Preface

I REMEMBER SITTING in a large auditorium for an introductory biology course as a Stanford undergraduate in 1979 on the day when an esteemed member of the faculty named Paul Berg was scheduled to give the lecture. A black wooden captain’s chair emblazoned with the Stanford logo awaited his arrival at center stage. Just as class was about to begin, I felt the unholy sensation of the earth moving in waves beneath me as a large chandelier swayed menacingly overhead. Not knowing what was happening, I nervously looked at my friend Bill in the seat next to me. Bill was raised in California, so he just shrugged and matter-of-factly said, “Earthquake,” as I silently prayed for the chandelier above us to remain attached to the ceiling. A few moments later, Dr. Berg sat in that elegant chair as he described his lab group’s success at cloning a gene for the first time, a discovery for which he shared the Nobel Prize in Chemistry in 1980. That minor earthquake paled in comparison to Dr. Berg’s earth-shattering discovery, which ushered in the era of molecular genetics and created a tectonic shift in medical science. I quickly became enthralled by stories of scientific discovery and vowed to join the molecular genetic revolution. I spent 20 hours per week in a research lab during my final 2 years of college and experienced the thrill of discovery for the first time. My career trajectory was set: I would be a physician-scientist.

A few years later, I started medical school at Baylor College of Medicine in Houston, Texas. One day during our first year, I chatted with a few friends during a 10-minute break between lectures as we stood beneath a larger-than-life portrait of Michael E. DeBakey, MD, in the lobby of the building bearing his name. DeBakey was the great cardiovascular surgeon and medical statesman who was a major driving force behind the creation and growth of the school. As we chatted, one of our classmates, whose father was a cancer researcher at a neighboring institution, breathlessly ran up to us and declared, “Myfather just cured cancer.” She had just learned that her father had contributed to the discovery of oncogenes, a monumental discovery that elucidated cancer’s molecular underpinnings but hardly represented the cure that she imagined. Advances in cancer diagnosis and treatment have mostly been incremental rather than monumental over the ensuing 40 years. Regardless, the discovery of oncogenes further stirred my passion for a career in science, and finding a cure to cancer was the ultimate scientific prize.

After graduating from Baylor College of Medicine, I moved to the University of Texas Southwestern Medical School and Parkland Hospital for internal medicine residency. I was drawn to Parkland because of its reputation as a rigorous program where medical luminaries like Don Seldin seamlessly merged their basic research with patient care. At Southwestern, science was king. One day post-call as a second-year resident, my new attending for the month, Dr. Michael Brown, arrived near the nurses’ station at 10 am to begin morning rounds. Dr. Brown and Dr. Joe Goldstein had just received the Nobel Prize in Physiology or Medicine two years before (1985) for their discoveries concerning the regulation of cholesterol metabolism. Science and medicine were so inextricably linked at Southwestern that even Nobel laureates took turns attending on the wards for at least a few weeks every year. One of the first patients the intern presented that morning was a man with a history of heavy alcohol consumption with cirrhosis who was admitted overnight with a GI bleed. At first glance, the man was just another GI bleeder with esophageal varices due to portal hypertension, so I expected Dr. Brown to wave off detailed discussion and quickly proceed to the next patient. Instead, he thought about the patient for a few seconds and asked, “Did Mr. Smith have Keiser Fleisher rings?” I stood in stunned silence as I reached back into the far recesses of my memory and recalled that Keiser Fleisher rings are the ophthalmic manifestation of Wilson’s disease, a rare, inherited derangement of copper metabolism that causes cirrhosis. Dr. Brown was a brilliant scientist and an equally brilliant clinician who reaffirmed the glory of biomedical knowledge. Dr. Brown was the physician-scientist superstar I wanted to become one day.

