Historically and in the present day, medical education has relied on clinical cases of patients to teach new generations of physicians. These cases are a form of storytelling. We teach students to start with the “Chief Complaint” and then add details to that patient’s story with the “History of Present Illness,” “Past Medical and Surgical History” and “Social History.” These sections of a medical note exist to capture the subjective essence of the sequence of symptoms and events that led the patient to seek help from their doctor as interpreted by the history-taker. The remainder of the note consists of objective findings from the physical exam and tests and then all of the information is synthesized into an assessment and plan by the clinician. The process is formal and sterile in its approach, as it was designed to efficiently capture and categorize information for the purpose of making a diagnosis and treatment strategy. It is related to but different than a true pathography. In particular, due to a long history of discrimination in medicine, details about race and ethnicity are no longer included or emphasized in the process.Footnote 1 Some recent efforts seek to fill the gaps in deep patient narratives such as the “My Life, My Story” (MLMS) program at the Veteran’s Affairs Hospitals, which creates space for veterans to tell their stories and include them in their medical records.Footnote 2
This article provides a narrative review of the inspiration, design and implementation of a Stanford Medical School course called “From Diagnosis to Dialog: A Doctor’s Real-Time Battle with Cancer.” This project also speaks to the concerns of the Cancer’s Dirty Margins Special Issue by examining how a physician-patient’s first-person narrative interrupts the conventional hierarchy of medical knowledge and foregrounds the lived expertise of a minoritized cancer patient within medical education.
As a physician and now a patient with Stage 4 lung cancer which has spread to my bones and brain, I am acutely aware of the need for space and understanding of pathographies for patients, clinicians and students.Footnote 3 After six weeks of cough and failing multiple treatments for allergies, asthmas and reflux, a chest x-ray revealed a large, white area in my chest and a subsequent CT Scan was highly suspicious for an unusual infection or cancer. I hoped beyond hope that I had a strange infection rather than cancer. A bronchoscopy and biopsy were performed which revealed, after three of the longest days of my life, metastatic adenocarcinoma of the lung.
Almost six years prior, I cofounded the Center for Asian Health Research and Education (CARE) at Stanford after one of my patients had an adverse reaction to a gout medication that can happen to people of East Asian descent.Footnote 4 I was not aware of this risk. Rather than blame me, the patient encouraged me to educate physicians and patients about the issue. I already knew many diseases that disproportionately impact Asians—hepatitis B, nasopharyngeal cancer, gastric cancer and normal-weight diabetes, to name a few. I did not know until I helped start the Center that “Lung Cancer in Never Smokers” (LCINS) is more common in Asian women and that Asians have higher rates of a certain tumor mutation.Footnote 5 We prioritized supporting research and education in LCINS and then, ironically, I was diagnosed with lung cancer as a never-smoker with the same tumor mutation that most Asians get.
Within a month of my Stage 4 EGFR lung cancer diagnosis, I decided to design and offer a Stanford Medical School Special Topics course (MED 275) for medical students and undergraduates centered around my case called “From Diagnosis to Dialog: A Doctor’s Real-Time Battle with Cancer.”Footnote 6 My goals were twofold: First, I wanted to use this opportunity to tell my story first-hand to future doctors and second, I wanted to encourage students to enter a specialty or research area involving cancer. In a qualitative study, a group of researchers in the Boston Veteran’s Affairs system implemented the MLMS program and evaluated the impact of the program on patient centered care (PCC) on the education of clinical trainees. The study revealed that the program improved “trainees’ ability to understand the patient as a ‘whole person’ along with other PCC competencies such as showing empathy, really listening, building knowledge of values and goals, and building relationships. In addition, trainees perceived the activity enhanced patient care and was a positive contrast to usual care.”Footnote 7 I hoped that my own class inspired by my own case and with a significant emphasis on the patient experience would have a similar impact.Footnote 8 The course not only examines epidemiological patterns but also restores narrative presence to Asian patients whose experiences with lung cancer—particularly never-smokers—have often been statistically visible yet culturally underrepresented.Footnote 9
MED 272 consists of 10 lectures encompassing a wide range of topics related to lung cancer. Every session started with my own reflection on my own journey and experiences with lung cancer—of the moment feeling and stories and those relevant to the topic of the day. Then, I invited the guest speaker of the session to give a talk on their area of expertise followed by a discussion with the students, the speaker and me. All of these classes anchored, not only on my personal story, but that of the Asian diaspora population affected by lung cancer.
