Q. Could you briefly introduce yourself?
A. I am an associate professor of medicine and global health at Duke. My primary appointment is with infectious diseases in the School of Medicine, but my “academic home” is in global health. I specialize in malaria, anti-malarial drugs, and malaria elimination.
Q. How do you define medical ethics?
A. Medical ethics, I think, is a set of rules, that we as clinicians, or we as researchers follow to make sure that whatever we are doing to our patients or with our patients, is morally, ethically, and legally acceptable, and fair.
Q. What personally drives you to pursue research in, or improvement, in medical ethics?
A. Well, my personal background and personal experiences help me understand and drive me to pay more attention to medical ethics. Specifically, I am from originally from Burma, or Myanmar, in Southeast Asia. I grew up there, and I started medical school there. But in my last year, I got involved in the student movements of 1988. Many students were killed on the streets, and then right after that, the military took over the country in late 1988. So that was where I was first exposed to human rights violations and the experience of having my own human rights violated. That was when I left the country. I took refuge in England, lived there for a couple of years, and eventually emigrated to the US. That was where I basically rebuilt my home. I redid my undergrad, med school, PhD, and my clinical training here. That experience of witnessing the violation of human rights stayed with me all along, and during my last year of med school, I went back to Myanmar, to the border region. That was the time I saw the value of research in building trust, fairness, and transparency. These are the fundamental building blocks of medical ethics. To build respect, you need to build trust.
Q. So in sum, human rights, building trust are intertwined with medical ethics.
A. Absolutely
Q. In your experience working in the health systems of the US and Myanmar, do you find any unique ethical issues?
A. There are huge differences, but there are also similarities. Similarities in that, the nature of humans is similar across the board. We all want to know the truth. We all want to know that we can rely on our doctor/researchers. We all want to be respected. But in health systems, there are differences in stability, consistency. For instance, there is a distinct infrastructure in the U.S., while there is little to none in Myanmar. It doesn’t matter how much money you have, if there is no infrastructure, that doesn’t matter.
Q. How do these distinct differences seem to affect issues of patient autonomy?
A. Well if you have a system with no emphasis on transparency, fairness, and respecting each other, there is no autonomy. Because if you think about it, informed consent’s main principle is autonomy. You have to be able to tell the patient about the potential consequences of your research, and the patient must also have enough power, or be empowered to say, “You know what? No. I’m not participating this.” There has to be an equal distribution of power between patient and the researcher. Even if the patient is illiterate, they must be able to understand the risks they will be involved in. They must be able to understand the system established to protect them. People like to say, “Oh no, these people are so poor and uneducated, so they cannot understand the medical system around them.” That is not true. If you explain things, and take your time, the patient can have autonomy, and they will express their autonomy if they can. As such, patient autonomy cannot be emphasized in a system like that of Myanmar.
Q. In that sense, as a medical student in Myanmar, did you notice any instances in which patient autonomy wasn’t being respected?
A. Oh there were many. There were many times in which the doctor came into the patient’s room with a piece of paper with small print that gave the risks and benefits of the surgery. And they would say, “here is the consent form, sign it” without educating them whatsoever. The doctor didn’t consider how the patient felt. You see this many times in developing countries. Patients suddenly feel smaller, as they are already vulnerable. So when they see a big doctor with a white coat coming in, there is no way they will ask, “what am I signing?” Then they will just sign it. You see this in America as well. Even when I am a patient in America, there will be instances where a nurse simply gives me papers to sign. But the difference here is that I am educated and empowered to ask, “what am I signing?”
Q. In this discussion about the patient- provider dynamic, how important is reconciling that relationship in the advancement of patient autonomy and medical ethics?
A. It is super important. I would say it’s the most important issue. There is significant literature on the power of consent, and the power of the balance between the patient and the doctor. If the patient feels like they have the power to be a part of the treatment plan and can talk shoulder to shoulder with the provider, many believe that there will be, for instance, less medical lawsuits in America. Many times, the patient sues the doctor because they are angry, not because of the bad outcome. The bad outcome alone doesn’t lead to a lawsuit. They feel violated, and they feel like they have been cheated.
Q. On the topic of American healthcare, what do you see as the most pressing issue, in terms of medical ethics and patient autonomy, of American healthcare?
A. It’s education. I truly think that we should have applied teaching of medical ethics. Not just to go through the principles of medical ethics. I really think that, just as anatomy is taught with applications, ethics must be taught in a similar format. The principles of medical ethics and the understanding of medical ethics is not enough. But how to apply medical ethics with your patient daily is crucial. I think that it will even be important to learn these principles and their applications at a high school level. Because building trust and proper communication are very important, but they are not a part of our education system.
Q. Our world is becoming and already has become increasingly interconnected. As multiple cultures become interconnected, do you see this intersection creating any unique issues for patient autonomy and medical ethics for professionals?
A. I would think that, yes, there are more challenges, but there are also more opportunities. Because we are so interconnected, it becomes more complex to respect medical ethics. There is no one-size-fits-all approach. SO that means that you need more and more tools and methods and approaches to make sure everyone is being respected.
Q. That’s where the opportunities you mentioned come in?
A. Yes of course. As you know, there is the common discussion about why the people in the poorest countries can still be happy while we have unhappy people in the richest parts of the world. So we can always learn from each other. This intersection, I believe, will help many of the issues we face in medical care.
Q. The common conflict that we see in the patient-provider dynamic is striking a balance between the autonomy of the patient while also respecting the expertise of the professional. What do you see as the most effective means of respecting both sides of the argument?
A. I would say that it is important for the doctor to come down to the level at which a patient can understand everything. My mentor would teach me, “You should always talk at the level of a sixth or seventh grader when talking to a patient.” Even though the patient may have a PhD, the level of vulnerability that comes with being a patient makes people less receptive to what you’re trying to explain. It’s a matter of taking time, being patient, and basically being empathetic. Think about how YOU would want to be treated.
Q. With each patient, the effects of healthcare on a patient can be heavily influenced by their. socioeconomic class. So that obviously leads to people of lower socioeconomic class finding it harder to navigate the healthcare system. How can we guarantee that people of all classes will be able to express their autonomy as a patient?
A. I think that this solution comes at an institutional level. Specifically, I think we need a more diverse medical system of professionals. This would mean that the professionals in the system will be able to better understand the vulnerabilities of more populations of people, and they will be able to recognize the special treatment and tools that people need. There are things you cannot learn from books, we need a more diverse population of professionals making the decisions for patients who can understand the perspectives of a wider variety of people.
Q. So in your perspective and experience, what is your opinion on the status of medical ethics and patient autonomy? Has it improved?
A. I want to say that it’s getting better compared to what we were doing to our patients 50 years ago. Today, patients are being protected not only by ethical principles, but also the legal system. Risk management systems in our hospitals teach medical residents and doctors how to practice ethics. In the past, we didn’t have this, the doctors were considered the cream of society, and they were allowed to do anything. So, to answer your question, things have gotten better.
Q. Thank you so much for your time, so, to cap this interview off, if the person reading this interview is to get one thing from it, what is the most important aspect about patient autonomy and medical ethics that you would like to emphasize?
A.We need to do more. We need to do more to underline the importance of ethical practice, and that of course is linked to building trust and effective communication between the patient and doctor.
This interview was conducted and compiled by Paul Kim of Duke University