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Final Exam: A Surgeon's Reflections on Mortalityby Pauline W Chen
Author Q & A
Q: You’re a liver transplant surgeon, mother of twin toddlers, and wife. Where did you find the time to write this book? And what inspired you to write it?
A: I have wanted to write this book for a long time, but I don’t think I realized it until after my surgical training was done. As a resident, I rarely had any free time, and given the choice between writing and sleeping or eating, the basic needs won out every time.
Once I finished training, though, I found myself drawn to writing. I wrote whenever I had time away from patients and the lab, on loose papers in my white coat pocket, in notebooks, and on my computer. The urge seemed almost uncontrollable at times, as if some pot inside had finally boiled over and I had to catch the contents that kept spilling out. Most of the pieces I wrote back then were short stories, but all of them had some medical theme.
After a few months of this, I signed up for a writing course at UCLA. I wanted some help with my writing and I thought that a class might harness my impulses a bit. I ended up taking two classes, and midway through the second one, the instructor asked to meet with me privately. I was convinced that she was going to ask me to tone down the graphic clinical details of my stories or to repeat the course since I had missed several classes because of emergency transplants. Instead, she just said, “Pauline, you have to write these stories.” She and my other UCLA instructor recognized my short stories as thinly veiled personal narratives, and both of them were instrumental in getting me to begin the book that had been inside all along.
It has been a juggling act trying to write the book, and I have taken some time out from clinical surgery to devote to Final Exam and to my family. But I don’t think my life is any more challenging than other people’s lives. One of my closest friends, for example, is a public school teacher, and she has to manage her own family and 26 energetic fifth-graders. My own parents had to support struggling family back in Taiwan, their own family here, and navigate a completely foreign culture. I’m not sure I could have held up as well as they did.
I’ve been very fortunate to have an extremely supportive husband; great children; wonderful friends, family members, and colleagues; and a terrific editor and agent. They have believed in this book and in me, and I am very grateful to them all.
Q: As a medical student, what was a book that you turned to for inspiration and advice? Who are other writers that have influenced you during your professional career and the writing of FINAL EXAM?
A: There are so many writers who have influenced me. Of course, I have always been a big fan of medical writers, in particular William Carlos Williams, Oliver Sacks, Sherwin Nuland, Richard Selzer, Abraham Verghese, Perri Klass, Jerome Groopman, and Atul Gawande. However, I think the writer who most influenced me as a medical student and resident was Arthur Kleinman, the Harvard medical anthropologist and psychiatrist who also happens to have been my mentor in college. In his books and articles, Dr. Kleinman elegantly argues for health care that is sensitive to the ways in which patients make sense of their world. That interpretation of the world, or one’s culture, affects not only the illness experience but also, we are now learning, the physiological manifestations and even gene expression of certain diseases. Dr. Kleinman believes that it is morally imperative that physicians are empathic witnesses to their patients, and that belief, perhaps more than anything else, influenced my clinical training.
During the writing of Final Exam, I continued to look to Dr. Kleinman and to other medical writers, particularly Sherwin Nuland and his book, How We Die, and Atul Gawande and his book, Complications. I found a great deal of inspiration — and hope — in the work of experts in end-of-life care, such as Robert Burt, Joanne Lynn, Diane Meier, Kathleen Foley, Susan Block, and J. Andrew Billings, to name just a few. I was also deeply inspired by what I think are some of the most eloquent and moving accounts of grief, loss, and death: Joan Didion’s The Year of Magical Thinking; Marjorie Williams’ The Woman at the Washington Zoo; and Tolstoy’s The Death of Ivan Ilyich.
Q: Why do you think we as a culture are so uncomfortable with the idea of death, even to the point where we can’t talk about it with each other? Do you think if doctors are better able to approach this with their patients and their families, death might eventually be an easier thing to face?
A: I think that death is an inherently unpleasant fact of our lives and that no matter how we couch it, talking about dying makes us all uncomfortable. I’m not sure we can change that unpleasant aspect of death, but I do think we make the experience much worse by denying death’s very existence. We also deprive those who are dying, their loved ones, and ourselves of an opportunity to enrich life and one another.
I think that one of the simplest ways in which we can improve the experience is to talk about the issues at hand. And since doctors are often the guardians of the last days of life, I think physicians are in a unique position to provide guidance and support. How could doctors do that? By asking the important questions, by facilitating the ensuing discussions, and most importantly, by simply being present for the patients and their families. In the end, I think being present may be the most important thing all of us, physicians or not, can do.
