Bioethics and Cancer
This is a wonderful essay that is well worth reading. The author, Rebecca Dresser, is an ethicist who had cancer. She learned, as have we all, that personal experience is vastly different than theory or esoteric thinking. She learned that feelings and unexpected intense reactions and close attention to others' body language and words are as important as theories. This is rather long, and I know this is a very busy period of the year. If you don't have time to savor this now, return to it later.
Bioethics and Cancer
When the Professional Becomes Personal
Posted: 12/21/2011; The Hastings Center Report. 2011;41(6):14-18. © 2011 The Hastings Center
Abstract and Introduction
In 2006, I was diagnosed with cancer. This began a crash course in real-world medical ethics. Having cancer was awful, but it was instructive, too. The experience gave me a new understanding of what my profession is about. Individuals in the bioethics field often address topics related to cancer, such as medical decision-making, the patient-physician relationship, clinical trials, and access to health care. Yet few engaged in this work have lived with cancer themselves. Experience as a cancer patient or family caregiver extends and deepens one's thinking about serious illness and bioethics.
During my time as a cancer patient, I kept in touch with several colleagues immersed in their own cancer struggles. I also knew some others who had faced cancer in the past. In 2007, I asked six of them to join me in a project to consider cancer and ethics from a personal perspective. Five members of the group had had cancer; three had cared for spouses with cancer. To get started, we each wrote short essays about personal cancer incidents that seemed to us to raise ethical issues. We met twice to talk about our experiences and what we had learned from them. I arranged for our discussion to be taped and transcribed. Our essays and meeting transcripts became the basis of a forthcoming book, Malignant: Medical Ethicists Confront Cancer.
Our conversations together covered a range of topics. Some were standard medical ethics matters, such as breaking bad news, treatment decision-making, clinical trial participation, interventions with questionable benefit, and end-of-life care. But we also explored topics less commonly associated with bioethics: cancer interactions, cancer stereotypes, patient support groups, and life in the "remission society." Cancer patients and caregivers spend lots of time in treatment centers and doctors' offices, but much more time in the outside world. So we considered the ethics of serious illness in everyday life, as well as the experience of illness—how cancer brought us face to face with mortality, loss of control, vulnerability, and increased dependence.
We wrote Malignant for a broad audience, but this essay is for readers in the bioethics field. There are things we want our colleagues to know, and I describe them here. I also describe a debate we had about the relevance of personal experience to our work. Members of our group disagreed about what one participant, Arthur Frank, calls "first-person bioethics." We argued about the nature of such an approach and what it could add to the field. Malignant is our effort to engage in first-person bioethics, but we recognize that some of our colleagues might not classify what we have done as "real bioethics."