Physician well-being is recognized as a critical contributor to how patients experience health care, but physicians are too often distressed, burned out, and dissatisfied. Attention to physician well-being offers benefits to every member of the health care system. Of particular relevance to this blog site, shared decision making and its promotion of meaningful relationships with patients is likely to be associated with improved physician well-being. However, despite overwhelming evidence identifying the scope of the problem, barriers to well-being, and solutions, medicine has lacked a unifying framework to anchor efforts to promote physician well-being.
In response to this need, the Collaborative for Healing and Renewal in Medicine (CHARM), in partnership with the Arnold P. Gold Foundation, convened a work group to develop the recently published Charter on Physician Well-Being. Modeled after the American Board of Internal Medicine’s The Physician Charter on medical professionalism, the Charter on Physician Well-Being begins with a preamble followed by four guiding principles intended to establish the foundational rationale and structure for physician well-being efforts.
Guiding Principles:
Effective patient care promotes and requires physician well-being.
Physician well-being is related with the well-being of all members of the health care team.
Physician well-being is a quality marker.
Physician well-being is a shared responsibility.
A set of eight key commitments follows, recognizing the shared responsibility for well-being that exists between individual physicians, the institutions they work in, and society at large.
Key Commitments:
Foster a trustworthy and supportive culture in medicine.
Anticipate and respond to inherent emotional challenges of physician work.
Prioritize mental health care.
Practice and promote self-care.
A current list of endorsing/supporting organizations is here, and the Charter work group hopes that as this list grows, endorsing bodies and institutions will challenge themselves to apply these commitments in setting a course of action to promote physician well-being. With the support and endorsement of key organizations in medical education and beyond such as the American Medical Association, the Charter establishes core principles learners, physicians, and institutions should expect of themselves and of each other.
The Charter work group believes that a health care system should value the well-being of its workforce equally with other measures of high-value care. Although the well-being of physicians deserves attention in its own right, patients and the health care system will also inevitably benefit if the principles set forth in the Charter help physicians to be well. Dr. Francis Peabody wrote in 1927 that “… the secret of the care of the patient is in caring for the patient.” We now know that physicians can best care for patients when they are themselves cared for. The Charter on Physician Well-Being establishes the structure necessary to make this happen. Our patients are counting on us as individuals, organizations, and as a profession to get this right
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Dr. West is Professor of Medicine, Medical Education, and Biostatistics at Mayo. His research has focused on medical education and physician well-being, and he is Co-Director of the Mayo Clinic Program on Physician Well-Being. His work documenting the epidemiology and consequences of physician distress, as well as emerging research on solutions, has been widely published in prominent journals including Lancet, JAMA, Annals of Internal Medicine, and JAMA Internal Medicine.
I am a practicing physician in Sweden, where I have lived for many years. Often, I travel back to my home country of Germany and during my travels I enjoy looking at postcards. Most are quite funny, but sometimes beyond the humor is a message more profound. My favorites involve problem solving. Take for example these three:
Wenn das die Lösung ist, will ich mein Problem zurück!
If this is the solution, I want my problem back!
Ich habe keine Lösung, aber ich bewundere das Problem.
I don‘t have a solution, but I admire the problem.
Ich habe eine Lösung, aber sie passt nicht zum Problem.
I have a solution, but it doesn‘t fit to the problem.
This last postcard reminded me of my own experiences of care where the solutions people came up with did not fit the problem I was facing.
Some years ago I had an operation to my thyroid gland. Despite the surgeon’s confidence that he avoided damage to the laryngeal nerve, I experienced several complications. I could not talk above a whisper, I could not speak for long periods of time, I couldn’t even walk and talk at the same time. On top of all that, I would get breathless with even the slighest exertion and I had difficulty drinking without the fluid going down the wrong way!
I was devastated! Unfortunately, my well-meaning friends did not always help; their solutions did not fit the problem I was experiencing.
Some talked louder – but there was nothing wrong with my hearing.
Some talked in simple sentences – but my brain was still working alright.
And someone even switched into English. I am aware of my accent – but that didn’t get any worse, and normally my Swedish works just fine.
Thus, with the best of intentions, all these people had spontaneously come up with solutions without analyzing the problem first, and that can hurt.
It hurt because they did not see me as I am, someone with a well functioning brain, who could speak Swedish and hear just fine. Their assumptions about me distanced me from them and made me feel as Susan Sontag once said as part of the „kingdom of the sick“. Luckily, I recovered fully and I am now able to work as a GP. However, my experience with illness taught me about the importance of listening. Even if it is a few extra seconds, the extra time spent determining the problem before jumping to a solution is invaluable. In everyday consultations, our diagnostic thinking and our intention to find solutions starts directly with the patients’ first words. Physicians on average, interrupt patients within seconds as they rush to find a solution. We should let the patients tell their story. This is not only respectful, but may also help us diagnose the real problem facing the patient. As William Osler is purported to have said „ Listen to your patient; he is telling you the diagnosis“. Additionally, we have to see the patient as a whole person with the illness being only a limited part of him or her – and that part needs to be defined before suggesting or trying out solutions.