MED 272 weekly topics were as follows:
Week 1: Introduction—Diagnosis and Screening
Week 2: Being Mortal: Having Difficult Conversations
Week 3: Access, Affordability and Patient-Centered Values of Cancer Care
Week 4: Caregiving and Ethics
Week 5: Spirituality and Cancer—Goals of Care
Week 6: Epidemiology and Cultural Considerations
Week 7: Nutrition and Cancer
Week 8: Cancer Stories and Mental Health
Week 9: Cancer Treatment
Week 10: The Future of Cancer Care
1. Example: Introduction—Diagnosis and Screening
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• Moderators: Paul Ford and Natalie Lui.
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• Description: Introduction to the course structure and objectives. Dr. Lin will share his personal journey of receiving a lung cancer diagnosis and the initial emotional, physical and professional impact. A discussion will also follow on the efficacy, accessibility and limitations of various screening tools for lung cancer, and how to talk to patients about screening. Insights into how early detection can impact prognosis and treatment options.
In our Diagnosis class, I shared the challenges and turmoil going through the stages of grief rapidly for weeks after my diagnosis. We were able to punctuate my experience with perspectives of my own primary care doctor and long-time colleague, Dr. Paul Ford. These two points of view enabled us to contrast a physician narrative (the chief complaint, history of present illness…) with that of my own patient narrative which brought out elements of my life story including a story that explains why I became a doctor. Years ago, one of my patients was an older Asian man. He had chronic kidney disease and did not want to go on dialysis. But, when the time came, his family wasn’t ready to let him go so he decided to go on dialysis. Unfortunately, he had a lot of complications—hospitalizations and infections. After a family meeting, he decided to stop dialysis and he died within a few days. A week later, I received an unexpected letter from him. He thanked me for taking care of him as I would take care of my own father. I was so touched that he would think of me and write to me in this last week of his life. This action speaks of the kind of person he was but also of how important human connection is in medicine. His pathography intersected with my own story at the time as a physician and now as a patient from the Asian community facing my own mortality.
2. Example: Epidemiology and Cultural Considerations
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• Moderator: Jeffrey Velotta
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• Description: Exploration of the connection between lung cancer screening and epidemiology, focusing on non-smoker cases. Analysis of risk factors, genetic predispositions and environmental influences. Discussion on cultural considerations in cancer care, including how cultural beliefs and practices influence patient experiences and treatment outcomes.
During our class on the Epidemiology of LCINS, unexpectedly, our guest speaker, Dr. Jeffrey Velotta, brought recordings from two of his patients who were also Asian physicians with lung cancer. Epidemiology is all about looking at populations of people with disease. Asian women are twice as likely as non-Hispanic white women to have lung cancer as a never-smoker. The incidence of lung cancer in Asian males who have never smoked is increasing as the rates of smoking are declining.Footnote 10 With these statistics, Dr. Velotta played video of two of his patients to connect faces to anonymous numbers. I saw myself reflected in their faces and I heard myself resonating with their voices. One study showed that a racial, ethnic and language concordant model of patient navigation for cancer patients could improve trust and empower patients.Footnote 11 Limited studies exist in Asian patient groups but the lack of Asian Cancer survivor stories is documented.Footnote 12 My experience has highlighted how hearing from other patients in my community serves to support acceptance of my own cancer diagnosis.
