PUBLISHED: March 15, 2007
Pauline Chen, a transplant surgeon turned essayist, received her first national publication in the pages of VQR. Her essay “Dead Enough? The Paradox of Brain Death,” appeared in the Fall 2005 issue and was later named a finalist for a 2006 National Magazine Award. VQR also published Chen’s essay “Morbidity and Mortality: A Surgeon Under Exam” in its Winter 2007 issue. Both pieces are included in the just-published book Final Exam: A Surgeon’s Reflections on Mortality (Knopf, 2007).
Final Exam explores the messy business of living and dying and questions whether Americans—both doctors and patients—face up to mortality in a way that’s healthy or productive. Drawing on her own experience as a medical student and a surgeon, Chen offers sharp critique of the challenges doctors face in an increasingly technologically astute medical environment. She questions how physicians and medical caregivers can balance life-saving techniques against the reality of death, even as she looks at her own shortcomings as a doctor with unflinching clarity.
Chen graduated from Harvard University and Northwestern University’s Feinberg School of Medicine, and completed her surgical training at Yale University, the National Cancer Institute (National Institutes of Health), and the University of California–Los Angeles. Although she is an award-winning doctor, teacher, and writer, Chen remains self-deprecating and charming—a model interviewee with near-perfect recall of the facts and figures that underpin the intensely personal narrative structure of Final Exam. She spoke to writer Heather Lee Schroeder by telephone from her home in Boston where she lives with her husband and children.
Schroeder: Many authors say they need time to ruminate, to mull over questions they’re going to address in their writing—time to sit on the couch and do nothing but think about the writing. I think of it as pre-writing, but since you’re so busy—you’re a mom, a teacher, a writer, a surgeon—how do you find time to undertake that aspect of writing, that couch time?
Chen: It’s a very good question. I think about that a lot actually. I’m a firm believer that there are only 24 hours in a day, and so you really have to juggle a lot of things. I think basically, you do the best you can. I’ve taken some time out to devote to my writing and to my family, and that has helped tremendously, but I am fully planning on working my clinical life back in, and it’s something I’m concerned about. How am I going to find the couch time, the sort of space to think about what I’m writing?
When I started writing some of these stories right after I finished my training, I found there was a lot of that kind of thinking that occurred. I called it marinating. (The ideas) marinated while I was working and seeing other things, and some of those other things I saw helped inform what was going on (in marinating). So I think it is important to have that time to think and to write and to reflect.
Do you think your concept of time management changed after you had children?
Absolutely. It was very interesting because right after I had the twins, right in the post-partum period, a surgical mentor of mine asked me what was harder—having kids or being a surgeon—and without stopping to think for a second, I said having kids. Having children opened up a part of me that I had not tapped into previously—an emotional part of me. I think having children made me a better doctor and writer.
You certainly have a great pedigree with prestigious degrees and world-class training. And now you have this book that’s doing quite well. You’re a bit of a superstar!
I’m very, very ordinary, actually. It’s interesting because my best friend from fellowship always jokes that the Pauline she knows is exhausted, is struggling to juggle everything, is trying to write and sound coherent but still talk to her little children so they understand her. That’s the real me.
On your web site, you talk about how older doctors have what you term a “quiet respect for mortality” that sets them apart from their younger peers. Part of this you suggest is because older doctors had an opportunity to practice medicine at a time when there often wasn’t anything more a doctor could do for a patient. You grapple with that idea a lot in your book—that almost anything is technologically possible, and that this reality has changed the face of medicine.
It’s pretty tremendous actually. On the one hand, it’s given a lot of people real hope. Diseases that were formerly life sentences are now something we can take care of. It’s pretty amazing, and it’s very intoxicating, too, to be able to do that for a fellow human being. For instance in liver transplantation, many people in end-stage liver failure are really at death’s door, and to have them in your I.C.U. and (to have) their families fully expecting that they may not be able to make it, but then to be able to give them, as we say in the transplant business, the gift of life, it’s really an amazing, amazing feeling.
The problem is that it becomes so intoxicating and so wonderful and so frequent, really, that you forget that part of our being human is that we’re mortal, and that there are diseases and biological processes over which we, as human beings, have very little control.