My name is Dorothea Lagrange. I was born and raised in Germany and that is where I trained and began my medical career. After taking a long time off to start a family, I got back into medicine and I currently work as a general practitioner in Sweden. I love my work and I work with fantastic colleagues and wonderful patients with diverse backgrounds. In addition to being a physician I am also a mother, relative, friend, and a patient myself – all roles which give me different views of medicine and health.
Marleen Kunneman, PhD; Megan Branda, MS; Ian Hargraves, PhD; Arwen Pieterse, PhD; Victor Montori, MD, MSc
Two roads diverged in a yellow wood,
And sorry I could not travel both
– Robert Frost “The Road Not Taken”
Although recommended, shared decision making (SDM) is still hard to implement in routine care. This is, we believe, in part because patients may not realize that there is more than one reasonable approach to address their situation, and that their involvement is critical in figuring out which care plan fits best. In other words, patients may lack ‘choice awareness’.
In a recently published paper, we aimed to assess the extent to which clinicians, using or not using conversation aids, foster choice awareness during clinical encounters. Also, we aimed to assess the extent to which fostering choice awareness, with or without conversation aids, is associated with greater patient involvement in SDM.
To this end, we randomly selected 100-video-recorded encounters from our database of 10 clinical trials of SDM interventions in 7 clinical contexts (low-risk acute chest pain, stable angina, diabetes, depression, osteoporosis, and Graves disease). Coders, unaware of our hypothesis, coded the recordings with the OPTION12-scale, which quantifies the extent to which clinicians involve patients in decision making (0-100 score, higher score is more involvement). Blind to these OPTION-12 scores, we used a self-developed coding scale to code whether and how choice awareness was fostered (see Table).
Fostering choice awareness behavior
N (%)
Choice awareness not fostered
47
1. The clinician does not foster choice awareness; rather, the clinician informs on the next step in management without introducing other options for consideration
34 (72)
2. The clinician does not foster choice awareness; rather, the clinician makes a recommendation that implies the existence of alternatives, but without explicit mentioning these
13 (28)
Choice awareness fostered
53
3. The clinician fosters choice awareness by listing relevant options followed by recommending one of these to the patient
15 (28)
4. The clinician fosters choice awareness by listing relevant options without recommending one of these to the patient
38 (72)
We found that clinicians fostered choice awareness in about half of the encounters, mostly by listing relevant options without providing a recommendation (see Table). If clinicians did not foster choice awareness, they mostly presented the next step in management without explicit or implicit suggestion that there are other options for consideration. Fostering choice awareness was associated with a higher OPTION12 score (20 points difference on 0-100 scale), regardless of whether conversation aids were used. Removing OPTION items that focus specifically on fostering choice awareness did not change the results (20 points vs 19 points difference).
Our study suggests that fostering choice awareness is associated with a better execution of other SDM steps, such as informing patients or discussing preferences, even when SDM tools are not available or not used. In future research, we will examine the causality of this association.
Recently, a systematic review that my colleagues and I started working on two years ago, was published in PlosONE (link to paper). Here, we will provide a summary of the methods and results and share our conclusions and recommendations. The aim of this review was to rate the psychometric quality of existing instruments measuring the process of shared decision making (SDM). Publishing this work is a great milestone for me for several reasons. Doing a systematic literature review is a time-consuming and intense process, and for months you crave for the moment that the work will finally be published and shown to the world. Also, this is my first scientific article in the field of SDM, combining my experience with performing psychometric validation studies with my current research focus, and research passion, SDM.
The main aim of this systematic review, as stated in the background, was to help researchers identify the best instrument to measure SDM in their studies. As there are so many SDM instruments available, reviewing the separate instruments provided us with the opportunity to aggregate results and identify overall strengths and limitations of the instruments and the methods applied in their development and evaluation studies. This, I think, is even of greater value to the SDM field than merely providing insight into the quality of the separate instruments. By presenting overall results on the methodological quality and the psychometric quality of SDM instruments, we aimed to point out the challenges that our field faces in the development and evaluation of the measurement instruments we use in our research and practice evaluation. I hope that our work will trigger reflection on the methods commonly applied and their limitations, and that it helps in starting and continuing discussions on future directions to help improve the quality of studies validating SDM instruments, as well as those using them.
I look forward to hearing your thoughts and views on our findings and ways forward. My co-authors and I will join a few conferences this year (e.g. SMDM-Europe 2018 in Leiden, the Netherlands and ICCH 2018 in Porto, Portugal), so for a discussion in person, please come and meet us there!
