Gray Matter

On July 25, 1972, reporter Jean Heller broke a story in the Washington Star that changed the American medical establishment forever. For the prior 40 years, the federal government had been studying the effects of untreated syphilis on 623 impoverished Black men despite the availability of penicillin and knowledge of its curative outcome on the disease. The men, sharecroppers from rural Macon County, Alabama, were lured into the study with promises of free medical care, hot lunches, and burial stipends. They were not informed of their diagnosis or the purposes of the research study.

The “Tuskegee Syphilis Study” raised the specter of another ethical abuse in the 20th century. Between 1946 and 1947, the “Doctor’s Trial,” held in Nuremberg, Germany, exposed German physicians’ involvement in inhumane experimentation and systemic murder of peoples they deemed “unworthy of life,” establishing the Nuremberg Code. The Code’s first principle—that the voluntary consent of the human subject is essential—was meant to provide worldwide regulation and a set of ethical principles in research involving human subjects.

And yet, Tuskegee still happened. With a festering mistrust in governmental bodies, medical establishments, and their physicians, people wanted to know how and why, and perhaps most importantly, what do we do to ensure this never happens again?

“Knowing about principles is one thing; knowing how to apply them in the messy real world is another,” says David Oxman, MD, an associate professor of medicine in Jefferson’s division of pulmonary, allergy, and critical care medicine.

Oxman is the thread director of ethics and professionalism at Sidney Kimmel Medical College (SKMC) and runs the ethics consultation service at Thomas Jefferson University Hospital. He believes the key to avoiding another Tuskegee starts with how we train physicians today.

Ethics has been baked into the practice of medicine at least as far back as Hippocrates and the credo to do no harm. In 1847 at the first meeting of the American Medical Association, the group adopted a set of standards for conduct in hospitals and clinics. Yet, it wasn’t until the 1970s, following Tuskegee and several high-profile lawsuits that challenged previous standards for ethical operations—1973’s Roe v. Wade, 1973’s Dax Cowart Case, and the 1975 Karen Ann Quinlan Case, to name a few—that ethics became a formal part of medical education. Supported by grants from the National Endowment for the Humanities, the Institute on Human Values in Medicine, and the Society for Health and Human Values launched a project to develop bioethics in medical education. In 1977, Johns Hopkins University School of Medicine became the first medical college to incorporate ethics education into its curriculum with its inaugural Ethics in Medical Care. By 2002, 79% of medical schools would offer a formal ethics course.

Today, the Association of American Medical Colleges (AAMC) requires that medical school graduates “demonstrate a commitment to ethical principles pertaining to provision or withholding of care, confidentiality, informed consent.” However, the design and inclusion of ethics in medical education are decidedly loose. They vary as each institution operates uniquely, and no consensus or standardizations exist amongst them.

“Some schools have dedicated courses in medical ethics; others try to embed ethics teaching into other parts of the pre-clinical curriculum,” says Oxman. “Unfortunately, for many medical students, a glancing exposure to abstract ethical principles in the pre-clinical classroom is where their ethics education begins and ends.”

Medical ethics borrows from various disciplines—literature, law, history, art, philosophy, and medicine—to provide physicians with a framework to manage the complex personal and professional problems presented by working in healthcare and beyond. While medical schools aim to produce great doctors, the idea is that by studying the humanities, they can also become good doctors.

The dynamic nature of medicine complicates things. As knowledge, protocols, and technology advance, physicians are confronted with new ethical dilemmas with little to no framework to guide them. Something that might have been considered ethical 30 years ago may not be today—and what we think is ethical right now may change in the future.

“In the real world, physicians’ ethical duties collide and compete against each other,” Oxman says. “Protecting patients from harm while also facilitating their autonomy requires nuance and judgment. Ethical dilemmas often have more than one acceptable resolution. Frequently, it’s not about pursuing a singularly correct ethical choice. Instead, it’s finding the most right or the least wrong way to proceed.”

A woman who recently suffered a stroke needs a temporary feeding tube for nutrition. She cannot speak but vigorously resists a doctor’s attempt to place the tube. Should the physician continue with the procedure or stop?

A man with advanced HIV is admitted to the hospital with pneumonia. He has never told his wife about his HIV diagnosis. Do the doctors have an obligation to tell her?

A young man who uses IV drugs develops severe endocarditis and recalcitrant heart failure. He needs complicated and expensive emergency heart surgery, but the surgeons worry that his drug use will just lead to reinfection. Should they offer him the operation?

These are all real scenarios that Oxman presents to his students. “Acquiring the maturity and intellectual framework to wrestle with these situations is a critical part of becoming a physician,” he says.

Any patient would want their physician to have a strong ethical grounding to inform the care they receive. Research shows that the same grounding might be crucial to the physician’s own well-being.

According to the Centers for Disease Control and Prevention (CDC), those working in healthcare are at an increased risk for suicide due to longer working hours, emotionally difficult situations with patients and family members, workplace violence, and routine exposure to human suffering and death. In a Mental Health America survey conducted from June to September 2020 to record the experiences of healthcare workers during the still-ongoing COVID-19 pandemic, the findings showed that out of the 1,119 healthcare workers surveyed: 93% reported experiencing stress; 86% reported experiencing anxiety; 76% reported exhaustion and burnout; 75% reported feeling overwhelmed; and 39% reported that they did not feel they had adequate emotional support.

