and says “health care has to compete with life.” And “life” in the case of a patient can mean anything from not being able to afford medications, to not having the time to take them, to not being able to focus on one’s own health because of stresses at home or another family member’s health crisis.
Dr. Montori is bringing along some members of Mayo’s Knowledge and Evaluation Research Unit to the WIHI. Dave Paul will help us understand what in particular about his and other patients’ daily lives should matter more to shared decision making. Kasey Boehmer will describe a tool she’s spearheading that better assesses and appreciates a patient’s capacity and context for dealing with any chronic health problem. Finally, IHI’s own Andrea Kabcenell will draw connections between shared decision making around chronic disease and broadening goals around population health, both of which are impacted by a patient’s social and economic circumstances.
I can’t think of a better way to spend an hour on WIHI than to hear from Dr. Victor Montori about what we need to better appreciate about patients’ lives. Join me on January 28th!
Submitted by Marleen Kunneman
Involving patients in a shared decision making (SDM) process is increasingly the preferred approach to making healthcare decisions when more than one reasonable option is available, as is often the case in (neo-)adjuvant cancer treatment. In our recent studies, we aimed to gain insight in the extent to which the three key steps of SDM are followed during clinical encounters on (neo-)adjuvant cancer treatment. Our results showed that the steps of SDM are only followed to a limited extent. Below, we will describe our findings in more detail.
The first step in SDM is to create choice awareness, that is, to acknowledge that there is more than one sensible option available and that a decision needs to be made. We found that oncologists consistently omit the option of forgoing (neo-)adjuvant treatment during clinical encounters, and instead, focus on the one treatment strategy they recommend.1 In only 3 of the 100 encounters analysed, the oncologist indicated that a treatment decision still needed to be made. By that, oncologists miss a crucial opportunity to engage patients and facilitate SDM.
The second step in SDM is to discuss the possible treatment options in more detail. We showed that there is considerable variation between as well as within oncologists in information provision, both in the number and the type of benefits and harms that they addressed.2 The variation could not be explained by patient characteristics. This lack of clarity on which benefits and harms should be discussed during the clinical encounter hampers the process of SDM. For preoperative radiotherapy in rectal cancer, we were able to reach consensus among radiation oncologists and patients on a core list of topics that should always be addressed in the pre-treatment consultation.3 Of note, all items in this core list are long-term benefits and harms of treatment. We assessed congruence between the core list and routine clinical care, and found that patients receive information on fewer than half of the topics from the core list.3 In almost one in ten patients, none of the harms from the core list were addressed. This framing bias toward the beneficial effect of treatment was also found in another study on communication of probabilities.4 Oncologists virtually always mention probabilities of the beneficial effect of treatment, but probabilities of harms often go unmentioned. After the consultation, patients tended to overestimate the beneficial effect of treatment, and to underestimate the probability of harms. This suggests that many patients are overly optimistic and believe that there is no harm in undergoing (neo-)adjuvant treatment.
In the third step of SDM, the patient’s views and preferences should be discussed and considered. We found that less than half of the patients voice their values during the consultation, and only one in five patients voices a treatment preference.5 If patients’ values or treatment preferences had been addressed or if the oncologist had indicated that these were of importance when deciding about treatment, the patient felt that he or she was significantly more involved in the treatment decision-making process.
Our results show that in routine clinical care opportunities are missed to engage patients in a process of SDM. Small changes in doctor-patient communication during clinical encounters can facilitate patients’ involvement in deciding about treatment.
Marleen Kunneman conducted her PhD research at the Leiden University Medical Center, under supervision of Prof. Anne Stiggelbout, Prof. Corrie Marijnen and Arwen Pieterse and is now a postdoctoral researcher at the Academic Medical Center, University of Amsterdam, the Netherlands. Her research is focused on doctor-patient communication during clinical encounters and shared decision making. Marleen has a Research Collaborator appointment at the Mayo Clinic, where she works with Prof. Victor Montori on assessing the impact of creating choice awareness as a prerequisite for more active patient involvement in clinical encounters.
By Aaron Leppin
Just last week I had the privilege of attending the NIH’ 5th annual Training Institute for the Dissemination and Implementation of Research in Health (hyperlink). The objective of this program is to train and develop a cohort of researchers with expertise in promoting and evaluating processes that translate evidence into practice.