Q: Your experience with your first cadaver is richly detailed in this book. Do you think your experience was unique or do most medical students feel this attachment and respect for their first cadaver?
A: I don’t think my experience was unique at all. I remember that during the first semester of medical school, gross anatomy permeated every aspect of my life. We medical students talked about it and thought about it constantly, even when we were supposed to be thinking about biochemistry or cell biology. In fact, we even smelled our cadavers constantly. The smell of the preservative used, formaldehyde, clung to our skin and hair no matter how many showers we took. I remember how that smell was particularly noticeable when I ate finger foods that semester.
But today when I ask friends or colleagues about their cadavers, they smile but have difficulty recalling any of the details. I have to believe that we repress the memory. I certainly did. Over the years, I did envision my cadaver’s anatomy from time to time, but I did not think about the dissection experience until about seven years ago.
I was driving along the Pacific Coast Highway on one of those glorious southern California afternoons. The sun was shining against the Pacific Ocean, and the reflection made everything in my car seem brighter than usual. I looked at my hands on the steering wheel and caught glimpse a small patch of untanned skin under the ring I was wearing. At that moment, I suddenly remembered my cadaver and her hands and how I could see the outlines of her ring and watch even in her death. When I got home, I started writing and the dissection memories flooded back, each detail drawing out yet another. I think I wrote nearly that entire narrative in one sitting.
The whole process of writing the narratives has been like that. It’s been like finding the loose thread on a sweater and pulling and finding that more keeps coming.
Q: There seems to be a stereotyped view of surgeons as unfeeling, yet this book is deeply felt. Do you find in your profession that many of your peers are not as empathetic to patients, or is this a misconception? What, in your opinion, is it about surgeons that inspires this stereotype?
A: I would say that there are doctors in all specialties who are not empathetic to patients, just as there are always some less than empathetic individuals in any group. My guess is that some people may have the impression that surgeons are insensitive because our specialty, in general, is not given to much talk. As medical students, we are drawn to surgery over other specialties because we like to act. We are do-ers, so to speak.
And it is in our doing that I think you see some of the most moving examples of empathy in medicine. When a surgeon opens up a patient’s belly and finds tumor so diffusely studded in the abdomen that a curative operation is impossible, the silence in the OR is profound. When a patient becomes critically unstable, surgeons will hover close by, spending the night at the patient’s bedside or in their hospital office. Even on an everyday basis, surgeons routinely push the limits of endurance in order to work for their patients. It is part of the ethos of surgery, to put the needs of your patient above your own.
I remember watching a fellow resident learn that lesson. The resident, who had been working for 36 hours straight, was eager to leave the hospital, even as one of the patients under his watch became unstable. One of our attending surgeons, a gifted and highly respected elder statesman in our department, stepped in front of the resident, blocking his path out of the hospital and pointing back at the patient’s room. “Son,” he said in the sternest voice I had ever heard him use, “once you lay your hands on a patient, that patient is yours.” That resident ended up staying at the hospital late into the night for that patient, and I don’t think he, or I, ever forgot that lesson.
Q: You write that people often have a negative reaction when they learn that you do transplant surgeries. Why do you think transplants and organ donation has such a bad reputation?
A: When I was a medical student, it was very much in vogue among some of us to carry around pens or lapel buttons or pads that had the names of drugs on them. The pharmaceutical companies would give these out and we students would grab fistfuls of them, convinced that carrying those items around made us more doctor-like. At the time, the organ procurement agencies were giving out buttons that said something to the effect of not taking your organs to heaven where you would not need them. I put that button on my coat that winter and wore it home. My mother cringed when she saw me. “How can you be sure,” she asked me, “that the doctors who want your organs will know you are dead enough?”
I don’t think people are afraid of transplantation per se; I think the negative reaction stems more from beliefs regarding organ procurement and brain death. For some people, those beliefs are rooted in cultural issues; for others, my mother included, they cannot shake the fear that transplant doctors will take their organs before they are dead.
Brain death is a well-defined entity, and in experienced clinicians’ hands, the diagnosis is reliable and consistent. You are either brain dead or not. And transplant surgeons, despite my mother’s fears, are not the ones who determine whether or not a patient is brain-dead. That diagnosis is made by a separate set of doctors, usually the patient’s own, long before the transplant surgeon arrives on the scene.