Background
As the readers of this Blog may be aware of, research on shared decision making is extensively growing. Most studies on the extent of shared decision making (SDM) seen in clinical care, on the effects of SDM training and tools for healthcare providers and patients, and on the effect of SDM on psychosocial and physical patient outcomes make use of standardized measurement instruments to assess the actual realization of SDM. The validity of their results highly depends on the psychometric quality of the instruments used. Existing instruments to measure SDM include questionnaires for patients or providers, and observer-based coding schemes to be applied to audio- or videotaped consultations. We performed a systematic literature review of instruments assessing the SDM process, in order to help researchers choose the best instrument in terms of psychometric quality.
Methods
We systematically searched seven databases. Two researchers independently evaluated all retrieved records for eligibility, using pre-defined inclusion criteria (i.e., peer-reviewed articles that describe the development or evaluation of an SDM-process instrument). For each instrument we identified in the included articles, we rated the psychometric quality for ten separate measurement properties: separately for ten measurement properties: Internal consistency, reliability (test-retest reliability for questionnaires and intra-rater and inter-rater reliability for coding schemes), measurement error, content validity, structural validity, hypotheses testing, cross-cultural validity, criterion validity, responsiveness, and Interpretability.
For this quality rating we performed two quality appraisals: we appraised 1) the quality of the methods applied in the development and/or validation study, using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN, see www.cosmin.nl), [1-2] and 2) the psychometric quality of the measurement property per instrument, based on the results of the development and/or validation studies.[4] For each instrument, we synthesized the results of the two appraisals into a best level of evidence per measurement property. The levels of evidence were: ‘unknown’ (due to poor methods), ‘conflicting’, ‘limited’, ‘moderate’, and ‘strong’. These were scored as either positive or negative results for a measurement property evaluation. [5].
Findings
Our search resulted in 51 included articles, describing 23 different instruments measuring the SDM-process. Including all revisions and translations of these instruments, we found in total 40 different instrument versions. Most instruments were observer-based coding schemes (N=18), followed by patient (N=16) and provider questionnaires (N=4); two instruments were dyadic, i.e., they included multiple perspectives in the assessment of SDM.
Overall trends in the quality of SDM instruments and the methods applied in their validation studies
Generally, evidence is lacking regarding the measurement quality of existing SDM instruments, partly because not all measurement properties have been evaluated, and partly because the methodology applied in the evaluation studies was of poor quality.
Overall, six measurement properties have been evaluated for less than 20% of the instruments, accounting for their applicability: Test-retest reliability of questionnaires (17%), measurement error (0%), content validity (14%), cross-cultural validity (13%), responsiveness (2%), and interpretability (0%). The best-evidence synthesis indicated positive results for half of the instruments for content validity (50%) and structural validity (53%), if these had been evaluated. In contrast, negative results for about half of the instruments were found for inter-rater reliability (47%; coding schemes only) and hypotheses testing for construct validity (59%), in case these had been evaluated. Differences in the quality between instrument types were found for internal consistency and structural validity: results for questionnaires were overall more positive than for coding schemes, and for coding schemes more often unknown than for questionnaires, due to lack of validation of these measurement properties, or because of poor methodological quality of the studies.
Concerning the often poor results of hypothesis testing for construct validity evaluation, it is of note, hypotheses about relationships with instruments that were designed to measure the same construct (i.e., the SDM process), either measured from the same or from a different perspective, were often not confirmed, or did not reach the threshold we handled for positive results for correlation coefficients of ≥0.50. The weak correlations point both to a lack of consensus on how to define the process of SDM and to the question whether SDM viewed from the perspective of the patient, provider, or observer can be regarded as the same construct?
This fits the finding that developers often only provided a vague definition of the construct to be measured, or none at all. Also, only two developers explicitly mentioned which underlying measurement model they assumed: a formative model, in both instances. The choice for the measurement model–reflective, in which the latent construct determines the items (effect indicators) versus formative, in which the latent construct is a result of independent items (causal indicators)–has implications for the development and validation criteria of instruments [6]. Neglecting the differences may result in applying an inappropriate methodology. In 2011, Wollschläger called upon the SDM field to reach consensus on the most suitable underlying measurement model [7], a call that has not yet been clearly responded to.
Conclusions and recommendations
A large number of instruments are available to assess the SDM process, but, evidence is still lacking regarding their measurement quality, partly because measurement properties have not been evaluated at all, and partly because the validation studies have been of poor quality. Clearly, this does not imply that existing instruments are of poor quality, but rather, that their quality is often unknown. In practice, the choice for the most appropriate instrument for your research can therefore best be based on the content of the instrument and other characteristics of the instruments that suit best the aim of the study and the resources available for the study, such as the perspective that is assessed and the number of items. For quality improvement of existing SDM instruments, and improvement of the validation studies in the SDM field, we recommend the following:
Key recommendations:– Reach consensus on the most suitable underlying model for the construct of the SDM process.- Provide a clear definition of the construct the instrument aims to measure–in this case the SDM process.- Perform content validity analyses prior to further validation of new instruments.- Include large-enough sample sizes in validation studies; improvement of sample sizes is especially needed for inter- and intra-rater reliability testing of coding schemes.- Seek alternative ways to evaluate test-retest reliability of questionnaires for the process of SDM.- Find ways to improve inter-rater reliability of coding schemes; e.g., by providing more detailed descriptions of coding scheme items.- When formulating hypotheses to evaluate construct validity, include instruments with constructs that are as similar as possible to the construct of the instrument under investigation and, alternatively, make use of known-group differences testing.- Determine minimal important change values to inform the interpretation of change scores in intervention studies.- Above all, we recommend to further evaluate and refine existing instruments and to adhere as best as possible to the COSMIN guidelines (www.cosmin.nl) to help guarantee high-quality evaluations of psychometric properties.
For a more detailed description of the methods and results of our systematic review and for a more nuanced discussion of our findings, please take a look at our full paper in PlosOne.
For any questions about this work feel free to contact Fania Gärtner: f.r.gartner@lumc.nl
Submitted by
Fania R. Gärtner1, Hanna Bomhof-Roordink1, Ian P. Smith1, Isabelle Scholl2,3, Anne M. Stiggelbout1, Arwen H. Pieterse1
Author affiliations
1 Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Centre, Leiden, the Netherlands
2 Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
3 The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, NH, Unites States
Dr. Fania Gärtner holds a Master’s degree in Social Psychology and a PhD in occupational medicine. In her work, she combines her expertise in the development and evaluation of measurement instruments, and doctor-patient communication and SDM. She has a special focus on learning needs and barriers of oncologists for applying SDM in daily practice. Next to her work as a researcher, Fania has extensive experience in training medical students and specialists in communication and SDM skills, which brings her in contact with diverse attitudes and levels of competencies, and feeds her eagerness for the research in this field.
References
Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res. 2010;19(4):539-49.
Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. Journal of clinical epidemiology. 2010;63(7):737-45.
Terwee CB, Mokkink LB, Knol DL, Ostelo RW, Bouter LM, de Vet HC. Rating the methodological quality in systematic reviews of studies on measurement properties: a scoring system for the COSMIN checklist. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2012;21(4):651-7.
Terwee CB, Bot SD, de Boer MR, van der Windt DA, Knol DL, Dekker J, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60(1):34-42.
Terwee CB, Prinsen CA, Ricci Garotti MG, Suman A, de Vet HC, Mokkink LB. The quality of systematic reviews of health-related outcome measurement instruments. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2016;25(4):767-79.
Jarvis CB, Mackenzie SB, Podsakoff PM. A Critical Review of Construct Indicators and Measurement Model Misspecification in Marketing and Consumer Research. Journal of Consumer Research. 2003;30:199-218
Wollschlager D. Short communication: Where is SDM at home? putting theoretical constraints on the way shared decision making is measured. Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen. 2012;106(4):272-4.
Every year, about 10 million people worldwide develop dementia – one person in every three seconds.1 Dementia is a progressive brain-disease for which no curative treatment is available. Patients with dementia endure cognitive decline and will eventually not be able to take care of themselves anymore. In the early stages of dementia, patients may still be able to participate in shared decision-making (SDM),2 but as the disease progresses, this may become increasingly challenging. To ensure that we provide patients with the best personalized healthcare also in these final phases of life, we need to know what is most important to them. A patient representative like a close family member or a caregiver can in such cases be asked to participate in the SDM process to design a care plan that fits the patient as best as possible.
As part of my medical training, I participated in a minor ‘Patient Centred Care’3 of the Leiden University Medical Center, (the Netherlands), focussing on self-management and SDM. For this 10-week course, I delved into the topic of SDM with patients with dementia. Here, I report on the interviews I had with two patient representatives, Richard* (63 years old, works as a nurse in a nursing home for people with dementia) and Helena* (48 years old). I wanted to explore the role of the doctor, the patient, the patient’s caregivers, and Advanced Care Plans (ACP’s) in SDM about decisions at the end of life for patients with dementia who are unable to participate in such conversations. An ACP is a document made by the patient and his family, possibly also together with his clinicians, in the early stages of dementia. It contains directions for clinicians and caregivers about a patient’s preferences regarding future healthcare when the person is no longer able to express his or her own preferences anymore. Of note, the clinical value of ACP’s is still questionable for practical and ethical reasons, such as how long it is valid and how to interpret a patient’s preferences when described situations lack details.