Consonant with an MDM-based approach to care, the desire of implementation science is to ensure that the safest and most effective care is delivered to patients reliably. Traditionally, this field has focused its efforts on overcoming the underuse of evidence-based interventions. We now realize, however, that many interventions are implemented in practice that are of low or no value. What has become increasingly clear to me in my own research, however, is that many interventions become less effective and/or fail to achieve their full impact as a result of the way they are implemented. This idea, termed “mis-implementation,” is related to but distinct from the misuse of medical interventions.
In 2014, Prasad and Ioannidis outlined the evidence-based rationale for “de-implementing” contradicted, unproven, and aspiring healthcare practices (Imp Sci. 2014; 9:1) (hyperlink). This paper has been well received by the implementation science community, yet no clear and actionable guidance exists for practice-based efforts to de-implement interventions or, for that matter, to avoid mis-implementation entirely.
I am struck by the collective capacity of the MDM community to guide this emerging science. How does our expertise in evidence-based medicine, over-medicalization, and implementation science coalesce in this space? I have my ideas but am interested in others. What are examples of mis-implementation that you have experienced? How were you able (or unable) to overcome these challenges? How have you de-implemented ineffective interventions?
By Ian Hargraves, Maggie Breslin, Nassim Jafarinaimi
Healthcare, like any care, is the product of what people can do and who they can be for each other in the midst of suffering. The relationship of people attending to suffering finds its most direct expression in contemporary healthcare in the relationship of patient and clinician. The ways in which these two come together lies at the heart of how we conceive of and organize the healthcare enterprise. If we conceive of the meeting of patient and clinician as rooted in the knowledge and expertise of the medical expert then we may establish paternalistic and patriarchal structures and relationships by which to deploy that knowledge. Beyond this, we may seek to improve and innovate healthcare by heightening the knowledge, technology, and efficiency of the medical expert. Alternatively if, in the coming together of patient and clinician, we focus attention on the demands of the patient who is commissioning and paying for care we may set the suffering person in the role of consumer. Let the buyer beware then becomes the organizing principle, a principle that calls for an empowered patient equipped with authority, information, choice, and control in the face of illness. This is a situation in which we think that if the suffering person would and could only be more—more knowledgeable, more assertive, more discriminating as a purchaser—then illness would be less. There is a third possibility in the coming together of patient and clinician. In this way, the joining of people is called for by the situation of suffering. The reason for healthcare is not the deployment of technical expertise, or the exercise of choice. The reason for healthcare is to attend to the challenges of suffering. This is the reason that in clinic rooms throughout the country and world patients and clinicians sit together, talk, and together take action in attending to suffering or the threat of suffering. In the KER unit, we explore the hypothesis that the medium in which this relationship is made productive and caring is conversation
Gone. Back on 7/27.15.
If your message (not about patient care) is urgent perhaps Kirsten can help (Fleming.Kirsten@mayo.edu / (507) 293 0175).
For patient care issues, please contact Toni Ohm at email@example.com or at (507) 266 3769
I was not able to stay until the last day of the event so my reflections are limited to what I saw directly and through discussions in persons and twitter posts (using the hashtag #ISDMISEHC ). I will not belabor the obvious: this was a resounding success for the organizing committee – Lyndal Trevena, Kirsten McCaffery and Paul Glasziou deserve our recognition and gratitude. Their colleagues – always diligent, helpful, and friendly – kept everything going smoothly. It is not an exaggeration that the crowd not only learned, but talked, laughed, hugged, argued, and enjoyed like only a functional family would.
That two organizations got together in Sydney was not evident. The program did not force a distinction, but I have to say that I saw much less of ISEHC than of ISDM if I had to draw one. The choice was to show what Thomas Agoritsas portrayed as a yin-yang of EBM and SDM. When EBM was center-stage it was emphasizing knowledge translation and training in the capable hands of Sharon Straus and France Legare respectively. And the synthesis either took a technological spin in the hands of the Magic app (the Norwegian-Swiss-North American collaboration featuring the brilliant Anja Fog Heen's promising work on the inclusion of practical considerations in SDM tools) or a patient-centered one in the multiple presentations featuring coaching and education to facilitate patient involvement in decision making or a series of efforts directed at the clinical encounter.