The brain-dead patients may seem very much alive in an ICU thanks to a plethora of life support machines and medications; but when you look at the autopsies of these patients, the findings leave little to the imagination. As a leading neuropathologist once told me, their brains are “like soup.”
What makes it so difficult for families of brain-dead patients is the hope we all harbor: that our loved one might still be alive. It does not help that our life support machines and medications make the brain-dead look as if they are only asleep. Accepting a loved one’s death and then deciding to proceed with organ donation is one of the most emotionally difficult set of decisions a family member can make. I don’t think there is a single transplant patient, nurse, or physician who is not humbled by these acts of courage. At the same time, though, I think that as more people become aware of the life-saving results of transplantation and of the reliability of brain death determination, there will be fewer negative reactions and misconceptions and, hopefully, more people willing to donate.
Q: You were very close to your Aunt Grace, whose kidney failure and death you write about in FINAL EXAM. Do you think you were better equipped to deal with her death as a doctor, or did her death help you become a better doctor?
A: Being a doctor was very much a double-edged sword for me with my Aunt Grace. In one way, being a doctor made it easier to deal with her death. I had spent so much time in the hospital and around critically ill patients that I knew what to expect. For many of my relatives who are not physicians, my aunt’s last days were overwhelming. They were grieving in an environment that was entirely unknown and often frightening. I remember being asked two questions by different relatives: what happens next and what really happens when someone dies? I think having seen all of these things before and feeling comfortable in a hospital not only helped me to deal with my aunt’s death but also allowed me to help my family members.
However, I also think that there were ways in which being a physician made it more difficult for me to care for my aunt. As a physician, you are trained to observe your patients and pick up on the details of disease. Over the course of training, this skill becomes so engrained that you find yourself seeing almost nothing but those physical signs of disease. When Aunt Grace’s health began to deteriorate, I found myself at the mercy of those observational skills. It was horribly painful, paralyzing even; all I saw were my beloved aunt’s physical signs and the inexorable decline of her health. I forgot about her as a whole person.
All of this, of course, was not lost on my aunt. One of the last things she did before she died was remind me of the importance of caring for the person as a whole, beyond the symptoms and illness. I am grateful to her for that lesson and for making me a better doctor and person.
Q: Your approach to treatment–and the stories you tell in your book–often focuses on not only your patient, but the family and friends of your patient. What’s your philosophy on the way you “treat” those connected to your terminal patients? What do you feel doctors owe not only their patients, but also their patients’ kin?
A: I am a big proponent of caring for family and friends, but I was not always that way. As an intern and junior resident, I remember the nurses endlessly paging my peers and me, asking us not to forget the patients’ families.
The nurses were wonderful teachers for us in that respect. Young doctors are so focused on getting their clinical tasks done that they tend to forget their patients’ families and friends. It’s the nurses who usually provide the constant reminders to keep families apprised of all that is going on, to schedule family meetings, to be as present for the support network as for the patients themselves. I probably should have known better, given my medical anthropology background, but I was as hassled as the next resident and trying to cut every corner possible so that I could finish my list of tasks and get my precious15 minutes of sleep.
In terms of dying patients, I feel particularly strongly about involving families and loved ones. Death brings a lot of deep, unaddressed issues to the fore. Family and friends are the people who will be left to pick up the pieces after the patient dies. If the unresolved issues aren’t addressed in some way during the process of dying, the survivors must deal with those issues for the rest of their lives. That is a terrible burden to have to bear. While we doctors cannot resolve everything, we certainly can facilitate the process.
Watching someone you care for die in a hospital can be terrifying. I think doctors owe it to their patients to make the process less frightening for everyone involved. When managed well and with compassion, the death of a loved one can actually be a deeply enriching experience for all.
Q: From speaking to students now, do you think that the curriculum in medical schools is changing? In what way?
A: I definitely think medical education has changed in the last 20 years, in some ways for the worse and in others for the better. What I think is worse is the overwhelming amount of information students now have to learn. There have been tremendous advances in our understanding of the molecular biology and genetics of disease. Add to that, learning about the economic and bureaucratic complexities of providing health care today, and it is surprising that we can still mint M.D.’s with only five basic pre-medical courses and four years of medical school. Sometimes I think that being a medical student today is like starting a road race where the distance is increasing even before the starting gun fires.
