shared decision making

Shared decision making in immigrant patients

Authors: Claudia C. Dobler, Gabriela Spencer-Bonilla, Michael R. Gionfriddo, Juan Pablo Brito

Shared decision making (SDM) has been widely advocated [1] and called the pinnacle of patient-centered care [2]. Translating this ideal into reality has proven challenging [3]. 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. [7]. 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 [8]. 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 [9] 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 [10], 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.

References

Frosch DL, Moulton BW, Wexler RM, Holmes-Rovner M, Volk RJ, Levin CA. Shared decision making in the United States: policy and implementation activity on multiple fronts. Z Evid Fortbild Qual Gesundhwes 2011: 105(4): 305-312.
Barry MJ, Edgman-Levitan S. Shared decision making–pinnacle of patient-centered care. N Engl J Med 2012: 366(9): 780-781.
Elwyn G, Scholl I, Tietbohl C, Mann M, Edwards AG, Clay C, Legare F, van der Weijden T, Lewis CL, Wexler RM, Frosch DL. “Many miles to go …”: a systematic review of the implementation of patient decision support interventions into routine clinical practice. BMC medical informatics and decision making 2013: 13 Suppl 2: S14.
Legare F, Thompson-Leduc P. Twelve myths about shared decision making. Patient education and counseling 2014: 96(3): 281-286.
Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient education and counseling 2014: 94(3): 291-309.
Legare F, Witteman HO. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health Aff (Millwood) 2013: 32(2): 276-284.
Suurmond J, Seeleman C. Shared decision-making in an intercultural context. Barriers in the interaction between physicians and immigrant patients. Patient education and counseling 2006: 60(2): 253-259.
Wood F, Phillips K, Edwards A, Elwyn G. Working with interpreters: The challenges of introducing Option Grid patient decision aids. Patient education and counseling 2017: 100(3): 456-464.
Kleinman Arthur. The Illness Narratives: Suffering, Healing, And The Human Condition. Basic Books, 1988.
Boehmer KR, Hargraves IG, Allen SV, Matthews MR, Maher C, Montori VM. Meaningful conversations in living with and treating chronic conditions: development of the ICAN discussion aid. BMC Health Serv Res 2016: 16(1): 514.

shared decision making

The many paths to weight loss: Helping patients to find the treatment for obesity that fits their needs, preferences, and values

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.

shared decision making

Communication is a challenge

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:

both are chronic diseases,
both have many options for treatment with differing risks and benefits and costs, and
both require substantial patient self-management.

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.

shared decision making

Diary post of a visiting researcher

Dear Diary,

Sat May 7^th. 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 11^th. 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 12^th. 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 15^th. 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 16^th. 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 17^th. 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 18^th. 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 20^th. 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 22^nd. 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 25^th. 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 26^th. 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

Marleen Kunneman, PhD. Research fellow at the department of Medical Psychology of the Academic Medical Center, University of Amsterdam (the Netherlands), and research collaborator of the KER Unit.

*Note: Results of our Choice Awareness project will be presented at the European Association for Communication in Healthcare (EACH) Conference in Heidelberg (September 7^th-10^th, 2016). Oral presentation on September 10th: ‘Choice Awareness as Pre-requisite for Shared Decision Making in Videos of Clinical Encounters’.

shared decision making

Making a difference one clinician at a time

Submitted by Renee Herman

I wanted to start my day by sending you a “thank you!” for your work. I have no awards to give you, live applause from the audience, or notations that reference your terrific work in journals. Today, from me, I can only give you the experiential, warm hearted “thank you!”

Almost two years ago now, I accepted a position here in the heart of Kansas City (literally a bi-state city) at Saint Luke’s Hospital ‘on the Plaza”. We are a part of a larger health care system, but this hospital is the heart of the system, in the heart of the city. My ‘title’ has changed several times, which tells you the changing dynamic of what I do. Most recently, I wear the title of “High Risk Transitional Care Coordinator” which in its simplest description is a role whereby I identify or get referrals for those high risk, complex care, often chronically ill patients who are underinsured and under resourced. From May to December 2014, I received over 150 referrals, and this past year, had over 200. These referrals came from all over the acute care setting, but also extended into the post acute care setting including several Patient Centered Medical Homes (PCMH) and Saint Luke’s Home Health Care and Hospice team. In the acute care setting, I have had referrals from the Emergency Department where our high risk patients are some times first identified, to all inpatient units, including transplant units for heart, kidney and liver. Most often, the referrals come from frustrated staffs who just ‘don’t know what to do with this one’. So, they call me. There are plans to expand this role into a ‘department’, but in this every changing healthcare environment, new programs like this one that was funded as a ‘pilot’ by a grant, often have as the number one question, “Where do we go from here?.” So, for now, I am the “department” though I have found great support by working with area ‘safety net clinics’, other community services, and terrific Community Healthcare Workers who often assist me.