I was proud of the KER UNIT showing at the meeting: ethics, health policy, health care research, and innovation were all areas in which our colleagues took central roles. I would like to highlight our oral presentations, poster presentations, workshop on SDM implementation, and our inaugural keynote. This was Ian Hargraves first ISDM meeting and it became clear how lucky we are to have someone who understands the practices necessary to achieve patient-centered care as well as a series of philosophical underpinnings necessary for this very human task. It was also a grand slam for Kasey Boehmer whose clever, elegant, and profoundly human presentations focused on capacity assessment and elicitation using the ICAN tool captured the imagination of participants. Juan Pablo Brito did triple function: on the EBM side as the audience engaged in problem-solving the issue of overdiagnosis nicely framed by the local Alex Barratt; on the SDM side he presented his work with an encounter decision aid for Graves Disease; and on the international side, he connected with colleagues from Argentina, Chile, Peru, and Colombia to jumpstart a Latin-American SDM initiative that resists getting going. Annie LeBlanc joined them to complete our participation with a workshop on how to implement SDM in practice.
It was particularly tough for me to leave early. Emotionally, because this is THE meeting in which I get to see and enjoy family and friends doing what they love to do. Also, because I did not get to spend enough time with people I would have loved to spend more time. And because I did connect more deeply with some with whom I had one of those conversations you wish never end. Intellectually, it was hard for me to prepare the keynote address. It was a new talk and I respect this group too much to not try to offer them my best. Ian, Kasey, Annie, and Jon Tilburt (once a KER UNIT pig, always a KER UNIT pig) can testify of my angst. As I finished and reached for a glass of water, my hands were shaking, my mouth dry, and my heart racing. I was feeling exhausted and unusually emotional. During the Q&A, I recognized a possible explanation: my message had connected with what brought us all to Sydney. We were all there because of our commitment to patients. For a minute, the discussion was not primarily about money, value, cost containment, and austerity. As one of the presenters asked for a simple message to take home; the choice was clear, but not simple: we need a health care that is careful and kind.
We are turning the ISDM 2013 website off. The 2015 ISDM website will live on as a testimony of this year’s successful joint meeting, until the next time the SDM community (with ISEHC? I do not know, but I wish for this synthesis to continue) gets together in 2017. In the meantime, I come home recharged and hopeful: brilliant people are trying to change the world for the right reasons for those who suffer. May the force be with them. Until the next time.
Does it make sense to hold a shared decision-making conference and an evidence-based healthcare conference together? Reflections before Sydney 2015
From July 19-22, 2015, the International Society for Evidence-based Healthcare (ISEHC) and the International Shared Decision Making Conference will meet together, for the first time, in Sydney.
Our groups have been hatching this moment for years. In addition to the reduced carbon footprint and other efficiencies, there is a conceptual case for this. This was first elaborated in Peru ISDM 2013 by Gordon Guyatt who coined ‘evidence-based medicine’ and is the president of ISEHC. Later, a paper in JAMA with my colleagues in Australia further the connection between EBM and SDM. Here are my reflections before traveling to Sydney.
A paradigm shift in medicine that extended to the rest of health care started 25 years ago. Evidence-based healthcare (EBHC) promoted a systematic appreciation of the body of knowledge about the options of care and their relative merits. It sought to explicitly incorporate this knowledge in the design of clinical care policies and in the care of individual patients. EBHC recognized that consideration of the research evidence alone is necessary but not sufficient to formulate a sensible recommendation. Patient preferences and context – personal, social, and clinical – must be explicitly considered to increase the chance that we will do more good than harm. Without this context, we have evidence tyranny, a careless one-size-fits-all nightmare.
In parallel, work has taken place to center care around patients, through advocacy, collective action, and science. Nothing about me without me. This work has led, at best, to favor patient empowerment, activation, and self-care; at worse, it has casted patients as customers and consumers. When they bring the patient into sharper focus, these approaches, however, often leave implicit how to use the evidence to formulate care plans that address the patient situation.
More enlightened approaches have sought to engage patients in co-creating decisions. Patients and clinicians need options based on science, and they need to put the pertinent evidence to work to attend to this patient’s situation. Overcoming the allure of evidence tyranny, we must embrace the messy work of making use of the evidence to care for patients, and to partner with them to co-create treatments that address their particular situations. It is work that patients and clinicians undertake together.