What has improved, however, is the awareness among medical educators of the deficiencies and their willingness to improve how we educate our future doctors. More schools than ever before are offering integrated curricula and emphasizing the humanistic aspects of patient care. There has been a profession-wide call for doctors to be “culturally competent,” that is to be aware of the influences of culture on patients’ illness experiences and on the very physiology of diseases. There was precious little of any of this when I was a medical student.
Educational reform is now one of the most discussed topics in our profession. The New England Journal of Medicine, one of our most respected professional journals, has begun a series of articles that reviews our current educational system and looks into ways we can change it for the better. I’m guessing that we will see more changes in the next few years, and I think that will be very exciting for all of us, physicians and patients.
Q: Did you run into any problems while writing FINAL EXAM with patient privacy laws? How did you avoid them?
A: The issue of patient privacy is a complex one because of not only legal reasons but also the competing obligations that a physician-writer has both to patients and to readers. For physicians, confidentiality is one of the ethical pillars of the physician-patient relationship; it is, in fact, part of our Hippocratic Oath. Writers, on the other hand, make a pact with their readers; we promise to tell the truth, to distinguish fiction from non-fiction.
Different medical writers have different ways of dealing with patient privacy. For me, this issue was particularly difficult. The act of writing, of recounting a past episode, has a way of casting it permanently in a certain light, no matter what your intentions. Even though readers may be aware that a given narrative is from the writer’s point-of-view, there is still this lingering sense that how it is written is how it happened.
I felt deeply ambivalent about writing about my patients and yet I felt strongly drawn to telling certain stories. I wrestled a lot with my roles as physician and writer, and fortunately for me, my editor was extremely understanding of my angst. Ultimately, I felt most comfortable being as transparent as I possibly could be with both my patients and my potential readers.
For my patients, I allowed every patient or patient’s surviving kin to read their respective narratives. It was very important to me to get their approval not only for patient privacy reasons but also because of that power of the written word. While all the narratives were originally written to hide the patients’ true identities, several patients and families ended up asking that I use their real names and identifying data. There were several patients with whom I had unfortunately lost all contact, and for those narratives, I changed the identifying data as much as possible so as to maintain confidentiality.
For my potential readers, I decided to concentrate on my own perspective in the narratives and to stay away from giving others feelings or thoughts that they may or may not have had at the time. By focusing on my own point-of-view, I felt I could fulfill my obligations to truth as a writer while preserving the dignity and privacy of my patients.
Q: You write about a lecture called “The Patient Interview” you attended during your 2nd year of medical school. The lecturer was a doctor who had breast cancer, and told the lecture hall that to be a better doctor you had to stand in your patient’s shoes. How did this advice affect you?
A: I have to admit that at first, I paid little attention to her advice. I had spent the previous summer doing medical anthropology research, and I was pretty confident — overly confident — about my ability to see the world from another person’s point-of-view. I thought the lecturer was stating the obvious, that the lecture was fluffy (I was only too happy at the time to have at least one lightweight lecture given our weekly exam schedule), and that I was going to have an easy time relating to patients in the hospital. I subsequently saw the lecturer a few times in the hospital but did not think about much beyond her breast cancer and her smile (which was absolutely luminous). After I graduated from medical school and left Chicago, I forgot about her completely.
Then, a few years ago, her lecture and advice popped back into my head. I was treating a series of patients with cholangiocarcinoma, cancer of the liver’s bile ducts. As it so happened, I became close to many of these patients and their families for varying reasons, so watching them die of their disease was extremely difficult. I remember walking back to my car at night and in the darkness of the empty parking lot, weeping out of grief and frustration. I felt helpless — I was not curing but only growing closer to these patients and their families over time.
I thought then of that lecturer and how she had said that we could be better doctors if we stood in our patients’ shoes. I realized that contrary to my first impressions, that advice was perhaps one of the most important — and most difficult — lessons I took from medical school. Remembering that lecturer, her advice, and her own struggles with cancer was soothing for me.
I don’t think I am a perfect doctor now, but I do understand better than ever how standing in another’s shoes is a goal that I — and all of us, actually — need to keep working toward.
Q: In FINAL EXAM you state that “when asked what they would request for themselves if diagnosed with a terminal illness, the overwhelming majority of doctors choose to limit or withdraw life-sustaining therapy.” Why do you think non-doctors have such a different point of view, especially given that a person has to make this kind of decision with the assistance of their doctor?