In Richard’s views, doctors should always take the patient’s values and preferences into account when deciding about care, even though this is challenging in advanced dementia. However, even in developed stages of dementia, patients can often express preferences in some way. Richard also stated that the family and caregivers have an important role as well: their involvement is crucial in ensuring that the opinion and preferences of the patient drive making decisions about care. They know the patient better than the doctor, and therefore they should advocate for what they think would be in the patient’s best interest. Although we must always aim to care for the patient in ways compatible to the patient’s ACP, Richard believes doctors are entitled to overrule the ACP if they believe it is better for the patient.
Helena, on the contrary, would prefer the clinician to take the lead in making decisions about care for patients with advanced dementia, not necessarily engaging family members and caregivers in a SDM process. Although they could act on behalf of the patient, the clinician should always follow the ACP. In other words, the ACP is superior to everyone’s opinion, even to the doctor’s opinion. The ACP has to be carried out at all times, since it is the most direct source of the patient’s opinion, according to Helena.
The patient representatives I talked to agreed that SDM in the setting of advanced dementia is complex and requires more effort from the doctor. More than in most other care settings, clear communication with the patient’s family members and caregivers, and considering with them what would be in the patient’s best interest, requires effort. As the relation with the patient may become increasingly difficult to maintain, developing a relation with the family members and caregivers becomes ever more important for clinicians in caring for the patient.
During the half minor, I realized that patient representatives may differ in their views on the value and implementation of SDM in advanced dementia. Just as for frail older patients without dementia,4 we need to find ways to ensure that all patients receive care that fits them as best as possible, even when they are unable to voice their preferences and participate in a SDM process. As patients with dementia might forget who they truly are, we must not forget them.
* To protect their privacy, I altered the names.
Submitted by: Hannah Leegwater, medical student at Leiden University Medical Center, the Netherlands.
I would like to acknowledge Marleen Kunneman, PhD and Arwen Pieterse, PhD for reviewing and editing this blog post.
References
Prince MJ, Wimo A, Guerchet MM, Ali GC, Wu Y-T, Prina M. World Alzheimer report 2015 – the global impact of dementia: an analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International, 2015. 84 p.
Van der Flier WM, Kunneman M, Bouwman FH, Petersen RC, Smets EMA. Diagnostic dilemmas in Alzheimer’s disease: room for shared decision making. Alzheimers Dement (N Y). 2017 May 9;3(3):301-304. DOI: 10.1016/j/trci.2017.08.008. eCollection 2017 Sep.
Van de Pol MH, Fluit CR, Lagro J, Slaats YH, Olde Rikkert MG, Lagro-JanssenAL. Expert and patiënt consesnus on a dynamic model for shared decision-making in frail older patients. Patient Educ Couns. 2016 Jun;99(6):1069-1077. DOI: 10.1016/j.pec.2015.12.014. Epub 2015 Dec 28.
Short, deep, and intense are the three words that best describe my experience in KER unit. I learned a lot from each and every one of the incredible members of this family, they’re all admirable. Everybody loves to work and I love that. The work environment is at its finest. They’re highly productive, very kind, and very very friendly. They made me feel at home since the very beginning. This is the perfect place to do research. However, not any kind of research. But research that improves, with elegant solutions, the patient care.
One of the best lessons I take home is that when JP (“yei-pi”) and I were talking about a research project, and he told me: “Just remember that the results from every research must mark the beginning of another one and most contribute to the greater picture; every research project is bounded to the next one, so that all the projects together can contribute to improving the patient care”.
On my first day, Victor invited me for a cup of coffee. Walking back, I expressed my gratitude for having the opportunity of being able to be here and my full intention to work as much as possible. To what he answered: “KER unit is a place for grownups; it depends on you how much you want to work. If you want more work, ask for it; if you want less, just say”. Later, he concluded our chat with the following: “Dive into the pool, if it contains water, you’ll probably swim; if it doesn’t, you’ll only get a bump in the head”.
Throughout my stay here, I got involved in as many projects as I could. But most importantly, I had the support to develop a few of my own. I worked on a systematic review to assess the effectiveness of interventions made to foster cost conversations between patients and clinicians. I had the opportunity to start this review from the beginning and even to lead the project. Cost discussions are considered a key element for high quality care. Surprisingly, we found out that there is a huge lack of interventions to foster them!
Another project on which I have been working on is a critical appraisal of the cost-effectiveness analyses that have been made regarding type 2 diabetes treatment. Recent evidence demonstrated that all randomized clinical trials and meta-analyses of randomized clinical trials have failed to prove that intense glycemic control reduces the incidence of patient important outcomes such as myocardial infarction or stroke. So, we are trying to identify the sources of information from where these analyses calculate the effectiveness. This is a very important project because cost-effectiveness analyses are often made to justify new treatment options for populations of patients (e.g. countries).