The work of evidence-based healthcare and shared decision making supports patients and clinicians in jointly finding an adequate answer, in this time and place, to a driving question of health care: what is best for me and my family? In responding, they configure a powerful union of forces for patient-centered care.
I look forward to experiencing this union of forces down under!
Work in shared decision making tends to focus on the clinical encounter. Some research has focused on how to prepare patients and clinicians for a decision making encounter. Other work has focused on how to facilitate conversations during an encounter or measuring the extent of shared decision making that occurs between patient and provider. This focus on the clinical encounter likely has multiple origins. First, much of the research in shared decision making has focused on decisions that are relatively discrete and time-bound, such as surgeries or screening tests. Second, the clinical encounter is easy to access and assess. It occurs at a specific time and place. It involves a set group of individuals. It has a beginning and an end.
Particularly in the setting of chronic disease, a singular focus on the clinical encounter limits our understanding of decision-making processes. In fact, in chronic conditions decision making is often thought of as being more of a process than an event. However, little research has investigated the details of this process. We sought to more fully explore this process through a longitudinal qualitative study of parents of children with chronic conditions.1
In this study we followed parents (n=29 from 21 families) for 6-10 weeks following an index clinical encounter at which they discussed a treatment change for their child’s chronic condition. Parents were interviewed multiple times and asked to describe their decision process, including aspects of the process that occurred before the index encounter. For all participants, the decision evolved over time, neither starting nor ending at the clinical encounter, and involved conversations with family members and/or friends who had not been present at the clinical encounter. Some parents described a slow, steady progression towards a decision while others either felt the decision occurred in a step-wise process or that some event led to an abrupt decision. Regardless of how the decision evolved, parents felt their role in the decision-making process did not change over time. Furthermore, after the decision was officially made parents continued to think about it and consider whether they had made the right decision.
The concerns and expectations parents had about treatment changed over the course time. Often after deciding to start a new treatment the expectations shifted from focusing on symptom improvement to focusing on side-effect avoidance. Similarly, parents’ emotions often fluctuated between worry and hope. Some experienced relief from worry when their child did well on the new treatment while others shifted from worrying about their child’s symptoms to worrying about potential side effects.
By prospectively following parents, we demonstrated that, indeed, decision making in chronic disease is a process not an event. It is a process that follows distinct patterns of evolution, includes numerous people and involves shifting expectations and emotions. How then do we best support and foster shared decision making in this environment? We need tools that capitalize on the fact that decision-making occurs over time. Tools that help patients and families converse with clinicians and then help those patients and families converse with other people in their life. We need to acknowledge that what happens in the clinical encounter is likely only a small part of the decision-making process, an important part but not the only part. Finally, in the setting of chronic conditions we need to develop programs, tools and interventions that capitalize on chronicity. Few people impacted by chronic conditions will make only one treatment decision during the course of their illness; rather chronic conditions involve a series of decisions. By taking advantage of this repetition we may be able to help families become more skilled, engaged decision makers through learning and practicing skills at each decision making opportunity.
Submitted by Ellen A. Lipstein MD, MPH
Ellen A. Lipstein MD, MPH, is a general pediatrician and health services researcher at Cincinnati Children’s. Dr. Lipstein’s research is focused on family-centered medical decision making. She is particularly interested in understanding and improving the ways parents and patients with chronic conditions collaborate with healthcare providers to make treatment decisions. Her current program of funded research uses both qualitative and quantitative methods to explore decisions about high-risk treatments, in which both the potential benefits and risks are significant. Additionally, Dr. Lipstein is a collaborator on several studies which aim to develop diverse methods for engaging patients and parents in decision making.
We are now recognized as a tool to improve diabetes treatments by the National Diabetes Education Program (NDEP). http://ndep.nih.gov/hcp-businesses-and-schools/HealthCareProfessionals/medication-adherence/resources/health-care-teams/
As of today in their website of resources for health professionals, they include a link to our Diabetes Medication Choice cards in PDF and interactive versions into the background information including a random maestro showing their efficacy.
It is great and we are grateful to be recognized by a national program and we hope that this will increase the use of these tools that promote patient-centered diabetes care.