A: As physicians, most of us see over and over again the results of continuing life-sustaining therapy. After a few such cases, I developed very definite ideas of how and when I would want to limit my own treatment in such a situation.
For most people, however, the first time you have to make such a decision is usually the first time you have been in an intensive care unit, the first time you have had to grapple with a terminal disease, or even the first time you have had a family member die. While discussing limiting life-sustaining therapy in a lawyer’s office or during a routine doctor’s visit is pretty straightforward, once you are placed in the actual situation, the decision is far more complex than anyone can ever imagine.
When faced with making these decisions for a dying loved one, people struggle with the idea that deciding to limit therapy is equivalent to “pulling the plug.” I have seen family members refuse to make any kind of decision for fear of being eternally responsible for “killing” their loved one. That is a heavy burden to bear, and it is, unfortunately, a misconception.
Many people also are hesitant to limit or withdraw therapy in case a miracle could happen. I have seen dramatic turnarounds and I do think miracles are in the realm of possibility, but I think the public’s hope can sometimes be unrealistic, which can in turn lead to more suffering for the patient than need be.
Some of that unrealistic hope is fueled by the resuscitations portrayed in the media, particularly on television. For example, there was a study published looking at the outcomes of cardiopulmonary resuscitation on television medical shows. The success rate was phenomenal on t.v., but in reality very few resuscitated patients ever recover fully. These unrealistic media outcomes can influence how patients and their families view life support.
Part of the responsibility lies with doctors, and we have not been all that great with helping our patients sift through the possibilities and decisions regarding life support. Studies have shown that even when we believe we are doing a good job preparing patients and discussing advance directives, we are not covering all the details or describing the possibilities accurately or in a way that patients can best understand them. Another study showed that the average amount of time devoted to discussing advance directives in a clinic visit was five minutes. That seems like barely anything for some of the most important decisions of our lives. On the other hand, doctors face their own set of constraints in this regard. When you look at what doctors are allotted in a follow-up clinic visit — 15-20 minutes — those five minutes are a huge chunk of time.
Q: Medical shows like E.R. and Grey’s Anatomy are very popular. What do you think the fascination is with these shows? Do you watch them? If so, what are your thoughts?
A: It’s difficult for me to speak for everyone because I have always been fascinated by medicine and medical life. I think, though, that it may have something to do with how disease tends to strip away all but the raw humanity of individuals.
We do not have a working television at home, but last winter my agent suggested I take a look at Grey’s Anatomy. I watched the first season on DVD and thought it was terrific. Some of it is not that realistic, but enough of it is close enough to the truth to bring back memories. In the pilot, for example, the head of the hospital tells the interns to look around because a few of the other interns will be cut before the year is out. That exact same thing happened to my class of interns, and while no one has been cut on Grey’s Anatomy, over half of my intern class either quit or were fired.
I’ve cried over memories that have flooded back after watching a couple of the episodes, and my friends who are doctors and I have had good laughs over some of the others. A few doctor friends, however, refuse to watch these shows at all. One said to me, “It’s hard enough as is. Watching one of those shows would be like inducing post-traumatic stress disorder.”
All that being said, however, I can’t wait for Grey’s Anatomy’s third season to come out on DVD.
Q: Who do you hope this book will reach?
A: I wrote Final Exam with the hope that it would inspire much needed discussions about end-of-life care. People have a hard time talking with one another about dying — we talk around the topic or ignore it all together — and this has been one of the biggest obstacles to all the efforts to improve end-of-life care.
The issue becomes particularly problematic when it occurs between doctors and their patients because any miscommunication means that patient care will in some way suffer. Doctors and non-doctors are often portrayed as standing at odds with one another. But I think that we ultimately share the same difficulties in grappling with death, albeit colored by our personal and professional experiences and by our cultural and ethnic backgrounds.
I hope that Final Exam will bridge the divide between doctors and their patients. I hope that it helps to support the current professional reform efforts in end-of-life care and even helps to accelerate the pace of political change. But my greatest hope is that Final Exam will create a common ground from which we can all begin to have meaningful discussions: about how we die, how we care for the dying, and ultimately how we live.
Q: What’s next for you?
A: Besides being a doctor and a mother, I look forward to starting work on my next book!
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