JCO's Cancer Stories: The Art of Oncology podcast features stories, dialogue, and personal reflections that explore the experience of living with cancer or caring for people with cancer, hosted by Dr. Lidia Schapira.
Mudras in Medicine: A Role for Dance in Appreciating Non-Verbal Communication in the Clinical Encounter
Listen to ASCO’s Journal of Clinical Oncology essay “Mudras in Medicine: A Role for Dance in Appreciating Non-Verbal Communication in the Clinical Encounter,” by Drs. Maheetha Bharadwaj, Nagda Dipal, et al. Essay authors Dr. Bharadwaj, a urology resident at the University of Washington, and co-author Dr. Dipal, a medical student at Harvard Medical School, are interviewed by host Dr. Lidia Schapira. Drs. Bharadwai and Dipal provide insight on how they use non-verbal communication in the form of Bharatanatyam, an Indian narrative art form, as a way to reflect oncology patient care.
“Mudras in Medicine: A role for dance in appreciating non-verbal communication in the clinical encounter,” by Maheetha Bharadwaj, MD, MS, Mphil; Dipal Nagda, MPH1; and Lipika Goyal, MD, MPhil (10.1200/JCO.22.00657)
Narrator: We present a classical Indian dance piece that depicts a patient and their partner receiving a cancer diagnosis from their oncologist. The primary purpose of this piece
was to provide a vehicle for patients, physicians, and caregivers to process a life-altering cancer diagnosis. The piece was choreographed and performed by two of the authors (M.B. and D..), who are medical students and classically trained Bharatanatyam dancers, and the project was guided under the mentorship of the senior author (L.G.) who is a medical oncologist. Through the process of designing this project during the COVID-19 pandemic, the authors also reflect on the role of visual arts in providing a space for contemplation and in promoting nonverbal communication in the era of virtual medicine.
Mudras, or hand gestures, embody one of ancient India’s most visual forms of storytelling and are the threadwork of the Indian classical dance form of Bharatanatyam. Historically performed as a temple dance, Bharatanatyam serves as a vehicle for communicating and preserving narratives from Hinduism’s greatest epics.1-3 Every mudra is intricately crafted and distinctly designed, with each bend of a finger and curve of the wrist representing an object, an emotion, or a state of being. Mudras are interlaced with rhythmic footwork and facial expressions in Bharatanatyam, producing a language that connects the performer to themselves, to the audience, and to the story being told. The style of Bharatanatyam specifically has been previously adapted for therapeutic relief and healing among survivors of natural disasters and victims of trauma. Although some artists have explored the use of Bharatanatyam to convey medical narratives, none to our knowledge have directly covered the nuances of clinical relationships in the context of a cancer diagnosis.
A few weeks after the onset of the COVID-19 pandemic, we found ourselves in an exchange of mudras over coffee on the patio. As both medical students and trained Bharatanatyam dancers, we were lamenting the difficulties of communicating to patients with masks. “He couldn’t hearme,” one of us expressed. After some pause, the other extended her right hand in
Katakamukham toward her chest, whereas her left hand also in katakamukham drifted toward her ear, together signifying a stethoscope. “Is this how you asked your patient if you could listen to their heart?” she asked. We both smiled. With her hands in place, she leaned her torso to the left and extended both hands in chaturam. She painted a rectangular frame in mid-air, signifying a chest x-ray. In silent melody, we played call and response, gliding our hands across the table and delicately placing our fingers into mudras.
As case counts ticked upward, distressing news filled our personal and professional lives and we both found ourselves turning to mudras to express our states of emotion and responses to the pandemic. It dawned on us that dance may play a critical role in reflecting on and processing difficult medical situations, especially in the isolating environment of the pandemic. We thus embarked on a project to
The Will to Go On: Learning When to Let Go
Listen to ASCO’s Journal of Clinical Oncology essay, “The Will to Go On,” by Dr. Sumit Shah, Clinical Assistant Professor of Medicine and Oncology and Medical Director of Digital Health at Stanford University School of Medicine. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Dr. Shah. Dr. Shah explores a patient’s will to live and recounts witnessing a powerful bond between a patient and her spouse.
Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which offer a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org.
I'm your host, Lidia Shapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford. With me today is Dr. Sumit Shaw, Clinical Assistant Professor of Medicine and Oncology and Medical Director of Digital Health at Stanford University School of Medicine. We'll be discussing his Art of Oncology article, ‘The Will to Go On.’
Full disclosures for our guests will be linked in the transcript and can be found on the article’s publication page.
Sumit, welcome to our podcast!
Sumit Shaw: Thank you, Lidia! It's a pleasure to be here. Thank you so much for having me.
Lidia Schapira: It is our pleasure. So, before we start to discuss ‘The Will to Go On’, I'd love to ask you a general question about what you read and what you're currently reading now, and what you can perhaps recommend to our listeners.
Sumit Shaw: Yeah, absolutely, Lidia. So, when I'm not reading randomized clinical trials in oncology, I try my best to read for enjoyment. I typically right before going to bed. I tend to gravitate towards work outside of medicine. Currently, I'm reading All the Light We Cannot See by Anthony Doerr, which is a World War 2 story told through the eyes of a blind French girl and a German boy in France and how their parallel paths eventually intersect.
Doerr writes so beautifully and uses language to create these very vivid scenes. It's really a remarkable masterpiece that's taken him over 10 years to write. So, it’s quite extraordinary and highly recommended to our listeners and readers.
Lidia Schapira: Thank you! I love that book. I share your enthusiasm. Let's move now to your story, ‘The Will to Go On’. You describe an encounter with patient Diane and her husband during your 2-weeks stint as the attending physician in an academic oncology inpatient service.
So, let's start and unpack that for a moment. How do you envision that role in terms of your connection to patients? I've heard many colleagues who say that it's very difficult because they don't know these patients and they haven't cared for them. How can you introduce some humanism into that role?
Sumit Shaw: Yeah, absolutely, Lydia. So, we have several services that deal with just Oncology at Stanford. My favorite service is the teaching service where we're working with residents and interns and fellows, strictly with patients who have cancer.
It is a very emotionally charging month for our trainees. And a lot of my responsibility, I think, is actually keeping that dynamic and the culture of the team to be as positive as possible.
So, I have certainly a responsibility to my patients, which I think is really important, but really also to the trainees. And so, I think it's incredibly important that we model good behavior.
So, that's what I see as a large part of my job is really having these very difficult conversations with patients for the most part that we've never met because they're often treated by their own primary oncologist who's someone different than I, and oftentimes even more challenging given that they're typically coming in with a disease that we may not be even familiar with, given that we mostly subspecialize at Stanford as well
The Side Effects of Caring: Dealing with Secondary Traumatic Stress in Oncology
Listen to ASCO’s Journal of Clinical Oncology essay “The Side Effects of Caring,” by Dr. Aarti Kamat, a pediatric hematology/ oncology fellow at the University of Michigan. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Dr. Kamat, where they discuss coping with Secondary Traumatic Stress (STS) after Dr. Kamat has a triggering experience with a teenage patient.
The Side Effects of Caring: Dealing with Secondary Traumatic Stress in Oncology
Narrator: The Side Effects of Caring, by Aarti Kamat, MD (10.1200/ JCO.22.00736)
“I don’t want to die in the hospital.” I could hear the young teenager crying in the background as I told her mother on the phone that she should come in to the emergency department. She had recently been diagnosed with a relapse of her leukemia and subsequently developed a systemic fungal infection. She now had a new fever that needed to be evaluated. She had decided that her goal was to pursue all possible treatments and interventions, so although I knew the thought of going to the hospital was distressing to her, I felt that this was the safest course of action and in accordance with her overall goals of care. I gently expressed to both my patient and her mother that I did not think this would be a long admission or result in her death. I could hear the mother reiterating my comment to her daughter who continued to sob and repeat that phrase. “I don’t want to die in the hospital.”
