The Power of Story--When We Truly Listen

From the December 9, 2022 Genetic Counseling Issue of the Transformational Times

The Power of Story--When We Truly Listen 

 By Jenny Geurts, MS 

 

Jenny Geurts, who is the inaugural program director of the Master of Science in Genetic Counseling (MSGC) training program at MCW, reflects on her community engagement experiences and the impact volunteer work has on learners.  

This year, our genetic counseling program had the pleasure of engaging with the Sisters Network SE WI Chapter which is doing amazing work in the Black/African American community to increase access to resources and information, advocate for change, and provide supportive sisterhood.  While the invitation was for us to provide information about genetics to their group of cancer survivors and thrivers, I found myself on the receiving end of the knowledge….   

So many of our community members reported stories of never being told about genetic counseling for hereditary cancer prevention and early detection.  And worse, several were told they couldn’t have genetic testing, even when they were asking for it, never being referred to genetic counseling to assess their risk.  What use is all our advances in genetic technology, when it is being kept from those in our community who need it the most?   

The persisting health disparities in hereditary cancer faced by the Black/African-American population is the topic of a recent review article by Ambreen Khan, et al published in the Oncologist.   

Our community members have so much to teach us, if only we are willing to listen.  

The topic of my presentation at the 2022 Wisconsin Cancer Summit this year “Genetic Risk and Family History: How Sharing Stories Can Save Lives”, where it was heartwarming to see many members of the Sisters Network in person.  The Summit theme this year was “The Power of Story,” and brought together patients, advocates, care providers, public health workers, scientists, administrators and more. I can attest that the mission of the Summit was met: Together, we learned how storytelling can be used to improve cancer health outcomes, empower patients and providers, and help us connect, transform, learn, and heal. 

Sherri’s Story 

Due to the generous spirit of one our clinic patients, I was able to tell Sherri's story at this year’s Summit.  

A story where listening meant life or death….   

For years her doctors didn’t listen, which resulted in Sherri being faced with death.  

“...my father he was only 26 when he was diagnosed, his mother, brother, sister and my cousin, they all had it young…” 

 “I know this is not my normal — waking up tired, all day tired,” 

“…no, it’s not just about me getting older, it’s more than that…” 

The power of family history for cancer prevention was lost on Sherri, she would become a statistic in the widening health disparities seen in genetics and cancer care. 

However, because of her resolve, determination, and faith, she persisted…. until finally someone did listen.   

And this time listening resulted in the power of additional life to live, importantly a ~quality~ of life. 

Sherri graciously allows us to amplify her voice, how her life was saved when someone listened, because of genetic testing and immunotherapy.   

If your curiosity is peaked and you’d like to learn more, I’d encourage you to check out the Summit Recap to access recorded presentations, view slide content and learn more about the Cancer Stories Performance, which is a powerful stage production from the Wisconsin Story Project that honors the personal stories of people affected by cancer.  The end result is profound, candid, and deeply human. 

Narrative Reflection Exercises  

We ended the two-day Summit event with a narrative medicine activity, led by Dr. Toby Campbell from the University of Wisconsin/Madison, where we attempted to capture the feelings about our experiences during the Summit with a six-word narrative.  I’d like to share my reflection with the Transformational Times readers: 

“Witnessed stories heal them….and me?” 

This experience allowed me to deepen the impact of the Summit experience and forge the patient stories into my consciousness, helping me make meaning of the toll cancer takes on so many families. I hope that the Transformational Times readers will consider the situations where their patients have been generous with them, in the stories they shared, and trust they instilled.  If only we are compassionate and humble enough to truly listen. 

As part of our Genetic Counseling Seminar course in the MSGC program, learners participate in community engagement volunteering to promote a deeper understanding of the patient experience.  Having just learned about another narrative exercise (the 55-word essay) at the Summit, I thought asking the students to try this activity might also help them further process their experiences in the community.  In this exercise the writer must choose exactly 55 words for their narrative, resulting in the need to be extremely intentional about their word choice. The power of the 55-word essay was not only impactful for them, but also for me, as it was a whole new way for me to have a transcendent vicarious experience through reading their reflections.  Several of my learners wrote 55 word reflections after participation in volunteer community events, and are highlighted within the Poetry Corner of this Transformational Times issue. 

Creating a MSGC Mission Statement 

When our program development started in early 2020, we were asked to create a mission statement, it was something we were obligated to do and at first felt very “corporate.”  I certainly couldn’t recall the mission statement of the school I attended, and I didn’t understand the relevance of it, other than “checking the box” of requirements.  But when we brought the team together to start working on it, that is when it really came alive to me. 

