Questions at the End of Life: Victor Vogel, MD
Mar 12, 2015 12:29PM
By Erica Shames
Susquehanna Life Magazine: What was your main goal in writing this book?
VV: My first intention was to create a handbook for people who are dealing with terminal illness. There isn’t always good information or good direction to help them ask questions. It’s a conversation no one ever wants to have, but it’s a necessary conversation.
Secondly, we are headed over a financial cliff in America. We’re currently spending over 18 percent of our domestic economic resources for health care expenditures—and much of it doesn’t improve health or extend life.
SLM: Where does your story begin?
VV: The centerpiece of this book is my mother’s death when she was only 63. She had acute leukemia, and we sent her to Johns Hopkins, where I was trained – the best treatment I could think of anywhere in the world—and it didn’t cure her. And then we had this very difficult question: what do we do? In the end we concluded the evidence does not support treating her; she died 11 days later. I didn’t think I could write a book advocating a course of action if I couldn’t share the difficult situation we faced.
SLM: So, what are the questions people should ask their physician when they are diagnosed with a life-threatening illness?
VV: The very hardest question is: doctor, is this an illness you can cure? The next question is: if I get treatment for something that can’t be cured, what will this treatment do to my quality of life? What symptoms will occur? How will it affect my daily life? Will I be able to do the things I like to do?
SLM: Is it simply a matter of being more honest?
VV: It’s important we explain the reality. Many of the therapies we have for advanced cancer don’t extend life for more than a few weeks. Yes, there is treatment, there’s always a treatment. But if we do this treatment, those days and weeks may be filled with nausea, risk of infection and all sorts of side effects.
SLM: Isn’t this an education process that should begin in medical school?
VV: I had no formal training about how to approach death or how to help patients who are dying. When I was a medical oncology fellow at Johns Hopkins in the 80s there was some discussion, but it’s still rare in medical school to have formal curricula about the dying process. The deans will tell you that’s because medical knowledge has exploded and there’s no time! Well, really? There’s time.
SLM: If this subject is not being taught in medical school, how will the dynamic change?
VV: One of the first things I did in Texas [as deputy chairman of the Department of Clinical Cancer Prevention at the University of Texas M.D. Anderson Cancer Center] was to work on a large, state-wide screening project in 1987, when some mammography centers were charging as much as $250 for a screening mammogram. We changed that, not because doctors said this must be changed, but because women demanded, for example, that mammography be covered by all insurance policies. And, that’s what I think we need to do here. We’ve got to get the boomers to say, enough! We have to re-examine care at the end of life, and the public has to demand that hospitals, medical schools and training programs provide this education and provide the public with educational materials they need.
SLM: Playing devil’s advocate, one can argue that this type of treatment is a profit center for many medical institutions. How do you address that?
VV: I had a year and a half at the American Cancer society as the national vice president for research. My mentor there was Otis Brawley, a medical oncologist who wrote a book called How We Do Harm, meaning how the medical system does harm. You can sum up how we do harm in one word, greed: greed by the doctors; greed by the patients who say, I’m getting mine; greed by the hospitals; and greed by the pharmaceutical industry that makes billions on this. It’s wrong. It’s fundamentally and ethically wrong.
SLM: What are some of the downsides to this type of misunderstanding?
VV: If patients don’t recognize the reality, if they don’t see the end coming, they won’t make the proper preparations: they won’t say their goodbyes; they won’t do those last things on their bucket list; they won’t plan their memorial service. So we try to make people aware, without being too gloomy.
SLM: What other issues come into play at the end of life?
VV: We need to do a better job of teaching people about grief. Grief is a process. We do a great job when people die. The family comes, the friends come and they bring the casseroles. And, many, many families talk about the deafening silence when they’re left alone and the grief has not ended.
SLM: What do you hope people to come away with, as a result of reading your book?
VV: Every single one of us needs to come to grips with the notion that we’re mortal. That’s sad, but if we grasp that reality we can make proper plans. And I would hope that we would begin to get rid of this fantasy notion that medicine can solve every problem. We have a massive denial of death because it’s painful and loss is difficult—but we have to come to grips with it.
Dr. Victor Vogel is director of Breast Medical Oncology/Research, Geisinger Health System.