Having met older doctors along the way and during this book tour, I was struck by how, for the most part, there seemed to be a kind of respect toward mortality that I am not sure exists for doctors of my generation and younger. I thought that was interesting, and the only thing I could figure out from all of that and that they told me themselves, was that when they were growing up in the profession, it was more frequent oftentimes that a patient would not recover, that a patient would not survive the illness, that what they (the doctors) could offer would do no good or would not be able not help the patient to live, so they became used to accepting their limits as healers and caregivers.
Dr. Courtney M. Townsend said to me that as doctors we really have two jobs: one is to heal and the other is to ease suffering. If we can’t do the former, then my god, we had better be doing the latter. And I think that about says it.
Is it possible that all doctors, as they age in their practice and their lives, begin to grapple with the kinds of issues that you talk about in Final Exam? Which is not to suggest that your book isn’t important, but rather to suggest that you are putting to page the gradual evolution of a physician.
It’s interesting because there have been studies on that—how doctors feel about death as they go through practice. There’s one study that looked at the difference over ten years or twenty years of how doctors felt about talking about and approaching death. Many of them felt more comfortable with the thought of it as they got older and saw their family members and friends deal with illness more frequently than when they were twenty-six and fresh out of medical school.
But it’s still very difficult to talk about, and I think that difficulty, that uneasiness around death, is something that plagues all of us whether we’re doctors or not. I met a woman at a reading in San Francisco, and she was in her eighties and a really energetic woman. She said, “I loved your book, and I brought it to our senior citizen center, and I told everybody they should read it.” And she said, “But nobody wanted to read it. They said, ‘We don’t want to think about this.’”
And who does? You say in your book “we have no reliable way of ascertaining when someone will die,” but perhaps more importantly, we have no reliable way of ascertaining what will happen to someone when they die.
Oh, exactly. I think, to some extent, it’s functional to deny your mortality. It’s a functional coping mechanism, because if we didn’t then, you know, I wouldn’t go out of my house if I didn’t in some way deny death. And I certainly wouldn’t have done the kind of training I did because that just would have been nuts.
But on the other hand, when we deny it completely, I think we do not only our patients, but ourselves a real disservice. For instance, researchers have looked at advanced directives (legal documents that prescribe what an individual wants at the end of life and what kind of intervention they wish to receive). For most people, it’s pretty easy to talk about that when you’re in a lawyer’s office or a doctor’s office. It’s much easier to talk about it in that kind of setting, but when you’re in the hospital, which is pretty scary to begin with, and when a person you love or you are dying, the whole environment becomes just downright frightening.
So what people have found in studies is that even for patients with advance directives, a caregiver or a person who has the legal right to make decision will not necessarily follow those advanced directives because the environment is so different from when the advance directive was planned out. That’s why I think it’s really important to start talking about it early. If you really talk about it and understand, I think the person who is dying has the opportunity to have the kind of dignified death they want, and you, as a loved one or a physician, don’t end up with the kinds of additional regrets that really don’t have to exist.
On this book tour, I’ve had the privilege to meet people who’ve shared their stories about loved ones who have passed away, and almost everyone talks about thinking about that person every day. I think that’s sad, but it’s a normal part of grieving. When they talk about not only missing that person every day but feeling that person died in pain or that their health care professionals in some way abandoned them or that they maybe didn’t give that person everything that person really wanted at the end of life, I find that heartbreaking. I can’t help but believe if we talked about it a little bit more that those regrets could have been in some way mitigated or even eliminated.
A lot of what you do in Final Exam is parse down the language that has become a self-sustaining aspect of the practice of medicine. The chapter “First Do No Harm” is particularly effective, in which you grapple with this notion of “doing something” and how that notion is so bound up in the language used to describe it. This drive to “do something” you say can become a kind of perversion of the idea—an overload of care in an effort not to do too little. So, in some ways, it’s all about language isn’t it? Because you’re saying “Look, if we have these conversations with our doctors and our loved ones, then our advance directives won’t become perverted by competing desires.” Can you talk more about this daily struggle with the language of healing and death?
There’s language, and there are paradigms that the language serves. For instance, there’s a strong belief that in order to help people, we have to cure them. The notion of doing, the words “to do,” the words “to heal” serve that belief in that paradigm that healing equals curing.
My belief is that at the end of life there is more that we can do than just curing. The paradigm of healing should be broader than just curing. We can help people by simply being there. I think we can work toward an ideal, and for me I think that ideal would be of a healer who sees healing much more broadly than just curing. And if the book in some way can help to promote that kind of shift of paradigm, I would be thrilled.