The several months of developing the mission statement were painstaking. However, the considerations we took, and process we went through to land on these twenty-one intentional words, was so rewarding to us.  We are delighted with our mission statement as we feel it truly represents what we are here to do.   

Words matter.   

This narrative exercise of creating a mission statement also really helped me understand the power of our words.  

We hope this mission statement resonates with you as well, as either a provider, an educator, a learner, and/or a member of the community.  

Acknowledgements 

Special shout out to the dedicated work of Dr. Sandra Underwood, Debra Nevels, Raul Romo, Sharon Brown, Stephanie Newsome, Gigi Sanchez, Dr. Melinda Stolley, Dr. Charles Rogers, and others who cultivate relationships to ensure the success of community outreach activities. 

Jenny Geurts is an Assistant Professor in the Institute of Health & Equity and serves as the Associate Director of Genetic Counseling in the Genomic Science and Precision Medicine Center at MCW. She has been in practice for over fifteen years and has specialized in a variety of genetic conditions including oncology, cardiology, neurology, gastroenterology, and endocrinology.  She most recently has provided clinical care with an emphasis on inherited cancer conditions at Froedtert and the Medical College of Wisconsin Clinical Cancer Center. She is board certified by the American Board of Genetic Counseling. 

“Proceduralists” Do Care!

From the 6/4/2021 newsletter

Perspective/Opinion

“Proceduralists” Do Care!

Harvey Woehlck, MD - Professor, Department of Anesthesiology

Dr. Woehlck reminds us that doctors whose main task is to perform procedures can break from their molds and have fulfilling roles as caring physicians, as well …

What does a caring academic proceduralist look like in today’s modern medical environment?  

We can imagine that the modern proceduralist descended from the surgeon of ancient times.  In the second century, the expression of “laudable pus” was a common procedure which, of course, required incision.  [Excuse the digression, but laudable pus was staph-related and often survivable with incision and drainage as the only treatment, as opposed to what we now call necrotizing fasciitis, which was uniformly fatal at the time.]  Amputations were described a century earlier, where lack of anesthetics required the proceduralist to be as fast as possible. 

in that era, caring may not have been a meaningful virtue; completing the amputation – and allowing the patient to survive – was meaningful.  Unfortunately, this may have selected for what we could today call a psychopathic trait in proceduralists of the preanesthetic era.  Just how could you have empathy when the goal was to amputate as quickly as possible?  

Nitrous oxide was synthesized in 1772, but was mostly used as a party curiosity, not for procedural pain relief.  Anesthetics like ether gradually increased in use from the 1840s to the present day, but “modern” pain relief is something we would recognize only in the twentieth century.  Prior to the era of anesthetics, lay literature, newspaper accounts, and battlefront stories from numerous wars and conflicts described eager but cruel doctors sliding down the slippery slope of brutality themselves, amputating, when possible, on the most minor of injuries as if to draw the biggest possible crowd as part of a spectacle. 

Flash forward to the present.  With a history like that, what does a caring academic proceduralist look like in today’s modern medical environment?  

High-tech procedural platforms require numerous people for support.  Housekeeping, instrument processing, lab services, anesthesia services, proceduralists and assistants, nurses, technicians, and more are part of the team.  Let’s not kid ourselves. All of these people and resources need to work together. They are expensive to operate and maintain.  We need to be mindful of RVUs created, payer mix, and the effect on dollars generated, turnaround times, expense units utilized (which includes choice of drugs and equipment). You wind up with a dizzying array of competing factors.  Add to that teaching of students, residents, fellows, and it’s amazing that we’re not reduced to robotic, unemotional, protocolized efficient machines in an environment devoid of empathy focusing on getting patients in and out faster and cheaper. Without efficiency, modern infrastructure could not exist.

And then, there’s caring and the patient’s best interests.  

Many people equate a caring physician with a good bedside manner. While that is important, some might argue that caring is secondary if the patient is asleep or sedated for the most critical part of one’s procedural interaction. As an anesthesiologist, the life-or-death part of most interactions with a patient occur when the patient is unaware. Stolid efficiency might be supportive of the infrastructure that allows us to provide an optimal level of care by today’s standards, but it doesn’t end there.  

The epitome of proceduralism transcends efficiency and a low complication rate. But it differs for patients receiving their definitive procedure versus those at the beginning of their diagnostic journey.  

What about the lost patient, trying to find the mountain pass to Erewhon?  I’d argue many nontraditional opportunities exist for caring, some of which could be hard to explain.  And notice that I used the word “argue” in there.  People who know me personally know that I am frequently contrary and argue a lot.  I pride myself on being one of those “competing factors.”  

Let me exemplify:

As a proceduralist – an anesthesiologist – I recently had a patient with a mundane problem having a common procedure, and I was part of the anesthesia team.  This is what Kikuko Tsumura might call an “easy job” for me.  Or what I imagine the late economic anthropologist David Graeber might have berated as a job where any interchangeable person with minimal competence sufficed.  

But I noticed the patient had multiple co-morbidities that didn’t substantially alter anesthetic care. Those anomalies happened to fit a pattern for a diagnosis that was neither listed nor treated by any of the dozen qualified healthcare providers he had seen in the prior six months. In addition to performing the dull, boring anesthetic, I took it upon myself to arrange some screening tests for this potential undiagnosed problem that would tie together the co-morbidities into a single diagnosis and change treatment 180 degrees.  

The test came back positive for what the textbooks call a “rare disease.”  After a referral and more procedures, the patient thanked me for figuring out, and finally solving, the underlying issue that caused years of suffering and, untreated, would have taken decades off of his life.

Why didn’t others find the problem?  Did we unknowingly allow ourselves to wear the mask of tunnel vision and be compartmentalized into that mechanical state of efficiency?  Was it production pressure?  Protocols?  A nebulous bureaucratic expectation that we maintain our defined roles?  

Many opportunities existed to look the other way and perform only up to minimum acceptable standards.  Breaking from this mold is what I call caring.  I am sure nobody would have noticed the difference had I only done the minimum.  For some, caring could mean providing emotional comfort, but for others, it may mean taking the extra time to solve a problem, even if it opens the uncomfortable door of crossing boundaries of specialties or roles, or advocating for the rare and unpopular.  

Tsumura might summarize this approach by arguing that caring encompasses the dignity of work.  Or becoming more invested and engaged as the job becomes increasingly routine or trivial, extracting from context nuances that defy description.

For me, in my procedural world of the unaware, caring transcends the routine and encompasses the intangible.

For further reading:

Kikuko Tsumura. There’s No Such Thing as an Easy Job. Bloomsburg Publishing, 2020.   ISBN: 9781526622242 To find the book, click this link.

David Graeber. Bullshit Jobs: A Theory. Simon & Schuster. 2018. ISBN: 9781501143342 To find the book, click this link. 

Harvey Woehlck, MD is a Professor of in the Department of Anesthesiology at MCW. In addition to multiple educational, clinical, and administrative responsibilities, Dr. Woehlck is an accomplished concert pianist. 

Stand Up for What You Believe In

From the 5/28/2021 - Memorial Day - newsletter

Perspective/Opinion

Stand Up for What You Believe In

Chad Kessler, MD

Dr. Kessler is the National Program Director, Emergency Medicine, Department of Veterans Affairs.  He is also a professor at Duke University and a staff physician at the Durham VAMC. He is the epitome of charismatic and inspiring VA leadership.  Here is an essay that he generously let us share from one of his twice weekly newsletters ...

So, I was sweating through my Thomas Pink button down shirt this late Friday afternoon and eon or two ago.  I was still in the hospital at 6:00 that day, stewing in this tiny, windowless room…not only because of the jungle like temperature, but the unfamiliar and frankly unnerving environment. As a young chief, this was all very new to me, and having to sit with these top leaders was terrifying, and only intensified by the news I had to share. We were short on coverage, I felt that we were teetering on unsafe care in our Emergency Department, and I needed to advocate for staff in a miserable budget year.  That word…I didn’t realize how much power was in that single word.  I literally remember the second when the Boss stopped the meeting in mid-sentence, and said, “Kessler, did you say we have an ‘unsafe’ environment?” Like I had uttered a profanity in Temple or put ketchup on a hot dog.  I looked around, realized everyone was staring at me, and said prophetically, in my best Homer Simpson voice, “uh…yes.”  I’ll be honest, I don’t remember much after that, except feeling like I said or did something wrong (even though I knew I wasn’t wrong), that people were mad at me, and that I truly may get fired…but I got home, gave my wife a hug, the kiddos jumped into my arms, grabbed myself a two liter chai and thought in my head, I did the right thing, right?     