While the allure of basic biomedical research energized me during the formative years of my career, the human side of medicine also began to whisper in my ear, almost as if humanity was competing with science for my love and affection. I remember discussing the case of an elderly woman with progressive refractory squamous cell cancer of the nasopharynx on rounds at Parkland one day. My attending that month was Leonard Madison, an endocrinologist who had a heart of gold and cared deeply about his mentees and even more deeply about his patients. My third-year resident was already accepted into one of the country’s most prestigious oncology fellowship programs, so he enthusiastically listed the many chemotherapy regimens the woman had received and plans for additional treatment. As the entire team followed Dr. Madison into the woman’s room, he walked directly to her bedside, reached for her hand, and leaned over, ignoring the overwhelming odor that arose from the gaping hole in the center of her face created by the cancer. He then gently stroked her hand and said, “Mrs. S, I’m Dr. Madison, and I am here with the medical team to see how you are. Is there anything we can do for you today?” The woman just lay there inanimately. After waiting a few seconds, he asked, “Ma’am, are you comfortable now?” She remained silent and still. He then asked, “Is there anyone you want to be here with you today? Any family?” When she again failed to respond, he patted her hand one final time and said, “Dear, we are here to help you anyway possible. Please let us know if you need anything.” Once we were back in the hallway out of earshot, Dr. Madison turned to my resident and quietly said, “Please, just keep her comfortable.” Our unofficial motto during residency at Parkland was “No one dies on my watch,” but Dr. Madison urged us that day to focus on this woman’s humanity and dignity rather than on chasing unrealistic dreams of cure. At that time, in 1986, I had never heard the word “palliative,” but Dr. Madison illustrated its meaning and opened my eyes to the power of caring and humanism.

I continued to follow the siren call of science by completing a molecular genetics fellowship between Internal Medicine residency at Southwestern and Oncology fellowship at Johns Hopkins Oncology Center. When I arrived at Johns Hopkins in 1991, the oncology center was separated physically, administratively, and financially from the main hospital. As a result, we oncologists had no access to a dedicated intensive care unit. When one of our hospitalized patients became critically ill, as they often did, we rolled a ventilator into the room and functioned as de facto intensivists. This arrangement was not problematic for the fellows, since we had all just finished 3 years of internal medicine residency and were comfortable with routine aspects of critical care. We also knew when to call our critical care colleagues for help.

For a while, I just did what I was trained to do: address laboratory abnormalities, adjust ventilator settings, review imaging studies, and prescribe supportive therapy in hopes that my patients would recover. However, over time, I began to see these critically ill patients as much greater than the sum of their many biomedical abnormalities. Even though nearly all of them were unconscious on ventilators, I saw them as people rather than just as patients, and I got to know them through the many pictures on their nightstands and windowsills and through their families’ stories. I began to wonder whether our highly technical and reductionist approach was accomplishing anything meaningful. I anecdotally observed that essentially all patients with advanced cancer who required intensive care, especially those who required mechanical ventilation, died during the hospitalization or shortly after. I began to view death in an ICU and particularly on a ventilator as undignified and inhumane, at least for patients whose death seemed inevitable. I also perceived the experience to be traumatic for family members and for the healthcare team who were repeatedly exposed to it. I began to ask myself why our default approach was to offer all heroic measures rather than to allow natural death, even for patients whose long-term survival seemed impossible. As my interest in this topic grew, I began a retrospective study to determine the outcome of mechanical ventilation for patients with hematological malignancies and published the resulting manuscript with the help of collaborators. That was my “Sunday project,” the one I worked on nights and weekends when I wasn’t working in the research lab during the latter years of my oncology fellowship at Hopkins. Not surprisingly, we found that patients with refractory malignancy who needed mechanical ventilation had dismal outcomes, consistent with my clinical experience. While I waged the War on Cancer, the sound of humanity whispered ever more loudly in my ear.

A few years later when I took my first faculty position at Baylor College of Medicine, my alma mater, I focused primarily on basic and translational research and ran my own federally funded lab for several years. Despite spending about 80% of my time in the lab, I attended on the oncology consult service a few months per year and on the internal medicine service one month per year just as faculty members at Parkland had. I distinctly remember an encounter on rounds that forever changed the way I approach conversations with patients. The medical oncology fellow and I were asked to see a middle-aged man with a history of colon cancer that was resected several months before and who was admitted for jaundice. CT revealed recurrent cancer in the form of several liver metastases, so we had the unenviable task of discussing CT results and recommending a course of treatment. The fellow, who was very bright and personable, led the conversation. It sounded something like this:

“Mr. Smith, we are from the oncology service, and we are here to discuss your CT results and treatment options. Your CT showed innumerable lesions in both lobes of your liver that represent recurrent cancer, which explains your jaundice. Your hyperbilirubinemia precludes treatment with the standard chemotherapy regimen, so we will have to adapt your treatment accordingly. I am sorry to say your cancer is not curable.” Then without pausing to let this profound news sink in, he attempted to reassure the man by saying, “but it is treatable.”

