Harvard University
Radcliffe Exploratory Seminar: Shared Decision MakingRecap and Reflections--Day One--Background of integrating shared decision makingThe main goal of the HDSC is to get the right treatment to the right patient at the right time, every timeA shared sentiment is that time is a big barrier to SDMOften there is no correct answer for what treatment to choose: this is when clarifying patients’ values, cares, concerns is so important Decision aids help prime patients to be prepared to have high quality conversations: why not begin this priming process way before the decision is in question?Increased SDM can result in increased adherence to treatment Patient-triggered ordering and training on communication can help surmount barriers to SDMTaking on some myths: We already do shared decision making and The doctor knows what’s best for meOften times it seems like the provider made the decision and projected it onto the patientWhat is documented in the chart can have no resemblance to the conversationThere can be this use of an apologetic tone when patient’s counter the provider’s recommendation In medicine it becomes so easy to shame peopleA pleasant conversation is not indicative of collaboration, shared treatment plans, eliciting goals and preferencesWhat does it mean to make a good decision? Does that differ in medicine from other areas? Panel discussion Shared decision making and decision quality measurement—what is known about the quality of medical decisions (Dan Matlock); Decision Quality: low decision concordance and low patient knowledge = poor decision; high decision concordance and high patient knowledge = good decision! Shared decision making is the meeting of two experts In general, patient values are poorly predicted by providers “What are the interpretations of 30% chance of rain?”: Cognitive information is hard to interpret for providers, how can we ask patients to do it? When sharing probabilities, how can we present the numbers but not make patients lose that hope that has a therapeutic value?Culture of medical paternalism can mean well but it eliminates the patient’s voice Medical culture of prolonging life makes it difficult to have a conversation about goals and preferences (particularly in context of LVAD)As medical complexity increases – there is also rising statistical illiteracy with doctors Evidence is poorly interpreted and relayedThe patient experience and quality of care—what do we do well and where do we need help? (Susan Edgman-Levitan) How do we define quality on the patient end? Talk to patients to find out! Surveys were born to determine the outcomes we care about and the creation of patient-centered measures The cognitive interviewing associated with the surveys illuminates patients values in a really interesting mannerSplitting up a conversation into its smaller parts allows us to make sure that our interpretation/measurement of the conversation is clearer Articulating the ideas for which there are no words. (Lunch activity)Jill Johnson: Movement activity:Think and express with the body!How can we integrate physical thinking into their bodies?Pausing is so important; because it allows you to listen to yourself and reflectPause creates a tone in talking and moving that can make action feel more deliberate and right The dance learning process cannot be rushed but when you are a patient you usually don’t feel anything but rushed Patients come resigned to the humiliation of being in that role. They are resigned to the coldness of the experienceThe 3 “I”s to think about: the I (narrator), the I (person in the story) and the I (the reader) – all these perspectives combineThe time squeeze that has dehumanized the patient has does the same to the provider The choreography of a medical visit shows clear dynamics between two parties physicality of examination what would that look like if more peer to peer: shared new experience We are trying to coax patients into a paradigm providers understandHow can we make this hierarchy change its structure to be horizontal? Taking on some myths: I am the expert, making a clear recommendation is my job and I don’t want to bother the doctor, I don’t want to be seen as a difficult patient Does shared decision making support or undermine the therapeutic alliance? Panel discussion (20 min overviews) followed by Q&A session (Susan Edgman-Levitan)(a) Shared decision making and clinician training (Leigh Simmons); \When training clinicians and trainees about SDM: highlight that there is a sweet spot of understanding patient values and then presenting the optionsWhen patients come to a conclusion before you even have a conversation: there is still a sense of obligation to slow down so the treatment preference they have is informed Option/choice burden exists: the idea that “more options is better” is not entirely trueMore options can often lead to paralysis(b) Therapeutic alliance and the placebo effect (Kathryn Hall)What modifies the individual response to treatment?Placebo effect: this is sensed beyond the “Active” treatment – drug or interventionElements of a therapeutic encounter are placebogenic: symbols that invoke something special is happening Placebo response: a true physiological response: can promote or downgrade opioid response Expectation is driving brain and physical responseCOMT breaks down dopamine (can have high or low activity version of COMP)Genetic variants between val/val and met/metVal/val: have 3 times less dopamine; because it gets broken down so quickly - characteristically need informationMet/Met: dopamine lasts longer - characteristically need to be touchedPlacebome: 15 genes – what genes modify your placebo responseKnowing this information, a good physician does not treat all their patients the same wayHow can we communicate risk and not remove hope? How can we frame this information?Can you “pre-tell” information before you actually tell the information to understand how they would respond and change the style of the conversation?Conditioning might affect behavior when it comes to what coping/dealing stylesTaking on myths: Shared decision making only works well in select patient populations and More information, more options are always better(a) Rethinking decision aids to reach diverse populations (Maria Jibaja Weiss)Different anecdotes patients can select based on cultural identification makes this tool engaged across populations Jewelry box meant to keep track of points patients want to talk aboutTool that highlighted clearly what patients are confused about or wanted to discuss further(b) How context, systems, and individuals may affect participation (Afsan Bhadelia)When considering systems reform often the focus is not on quality on a larger scaleDifficult to create a global standard for what value or quality care is: which is when the idea of ethical reasoning becomes important to consider Need for DAs to be culturally competent: not just person focused; but family focusedMaking decision support scaled for large populations requires understanding cultural and social dynamics and where these tools can fit Facilitating patient self-expression: reflections and activity (Daniel Johnson)How does the model to draw out stories for students work in a clinical setting? Write something before the visit, perhaps? Illustrate?What can be fit in the time before visit or after the visit?Very hard to get that information that informs their whole lifeHow do you practice great listening? How can we be receptive to what comments people are making?How is the quality of listening affected by current medical visit format?Communication breakdown: this can happen on both sides: Belief that medicine is all powerful: problematic on side of patient and provider Barriers to communicationIdeas/modes of expression to overcome communication barriers- language- time- fear- doctor doesn’t know patient’s back story- self-awareness- self-compassion- physician exhaustion/burnout- power hierarchy- Belief that medicine is all powerful/all healing- Gesturing- more time- Health literacy- interpreters - Being present- Opening your heart- Non-judgmental observation- patient’s writing a biography for their record- Involving others in health care team TIME: #1 problem faced; it can be quantified – the demands are huge and you can’t make more of it Maybe you don’t want to open a door or layer of communication if you don’t have the time to occupy the spaceCatch 22: if open the door, you can become burned out and stressed out – because go behind on schedule; but if you do open the door: you are actually reminded about why you chose to pursue the career in the first placeHow do you create more intensity within the patient-provider relationship--Day two--Ottawa decision guide exerciseWas this dialogue had by each pair really an example of shared decision making? More like “assisted” or “guided”?The goal here was to add a pause or timeout, and bring awareness to the values articulated by the decider. Coaches (clinicians) can still make recommendations IF they are guided by the patient’s contributions and values. What qualities made a good decision “coach”? (Seeing patterns, reflecting back to the decision maker, inverting certain claims to “look at the flip side”)Nonjudgmental vs. Neutral: Hard for clinicians to truly be “neutral” given their knowledge, but can be nonjudgmentalDesigning beautiful decisions (Facilitators Susan Edgman-Levitan and Peter Coughlan)What are things that we are doing or not doing that get in the way of shared decision making? Competing commitments? Hidden assumptions?What are some of the most promising areas that might be amendable to change?What are we currently doing or not doing that gets in the way?What are some competing commitments?What are some hidden assumptions?Giving docs more to do in their 15 minutesNot involving physicians appropriatelyDisincentivizing high quality conversationsTreating all patients the sameNot doing enough to challenge paternalismFavoring cognitive over emotionalNot providing a cohesive