 

Here’s the moral of my tale…Stand up for what you believe in, even if you’re standing alone! It may be pressure from your boss to not open your mouth, it may be your team telling you everything is fine or it may be that little voice (you know, the easier wrong voice) whispering to you how much you really like your job...and don’t really feel like updating your CV.  But whatever it is, make sure you’re doing what is right in your mind.  It’s your name on that memo, on that patient chart, it’s your voice they will hear, and it’s your conscious you will live with for years to come.  So, make sure you do the right thing, take the harder right, and stand up for what you believe in…even if you’re standing alone.

 

Just for closure sake, we did end up getting that additional coverage for the ED, and I did not get fired.  In fact, I specifically remember one of the senior leaders coming up to me later that week, telling me how brave that was…and was indeed the right thing for patient care. If only he was standing with me during that meeting…but nonetheless, alone or together, we need to stand strong for what we believe in.

Dr. Kessler curates an amazing series called “C20” or Covid in 20, which currently has over 100 informative episodes on a variety of topics from “COVID and the law (Episode 63) to COVID and delirium (Episode 28).  Some are VA specific, but many are not.  Click here to check them out. 

Holding a Virtual Storytelling Event: MCW’s MedMoth

From the 4/16/2021 newsletter

Holding a Virtual Storytelling Event: MCW’s MedMoth

Scott Lamm - MCW-Milwaukee Class of 2022

Mr. Lamm is one of the student leaders of MCW’s MedMoth, a live storytelling event inspired by The Moth and Milwaukee’s Ex Fabula. He reviews the most recent gathering and looks toward the future … 

One year ago, I had no idea how we could make MCW’s MedMoth storytelling event virtual. While yes, storytelling can be accomplished on various platforms, I struggled to grasp how we could take an intimate night of face-to-face interaction and connection and build the same atmosphere from the comfort of one’s home. It was a task, though, that the MedMoth team was prepared to undertake to continue the program.

In the runup to the main event, we held two virtual workshops facilitated by staff at Ex Fabula, a Milwaukee-based storytelling community. Working with other participants, our storytellers developed their narratives and honed their presentation skills. 

What we witnessed on April 8, 2021 was a celebration of stories connecting faculty, residents, staff, and students alike in ways we couldn’t have even imagined. We had eight wonderful storytellers sharing accounts ranging from how they bonded with the supply robots at Children’s to responding to a horrific trauma event as an EMT. Each storyteller brought their own experience and vulnerability on journeys that were both familiar and astonishing. 

About sixty people were in attendance from all aspects of healthcare and all points of the training spectrum. It was absolutely incredible to see a virtual group so engaged in everyone’s stories and, hopefully, they left wanting more. As we believe that there is intrinsic value to these types of narrative opportunities, we gathered data from both the participants and the audience on their experiences. 

As we continue to build the MedMoth program, we hope we can inspire more storytellers and listeners as each of us have a story to tell. It’s just a matter of when will you share it.

Please feel free to follow MCW MedMoth on Instagram (@mcwmedmoth) for updates on future events. We will be back in the Fall with more workshops and storytelling events. If you have any questions or would like to join our team, please feel free to reach out to me (Scott Lamm) at slamm@mcw.edu.

MedMoth is graciously sponsored by the Kern Institute. We would like to thank the entire institute for its continued support.

Scott Lamm is a third-year medical student at MCW-Milwaukee. 

Changing the Curriculum: How Adding a Narrative Assignment Increased Empathy and Connection with People Unlike Ourselves

From the 4/9/2021 newsletter

Perspective/Opinion

Changing the Curriculum: How Adding a Narrative Assignment Increased Empathy and Connection with People Unlike Ourselves

James Warpinski, MD – MCW-Green Bay

Dr. Warpinski’s M2 course brings medical students into contact with people and groups with whom they might never have before interacted. By adding a narrative assignment, students found new and remarkable connections …

I am the course director for an M2 Course on Continuous Professional Development at MCW-Green Bay. Through personal experience, I have found narrative medicine very helpful in improving my understanding of the individual patients. Writing sharpened my observation skills and forced me to pay closer attention to the nuances of the patient’s words, dress, and actions. 

Our course addresses the knowledge, skills, and attitudes needed to improve the health care experience of older adults, persons with disabilities, and those from non-majority groups. In earlier years, these topics were covered with lectures and slide presentations provided by a professional representative of these groups. This approach strengthened the students’ knowledge but didn’t necessarily impact their attitudes or skills. 