Research has become a great passion in my life. It has changed my way of thinking, acting, and approaching and resolving problems. It’s awesome and very satisfactory the fact that you can generate knowledge through research. But it is even more when you know that your work is contributing to a bigger purpose: to get closer to the type of care that every patient deserves.
My stay here ends because I must go back to finish medical school and to support my research team back home with the establishment of the new KER unit in Mexico. During my six weeks with the KER family, I worked very hard every day from the morning through the night, and I discovered that I am capable of much more than I thought. Nevertheless, this capability of mine, is conditioned: I need to have a good team, and in KER unit, I have the best. Thanks to my team, I dived into the pool, I found water, and I swam.
I leave without wanting to. I leave with eager to come back.
Thanks to the KER family for this great opportunity!
Frank Barrera INVEST-KER Unit, Faculty of Medicine, Universidad Autonoma de Nuevo Leon Monterrey, Nuevo León, México
As pharmacists are now embedded in many healthcare teams with responsibilities for medication therapy management, teaching shared decision-making skills is essential in our pharmacy curriculum. In the 2nd year of a 4-year longitudinal evidence-based medicine (EBM) doctor of pharmacy school curriculum, student pharmacists are taught how to communicate evidence to patients and health care team members, and how to use a shared decision-making process with patients, using tools from the Mayo Clinic Shared Decision Making National Resource Center. The following is a reflection of their experience, as future pharmacists, with the shared decision-making activity:
In a society where patients have a plethora of information at their fingertips, curiosity and involvement in self-care have become increasingly popular. However, with readily available information, particularly on the internet, both credible and deceptive, it is crucial that patients and health care providers work together in developing effective therapeutic plans. There are certain clinical scenarios that merit the implementation of swift, solitary decision-making by healthcare professionals. However, more often, there are cases where there is no definitive correct answer – situations in which priorities and values should be taken into consideration. We believe that the shared decision-making model is an optimal system, by which patients and health care providers can work together to formulate a clear picture of an effective action plan.
As doctor of pharmacy candidates at Western University of Health Sciences, we have had the valuable opportunity of engaging in progressive, interactive workshops that mimic the shared-decision making model. During one of these workshops, we were divided into teams and given hypothetical cases, modeling clinical scenarios. The goal of this workshop was for us to role-play as patients and pharmacists in a clinical setting to practice the shared decision making model and to learn how to effectively communicate with patients to discuss their risk, health history, and preferences to unite on healthcare decisions that are mutually agreed upon. This exercise was effective in shedding light onto the experience of a patient, as well as a practicing pharmacist in shared-decision making.
For each of the two example cases, we were supplied with shared decision-making tools to assist us in formulating a decision for our patients’ therapy options. For the first case regarding diabetes management, we were exposed to the Diabetes Medication Choice decision aid cards (https://shareddecisions.mayoclinic.org/decision-aid-information/decision-aids-for-chronic-disease/diabetes-medication-management/), each of which focused on one topic and all pertinent information that may affect patients’ decisions, such as cost, lifestyle modifications, fear of needles and insulin therapy, blood sugar levels, side effect concerns, among other topics. In essence, these cards help both the patient and healthcare provider discuss aspects that the patient valued in order to choose the most appropriate treatment option. For instance, the patient in this one case study did not have any cost limitations, was most interested in minimizing alterations to her daily routine and enhancing weight loss. We began looking at her options based on these topics, and moved our way to other topics based on her priority scale. We simultaneously integrated clinical expertise and scientific evidence into the equation in order to make the best possible decision.
Another tool we used was the online interactive tool for determining fracture risk, developed by the Mayo Clinic Shared Decision Making National Resource Center for our osteoporosis patient case. This was a great resource because it allowed us to engage with our patients, as healthcare providers, by asking questions about their history, potential risk factors for developing osteoporosis, and preferences in their lifestyle or therapy. After we gathered all pertinent information, we input our patient’s specific data into the website, which then generated a user-friendly 100-face Cate’s plot, a visual aid that displays the patient’s personalized fracture risk with and without treatment, so that the patient could better understand the level of improvement offered by the potential treatment plan. Additionally, other tabs included tips on lifestyle modifications and other therapy options for patients to consider. This tool provided patients with a visual aid to better understand their risk for developing osteoporosis and the benefit of initiating osteoporosis therapy. Tools like these give healthcare providers, and patients alike, an opportunity to communicate with each other interactively and highlight the importance of EBM, especially when it comes to making important healthcare decisions. This allowed us another chance to interact with the patient and provide them with an outline of key points to focus on during the SDM session.