That being said, I have to emphasize that there are people in the profession who are really pushing this kind of paradigm change. There are experts in end-of-life care throughout the country who have spearheaded reform efforts in our profession. I think their efforts have begun to take hold. In the last year, palliative medicine has become an official medical specialty. That is a really important value statement by my profession as a whole because it shows that the profession is starting to view our job as more than just curing. Easing suffering is an important component of what doctors should be able to give their patients.
Even the language you just used—this idea of easing suffering or providing this end-of-life care—has a completely different feel, both connotatively and denotatively—than curing. Easing suffering is what you very rightly describe as the “in-between” state—between fully healthy and dying—and which you say is actually the real benefit of the medical advances made in the last century. That seems like a radical statement.
Nobody has questioned me on that. The data shows that 90 percent of us will die from some kind of chronic illness. We will not have the sort of dramatic “she’s alive, now she’s dead” moment. Most (doctors) already see this in practice. That really hasn’t been, at least from the medical community, a point of contention.
Actually, talking about points of contention, it’s been very affirming and inspiring for me to see the reactions of my professional brethren. They have, for the most part, really embraced the book. Some of the younger doctors and doctors about my age have talked about how my experiences have resonated with their own. The sense that someone else has had these experiences with dying patients has given some of the physician-readers a sense of relief and of hope. It’s been nice to have that kind of affirmation from my colleagues.
The reason why our profession hasn’t changed yet is because death is difficult to deal with no matter how you look at it. And so when I talk about hoping the book will help to inspire discussions about mortality, I know fully well that those discussions are really hard to do. Writing those narratives was just so . . . it was really hard. It was really painful and really, really difficult. I realize having these discussions is much easier said than done.
When you were writing the first drafts of the essays did you ever find yourself holding back and being afraid to reveal the kinds of personal details that ultimately give the book its shaping narrative? Because without those personal details, I think the book would just be another treatise on what doctors could do better.
Yes, it was very hard because it required looking at myself and being critical of myself and critical of the very thing that drove me into medicine. With the narratives, the first few drafts were really hard. I wept a lot. They required going back and reliving a lot of things, many of which I was ashamed of, and they required opening up grief that I had kept bottled in. There were times when I just couldn’t face the narrative. I would be working on a chapter and I knew what I had to write, but I would write everything else but the narrative parts. I knew that once I started them, I would go on this journey that would be really hard to extricate myself from. There would always be this period where I would be skimming around the real issue at hand.
I think, in many ways, that very process of pushing myself mimicked, in some ways, what I did clinically. It was much easier to push aside the difficult questions and concentrate on “OK, what’s the research here on how doctors talk to patients” rather than looking at, for example, the time I talked to that family of the young boy who drowned and told them he was brain dead and then, and then the mother, every time she saw me in hospital, she screamed at the top of her lungs, “That’s the doctor who called my son brain dead.” That memory was so hard to put on paper.
I saw several themes around this issue of fallibility emerge in Final Exam. One was the inability to let go and the other was the inability to call or speak with someone who was dying. Did you consciously set out to talk about these twinned themes?
I actually started writing the narrative after I finished my training. During my training I didn’t write that much because I had so little sleep and food, so whenever there was a chance to have food or sleep, I usually did that. But after I finished my training, I had a little bit more time, so what came first were the stories—the narratives—and then looking at how the narratives fell out, I saw that some themes occurred. I don’t think I really understood how prevalent wanting to run away from death and doing too much . . . I don’t think those two things struck me until I got everything together. Then, how those two themes arced back into how we deny mortality, it all came together slowly and in pieces.
It was like putting a puzzle together, I think. You put the frame together and you start to see certain themes coming out. You put more pieces in, and you see certain colors keep appearing. When you see the colors of that puzzle, you realize, “Oh, this is what the picture really is.” Both of those themes come back to the fact that death is really difficult and that it’s much easier to deny it. You have to be comfortable with the uncertainty of it, with the difficulty of it, in order to even begin addressing it.
The essays in Final Exam feel more episodic in nature, although the personal narrative binds everything together. Did you plan to write a book?