Eventually, my patient calmed down. I convinced her that I had no intention of sending her to the hospital to die, and she was successfully discharged home after a short admission. Despite the objectively positive medical outcome, I would still hear the patient crying in my head at random moments. Whether I was lying in bed with sleep eluding me, walking outside with my dog, or caring for other patients, I kept hearing the phantom voice repeating the phrase, “I don’t want to die in the hospital.” I felt strained and stressed and was sleep-deprived while trying, unsuccessfully, to ignore the crying voice that was plaguing me.
As a pediatric hematology/oncology fellow, I have seen and dealt with my share of emotional situations, and this was not my first or even most difficult encounter. I do not know why this particular patient’s distress triggered such an emotional response within me. I empathized with this ill and terrified teenager and felt the tension between trying to reassure her that she would be okay and advocating for a hospitalization. I know that I delivered on my promise to my patient and her mother and that the admission was short and uneventful. I had not ignored her wishes or her cries for help, and I had confirmed that she wanted to continue with treatment of both her leukemia and fungal disease. However, why did I continue to hear her voice in my head?
This pattern continued for days, even as I tried distracting myself with work, a tactic that usually works for me when dealing with unwanted emotions. Eventually, I realized this strategy was not working, and I knew this could not continue. Although I do not typically feel comfortable sharing my feelings, especially negative emotions, I eventually confided in a trusted mentor who is a pediatric intensive care unit attending with an interest in physician wellness, and I hoped she would be able to lend some much-needed advice. She immediately recognized that I was experiencing secondary traumatic stress (STS) and sent me online resources and podcasts to learn more about what I was going through. She encouraged me to speak with someone I trusted in my program about my experience and so I talked with an attending who was also my mentor. She listened attentively and shared her own similar stories and experiences. Being able to have my feelings validated and acknowledged in this way by people I trusted helped me to feel less hopeless and alone.
STS is being increasingly recognized in health
A Life and Death in Haiku
"A Life and a Death in Haiku," by J. Russell Hoverman: a brother shares haikus and photos dear to his family around his brother's end-of-life care.
A Life and a Death in Haiku, by John John Russell Hoverman, MD, PhD (10.1200/JCO.21.02835)
My brother, Jim, was diagnosed at age 73 years with colon cancer metastatic to the liver, lymph nodes, and lungs. He and his wife were avid hikers and after retirement had hoped to visit as many national parks as possible. Big Bend National Park in Texas, along the Rio Grande River bordering Mexico, at over 800,000 acres, is one of the largest and least-visited parks in the country. The park has vast expanses of desert and high mountain islands, with some peaks over 6,000 feet. We had hoped to have Jim visit us in 2020, but both cancer and COVID-19 interfered until this past spring when we were finally able to arrange a trip to the park. It had been a few years since I had last seen Jim at our most recent family wedding. When he arrived in Austin, he appeared gaunt and frail. He had lost his taste, and many foods burned his mouth. He had lost weight and was weaker. He barely felt his feet. He struggled to just get through the day. Even so, he hiked up to a promontory overlooking the Rio Grande one day and into a canyon the next and seemed to get stronger as the week went on (Figs 1 and 2).
While in Big Bend, we talked about how he wanted to be remembered. Neither of our parents left tangible markers of their deaths. There were no gravesites, only scattered ashes in places without names. We discussed having a marker, a plaque, a touchstone, or maybe a bench at a favorite park, a place that could be visited by family and friends. This loss of continuity is likely a result of our culture—urbanization and the fragmentation of families. This is in contrast to The Day of the Dead (Dia de los Muertos) celebrated in Mexico and much of the American Southwest, where families decorate cemeteries and have annual gatherings to remember deceased relatives and friends. We forget, or perhaps never knew, how important this can be.