In the midst of gearing up with information for this role, trying to understand my patient population so that I could give them the care and service my patients really needed, I found about your work at Mayo Clinic. I’m a Minnesotan by birth and have visited Rochester since I was young (side note: it’s where I first learned about the power of illegal drugs from a video I saw at a Mayo learning center. It greatly impacted my life as a grade school child.). I watched Mayo Clinic grow from a ‘hospital/clinic’, to now a ‘health care system’ occupying city blocks! The strong feelings I have about Mayo’s reputation for quality and patient centered care set the stage favorably for you, even before I listened to you on an IHI radiocast. Again, Mayo Clinic lived up to its reputation in my life and when I heard you talk about your work, it literally made me cry with excitement. Finally, someone within the medical profession ‘gets it!’ I was seeing what your were describing in my patient population and right then, could name many of my patients who were really trying, but not succeeding, and suddenly it all made sense as to ‘why.’

Now, in working with my patients, I try to really hear them as they set out for me in their own words, what they can and cannot do to manage their own health care. Sometimes, they show me by what they are, or are not doing, what ‘really matters to them’. It makes sense to me now and I can better explore with them their feelings of ‘never quite feeling like they are ‘measuring up to what they’ve been asked to do by their Doctor or health care team. Some have even said to me, “It’s impossible!” and now, I can agree. When I ask patients “What Matters to You”, they often look at me and say, “No one has asked me that before”, and they go on to tell me. Interestingly, what seemed “impossible” for them, when broken down into ways that are manageable and meaningful to them, seem more “possible”. I have story upon story of patients whom I have helped in the “transition” between the hospital and home, the “transition” off of home care and into the PCMH, and from ‘managed health care’ that was put upon them, to ‘self management’ of care that fits with their healthcare priorities. From the End Stage Renal Disease patient who rides an electric wheelchair daily for 45 minutes to dialysis by bus because she wants to live independently in the only subsidized apartment she could find (we were able to get her a bed, which was what ‘mattered to her’ in her health care plan), to the Heart Failure patient who was illiterate and labeled ‘non-compliant’ (we helped him to log his weight daily because he could read numbers and his ‘self management ’ confidence rose significantly because he now had something he could do to show he was trying to follow his treatment plan, and that was what ‘mattered’ to him), my ‘tool box’ of ‘helps’ and understanding, has been significantly aided by your work. We have long way to go to actually ‘do’ what your work has shown would actually transform the care of our complex care, chronically ill patients, but even in the basic ways I’ve applied your studies, I’m finding increased satisfaction in my work, less ‘burnout’ from ‘trying to make patients do it our way’, and positive outcomes in the lives of the patients I’m asked to help.

So, from the heart of a very grateful nurse (one who has been in the profession for greater than 35 years and is still learning!), I say “thank you.” It’s cold here…and I know even colder there, but hopefully today, your heart will be warmed knowing you are making a profound ‘experiential’ difference in the lives of caregivers and patients. Thank you. Thank you. Keep on!

Renee’ Herman, RN, BSN, MHSA
High Risk Transitional Care Coordinator
Saint Luke’s Hospital

shared decision making

Helping to reduce the burden of taking 83 pills a week – A nurse’s perspective

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

minimally disruptive medicine, shared decision making

Bringing health and health care issues to the forefront

Submitted by Madge Kaplan

Every now and then, as IHI’s Director of Communications and the host and producer of WIHI, I get the opportunity to bring forward issues health and health care improvers are particularly wrestling with. These are issues born of one of the hallmarks of quality improvement – innovation – but they can easily fall between the cracks and fall 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.

shared decision making

Shared decision making in adjuvant cancer treatment

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.

References

Kunneman M, Engelhardt EG, ten Hove FL, et al. Deciding about (neo-)adjuvant rectal and breast cancer treatment: Missed opportunities for shared decision making. Acta Oncol 2015;(epub ahead of print).
Kunneman M, Marijnen CAM, Rozema T, et al. Decision consultations on preoperative radiotherapy for rectal cancer: Large variation in benefits and harms that are addressed. Br J Cancer. 2015;112:39-43.
Kunneman M, Pieterse AH, Stiggelbout AM, Marijnen CAM. Which benefits and harms of preoperative radiotherapy should be addressed? A Delphi consensus study among rectal cancer patients and radiation oncologists. Radiother Oncol 2015;114:212-217.
Kunneman M, Stiggelbout AM, Marijnen CAM, Pieterse AH. Probabilities of benefit and harms of preoperative radiotherapy for rectal cancer: What do radiation oncologists tell and what do patients understand? Patient Educ Couns. 2015;98:1092-1098.
Kunneman M, Marijnen CA, Baas-Thijssen MC, et al. Considering patient values and treatment preferences enhances patient involvement in rectal cancer treatment decision making. Radiother Oncol 2015;(epub ahead of print).

minimally disruptive medicine, shared decision making

Debriefing the NIH Training Institute for Dissemination and Implementation Research in Health: what can minimally disruptive medicine contribute?

By Aaron Leppin

Just last week I had the privilege of attending the NIH’ 5^th 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?

shared decision making

Thinking Beyond the Clinical Encounter

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.

References

Lipstein EA, Britto MT. Evolution of Pediatric Chronic Disease Treatment Decisions: A Qualitative, Longitudinal View of Parents’ Decision-Making Process. Med Decis Making. 2015.