In essence, the shared decision-making model is the application of EBM. With the adoption of EBM in clincal practice, we believe that the SDM model will become organically integrated into most (if not all) health care practices. Participating in the SDM simulation workshop was very valuable as it fostered a patient-pharmacist interaction that remained focused on the patient’s priorities and values, while still catering to the pharmacist’s goals of achieving therapeutic efficacy. This is important because, based on our experience, it seems that patients respond best to information that is organized in a fashion they can appreciate and understand, without being clouded by hazy, complex information. This experience also allowed us to hone our clinical skills by showing us how to frame our questions and topics while effectively communicating evidence-based information to patients. We believe that due to their increased involvement in reaching a decision about the treatment plan, patients will be more likely to adhere to the designated agenda – as a proactive contributor to their healthcare plan, they will be more aware of the risks and benefits of adherence, as well as the risks of non-adherence. In situations where there is no definitive therapeutic plan, the patient and pharmacist can work together to figure out whether a treatment is necessary, and if so, which treatment option is most suitable. Ultimately, the SDM model will help us address clinical siutations that require a collaborative effort from both health care provider and patient.
Submitted by:
Doctor of Pharmacy Candidates, Western University of Health Sciences: Ani Arsenyan, BSBA, Dara Nguyen, BS, Sona Sourenian, BS EBM Curriculum Coordinator/Faculty and Professor, College of Pharmacy: Cynthia Jackevicius, BScPhm, PharmD, MSc, BCPS-AQ Cardiology, FCSHP, FAHA, FCCP, FCCS
We were very thrilled to participate at the ISDM conference in Lyon. We were honored to had been invited to contribute in the Special ISDM ZEFQ Issue regarding the state of implementation of SDM in different countries. The development of SDM in our country is challenging, as Mariela Barani, our lead researcher, has discussed with other colleagues at the Sunday Workshop on national strategies for implementing SDM.
We are currently exploring the perceptions from our health professionals and patients regarding SDM in our setting. Our activities in this conference included the presentation of our latest research on trans-cultural adaptation of SDM measuring, a co-chairing of one of the oral sessions and three poster presentations about women’s perceptions on breast cancer screening, a validation of a search filter for studies on patient’s values and preferences, and health professionals and patients perceptions regarding participation in SDM in a low health literacy community. It was a great opportunity to learn from other experiences and become enlightened with a wide variety of research studies.
We highlight the need for short validated tools in non-English speaking languages to aid the evaluation and improvement of clinical practice. We think that this conference will help us improve our initiative to locally empower patient-centered care research and implementation.
We also reflected with Victor Montori about SDM and financial incentives. It is on vogue worldwide today the use of financial incentives to boost SDM activities. But in practice, our perception is that those incentives only stimulate the simply registration of the use of a decision aid but does not guarantee that a SDM conversation has taken place between the patient and his caregiver. Victor agreed with us and also added other arguments for not incentivizing with money SDM: 1) SDM is good practice and that is enough to justify its introduction in clinical practice; 2) When you start paying for something, money will not last forever and after some time you will be in need of changing the financial incentive to other indicator or stop paying for it. And caregivers that have been payed for doing SDM until that moment will ask for money to continue doing it; 3) Once you start incentivize a SDM indicator, it will go up because doctors know that you are measuring it and they are being evaluated trough that indicator. After some time, when doctors forget about it, it will decline. This is called Hawthorne effect, also referred to as the observer effect, and is a type of reactivity in which individuals modify an aspect of their behavior in response to their awareness of being observed.
So we came to the conclusion that to incentivize SDM, we have to work on changing culture and make SDM a part of clinical practice.
Dr. Margaret Schwarze, a surgeon from the University of Wisconsin, and her colleagues published a proof of concept study “A Framework to Improve Surgeon Communication in High-Stakes Surgical Decisions—Best Case/Worst Case.”1 (https://www.ncbi.nlm.nih.gov/pubmed/28146230) This article was recently the topic of discussion during our bi-weekly Shared Decision Making working group.
Schwarze and colleagues described that hospitalized elderly adults who have urgent surgical conditions may receive unwanted burdensome surgical care at the end of life. Routine discussions between surgeons and elderly patients may not result in a care plan that authentically honors the goals, values, and preferences of patients.
To improve these discussions, they developed a “Best Case/Worst Case” framework to discuss high stakes surgical decisions (https://www.youtube.com/watch?v=FnS3K44sbu0). Surgeons were instructed to draw two lines on a paper. One line represented the option of pursuing surgical treatment and the other line represented the option of choosing supportive care. At the top of each line (or option), the surgeon would write and write and describe the “best case scenario” (or outcome) of that option. At the bottom of each line, the surgeon would write and describe the “worst case scenario” of each option. Somewhere in the middle, the surgeon would describe the “most likely scenario” of each treatment option. Surgeons were allowed to describe each best and worst case scenario as they best saw fit according to the individual patient circumstances. Thirty cardiac, vascular, and general surgeons at the University of Wisconsin completed a two hour training on the communication framework.