As an oncologist, I saw the wide variety of ways in which people died. A few years after I finished training, I joined a practice in a small town in Oregon with a large Mennonite community. One of my first patients was a church member with metastatic ovarian cancer that was no longer responsive to treatment. She required near constant attention for pain control, and the nursing facility associated with the Mennonite Church, primarily staffed by fellow church members, was her best option. My patient knew all her caregivers, and they knew her. It was as if she was receiving terminal care for her cancer by her sisters. This may have been the first time I attended the death of a patient outside of a hospital. Given that experience, I became an ardent supporter of hospice organizations, many of which were just starting. I knew that Jim was not far from the end of his life and that he wanted to be able to make his own choices, even to the point of getting it over with. We both also knew the impact of sudden, unforeseen, untimely deaths in our own family. I had hoped that Jim could be comfortable and able to participate with us until the very end. This most likely meant involving hospice care.
By summer, less than a year after his diagnosis, chemotherapy no longer controlled his disease, and there were no treatment options available. His oncologist offered a menu of possible treatments including radionuclide embolization of two liver lesions and radiation treatment of lung lesions. As Jim’s discomfort was primarily in the region of his largest liver lesion, he and his wife decided to pursue the liver embolization for pain relief, but while recovering from his chemotherapy, Jim lost more weight and became weaker.
At the time of the scheduled procedure, the interventional radiologist discussed his concern that Jim’s
change in status would make
"Good Genes," by Kaitlin Demarest: a resident searches for answers after genetic testing.
Good Genes, by Kaitlin Demarest, MD1 (10.1200/JCO.22.00871)
My mother was diagnosed with breast cancer when I was 5. I accompanied her to a handful of chemotherapy sessions and filled the time with MadLibs and word searches. The drive to the hospital became familiar; the diner where I celebrated my fifth birthday was on the way, as was the dairy bar and the Chi Chi’s that shut down. I grew accustomed to her wearing wigs and remember vividly the time one almost flew off her head on a windy day at Rockefeller Center. I learned that vomit could be green and what a computed tomography (CT) scan was. This is not to say that I knew what was going on or what all of it meant.
When she was first diagnosed, my dad explained that there was something scary growing inside my mom and her doctors needed to take it out. He drew an arrow coming out of a finger instead of breast tissue to help my young mind better grasp the concept. I was not sure why the cancer picked her breast to start growing in but that mattered little to me as my kindergarten logic figured it would be simple enough to take out. However, after “trying to get the cancer out” with surgery and chemo, she only seemed to get sicker. She would spend days on the couch after treatments, nauseous but not wanting the Coke syrup she would give me when I was sick.
Eventually, she returned to work, her new head of hair much curlier than before, and things seemed normal again for a brief time. I can recall multiple times, almost yearly, that I believed she was cancer-free, but then I would overhear her telling someone over the phone that she needed to start treatment again.
I clung to the belief that everything would be okay without a second thought, but then one day the summer after fourth grade, she told me and my brother that she would not be getting better. Soon she was in hospice care, and then she was gone.
Losing her at 10 years old, there was so much I did not understand. I decided I wanted to become a doctor and tried to start my medical education as soon as possible to fill in these gaps. I wrote research papers on cancer topics in middle school, took as many science classes as possible in high school, and majored in molecular biology as an undergrad. I even spent a summer shadowing oncologists, including one of my mom’s. He called me by her name a few times, which mostly warmed my heart that he still thought of her and reminded me that he had known her too. He was very kind, clearly doing the best for his patients. Watching him, I began to appreciate the rocky road of disclosing setbacks and poor prognoses as a provider.