The narratives just kept coming out. I just kept writing these stories about patients. It became apparent to me, over time, that I was writing about patients who had died. I was writing about other patients too, but a good chunk was about my patients who had died. After I saw that, I realized that I needed to organize these (stories) in some way and put them into a larger framework. That’s how the book came about.
I saw these essays as a way to for you to grapple with larger questions.
Yes. Unfortunately, our thoughts don’t come organized in outline form.
If only!
Right, exactly. One of the ways I decided which narratives to use for this book was by looking at my thoughts analytically. So, I asked “Which patients keep popping into my head, and why?” Those were the stories that ended up in the book because those people kept coming back, and I realized there was a reason they kept coming back into my consciousness.
You said you took time off to finish Final Exam. Can you talk about that?
I took time out to spend on writing and my family. In many ways for me, it’s been a really wonderfully clarifying, illuminating period in my life. Being able to spend time with my kids and my husband has allowed parts of my emotional and creative self to develop. I think I’ve become a much better writer and person.
On the other hand, something that’s so much a part of my identity is being a doctor. I miss clinical practice. Hopefully in the near future, I’m going to try to reincorporate it into my life. But, I don’t think I can go back to the time when I was a resident and where writing wasn’t that much a part of my life. I look back to that time, and I wonder how I possibly could have survived without writing. Just like being a doctor is important to me, being a writer is important to my breathing and my daily living. I find it interesting that during one part of my life I could have just been happy jotting notes and scribbling little things here and there, but not writing in a more cohesive, organized way.
And now that you’ve done it, you can’t …
I can’t stop. I also think that medicine or surgery and writing are really, really similar. Both have a craft element in them, and that craft element has to be practiced so much that it becomes second nature, so that you don’t really have to think about it anymore. They both also have these art elements that require time, that require a certain kind of intellectual freedom. Even though they’re both competing parts of my life, they’re also very, very intertwined.
I love the comparison, and it seems apt after reading your book. Would you say that in both surgery and writing things have to be done in a certain order?
You need to know the grammar before you can write a sentence. You need to know how to tie a knot—a one-handed knot and a two-handed knot—before you can begin to cut things that need to be tied together. But I think the artistic part of both fields really becomes liberated once you become comfortable with the craft.
In surgery, I remember as an intern, you were so scared about actually cutting and putting in the stitches just right and tying the knots down so they didn’t untie. You were so concerned about the craft, that you didn’t experience the liberation of the art of the surgery. But, when things go so well, it’s like a ballet. I find it’s the same thing with writing. Once you’re more comfortable with the craft, the art is liberated, and it’s even more gratifying.
As I read Final Exam, I was reminded of Oliver Sacks, another physician who grapples with essential questions about life and death. Has Dr. Sacks influenced your writing?
Oh yes. I’ve always been attracted to medical writing—since I was seven or eight. I read (one of) Oliver Sacks’ books when I was in high school, and I loved it. And there’s William Carlos Williams and all of the other medical writers. They’ve all influenced me tremendously, and I’m grateful to them. Each of them has brought something magnificent to the practice of medicine, but also to people who aren’t doctors. Translating the clinical life into something people can read, that’s a great thing. Patient education and patient advocacy is important. I see part of my role, too, is to help non-doctors in that way.
I keep thinking that you’re trying to bring humanity to this process of living and dying and to the layperson’s interaction with the people who help them take care of their bodies.
Thank you. I hope so. I really hope so. I don’t think I’m the perfect doctor, but I do think there are ideals we can all strive for. I think striving for those ideals as practitioners, as health-care professionals, is really, really important. Going back to the last question, I have this analogy: sometimes I like to think of my writing as translational science, but in literature—making medicine more accessible to people who aren’t doctors.
For people who need that translation more than anyone else?
Right. We need to understand each other. Again, it comes back to language and to words. At one point, I spoke French. Now when people ask if I speak French, I say “No, now I speak medical.” Language has become a barrier in many ways between ourselves and our patients. I’d like to contribute to breaking down that barrier through my book and through my other pieces.
You have a new essay in this issue of VQR. Are you planning a second book?
Yes, I’m very excited about it. This goes back to your very first question about couch time. I have some ideas, and I’ve talked to several people who I run ideas by. Then I let it sit for a little bit. I suspect other writers are like this: I don’t really entirely know what I’m thinking until I write it.
I think that’s part of writing.
Is that part of writing? OK. My medical friends look at me like I’m kooky when I say that.