Language is an important part of a person’s pathography. Not just the language they use in their own narrative expression but the literal language they grew up speaking, learning and use for communication. I grew up speaking a mix of Taiwanese and English with my parents. That is part of my own story. I do not know if there is a word corresponding to the English word “depression” in Taiwanese. In our session on Access, when I asked the students all the way that I had advantages in getting excellent care (such as health literacy, insurance, transportation, flexible work, caregiving support and so on), they guessed almost everything except language. Perhaps my number one advantage in getting the care I need for my cancer is that I speak English fluently in the United States. Lack of language concordance presents obstacles to the mechanics of care and to the comprehension of all the dimensions of terminal illness. Most of all, the lack of mutual language understanding blocks doctor–patient relationship which elevates health care beyond the algorithmic.
3. Example: Spirituality and Cancer—Goals of Care
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• Panel: Rev. Miyaji (Buddhism), Taqwa Surapati (Islam), and Paramesh Gopi (Hinduism)
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• Description: Discussion on the role of spirituality and religion in coping with a cancer diagnosis. Exploration of spiritual care services, chaplaincy and the integration of spiritual practices in medical care. Setting and discussing goals of care with patients and their families, with personal reflections from Dr. Lin on finding meaning and support through faith.
Our Spiritual Care class served to further underscore how the cultural context of Asian communities and other groups (key parts of many Asian people’s lives) are missing from the Western medical care model. Religious beliefs are a key part of patients’ life stories, but medicine has become more secularized over the past century in general and minimal training regarding religion or spiritual care exists in medical education. We invited practitioners from the four major religions in the world—Christianity, Islam, Buddhism and Hinduism to speak. In the United States, knowledge of Christianity is widespread, and most medical schools report offering spirituality and health training.Footnote 13 However, little published data reports how much training is available for specific popular religions of Asia. Chaplaincy services are under-supported in the United States with no Medicare or other insurance reimbursement. I did not grow up with a particular organized religion, having been exposed to a mix of Christianity, Buddhism and Confucianism, but, especially after having cancer, I recognize the importance of spiritual care and recognize the appeal and practices of Hinduism and Buddhism. I find great comfort when strangers and friends alike offer to pray for me, chant with me, and light a candle with me in mind.
Creating MED 275 allowed me to use my story as a tool to educate a future generation of doctors from my perspective as a patient and a physician. The medical school curriculum is packed full of biochemistry, pathophysiology and clinical science. Students get experience with episodic care—hearing snippets of patient stories when they are in the clinic or over a few days in the hospital. We, instructors, try to provide a little continuity but this can be difficult with so many things to learn. My colleague, Dr. Erik Schillinger, created a class at Stanford called “Walk with Me” to provide a more authentic longitudinal exposure that engages students with patients, caregivers, and families. The student’s monthly reflections revolved around: “(1) themes of patient identity and experience with illness, (2) patient barriers to health care access, (3) patient expectations of an ideal provider and health care system, and (4) a wider range of patient diversity topics such as LGBTQ+, disability, and cultural diversity.”Footnote 14 Our class was partly inspired in philosophy by “Walk with Me,” and we covered similar themes without consciously planning for it.
My experience as both a clinician and a patient highlights how certain cancer narratives remain underrepresented within medical training, particularly those emerging from Asian communities and other minoritized populations, whose experiences often sit at the margins of biomedical discourse. MED 275 (From Diagnosis to Dialogue: A Doctor’s Real-Time Battle with Cancer) was recorded and offered for free on YouTube as a Continuing Medical Education course.Footnote 15 We received messages of thanks from three groups. First, we heard from patients with lung cancer looking for information. Second, we heard from caregivers trying to understand what their loved ones were going through or went through. Third, members of the Asian community sent notes of appreciation for advancing the cause of improving health among Asians. I am grateful that sharing my lung cancer story via the class and other venues seems to have helped a broad range of people and hope that it will encourage others to share their stories as well.
Author contribution
Conceptualization: B.L.
Conflict of interest
The author declares no competing interest.
Open access
