Ethical medicine, Lesson 1: Recognize your viewpoint
[Editors’ note: This is the last in a series of seven articles about bioethics. Q&A’s include UW experts discussing the beginning of life, end of life/futility, clinical consultation, pain care, research and teaching. An overview started the series.]
Wylie Burke is a professor of bioethics and humanities and chair of that department at the University of Washington. She is principal investigator of UW’s Center for Genomics and Healthcare Equality, a federally funded center for researching social, ethical and legal influences on the translation of genetic information into improved human health.
Burke spoke about the challenge and thrill of teaching medical students and residents about bioethics.
Q. In introducing students to bioethics, is your major goal to create a framework for decision-making?
A. Yes. Ethics education is very much about understanding what’s in a problem. We tend to say it’s an ethics problem when we confront a dilemma with alternative courses of action and we’re having trouble figuring out which is best. What ethics teaching is about, fundamentally, is trying to figure out, within a very complex situation, what issues are in play and what values are in play, and how are they potentially competing with one another. You’re teaching people to bring framework to bear to think about what’s in the problem.
Q. A single framework that each student can embrace, even with different life experiences and values?
A. The fundamental thing we want to teach is that, as we approach dilemmas, we approach them from our own standpoint. We need to figure out what’s in that standpoint – what assumptions, what expectations, what biases – and then we need to do our best to understand other viewpoints. It’s only by being able to ask what values are in play from different standpoints that we can get to reasoned analysis of a situation.
This goes beyond what we might call classic medical ethics; you can’t be a good clinician if you don’t understand what biases and expectations you bring, and develop at least some insight into how the situation might look different to the patient or another clinician
Q. Is it difficult for students to comprehend that opposing viewpoints can each have ethical footing?
A. I think students in general have trouble with that. It’s one of the things ethics has to teach. Let’s take abortion, the most polarizing debate of all in medicine. My goal as a teacher is to make sure people understand this is not a black-and-white issue, but one with different perspectives of what is morally right. I would propose that you have to do your best to be deeply respectful of alternative points of view.
What’s interesting about that particular debate is that most people, even if they’re trying hard to understand the different points of view, will come to the conclusion that there’s a “right” position – even if they can recognize its limitations. In other words, they’ll take a stand and say, “Here’s what I think is the right way to proceed.” What I hope to achieve in ethics education is for that person to think, “Here’s what seems right to me but I understand why a different choice seems right to someone else. I understand why these two positions are difficult to reconcile but I understand how ethically informed people of good will might come to different conclusions – and therefore I’m able to respect that alternative point of view.”
Q. That sounds like a life lesson everyone should take.
A. Yes! It is. And that’s how we learn from our students. We learn from their effort to engage in that conversation.
Let’s take something less dramatic where the same issue is in play. When new technology enters clinical practice, one of our tasks is to gather evidence and come to conclusions about the appropriate use of that technology. That’s how we create clinical practice guidelines. Say it’s a genetic test. As we make clinical practice guidelines about a new test, in deciding who should be offered testing and where it is not indicated, we have exactly that same potential for polarized disagreement.
But a healthcare system has to come to some decision about what guidelines we’ll pursue. We might decide to perform this test only in certain circumstances, and otherwise, we’re not going to order it and a patient’s insurance won’t pay for it. Others may disagree with where we drew the line. That kind of conflict happens all the time in healthcare, and exactly the same requirement is in play: We need to understand why one person thinks the test is indicated, the other person thinks it is not. We need to be able to justify, in an ethically defensible way, how we are going to use the test and how we define when someone should not be eligible to have it.
Q. So students learn to understand other viewpoints, but as clinicians, they’ll still have to make decisions about patient care. Don’t they still default to their own ethical biases?
A. Now you’re talking about professional responsibility. Clinicians can’t just go by their gut instinct or personal beliefs. They have responsibility to understand the standard of care. The professional knowledge that I am obligated to maintain informs me, most of the time, of the appropriate thing to do in a given circumstance.
But of course sometimes clinicians confront situations where the standard or practice is an insufficient guide and they’re unsure of the right thing to do.
Q. That’s when you call in the consultants?
A. Yes, but ethics is relevant beyond those dilemmas where you call in the consultants. Ethics is every day, not just the dramatic, should-we-pull-the-plug dilemmas. Ethics is being competent in your field; that’s a fundamental ethical obligation for a professional. The corollary obligation is to use that competence in the best interest of your patient.