He then proceeded in similar fashion, using jargon to discuss imaging studies, bloodwork, and treatment options, including possible side effects of treatment. He finally handed the man a chemotherapy consent form to sign. He never asked the patient what he understood about his illness or whether he wanted a family member or someone else in his close inner circle to be part of the conversation, let alone allowed him to ask questions or express his fears, priorities, or hopes. As I watched the encounter, I realized it was going terribly wrong despite the young doctor’s good intentions and pleasant demeanor. That moment was pivotal for me, the point when I decided to find out what it is about our conversations with patients that can be therapeutic, and conversely, what can be harmful. By that point in my career, the sounds of humanity that were once whispers in my ear had grown to exhortations.

I then gradually phased out my lab research program and began to study the patient-clinician communication literature as voraciously as I had studied the basic science literature. I learned that most patients want realistic prognostic information to make well-informed decisions about their care, regardless of how upsetting that information is. Sensitive conversations should ideally occur incrementally over multiple meetings, preferably early in the disease trajectory and often in the presence of others in the patient’s close inner circle. Many studies have shown that the most effective clinical conversations allow space for patients to pose technical questions, describe their priorities, and express negative emotions, including fear, sadness, grief, and helplessness. I now know that when clinicians respond to strong negative emotions with technical information or false reassurance rather than with empathy, they speak a language that is entirely unintelligible to the patient. Empathy is the universal language of emotion that allows us to connect meaningfully with our most vulnerable patients.

A short time later, I met Walter Baile, a psychiatrist and healthcare communication expert at MD Anderson Cancer Center, where I was recruited to join the faculty in General Oncology in 2008. Immediately after I arrived at MD Anderson, Walter suggested I participate in Oncotalk Teach, an NIHfunded program to teach oncology faculty how best to teach oncology fellows communication skills. Oncotalk Teach consisted of two 3-day retreats separated by 6 months during which faculty worked in small groups facilitated by one of the principal investigators, including Tony Back, Bob Arnold, Walter Baile, Kelly Fryer-Edwards, and James Tulsky. Oncotalk Teach was transformative for me. I considered myself a good communicator before attending, but I gained enormous insight regarding my communication and teaching skills from thoughtful feedback I received from my peers and small group facilitator, James Tulsky, a world-class clinician educator, researcher, and administrator. I now know that the best educators are much like coaches who begin by building a solid conceptual framework with learners, then model key skills in the right measure, create a safe environment in which to practice skills, observe learners in action, ask learners to reflect on the experience, offer objective feedback tailored specifically to the learner’s needs, and establish future goals. This coaching paradigm was unlike any I had experienced before as a learner or as a teacher but has guided me since.

The Department of General Oncology at MD Anderson Cancer Center proved to be fertile ground for my professional development, because it gave me the opportunity to work in a wide variety of clinical settings where I honed my own communication skills and my ability to teach them. I was medical director of the International Cancer Assessment Center where I cared for patients from many different cultures, spent about 20% of my time practicing integrative medicine, and devoted another 20% attending on the Center for Targeted Therapy (phase I) hospital service, where I discussed goals of care, code status, and end-of-life issues with nearly every patient. I also supervised medical oncology fellows one day per week in their continuity clinics, where I applied the Oncotalk Teach model.

Being at MD Anderson in the same academic building as Walter Baile was also a godsend. Walter and I collaborated on many educational initiatives at MD Anderson and elsewhere, the most notable of which were “Clinical Leadership Rounds” and “Difficult Conversations,” recurring series of communication skills workshops for palliative medicine fellows and medical oncology fellows, respectively. We published a description of “Difficult Conversations” in Academic Medicine in 2014 and the process of integrating narrative into the curriculum in the Journal of Cancer Education in 2018. After a few years in general oncology, my career had evolved so completely from physician-scientist and cancer researcher to clinician-educator and humanist that I moved full time to the Department of Palliative, Rehabilitation, and Integrative Medicine at MD Anderson in 2012 and have remained there since.