“Ironically, it’s in the preclinical years in a classroom setting where students get most of their ethics exposure, and there’s absolutely value to that abstract foundational knowledge,” says Oxman. “But in the clinical years, the most formative years for their professional development, that’s when students need guidance the most.”

A study published by Tulane and Jefferson in the Journal of General Internal Medicine found that exposure to the humanities correlated with positive personal qualities and a reduced risk of burnout for medical students. Those with a higher exposure reported higher levels of positive physician qualities like wisdom, empathy, self-efficacy, emotional appraisal, and spatial skills while reporting lower levels of negative qualities that are detrimental to physician well-being like intolerance of ambiguity, physical fatigue, emotional exhaustion, and cognitive weariness.

“The fields of art and medicine have been diverging for the last 100 years,” says Salvatore Mangione, MD, co-author and associate professor of medicine at SKMC. “Our findings present a strong case for bringing the left and the right brains back together—for the health of the patient and the physician.”

During Phase One of the JeffMD curriculum, all SKMC students are required to complete two humanities electives. These courses provide students with opportunities to bolster the crucial skills of competent and empathetic doctoring: emotional awareness and empathy, close observation, and understanding of social and historical dimensions of health. The fusion of medicine and arts in classes such as Introduction to Creative Writing, Visualizing Anatomy, and Mindfulness and Compassion for Self and Others teaches students more about their patients, themselves, and the world around them.  

Ethics at the Bedside is a Humanities Selective course offered through the JeffMD curriculum that utilizes a case-based approach for students to develop a deeper understanding of medical ethics, providing soon-to-be physicians with the philosophical tools required to discuss complex ethical issues.

“The goal of the course is to expose students to medical ethics as it happens in real life,” says Oxman. “In their medical rotations, students are moved from books to the real world while developing their clinical reasoning skills. I want them to also develop what I call their ‘ethical reasoning skills,’ so they can move through challenging ethical situations in the future.”

Though the principles of medical ethics (Beneficence; Autonomy; Non-maleficence; Justice) are easily memorized, it goes beyond recitation: one must “turn the abstract into practice.” To develop his students’ ethical reasoning, Oxman says the first thing he stresses to students is the gut check, where one evaluates their emotional and moral reaction to a situation.

“We should not make decisions solely based on emotion, but I think that medicine, whether you’re a nurse or a doctor, is an inherently moral endeavor, and if we start to lose the gut check, we’re in trouble,” says Oxman. “I ask my students: ‘What is your first moral reaction to the situation?’ Sometimes that reaction may lead you astray, but it’s the best place to start. Once you’ve checked in with yourself, put it aside, and go to the second step, which is theoretical—thinking about which principles you’ve learned can be applied.”

The next step, Oxman says, is to look at the specifics.

“Many students have this idea that clinical ethics is about being detached—like plugging in equations in a mathematical problem that gets you to the answer, and then you’re done with it,” explains Oxman. “But, in actuality, the specifics—of the situation and the people involved—are everything. Each case is like a little universe. For clinical ethicists, most often it is the specifics of the case that will give them a clue as to how to resolve the conflict.”

The last step is applying judgment.

“Aristotle defined judgment or ‘phronesis’ as the ability to perceive what is required in feeling and action in any given situation,” says Oxman. “There is no algorithm for doing what is wise. It’s something you hopefully develop over years of experience and reflection. Often it comes down to just doing the best you can and what you think is right, and you have to be comfortable with some level of ambiguity.”

A required component of the JeffMD curriculum is a scholarly inquiry project intended to provide medical students with the skills and experience needed to become critical consumers and producers of medical knowledge. As part of an integrated curriculum, Scholarly Inquiry overlaps with the threads of Evidence-Based Medicine, Health Systems Science, Professionalism/Ethics, and Wellness, alongside the Humanities Selective and the Clinical Experience program.

“For the ethics and professionalism thread, I started thinking of ways we could revamp how we used to do it,” says Oxman.

That’s when the opportunity to partner with the Voices for Our Fathers Legacy Foundation arose. Founded in 2014 by descendants of the Tuskegee Syphilis Experiment, the nonprofit aims to connect and provide annual scholarships to descendants and engage in the research project “The Untold Story,” which offers support to the Tuskegee University National Center for Bioethics in Research and Health Care. The foundation’s partnership with SKMC is now in its third year.

“We start with a talk on the generalities of research ethics, race in America, and medicine, and then they go into this presentation from that group,” explains Oxman. “It’s informative, sometimes uncomfortable, but necessary and enlightening for students. It’s an amazing partnership.”

For the future, Oxman has big dreams for ethics at Jefferson.

“Ultimately, my goal is to have a center that would serve as a platform for developing ethics programming,” he says. “Having talks, bringing in visiting scholars, all to serve the goal of nurturing the ethical life of the Jefferson community.”

In speaking of his own journey to becoming a doctor and an ethicist, Oxman says it’s due to his love for humanism. At age 25, Oxman explains he had a “bit of a life crisis” while he was a graduate student in New York studying literature, unsure of where next to go in life. When he came across Abraham Verghese’s “My Own Country: A Doctor’s Story,” a book about Verghese’s account of caring for AIDS patients in Johnson City, Tennessee, something clicked.

“The humanistic side of medicine is what really spoke to me,” he says. “Don’t get me wrong: We need the people who fall in love with science early and want to be doctors from the age of six—but we also need people drawn to the humanistic side of medicine. For me, I think it was a combination of an intellectual fascination with medicine but also the ability to have a great vantage point for the human experience.”