To counteract this, the curriculum needed to change. Preparation for the session covered much of the session’s information and challenged the students to consider potential biases and attitudes. The professional speaker’s remarks were shortened and individual members of the patient groups were recruited. The sessions became highly interactive with guests and small groups of students having face to face conversations. The guests shared deeply personal details of their lived experiences with providers and the health care system. Students were then required to submit a short reflective writing piece based on one of the course sessions.

This kind of writing comes more naturally to some students than others, but each essay offers the opportunity for the student to describe learning something new about themselves or their patients. Some students described being moved to tears by the experience of meeting these individuals face to face or how the experience challenged long-held beliefs about these patient groups. Several wrote about how these patients helped them better understand their own family members with disabilities. A few students wrote poems capturing some detail of the session while others reflected on the nature of the physician-patient relationship. 

Regardless of the specific form of their reflection, the students are able to see and hear their patients in deeper ways, and learn about themselves in the process.

James R Warpinski, MD is an Adjunct Assistant Professor and CPD course director at MCW-Green Bay. 

“Yes, and…”: How Improv Techniques Enhance Medical Training

From the 4/9/2021 newsletter

Medical Humanities Perspective/Opinion

“Yes, and…”: How Improv Techniques Enhance Medical Training

Erica Chou, MD and Sara Lauck, MD

Drs. Chou and Lauck discuss the parallels between interpersonal interactions in theater improv and at the bedside. Improv offers a way to hone critical clinical skills …

Attunement, affirmation, and advancement. These are the core skills of improv, and of all interpersonal interactions. Attunement means to be present and focused, deeply listening. Affirmation is to acknowledge the other person's truth and to find common ground, even at times of disagreement. Advancement uses that common ground to move the conversation and interaction forward. In short, these skills embody the “yes, and” tenant of improv. 

These same skills are essential in the practice of medicine. Good communication with patients, families and healthcare team members requires active listening and adaptability. A quality of empathy is recognizing others’ perspectives as their truths. Listening, acknowledging, and responding productively are the foundation of creating psychological safety on a team. The relevancy and applicability of improv in healthcare is where medical improv comes into play. 

Here’s an example of Medical Improv

Medical improv is the adaptation of theater improv skills and principles to the healthcare setting. It is a type of experiential learning, where learners participate in improv exercises and then debrief afterwards. While the exercises themselves teach learners to be spontaneous and think on their feet, it is the unpacking of their actions, behaviors and feelings during the exercises that allows learners to reflect and make connections to medicine and other aspects of their lives. 

An example is an exercise called Word at a Time Story. In this exercise five to six people stand in a line. They are given the title of a story and asked to make up a story together where each person says one word at a time. This exercise is incredibly challenging. The natural tendency is for everyone to think of their own story and to try to plan what word they are going to say when it is their turn. But then the sentences that are created make no sense grammatically and the story does not come together. To be successful with this exercise, participants need to focus, be present and listen intently; and if they do these things, then they can trust that when it is their turn to speak, they will say a word that aligns and advances the story.  

How does this relate to medicine?

These same skills can be applied when obtaining a patient history. Rather than approaching the patient encounter with a list of pre-prepared questions to ask, students learn with medical improv to listen and respond to their patients, and to embrace the path the conversation takes.

After attending the 5th International Medical Improv Train-the-Trainer Workshop in 2018, we developed a two hour-long medical improv workshop based on Katie Watson’s Playing Doctor course at Northwestern University Feinberg School of Medicine.2 Our workshop includes the above exercise, as well as several other improv exercises that explore the concept of “yes, and,” emotions, leading/following, and status. We have presented our workshop for a variety of different audiences, including high school, undergraduate and medical students, residents, faculty, staff and interprofessional teams. 

Please contact Erica Chou echou@mcw.edu or Sara Lauck slauck@mcw.edu if you are interested in having a medical improv workshop for your learners, section or team. 

For more reading

Belinda Fu (2019) Common Ground: Frameworks for Teaching Improvisational Ability in Medical Education, Teaching and Learning in Medicine, 31:3, 342- 355, DOI: 10.1080/10401334.2018.1537880 

Katie Watson (2011) Perspective: Serious Play: Teaching Medical Skills with Improvisational Theater Techniques, Academic Medicine, 86:10, 1260-1265, DOI: 10.1097/ACM.0b013e31822cf858

Erica Chou, MD is an Assistant Professor of Pediatrics (Hospital Medicine) at MCW. She is a member of the Curriculum Pillar of the Robert D. and Patricia E. Kern Institute for the Transformation of Medical Education. 

Sara Lauck, MD is an Assistant Professor of Pediatrics (Hospital Medicine) at MCW and the Pediatrics Clerkship Director.