Foreword

FROM A VERY early age, I learned about caring for patients through my dad, who was a cardiologist in Rosario, Argentina. On one hand, he was a lover of science and evidence-based medicine, but on the other hand he placed great importance on the many stories his patients shared about their travels, family issues, and what they did for fun. By hearing my dad recall these stories, I started learning that there was more to medicine than diseases. We would talk over dinner every day and over lunch on many days, and I could tell that he was more motivated to connect with his patients on a human level than he was to dwell on details of medical science, something that he was almost embarrassed to admit. He would visit the homes of his patients who were too ill to travel to his office, which was rarely done at that time. Sometimes he let me tag along, and I would wait in the car as he saw patients. We usually went to about three homes, after which he would take me on an excursion to do something fun that I wanted to do. Through this process, I began to understand that there were two sides to medicine: the evidence-based scientific side, which is what I later learned in medical school and residency, and the human side. Even as a young boy, I began to see the human impact of disease and the healing potential of doctors.

During medical school and residency, I did not pay a lot of attention to humanism, because I was too absorbed by the science of medicine. However, when I became an oncology fellow in Buenos Aires, my views changed. I had a sentinel case of a woman with ovarian cancer who had received treatment in her community and came to see us for more treatment options. She was frail and cachectic but nonetheless was always very warm and engaging, hugging us enthusiastically at the beginning and end of each visit. She never displayed even a hint of self-pity and instead seemed more nurturing toward us than we were toward her. The things I remember most about my meetings with her are my feelings of incompetence and guilt. We had so little to offer at that time to treat her cancer, which was the only way I could think of to relieve her suffering. I started to question how we were learning oncology and wondered why we didn’t know how to better relieve suffering in ways other than shrinking tumors. One day she told us, “I have three school-aged children at home, and I want to see each of them get married and have children of their own. I can’t die before I hold my grandchildren in my arms.” I froze in silence, at a complete loss for words. I think I eventually mumbled something about trying more chemotherapy if she got stronger and gained weight.

During my oncology fellowship in Argentina, I started challenging a lot of my own beliefs and knowledge, and I started reading and studying about what we could do to help people who are suffering. It took me that long to really understand that there is a person behind every story who should be the focus of our attention, not just the tumor. I also learned very rapidly that nobody around me knew anything about the human aspects of medicine. Most of my mentors and peers at that time felt almost contemptuous of doctors who focused on the illness experience rather than the disease. They felt that discussion of such matters was unnecessary on rounds and had no bearing on clinical decision making. All the discussion on rounds was very formal and focused on scientific evidence. In fact, most people considered discussions about personhood as almost unprofessional.

I started wondering how I could learn more about the human side of things, and I was disappointed to find few options. I knew I would have to proactively seek opportunities to learn more. One day while seeing patients, I found out that a professor from Italy whom I had never heard of, Vittorio Ventafridda, was scheduled to give a lecture about palliative issues in Buenos Aires. Ventafridda was an anesthesiologist who was doing all kinds of nerve blocks for pain control. Then one day he had this revelation that treating pain purely as an electrical problem of nerve conduction made no sense, since there was a suffering person behind the pain. So he stopped doing procedures and focused more on treating people. Ventafridda’s seminar was scheduled to be given at a large academic medical center in Buenos Aires. I desperately wanted to hear him speak, so I asked another oncology fellow in the program to cover my patients to allow me to take the bus downtown to the lecture hall. This was during winter, so it was freezing in this huge auditorium at the medical school. The venue could easily have accommodated several hundred people, but when I arrived, there were literally only four people at the venue. Even the people who had invited him did not care to show up. Ventafridda had traveled all the way from Milan to give a groundbreaking lecture, and there were only five people in this huge auditorium. I hadn’t even paid registration to the Congress; I just snuck in. Despite the tiny audience, Ventafridda gave the most extraordinary and passionate talk, speaking the entire hour while barely pausing for breath. He discussed many things that finally resonated with me concerning the importance of personhood management. More importantly, he impressed upon me the power that one passionate person can have on an impressionable young mind. One never knows who might attend a seminar and really take advantage. There may be 1,000 people present or only five, but it only takes one energized person to carry the torch and move the field forward to inspire countless others.

And so, as an oncologist in training, I was initially touched by a loving patient with ovarian cancer who traveled all the way to Buenos Aires from her small town in the interior of Argentina with bright eyes and a heart full of hope. Then I was energized by a passionate physician from Italy who was forging new paths in pain management by focusing on people rather than on their diseases. I then decided that’s what I wanted to do with my career.

