Radcliffe Exploratory Seminar: Shared Decision Making

Recap and Reflections

--Day One--

Background of integrating shared decision making

  • The main goal of the HDSC is to get the right treatment to the right patient at the right time, every time
  • A shared sentiment is that time is a big barrier to SDM
  • Often 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 SDM

Taking on some myths: We already do shared decision making and The doctor knows what’s best for me

  • Often times it seems like the provider made the decision and projected it onto the patient
  • What is documented in the chart can have no resemblance to the conversation
  • There can be this use of an apologetic tone when patient’s counter the provider’s recommendation
  • In medicine it becomes so easy to shame people
  • A pleasant conversation is not indicative of collaboration, shared treatment plans, eliciting goals and preferences

What does it mean to make a good decision? Does that differ in medicine from other areas? Panel discussion

a)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 relayed

b)The 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 manner
  • Splitting 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 reflect
  • Pause 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 experience
  • The 3 “I”s to think about: the I (narrator), the I (person in the story) and the I (the reader) – all these perspectives combine
  • The 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 understand
  • How 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

i)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 options
  • When 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 true
  • More 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 intervention
  • Elements 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 response
  • COMT breaks down dopamine (can have high or low activity version of COMP)
  • Genetic variants between val/val and met/met
  • Val/val: have 3 times less dopamine; because it gets broken down so quickly - characteristically need information
  • Met/Met: dopamine lasts longer - characteristically need to be touched
  • Placebome: 15 genes – what genes modify your placebo response
  • Knowing this information, a good physician does not treat all their patients the same way
  • How 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 styles

Taking on myths: Shared decision makingonly 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 about
  • Tool that highlighted clearly what patients are confused about or wanted to discuss further

(b) How context, systems, and individuals may affect participation (AfsanBhadelia)

  • When considering systems reform often the focus is not on quality on a larger scale
  • Difficult 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 focused
  • Making 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 life
  • How 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 communication / Ideas/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 space
  • Catch 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 place
  • How do you create more intensity within the patient-provider relationship

--Day two--

Ottawa decision guide exercise

  • Was 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 nonjudgmental

Designing beautiful decisions (Facilitators Susan Edgman-Levitan and Peter Coughlan)

a)What are things that we are doing or not doing that get in the way of shared decision making? Competing commitments? Hidden assumptions?

b)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 minutes
  • Not involving physicians appropriately
  • Disincentivizing high quality conversations
  • Treating all patients the same
  • Not doing enough to challenge paternalism
  • Favoring cognitive over emotional
  • Not providing a cohesive and coherent message about SDM
  • Not teaching self awareness to providers
  • Fragmentation of medical care
  • Have good quality evidence, could do more to disseminate
/
  • Making people well vs. making money
  • Quality of life vs. patient centered outcome
  • Mortality vs. patient centered decision
  • Harm vs. benefit
  • Being right vs. being collaborative
  • Legal liability vs. patient autonomy
  • Commitment to patient vs. commitment to profession
  • Healing vs. Curing (Eastern vs. Western medicine)
  • Spend money on your healthcare or spend money on life/alternatives
  • Doctor decides. vs patient decides
  • Quick action vs. decision thought out overtime
  • Research goals vs. patient goals
  • Patient priority vs. system priority
  • Soft vs. hard science
  • More data vs. better data
  • Please others vs. please yourself
/
  • If I listen, they’ll take even more time
  • It works so everyone should do it
  • If I make this a shared decision, there will be an engagement of roles?
  • I’ll be exhausted
  • If we do this right, we’ll see we’ve not scratched the surface
  • Death is a failure, so I am a failure
  • If people see the imperfections in medicine, they will revolt
  • If we involve patients, they’ll “ignore us” or ask too much
  • If patients choose, they’ll choose the wrong thing
  • If I don’t advise, patients will be harmed
  • If we don’t follow the guidelines, I’ll be fired
  • It’s redundant – no benefits
  • If we try, we’ll fail
  • If 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 vidscripscould 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?

Expandwhat 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.”