By Heidi McLeod
Recent policy legislation is replete with references to shared decision making (SDM) as a way of improving the quality of care in clinical encounters (PPACA 2010). Even though these are unfunded policy exhortations, researchers are encouraged to pursue shared decision making, a process where clinicians share evidence based options with patients while respecting their needs and preferences, as an ethically viable form of healthcare delivery (Elwyn et al. 2012). In discussing how shared decision making can contribute to reducing the costs of healthcare, there has been a call to focus on patient preferences (Mulley, Trimble and Elwyn 2012). To date however, the research around shared decision making has focused more on risk communication and the process of information sharing than on the more holistic aspects of shared decision making; notably, the concept of respect.
Respect is defined as “recognition of the unconditional value of patients as persons” (Beach et al. 2007) and is as important to patients as information sharing and being involved in decision making. Indeed, both being treated with respect and decision making has independent associations with adherence, satisfaction and preventive care (Beach et al. 2005). Clinicians who are perceived as respectful to patients are shown to provide more information and express more positive affect in these visits (Beach et al. 2006). Therefore, one could postulate that without having a foundation of respect, a concept that is central to shared decision making, the rest of the process may falter. This may explain that despite decades of research, hundreds of trials, thousands of papers and policy initiatives, shared decision making has failed to take root and be implemented in everyday practice. By continuing to ignore the concept of respect in shared decision making, we are disrespecting respect.
The disrespect for respect is further evident in how we measure shared decision making. The gold standard for measuring whether shared decision making has actually occurred within an encounter is the OPTION scale (Elwyn et al. 2003). The OPTION scale assesses to what extent the clinician has engaged in shared decision making with patients and is based on a 12-point scale which determines the efficacy of the decision-making process. OPTION as well as other scales to measure shared decision making (e.g. DEEP-SDM) are not designed to measure respect (although some items may reflect respectful practices), thus it is clear that respect is not recognized as a fundamental or at least measurable construct of shared decision making. As such, we lack the necessary tools to answer important theoretical and practical questions on the importance of respect in the shared decision making process. Developing a measure of respect could further our understanding of shared decision making as a theoretical construct. This will have practical consequences as a better understanding of respect may help researchers develop interventions to promote and clinicians to practice respect with their patients.
Developing a measure of respect has its own challenges, especially as the concept has not been clearly described by patients and clinicians. Most studies that look at respect use single item survey questions that assume the definition of respect is sufficiently intuitive to respondents. How respect is operationalized as a measure may also be problematic. While we are grappling with these issues in developing a measure of respect, we can look towards research in the healthcare communication literature as a guide on how respect may impact outcomes. Patient-centered communication can influence how satisfied patients are with their clinicians and the encounter itself and can affect adherence (Finset 2014). More psychosocial (non-biomedical) language is also associated with higher patient satisfaction (Roter et al. 1997). This is an area which can potentially help us to understand the effectiveness of SDM, particularly if we can develop a measure of respect based on verbal and non-verbal cues in the encounter. If we think about measuring the complexity of SDM in a broader framework, degrees of shared decision making bounded by respectful communication may become evident. As recently described, measures might not tell us only about the performance of a process, they might actually “drive the performance” and as such, “the right measure can be transformative” (Collins 2014).
We have been discussing shared decision making at a research and policy level for a long time. Yet there has been a disconnect between research and practice. By being able to measure respect for patients and their needs and preferences, the emergent conversation around treatment options might be far more shared than the present focus on risk communication suggests. If we begin to pay more attention to other aspects of shared decision making, and consider ways of measuring such concepts as respect, we may facilitate shared decision making’s translation into practice and improve the quality of the clinical encounter for patients and clinicians alike.
Michael Gionfriddo, Pharm.D and PhD candidate in the KER Unit at Mayo Clinic, contributed to this blog by editing various drafts.
Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A., Kinnersley, P., Cording, E., Tomson, D., Dodd, C., Rollnick, S., Edwards, A. and Barry, A. (2012) “Shared Decision Making: A Model for Clinical Practice”, Journal of General Internal Medicine 27(10):1361-1367
Mulley, A.G., Trimble, C. and Elwyn, G. (2012) “Stop the silent misdiagnosis: patients’ preferences matter” BMJ 2012:345
Beach, M.C., Duggan, P.S., Cassel, C.K., and Geller, G. (2007) “What Does ‘Respect’ Mean? Exploring the Moral Pbligation of Health Professionals to Respect Patients”, Journal of General Internal Medicine 22 (2007):692-695
Beach, M.C., Sugarman, J., Johnson, R.L, Arbelaez, J.J., Duggan, P.S. and Cooper, L.A. (2005) “Do Patients Treated With Dignity Report Higher Satisfaction, Adherence and Receipt of Preventive Care?”, Annals of Family Medicine 3(4): 331-338
Beach, M.C., Roter, D.L., Wang, N-Y., Duggan, P.S. and Cooper, L.S. (2006) “Are Physicians’ Attitudes of Respect Accurately Perceived by Patients and Associated with more Positive Communication Behaviors?” Patient Education and Counseling 62 (2006): 347-354
Elwyn, G., Edwards, A., Wensing, M., Hood, K., Atwell, C. and Grol, R. (2003) “Shared Decision Making: developing the OPTION scale for measuring patient involvement” Quality Safety Health Care 12 (2003): 93-99
Clayman, M.L., Makhoul, G. Harper M.M., Koby, D.G., and Williams, A.R. (2012) “Development of a shared decision making coding system for analysis of patient-healthcare provider encounters”, Patient Education and Counseling 88 (2012): 367-372
Finset, A. (2014) “50 Years of Research on the Effect of Physician Communication Behavior on Health Outcomes”, Patient Education and Counseling 96 (2014) 1-2.
Roter, D.L, Stewart, M. Putnam, S.M., Lipkin, M., Stiles, W. and Inui, T.S. (1997) “Communication Patterns of Primary Care Physicians”, JAMA 277 (1997): 350-356
Collins, A. (2014) “Measuring What Really Matters. Towards a coherent measurement system to support person-centered care” Thought Paper. The Health Foundation.
By Khalid Benkhadra, M.D.
Recently, many studies have investigated the role patients want to play in the decision making process around how to manage their health. This is of great importance, because while clinicians are experts in what works for a certain condition, patients are experts at what works for them. Shared decision making (SDM) is a mode of decision making where the expertise of both clinicians are respected and integrated into decision making through a process of collaborative deliberation.. Prior studies examining the role patients prefer when deciding on cancer treatment found that patients prefer to play a role in decisions, but that role varied from patient to patient1-3. To determine whether or not patient’s preference for SDM modified quality of care or physician communication Kehl et al4 conducted a survey. This survey was conducted among participants in the cancer care outcomes research and surveillance consortium (CanCORS). Patients in this consortium were questioned about what their preferred role was when making cancer related treatment decisions and what actual role did they have in the decision making process around treatment for their cancer. They also reported on their perception of their overall quality of care.
Two thirds (67.8%) of patients reported that the overall quality of care they received was excellent and over half (55.8%) rated their physician’s communication highly. When they examined how these ratings correlated with the roles patients would prefer to play in the decision making process, they found that compared to patients who preferred share decisions patients who preferred that their physician control the decision making were less likely to give top ratings to their physician. These patients also gave lower ratings of physician communication. The reasons behind these results are not clear and need further investigation.
Percentage of patients reporting excellent quality of care and high communication were both poorly calculated. For quality of care, results were reported by decisions; individual patient rating was not reported. For rating communication, analysis was restricted to patients who answered 3 out of 5 questions and answers were averaged.
In general, outcomes were very subjective and it was difficult to assess how strong the relationship between the patients answers and the actual encounter; there is a possibility a patient might rank an encounter low if he is not happy about a reason not related to the actual encounter. Besides, no information was reported about how educated tha patients were about SDM (and if yes, how much they were). Having a third party watching the encounter and assessing the communication would be a good addition as we can compare it with the patients response and see if both match (rather than taking only the patient’s response)
These findings in general suggest that providing information to patients with cancer and engaging them in decision making is valuable, even for patients who express a preference for a physician controlled decision making process.
By Victor M Montori, Ian Hargraves, Annie LeBlanc
Policymakers fashionably prescribe shared decision making for patients who face fateful decisions. These patients have two or more medically reasonable courses of action that differ in important aspects. The extent to which these aspects differ in ways that matter to each individual patient justifies patient involvement in the decision-making process. Similarly, the extent to which clinicians can accurately predict the values and preferences of informed patients reduces the value of shared decision making. Only in circumstances where the distribution of patient preferences is very narrow can clinicians correctly deduct patient preferences (e.g., analgesics vs. no intervention for moderate to severe pain). This is often the case when the pros and cons of alternative courses of action are well known, their likelihood estimates are based on highly reliable research evidence, and difference between the benefits and the potential harms and inconveniences is large and clear. In such situations the distribution of patient preferences will be narrow enough that most clinicians can assume correctly what most patients will want. At the extreme, these decisions will seem purely technical, where the right course of action is apparent to those with a good understanding of the situation. This would include professionals with pertinent training. In situations that cannot be resolved by the application of technical knowledge, patients, when informed, will exhibit a range of preferences. It seems appropriate then that patients and clinicians partner to share information, deliberate, and arrive at a decision together. We call this process shared decision making.
Proponents of shared decision making assume that most clinicians and patients, when given the tools, time, and supportive setting necessary, will be able to implement shared decision making. Reality seems to behave differently: surveys suggest that patients are not universally inclined toward shared decision making, clinicians are often portrayed as barriers to this process, and environments have electronic medical records, phone calls, time pressures, competing demands, and noise that conspire to interfere with shared decision making. What’s going on if patients and clinicians aren’t adhering to the shared decision making prescribed on their behalf?
Our group, the KER UNIT, characterizes shared decision making as a conversation – an activity in which patients and clinicians turn with one another (the etymology of conversation—versare turn; con with). In conversation, the options with their attributes or issues are in dynamic interaction as the patient and clinician consider them and experimentally try them on. This highly interactive dynamic requires the active engagement and involvement of the patient and clinician. This turning-with of patients and clinician is the dance of shared decision making.
The clinician is used to contemplating the situations of patients and making tough decisions routinely; but for this patient, at this time, the task is anything but routine. Thus, it is natural to delegate to the more experienced and emotionally detached of the two the task of organizing the decision-making conversation. The clinician, leading the dance, will identify that a decision needs to be made, the relevant options and their relative desirable and undesirable features, and will invite the patient to consider these options and features. But, to what extent are patients willing and able to engage in deliberation?
We propose that the adequate way of answering this question is through empathy. In suggesting empathy we do not mean that clinicians should empathically divine the right decision for the patient; quite the opposite. We are suggesting that the co-creation of decision also involves the co-creation of the patient-clinician relationship and the conversational environment in which each decision is made. Empathy directs attention to the clinician’s active role in finding the right relationship and stance to join this patient at this time in decision making. Clinicians are trained and are expected to exhibit empathy when interviewing and examining patients, responding to patient concerns, and delivering bad news. The role of empathy in supporting decision making has not been fully discussed, to our knowledge. In this case, empathy requires attention to the situation of the patient and to the cues, verbal and nonverbal, the patient offers as the clinician invites the patient into the deliberative process. Some patients may be able to partner fully and co-create the decision; others may engage with the information, but delegate the rest of the tasks of deliberation and decision taking to the clinician. This is the expression of a preference that is being constructed on the spot (it follows that this preference cannot be adequately assessed with a survey tool, before the encounter and therefore out of context). The appropriate stance in the conversation is available to the clinician in subtle signs that the clinician can pick up through empathic attention to the patient. Focus on who the patient and clinician are, and can be, for each other in this conversation allows us to respect that the same patient may be willing to co-create one decision while preferring a lesser role for the next. The challenge for the clinician is to correctly respond, in real time, to these emerging preferences.
Shared decision-making tools produced for use during the clinical encounter need to account for this clinical task and be designed to support empathic decision making. When encounter tools offer too much information or script a step-by-step decision process, they may inadvertently limit the ability of the clinician to empathically guide the process. When tools are used in preparation for the visit, clinicians may assume that completion of the tool and associated worksheets signals that patients are fully engaged and ready to make decisions. That a tool should enable and support empathic decision making is not currently a requirement for their design of decision aids, or a metric for their impact.
In summary, shared decision making is one of an infinite set of ways in which patients and clinicians can engage in conversation about fateful decisions without a technically correct answer. To create the environment in which patients and clinicians co-create decisions, clinicians must actively invite and support patients in the process, empathically “reading” the patient to match their evolving preference for participation. Tools to support this process need to be designed to facilitate and not interfere with empathic decision making, and this may form the basis for new measures of decisional quality.
Thus, we are not just for shared decision making. We are for empathic decision making.