It wasn’t easy to embark on a career focused on personhood, because there were no role models, mentors, or programs in Argentina or anywhere else in South America. I had to apply for faculty positions in many places around the world, 52 institutions to be exact. After much rejection, I was finally contacted by Neil MacDonald, who was the director of the cancer center in Edmonton, Canada. Without knowing me, he replied to me in a letter to say he didn’t do the kind of care I was proposing, but that he wanted to implement it in his cancer center. He suggested I work there for a year, open a clinic, and see what we could do. And that’s exactly what happened. Neil and I learned together. I learned from him the importance of having somebody who has your back. It would have been impossible for me to accomplish anything meaningful if he had not protected me and created a nurturing environment. He was a true visionary who decided to take a chance. So, if a department head in medical oncology or radiation oncology wanted something from me, Neil told them, “Don’t bother Eduardo. Just send him some patients and leave him alone to do his work.” Then, Neil would take the flak for me and discuss whatever the colleague wanted, perhaps a new radiation therapy machine or a new chemotherapy program. Neil insulated me from all the noise and distraction and allowed me to focus on what I thought was very useful for our patients. We had to be very resourceful to build our program in palliative medicine, for instance by converting a decrepit old hospital ward into a clinic. I thought that would be the whole trajectory of my career and that I would grow old in Edmonton. Then, after working in Edmonton for 15 years, I received a call out of the blue from John Mendelson who told me, “I want to bring what you are doing in Edmonton to MD Anderson Cancer Center in Houston.” At that time in the late 1990s, we still did not have a palliative specialty in the United States and there was no such thing as palliative fellowship. Basically, we did not have any of the things we have now other than a clear idea of where we wanted to go, which was to focus on patient-centered care. We wanted to emphasize the suffering experience rather than the disease.

I still often reminisce about the strong influence my dad had on me: the way I spoke with him at dinner time, and the way he told me stories of his patients and the things that mattered most to them. Although he wanted me to focus on medical science, I could see that he was more interested in humanity, which made an indelible impression on me. When he died rather suddenly at the age of 79, he was still seeing a few patients, so I was asked to clear out his office of diplomas, books, and other keepsakes. As I did, I discovered a most extraordinary thing that I did not know about him when he was alive. Over his many years of practice, he accumulated countless gifts brought by grateful patients, some of which were beautiful or even valuable, and others that were downright ugly. He kept most of these gifts in a closet in his office, since he did not have room to display all of them and had no inclination to display the more garish ones. And when he knew a patient was scheduled to come for an appointment, he would pull that patient’s present out, no matter how tacky it was, and display it on his desk or on the wall to honor the patient and to give the impression that the gift was displayed permanently. And then, when the patient left, he would store it back in the closet. When I cleaned out his office, I found many of those objects, most of which were labeled with the patient’s last name so he could keep track of them. He never discussed this practice with me or anyone else, but he must have understood that honoring his patients by displaying their gifts would have a healing effect. I keep an old black-and-white picture on my desk at work that shows my dad as a young physician presenting a paper at a conference. My time with my dad when I was in elementary school riding around with him in the car as he made house calls was formative for me. I never entered patients’ houses back then, but later after I was able to drive, he would dispatch me to some of his patients’ homes to do EKGs for him to read back in his office. This was a kind of weekend job for me and was also a way for me to get my first glimpse at people’s lives in their homes. More importantly, I believe my home EKG visits were therapeutic for my dad’s patients, because they felt as if a little part of their doctor, his son no less, cared enough to travel to see them.

Now, over 30 years into my career as a palliative specialist, I have learned many things about how to care for patients compassionately. The biomedical knowledge comes relatively easily: all I need to do is read the literature as much as I can every day. In contrast, my ability to speak with my patients and their families compassionately has come in a much more haphazard fashion, primarily by watching others in action, copying the phrases and strategies that seem to work best, and practicing in isolation through trial and error. This process has been fraught with mistakes and many awkward moments, but I eventually developed my own style that seems to work well and continues to evolve. I have also honed my relational skills by reading many books, chapters, and scholarly articles about breaking bad news and other communication challenges. However, none of those resources are nearly as engaging, relevant, or practical for busy clinicians as this book.

This book could not come at a better time. Most doctors do not feel as though they have permission or time to dwell in the emotional, psychosocial domain, and even those who do may lack the skills they need to do so effectively. Electronic medical records make matters even worse by functioning more as billing systems and repositories of lab data than as collections of important narrative about patients’ humanity. If anything, electronic records dehumanize the patient narrative with smart phrases and templates and the like. Ideally, we should document something that gives insight into the patient’s humanity, such as the type of guitar he most enjoys playing, or her plans for a religious pilgrimage, or his studies to become a banker. Then, we have something to talk about when they visit, like the gifts stacked up in my dad’s office closet. In my view, clinicians are more aware of the need to be empathic than ever before, but barriers exist that prevent them from meeting that need. Back in the 1980s and 1990s, doctors did not even understand the importance of being empathetic, even though they had more time for their patients and therefore relatively more opportunity to honor their stories.

Now, doctors and other providers spend so much time typing and clicking that they have little time for imagining what the other person is feeling and responding to those emotions, which is the essence of empathy. What the medical world needs now more than anything is a very practical guide for clinicians to help them respond empathically under the most challenging circumstances and under the excruciating time pressure we all experience every day. Besides the conceptual grounding, empathic practice also requires an extensive repertoire of empathic phrases that promote connection between us and our patients during their most emotional and vulnerable moments. Most doctors lack such a repertoire. This book is like none other, since it engages readers with compelling stories that vividly illustrate the highly charged situations faced by patients and those who care for them. It then offers extensive dialogue with the actual words and phrases that promote empathy in clinical practice under real-life conditions, when time is limited, computers are present in every room, and stress levels are high. Everything written here brings best communication practices to life for busy clinicians. I wish I had this book when the frail woman with recurrent ovarian cancer traveled all the way to Buenos Aires and put her hope in me. If so, I would have known how to respond to her when she said, “I can’t die before I hold my grandchildren in my arms.”

Eduardo Bruera, MD, FAAHPM

Professor and Chair, Department of Palliative, Rehabilitation and Integrative Medicine and F.T. McGraw Chair in the Treatment of Cancer, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas