The recently published book, Malignant: Medical Ethicists Confront Cancer, takes a personal look at the cancer experience from the perspective of seven medical ethicists who were also patients with cancer or cared for spouses with cancer.1 The book’s editor, Rebecca Dresser, JD, MS, who teaches law and medical ethics at Washington University, St. Louis, recently spoke with The ASCO Post about her experience with cancer and what Malignant adds to the literature of oncology ethics and survivorship.
Out-of-body Experience
What was your cancer diagnosis and treatment experience?
In 2006, I was diagnosed with stage III/IV head and neck cancer. I was fortunate to teach at Washington University, which has a wonderful cancer treatment center. The program’s tumor board formulated a treatment plan beginning with 6 weeks of induction chemotherapy followed by 35 days of chemoradiotherapy, with three rounds of chemotherapy, but I could only handle two. It was a very rough time, I felt absolutely terrible.
Patients with cancer describe the numbing shock when they first hear that they have cancer. As a bioethicist, was your experience different?
Well, I certainly was shocked when my doctor told me I had cancer. That is a universal experience. But as a bioethicist, at the same time I was hearing this horrible diagnosis, it was like there was an elf perched on my shoulder whispering, “Oh, he’s breaking bad news, this is a topic you teach to med students.” So there was an out-of-body experience—I was hearing my cancer diagnosis as both a professional and a patient. That duality was consistent throughout the entire process, and it certainly made me more alert to ethical aspects of the cancer experience.
Book Origins
What was the genesis of the book Malignant?
During treatment, I would lie in bed and try to read, but quite often it proved too much of a strain, so I listened to the radio instead. One day, a program on National Public Radio featured doctors who were cancer survivors. They discussed how their professional experience affected the way they processed and dealt with cancer.
I knew some people in my field who were going through cancer also, so I thought, why not have similar discussions, only with people from bioethics? After I felt better, I wrote a grant proposal to the Greenwall Foundation, which was accepted. I asked six colleagues who had also faced cancer to join me in the project. That was how the Malignant got off the ground.
Methods and Content
How were the discussions constructed?
To get the ball rolling, each of us wrote short essays about our personal experiences that seemed to us to raise ethical questions. We then met twice for a couple of days to discuss our experiences and what we learned from them. I arranged for our talks to be taped and transcribed; our essays and meeting transcripts became the backbone of the book.
What topics did your group cover?
Actually, we covered quite a wide range of topics, such as breaking bad news, treatment decision-making, questionable-benefit interventions, and end-of-life issues. We also explored some issues less commonly associated with bioethics—for instance, cancer stereotypes, support groups, and life in remission.
Key Distinctions
What separates Malignant from other cancer memoirs?
We debated whether bioethicists could add anything of value to the many compelling personal narratives others had written about cancer. But Malignant differs from the other narratives in two ways.
First, instead of a memoir that essentially relates one person’s experience, we present what happened to a group of people having a range of cancer experiences, some similar and some quite different.
Second, as people who teach and write about medical ethics, we have a distinct outlook on what happened to us. Our training as bioethicists became the context for our personal experiences with cancer, and our personal experiences led us to rethink some of what we had previously read, written, and taught about serious illness.
Did working with six other professional academics pose challenges?
It was a collegial collaboration, but like all group projects, it included debate and disagreement. For instance, we argued about whether our “first-person bioethics” approach would add something of value to the bioethics field—some were more convinced of its value than others were. We also had different opinions about issues related to cancer screening and clinical trial participation.
Autonomy Issues
Please share a chapter of yours that highlights one of the larger cancer themes.
I think the chapter on my needing a feeding tube addresses the vulnerability of patients with cancer, especially with respect to the issue of autonomy. I was a well-informed and medically savvy patient, but I made a bad decision about my own care. Because of the radiation to my mouth, I couldn’t eat, but for a long time I refused to have a feeding tube. Consequently, I lost 25 lb and had to be hospitalized for failure to thrive; that’s when I finally gave in.
I was stubborn and, like many cancer patients, wanted to maintain a modicum of control over my illness. But my short-term concerns interfered with my overall goal of completing cancer treatment. I don’t think people should be coerced into doing things against their will, but sometimes people in grave situations, like mine, need to be persuaded to reconsider an earlier choice.
I still think that autonomy is important, but I also learned that I needed help in thinking through the potential consequences of my decisions. Cancer gave us all a better understanding of the challenges patients and their families face in coping with the medical and other decisions that come with life-threatening illness.
Communication Skills
As one who teaches ethics, how would you grade your doctors’ communication skills?
The people in our group received very good medical care, but the communication, which is an important part of care, was variable. Frankly, some doctors are just poor communicators. But it’s also a very difficult situation. Doctors often don’t know how much information a patient can process at a particular time, especially when the news is less than good.
As patients and caregivers, we sometimes wanted doctors to give us a frank picture of our situation, including worst-case scenarios. At other times, we only wanted the optimistic view. Sometimes we wanted to be involved in medical decisions; other times, we wanted someone to tell us what to do. We saw how difficult it is for clinicians to tailor conversations for each patient.
Unanticipated Discovery
Were there any surprises during the process?
We were a bit surprised at the physical burdens we were willing to endure for a better chance of survival. It was telling, because we learned why so many patients want those expensive cancer drugs that hardly ever extend life for more than a few months. ■
Disclosure: Dr. Dresser is editor of Malignant: Medical Ethicists Confront Cancer.
Reference
1. Dresser R (ed): Malignant: Medical Ethicists Confront Cancer. New York, Oxford University Press USA, 2012.