Despite a week of shadowing my mother’s oncologist and countless visits with my aunt and uncle, both doctors, who had helped her navigate the treatment process and even took care of her when she was home on hospice, I refrained from asking about the genetics of my mother’s cancer. Perhaps due to wishful thinking, I was under the impression that my mom had been tested for hereditary breast cancer syndromes while she was alive and that she was negative for BRCA mutations. But finally, at the end of my first year of medical school, over the karaoke music at a bar after my cousin’s college graduation, my aunt told me that she had never been tested; I would need to be tested soon.
I had been scared to receive the results of my genetic testing. I had faced mortality but avoided thinking about my own. I remember my heart pounding as I listened to my genetic counselor, trying to discern any doom or gloom in her tone. After she carefully explained that I carried no mutations known to be associated with cancer, I caught my breath and relief did wash over me. Then it was all over. Years of questioning, asking what if, bargaining, avoiding, wondering, hoping all tied up. “Take care of yourself, Kaitlin,” she said, “Don’t study too har
My Mother's Last Lesson
"My Mother's Last Lesson," by Colt Williams: A resident learns about managing mental illness during cancer treatment.
Narrator: My Mother's Last Lesson, by Colt Williams, MD (10.1200/JCO.21.02382)
In January 2017, my 65-year-old mother was diagnosed with treatable cancer. The problem was that she did not want to live.
Her mental health had declined precipitously after losing my father 8 years before, and her grief proved insurmountable. She had been a functional alcoholic for most of my life, and commonly smoothed over the roughness of a long day with half a bottle of whiskey. Growing up, alcohol had been ubiquitous to the point of banality, yet she was nonetheless able to lead a very successful life. But the silence of my father's absence was deafening, and her few moments of relief were only ever found at the bottom of a bottle. Her life came apart at the seams as she had stopped working, lost contact with most of her friends, and rarely left the house. Then, after years of limitless sorrow, when she was told she had advanced, but treatable squamous cell carcinoma of the tongue, she wanted to allow it to end her life.
Despite a high chance of cure, my mother saw her situation as both cause and justification to end her life. Why pursue a painful and disfiguring treatment to save a life already devoid of light, companionship, or love? She argued that she had already lived a full and rewarding life, and without my father at her side, her existence had become a shell of its former self. Her advanced directive had stated “Do Not Resuscitate” as far back as my father's initial entanglement with cancer, nearly 10 years before. Long before any of these immediate issues arose, she had made it clear that, “When it's my time, it's my time.”
Her treatment team was clear that if she received the standard treatments, her probability of survival was excellent, but that the journey would be grueling. Removing a third of her tongue would likely leave her with permanent speaking and swallowing difficulties. Radiation to her mouth and throat would cause severe inflammation and pain. A temporary feeding tube would pump tasteless, khaki colored goo directly into her stomach to bypass her swollen mouth and throat. She was assured that she would be supported by an interdisciplinary team and given any, and all, measures to ensure her comfort.
She asked what would happen if she chose not to pursue treatment. Her oncologist shifted on his stool, his arms crossing, and his speech slowing. I projected my own thoughts and discomfort onto his change of posture, “Why are you asking him that? It's treatable! Tell her, make her fight!” Her oncologist warned us that her cancer had the potential to slowly rob her of her ability to speak, eat, swallow, and eventually breathe. Even with treatment, there was still a chance she could end up in the same situation if the cancer did not respond or if it came back later. All I could think was “at least we would have tried.”
My mother found the idea of death comforting as she would be released from physical and emotional pain. After our initial visit with her oncologist, however, she became terrified of the symptoms she might experience as she was dying. I too was afraid of what would come. Nightmares of her choking while I watched on powerlessly were frequent over the next few nights. Still, she was not convinced that treatment was what she wanted. I pushed her, begged her to be treated. After a long, emotional, and arduous weighing of her options, I shared with my mother's doctors a collective sigh of relief when she reluctantly agreed to treatment.
Two weeks before her surgery, I went to visit after my medical school classes. We had talked on the phone the night before, and our conversation had left me worried. My father's death was a common topic for us, but her perseveration on the irreparable void in her soul was alarming. I found her stumbli