In this pre/post study, investigators enrolled 32 elderly hospitalized patients with urgent, but not emergent, surgical conditions with a high risk of adverse outcome (≥40% risk for serious surgical complication or ≥8% risk of death). In the pre-intervention group, usual care conversations were audiotaped. In the post-intervention group, conversations using the “best case/worst case” framework were audiotaped.
The primary outcome was the OPTION 5 score (https://www.ncbi.nlm.nih.gov/pubmed/25956069), which allows a rater to rate the decision making process on 1) presentation of multiple options, 2) establishment of a partnership with the patient, 3) description of the treatment differences in each option, 4) elicitation of patient preferences, and 5) integration of patient preferences into the plan.
Prior to the intervention, the median OPTION 5 score of audiotaped conversations was 41 (on a 0-100 scale)—and improved to 74 in the post-intervention group. Surgeons in the intervention group were more likely to involve patients and families in decision making, were more likely to present various treatment choices, and were more likely to describe outcomes rather than isolated procedural risks.
During the discussion at our SDM working group, several strengths of this approach were noted:
This method was easily adoptable by surgeons and can be used in high stakes decisions in the acute hospital setting.
Whereas many patients undergoing potentially risky surgical procedures may not be aware of potential complications, this method formally allowed for patients and surgeons to at least consider a “worst case scenario.” This has the potential to spark discussion about what a patient values most in determining a treatment plan.
This method allowed surgeons the flexibility to tailor the treatment options as well as the outcomes of those options to the individual patient. This may therefore represent a universal, non-disease and non-context specific method to improve shared decision making discussions in general.
We also noted several questions and limitations:
What constitutes a “best case” or “worst case” outcome may considerably vary between patients—as patients value different things when faced with high stakes, end of life decisions. Some people at our working group thought that the example descriptions of the “most likely” outcome actually seemed worse than the example descriptions of the “worst case” outcomes. Who determines what the best and worst case scenarios were? Was this left up to the individual surgeon? Were the descriptions standardized in any way? Were questions asked to assess if description of best and worst outcomes rang true to the individual patient? How much were patients influenced by a potentially biased presentation of one treatment option versus the other? What do we know about the patients’ perspectives and interpretations of the best case and worst case scenarios?
To our knowledge, the likelihood of the outcomes was not specifically disclosed in a salient manner. If one were to apply the best case/worst case methodology to a “lower stakes” decision, the worst case scenario may be very rare—and the most common outcome a particular decision may be that nothing changes.
Even though the OPTION 5 score was higher in the post intervention group, does this really mean that a better decision was made? While we agree that the OPTION 5 (https://www.ncbi.nlm.nih.gov/pubmed/25956069 ) and OPTION 12 (https://www.ncbi.nlm.nih.gov/pubmed/15713169) scores represent a good attempt to measure a certain quality of shared decision making, there are still various aspects of decision making that are overlooked. Tools to better measure the quality of decision making are needed.
While we congratulate the authors on having a high inter-observer agreement regarding ratings on the OPTION 5 score (.8), this is much higher than what most other groups (including our group and the group validating the instrument) (https://www.ncbi.nlm.nih.gov/pubmed/25956069) have been able to achieve (.6 to .7). In addition, both the pre-intervention and post-intervention OPTION 5 scores were quite a bit higher than what we have seen in other trials, including ours. Additional information about the process of training observers and measuring inter-observer reliability is desirable.
Overall, Dr. Schwarze and colleagues (http://www.surgery.wisc.edu/research/researchers-labs/schwarze/) showed that a framework for formally presenting the best case outcome, worst case outcome, and most likely outcome of various treatment options increased shared decision making as measured by the OPTION 5 score. We congratulate Dr. Schwarze and colleagues for developing and testing a framework to try to improve decision making for high stakes surgical decisions for hospitalized elderly adults!
Submitted by Michael Wilson, M.D. Dr. Wilson studies end-of-life decision-making in the hospital and intensive care unit (ICU). He aims to improve individualized prognostication, shared decision-making and the delivery of quality palliative care to patients and their family members in the hospital setting.
References
Taylor LJ, Nabozny MJ, Steffens NM, et al. A Framework to Improve Surgeon Communication in High-Stakes Surgical Decisions: Best Case/Worst Case. JAMA Surg 2017.
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.
References
Casarett D, Pickard A, Fishman JM, et al. Can metaphors and analogies improve communication with seriously ill patients? J Palliat Med. 2010;13(3):255-260.
