The value of an unhurried conversation

by Victor Montori, MD (Wiser Choices Program)

As we reflect on the present and future of healthcare, it is key to consider the value of an unhurried conversation.

At the Mayo Center for Innovation 2009 Symposium, Maggie Breslin made a compelling case to focus on conversations as a key strategy to improve healthcare.  Watch her inspiring and inspired proposition here.

Becca Camp, a visiting student at our KER UNIT, recently wrote a blog post of an experience at Mayo Clinic she was privileged to witness.  In it she noted the relationship between an unhurried conversation and the opportunity to contextualize care to a patient’s specific situation, a requirement of both evidence-based practice and patient-centered care.  A recent rigorous and careful study documented how failure to pay attention to context can lead to poor quality care.

Don Berwick in his address to the Yale Medical School 2010 Graduating Address, he noted the critical importance of patient-centered care and the role that clinicians can play in treating patients with respect and humanity, urging them to

…recover, embrace, and treasure the memory of your shared, frail humanity – of the dignity in each and every soul.

Meantime, we seek to measure value in healthcare and we find it difficult to articulate how to capture the value of the unhurried conversation.  How do we know that our systems promote these conversations?  Should we protect these, and if so how, when economic considerations (payment, demand, access) threaten them?

The unhurried conversation, a key component of the Mayo Model of Care, should be the focus of intense investigation.  How much time is necessary to achieve this experience?  How should care professionals be trained to participate?  How do new requirements for healthcare provision affect these?

I believe it will be up to patients — thru a strong patient movement — to make sure the unhurried conversation remains a possibility as healthcare changes.  And it will be up to us to provide the resources and knowhow to realize that possibility.

Dancing with Care

There was an interesting exchange recently on Facebook group Shared @ EACH – Shared Decision Making Network in response to  Greater Choice and Control- a response to UK Department of Health consultation by Theo Raynor, Professor of Pharmacy Practice at the University of Leeds and Director of Luto Research Ltd, which provides patient information testing services. In the exchange,  E-Patient Dave deBronkart and Dr. Victor Montori discuss “the art of dancing with care.”

Diary post of a visiting researcher

Dear Diary,

Sat May 7th. All set, ready to go! Excited to visit the KER Unit for a few weeks and to join them at the SAEM SDM Consensus Conference in New Orleans. This will be my first visit to the Mayo Clinic, and one I’ve been looking forward to since I became a research collaborator last winter.

Wed May 11th. We just returned from the Consensus Conference. It was inspiring and motivating to see so many participants (most of them clinicians) trying to find ways to make SDM work in practice and to improve care for their patients. Victor presented his keynote lecture ‘What is SDM? (and what it is not)’ and we worked on writing a paper on this keynote for Academic Emergency Medicine.

Thu May 12th. First day at the KER Unit. What a day! I attended a course on EBM, discussed grants and ongoing research projects with Juan Pablo, Mike and Aaron, and had a braindump on SDM (old and new thinking) with Victor and Ian. Note to self: replace ‘yes, but…’ by ‘yes, and…’.

Sun May 15th. Friday, I finished the AEM paper with Ana and Erik. Gaby presented her study on the effects of social networks in management of diabetes on Saturday. In the evening, we got together for drinks and laughs (with bubbles, cheese and chocolates) at Annie’s place. Today, I’m going out to meet Nilay for brunch.

Mon May 16th. Started with the weekly huddle this morning: what a great way to get an overview of what each member of the team is working on right now. I worked on our Choice Awareness project* and attended the Patient Advisory Group to discuss Juan Pablo’s project on SDM in Thyroid cancer treatment. Amazing how this group of patients manages to come together every month (for over 10 years!), to improve the work of the researchers and to make sure that researchers don’t lose the connection with ‘the real world’.

Tue May 17th. Trying to see whether the Choice Awareness project can take us to the moon! Maybe. Also met with Kasey to learn more about the ICAN tool.

Wed May 18th. No trip to the moon (yet), we will have to find other methods to make this journey. I worked with Victor to build my Apollo II. Juan Pablo and Ian joined, which led to a conversational dance of thoughts, (crazy) ideas, hypotheses, and approaches. Best day ever! In spite of, as well as because of the challenges we faced this morning. In the afternoon we came together with a group of clinicians and researchers interested in SDM in diagnostics to see how to take this field forward.

Fri May 20th. Yesterday, I discussed the progress and challenges around the Choice Awareness project in the SDM journal club. We went for dinner and drinks afterwards to continue our discussion on SDM old and new thinking. I continued with the project today, focusing on capturing the differences in SDM between a mechanical approach and a human connection. It takes two to tango, but we have no way to measure that dance. Speaking of dancing (and of mechanical approach versus human connection), in the evening we had a birthday party at the local salsa place.

May 22nd. BBQ with the KER Unit team at Aaron’s place yesterday and smores at the river with Gaby, Mike and the Montori family today.

May 25th. Worked on the Choice Awareness project for the past few days. Met with the department of Neurology yesterday to discuss possible collaboration. Kasey received good news (scholarship), as did Laura (residency). Maggie arrived, and Ana said goodbye. Sara had her last day before her maternity leave. I worked on Aaron’s manuscript and discussed a second paper for AEM on SDM/informed consent with Rachel.

May 26th. Last day at the KER Unit. Overwhelmed by how much I learned about the team, the work, the collaborations. And, to be honest: about myself and about my work as a researcher. I’m impressed how a team that advocates kind and careful care manages to practice what they preach and welcome guests in such a warm and friendly way. After saying goodbye to Kirsten, this kind and careful visit ended with a road trip with Ben to the airport. What an experience.

With love, Marleen

  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 7th-10th, 2016). Oral presentation on September 10th: ‘Choice Awareness as Pre-requisite for Shared Decision Making in Videos of Clinical Encounters’.

On Cars and Caring: How metaphors can be (un)helpful

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

  1. 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.
  2. https://www.theatlantic.com/health/archive/2014/08/the-trouble-with-medicines-metaphors/374982/. (2014) Accessed April 2017.
  3. Kunneman M, Montori VM, Castaneda-Guarderas A, Hess E. What is shared decision making? (and what it is not). Acad Emerg Med. 2016;23(12):1320-1324.
  4. Hitchens, C. Mortality. (2012) Atlantic Books Ltd.
  5. Leppin, AL. https://minimallydisruptivemedicine.org/2013/08/23/minimally-disruptive-medicine-at-your-service/ (2013) Accessed March 2017.

A case of the best, worst, and most likely

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

  1. 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.