A patient whom I saw in the International Cancer Assessment Center changed the course of my career dramatically. He was a middle-aged man from Kuwait with stage III rectal cancer whom I evaluated and then referred to Dr. Michael Overman, the gastrointestinal medical oncologist who coordinated his multidisciplinary care and administered his chemotherapy. The standard of care for this patient included preoperative radiation combined with chemotherapy, surgery, and postoperative combination chemotherapy for several months, a complex regimen that any patient would find difficult to understand. The great challenge for this man was that he was deaf, mute, and did not communicate with standard sign language, which made traditional informed consent impossible. Fortunately, he was highly intelligent and personable, so we were able to work closely with the patient’s family, a language assistant, and a medical ethicist to develop a sound game plan that yielded an excellent outcome. The situation was so memorable for both of us that Dr. Overman suggested we collaborate to write a reflective essay describing it, which we published in the Journal of Clinical Oncology “Art of Oncology” section in 2011. Until then, neither of us had written a reflective piece, but after receiving positive feedback from many colleagues who read the essay, I quickly saw the potential of such stories to serve as enduring educational resources to teach communication skills, particularly empathy. I then published a few more such essays in the Annals of Internal Medicine, Journal of Clinical Oncology, and other journals and attended a multiday workshop at Columbia University Department of Narrative Medicine with Rita Charon and her outstanding group to learn more about the field. Since then, I have published several other reflective essays in the medical literature, often in collaboration with colleagues, and have integrated narrative into many of my communication skills seminars and workshops. One of the basic premises of this book is that stories engage learners and complement conceptual frameworks perfectly to help clinicians build communication skills.

Over the past several years while teaching communication skills, I have noticed that many clinicians respond to emotionally charged clinical conversations with biomedical, factual information or false reassurance rather than with empathy. The communication style displayed by the medical oncology fellow I observed on rounds at Baylor was hardly the exception. The literature confirms that clinicians, particularly physicians, miss many empathic opportunities, even though strong emotions permeate almost every conversation they have with patients. Clinicians understand on a conceptual level that empathy entails “standing in the other person’s shoes” or imagining what another person is thinking or feeling, yet they still find it difficult to occupy the emotional space with patients. There are several possible explanations for this apparent lack of empathy. One is that many clinicians have been taught to remain emotionally distant from patients to maintain composure and objectivity. I remember a small group session I facilitated in our “Difficult Conversations” series a few years ago that included an oncology fellow with an impressive research pedigree. He was a few years older than the other fellows, having earned a PhD and done a research postdoc before returning to clinical training. He seemed stoic and reserved during our large group sessions. However, when he assumed the role of physician caring for a young woman dying of breast cancer in our small group role play, he suddenly became overwhelmed with emotion and started crying. I learned from that experience that some clinicians who appear to be the most detached and scientific on the surface are actually the most sensitive and caring inside. I also learned to be empathic rather than judgmental toward colleagues who struggle to realistically discuss prognosis and goals of care with their patients. Discussing code status and transitioning to a purely palliative strategy is heart-wrenching work for anyone.

Clinicians may also miss many empathic opportunities because they lack a sufficient repertoire of empathic phrases with which to dive deeply into emotional conversations. If they say anything empathic, they often run out of steam after saying a few stock phrases, like “I cannot imagine how difficult this must for you” or any statement beginning with “I wish.” The NURSE acronym, a conceptual framework published by Pollak and colleagues in the Journal of Clinical Oncology in 2007, can be used as a teaching tool to address this challenge. The N in NURSE stands for naming the emotion, the U for understanding or validating the emotion, R for respect, S for support, and E for exploring emotions further to encourage more expression. The investigators characterized empathic responses in these categories as continuer statements that allow patients to continue expressing emotions and found that when oncologists respond with them, patients have less anxiety and depression and report greater satisfaction and adherence to therapy. I find that respectful empathic statements, symbolized by the R in NURSE, are particularly powerful for helping me connect with patients. Examples of such statements include “I respect your fighting spirit,” “I respect your strong religious faith,” and “I respect the love between you and your family.” This book contains many more such examples. These are healing words as long as they are heartfelt. The challenge for many clinicians is to incorporate these and many more empathic expressions into their practice to occupy the emotional space with the patient for as long as the patient will let them. Empathic expression should be more than just “one and done.”

I had an epiphany a couple of years ago that stimulated me to write this book. I was attending in the palliative care unit at MD Anderson, and as usual our team included two palliative medicine fellows and a medical oncology fellow who was completing his required palliative elective in our department, in addition to a pharmacist, counselor, chaplain, social worker, and nursing team. Alex Andreev, the medical oncology fellow, approached me one day after rounds and said, in essence, “I understand what empathy is, and I am impressed by how empathy helps you and others in your department connect with your patients, but I often cannot think of the right words to say when patients and families become emotional. Will you please give me a list of empathic phrases that I can memorize and use in my encounters?” When Dr. Andreev asked me for a list of phrases to memorize, I realized that such a list could be a precious resource for many clinicians, whose training involves memorizing huge quantities of factual information. Dr. Andreev is a physician-scientist who had the insight to know that clinicians can use their strong powers of memorization to strengthen their humanistic skills. He and I published a reflective essay in the Journal of Clinical Oncology “Art of Oncology” section in 2020 that describes our work together that month. The essay concludes as follows:

These observations, along with some profound patient encounters, led me to see that we have the potential to offer our patients a gift that is arguably as powerful and meaningful as targeted therapy or immunotherapy—the gift of humanity. If I can undergo this transformation, anyone can.

A short time later, Shine Chang PhD and Carrie Cameron PhD asked me to serve as an advisor for Laura Meyer, a college graduate who was accepted into their NCI-funded Cancer Prevention Research Training Program (CPRTP) Summer Internship. Laura has since completed her masters in social work and recently embarked on doctoral studies. Our goal for the summer was to develop a list of conversational challenges that often arise in the care of seriously ill patients and potential empathic responses to each challenge, as requested by Dr. Andreev a few months before. Laura and I first reviewed existing books and journal articles pertaining to empathy to determine that nothing like our proposed practical guide to empathic responding was already available. I then generated a list of scenarios and proposed empathic responses from my own practice as an oncologist and palliative doctor. We then built upon that foundation by anonymously surveying 44 palliative clinicians, including physician and non-physician providers at MD Anderson Cancer Center. We asked them to give examples of the conversations they find most challenging in their practice and then merged their responses with the original list as well as examples from the literature to create a more comprehensive list. We then assembled a focus group of five physicians, two advanced care providers, and one psychologist from the Department of Palliative Medicine at MD Anderson Cancer Center to get feedback about the format, themes, scenarios, and suggested empathic responses in the draft guide. Scenarios fell into several thematic categories, including denial, prognosis, existential concerns, difficult family dynamics, impact of illness on family, and nonmedical opiate use. We then formatted the list as a prototype for a clinician’s pocket guide and approached Karen Edmonson, who at the time was a content editor for McGraw Hill, to gauge interest in the project. Karen and her colleagues were enthusiastic, but they requested that we write a full book rather than just a pocket guide. Other editors at McGraw Hill subsequently worked with us on this project.

My next challenge was to decide how to convert a very practical list of empathic phrases for clinicians into a full manuscript. I knew I did not want this book to be another philosophical, theoretical, or technical look at clinical empathy, but rather an engaging, real-life resource for busy clinicians. I decided that the same narrative approach that I had used to write reflective pieces for the Journal of Clinical Oncology and other journals was best suited to the task. I also decided that I wanted this book to reflect the viewpoints of a culturally diverse group of clinicians from a variety of medical disciplines rather than just my viewpoints or the views of palliative clinicians. The authors include five medical oncologists, six palliative physicians, a surgical oncologist, a chaplain, a social worker, an infectious disease physician, a pediatrician, a clinical psychologist, and an ophthalmologist. Many of the first authors were born and raised in other countries, including Canada, Germany, Ghana, Guatemala, Nigeria, Pakistan, the Philippines, and Taiwan. The authors represent nearly an equal mix of men and women who are at various stages of career development. Each chapter is anchored by a true but anonymized story that describes a challenging clinical scenario from the first author’s clinical practice and relevant personal details about each author that helped shape their approach to empathic practice. This book ends with the concise pocket guide to empathic expression, the seed from which this book grew. I hope you will find this collection of real stories inspirational and enlightening.