and coherent message about SDMNot teaching self awareness to providersFragmentation of medical careHave good quality evidence, could do more to disseminateMaking people well vs. making moneyQuality of life vs. patient centered outcomeMortality vs. patient centered decision Harm vs. benefitBeing right vs. being collaborativeLegal liability vs. patient autonomy Commitment to patient vs. commitment to professionHealing vs. Curing (Eastern vs. Western medicine)Spend money on your healthcare or spend money on life/alternativesDoctor decides. vs patient decidesQuick action vs. decision thought out overtimeResearch goals vs. patient goalsPatient priority vs. system prioritySoft vs. hard scienceMore data vs. better dataPlease others vs. please yourselfIf I listen, they’ll take even more timeIt works so everyone should do itIf I make this a shared decision, there will be an engagement of roles?I’ll be exhaustedIf we do this right, we’ll see we’ve not scratched the surfaceDeath is a failure, so I am a failureIf people see the imperfections in medicine, they will revoltIf we involve patients, they’ll “ignore us” or ask too muchIf patients choose, they’ll choose the wrong thingIf I don’t advise, patients will be harmedIf we don’t follow the guidelines, I’ll be firedIt’s redundant – no benefitsIf we try, we’ll failIf we built it, they will overwhelm us Themes From Further Brainstorm and Small Group Work:1) How might we reduce the burden on doctors for shared-decision making?One repeated idea was to offload the task and patient education so that it does not need to take place within a 15 minutes visit. Each practice could have a trained health educator/decision coach who: provides patient with info, additional education, and some shared decision making knowledge; follows up with a patient specifically in regards to decisions, helps the patient defines their values pre and post visit; and serves as a liaison to docs. Other members of the care team (MAs, NPs, PAs, staff, etc) could also play a role. Shared Decision Making vid scrips could be made for common decisions as another means of offloading. A concern of this would be a weakening of the doc-patient bond, would need to find a balance. Room/Practice Design improvements could also lessen the burden. Room design could be altered to favor SDM, a separate room could be used for conversations regarding decisions, or at least a certain part of the exam room. 2) How might we help docs move from “being right” to “being collaborative”?Change the way these concepts of “right” or “collaboration” are framed throughout medical education. This includes mentors, preceptors, and others who can set an example of the benefit of collaboration and that the first question doesn’t always need to be “is this right?” Additional emphasis on physician-self care and physicians as humans will shift the mindset. 3) How might we help challenge the assumptions and norms about the doctor-patient relationship?Expand what the relationship includes. Bring in: spiritual discussions, discussions of non-medically related patient goals or interests, patient participation in writing the medical note, or sharing of what goes in it. Create and share “myth busting stores” from providers who feel they do challenge the assumptions to break patients’ assumptions. -- Quotes, Reflections, Ideas --“Resistance to SDM and truth telling comes in many forms – including genetics.? The argument for SDM is essentially an ethical one, not a scientific one.”“Doctors are often wrong in their assumptions about patients' priorities.”“This is an endeavor with very broad resonance and one that can draw from a very broad range of disciplines...poetry, art, dance, neuroscience...all of these can be used in a very powerful way.”“There is a desire for stories sometimes...patients want stories for reassurance...something about story puts something in context. Gets through more than 9 out of 10 people have X outcome.”“By telling stories, are we implicitly suggesting patients should do X option?”“One of the things inhibiting this is lack of physician self care, burnout, and lack of time...it’s not just about patient end points, but even more dire crisis of physician shortage, etc.” “Guidelines are powerful...but one of the externalities is losing patient preferences. They create social norms around what should or shouldn’t be done.”“Need to get past life vs. death comparison, to “life with option A or life with option B.” “Can you re-habilitate a placebo responder to make them less so?...What else are their biogenetic markers for... is the biogenetic marker of patients with extreme health anxiety?” “I'd like to explore a hybrid tool that helps patients and family members anticipate the types of decisions they'll need to make over the course of different disease states. There must be "archetypal" health (care) journeys that could serve as the frames on which to hang good decision-making support resources.” ................
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