Q. What ethics training does UW require of medical students?
A. We have two formal ways students connect to the ethics curriculum. One is as part of the Introduction to Clinical Medicine, a year-long basic skills course in the first year. In the second year, we have a required course that introduces students to a series of case examples where ethical dilemmas arise. We also have a number of elective courses, and we offer a master’s in bioethics for health professionals.
Our goal is to produce the ethics leaders of the next generation. Our master’s students are nurses, physicians, anesthesiologists, social workers, lawyers. We have a gamut of healthcare professionals who see ethics study as enhancing what they do. We teach theory and empirical research skills; some will go on to use the research skills in academic careers.
Q. Is it hard for instructors to keep pace with the technological innovations that lead to new ethical dilemmas?
A. Yes. When you look through the frame of where the dilemmas are coming from, they are always evolving technologies, like genetics. Luckily, I am a geneticist as well as an ethicist.
Q. How convenient!
A. (Laughs) It has been very convenient because genetics has been a leading edge of producing technologic dilemmas. But I don’t have expertise in information technology, and lots of ethical dilemmas have to do with privacy, data sharing, ways you’d use IT (information technology) to direct clinical-care connections between health systems. So I need to look to someone who has much more expertise than I in the actual technology to figure out what are the most important issues.
Q. What’s an ethical case or event that has as much relevance in the classroom now as it did 10 years ago? Tuskegee? Karen Ann Quinlan?
A. I think both of those cases. The issue of racism in our healthcare system and in society lives with us. The reluctance of minorities to participate in research is with us. One example is genetics research: One success has been our ability to understand genetic contributors to breast and ovarian cancer. We can identify women at high risk and offer them intensive screening, preventive surgeries, ways to reduce their risk. But we know way more about the genetics of breast cancer in women of European-American descent then of African-American descent, and as a result, the testing is less useful than it could be.
We need more trust and more research. We need African-American women to be in a position to receive services, but funding for genetic research is often much less generous if, say, you are on Medicaid, and it’s absent if you have no health insurance.
And the genetic counseling profession is almost all white. We don’t have much minority representation in that profession. You can take all the lessons of Tuskegee, but the fact that our healthcare system quite simply does not serve African-American patients as well as European-American patients is a big deal. And it’s true of many minority populations.
The Karen Quinlan issue, where we see the current discussion, is around assisted suicide. What is the ethically responsible, respectful, compassionate thing to do when a patient is suffering, has terminal illness and wants to hasten death? Obviously we’ve come to a liberal conclusion in Washington state, but our state is very much in the minority. It’s also a situation of huge ambiguity for clinicians. We’re taught to sustain life, to lengthen life if we can. We’re not taught to help hasten death. On the other hand, no clinician has failed to see patients where you understand why that would be the compassionate solution.
Q. You spoke of learning from students. What has a student taught you recently?
A. One of the most rewarding things about teaching students is the co-learning process. I recently had a student who is extremely interested in genetically modified food and the broader implications for society. One thing I learned from her work was that the issue probably isn’t food safety as much as the environmental effects of the manipulations that lead to genetic modification. It’s what genetically modified organisms might do to the environment and how that might disrupt ecology.
Q. So an indirect health aspect?
A. Yes, but much bigger in a sense.
The other student I’m thinking of is really interested in an important research gap and how we solve it: That is, many treatments we offer pregnant women are not evidence-based, and that’s because we don’t do much research on pregnant women … because we worry about doing that. For many years, regulations prohibited or strongly discouraged research on pregnant women, and people realized it was creating this anomaly of not knowing what to do – and of course pregnant women need lots of medical care.
That regulation was undone but still people are pretty reluctant. So the question is, how do you do that responsibly? What’s involved in defining a research agenda that says, “Here are the critical questions we need answers to in order to give care correctly”? And then, once we figured out the crucial questions, how do you think about both the mom’s and the baby’s safety and responsible, safe ways to begin to answer those questions.
Q. Has that vein of research been paralyzed?
A. Not paralyzed, but it’s such a slow-motion effort that we’re not getting answers anywhere near as fast as we need them. So how do you think about that and then implement solutions? It’s not just: How do you do the research? How do you incentivize the research so it gets done so people get over the hump of “it’s too complicated”?
Q. Do students have better understanding of their own viewpoints at the end of a course?
A. What I hope for is that students, at the end of a class, think, “It’s more complicated than I thought.” (laughs)