Speaking through an interpreter, Joseph Carrese told the middle-aged, somewhat overweight man that he had diabetes. It was 1988. Carrese, fresh from completing his internal medicine residency at Johns Hopkins Bayview Medical Center, had recently arrived at the Navajo reservation to practice medicine through the Indian Health Service. As he discussed a regimen of medication and the risks of not taking it, the patient sat in silence. Then, the man walked out of the office and never returned.
Carrese couldn’t understand why this patient and others refused treatment after he warned them of the potentially dire consequences.
He later learned that many traditional Navajos believe language shapes reality—so talking about the risks of not treating a condition may make those outcomes happen. He was in an ethical bind. He couldn’t help patients without their understanding and cooperation, but his words were driving patients away.
To find a better approach, Carrese interviewed Navajo patients, traditional Navajo healers and other health care providers on the Arizona reservation. His recommendations: Frame medical information in positive terms, involve traditional healers and family members in health discussions, and prepare patients for potentially upsetting news.
“I came back to Baltimore with a much different frame of mind about being open to differences and avoiding the trap of making assumptions,” he says.
Educating the Next Generation of Ethical Clinicians
Carrese, now an internist at Johns Hopkins Bayview, is still wrestling with the ethical issues raised when a physician’s do-no-harm mandate clashes with a patient’s right to choose or refuse treatment. As a faculty member in the Berman Institute of Bioethics, he’s helping Johns Hopkins medical students, interns, residents and clinicians navigate this complex and changing territory.
The 20-year-old institute traces its start to the mid-1980s, when Ruth Faden, a professor in the Bloomberg School of Public Health, began hosting university wide brown-bag lunches to discuss ethical issues of the day. The institute now has more than 30 faculty members from across the university. Together, they research, teach, define and shape bioethics—the study of the moral and ethical quandaries facing health care providers and scientists.
“We are committed to first-rate scholarship in the service of making policies and practices better than they were before,” says Faden, who has been director of Berman since its start and will step aside in 2016.
Medical schools must provide ethics education, and residency programs require training in professionalism, which has an ethics component. However, programs vary widely because the specifics are up to each institution. At Johns Hopkins, Berman faculty members infuse the school of medicine curriculum with robust clinical ethics instruction. And for the past decade, they have been extending this teaching to residency training programs.
The ethics program for medical students, co-directed by urologist Jacek Mostwin and Berman faculty member Gail Geller, begins with the Foundations of Public Health, Epidemiology and Ethics course in the first year and continues with student-led workshops, topic-specific seminars and ethics discussions based on real cases. In addition, students conduct independent projects in an ethics-oriented concentration for first- and second-year medical students, co-directed by Carrese and Geller.
Residents at Johns Hopkins Bayview rotate through the ethics consultation service, working alongside Carrese, who provides guidance on ethical dilemmas encountered in the course of real patient care. A master’s degree in bioethics, new this year, is offered through a collaboration between Berman and the Bloomberg School of Public Health, providing “a historical and contextual understanding of the problems in bioethics, as well as training in analyzing and evaluating moral arguments,” says Travis Rieder, the Berman Institute’s assistant director for education initiatives.
When Clinicians and Patients Disagree
Ethical questions are routine for clinicians. Under what circumstances can parents refuse vaccinations for their children? How can a care team help a terminally ill patient live out his last days in comfort when family members insist on continued interventions? What can be done when a patient with early dementia insists on going home, without fully understanding the dangers?
Berman professors teach students how to identify and frame ethical issues, weigh opposing imperatives, persuade with respect and evaluate patients for decision-making competence. Students are also trained to recognize their own moral considerations, such as a bias against people who are obese.
“We consider ethics knowledge, attitudes and skills as essential,” says Carrese. “It has to be included in the earliest stages of medical education and all the way through. You have to think of it as a central part of your identity as a health care professional.”
Recently, Carrese was invited to give Grand Rounds in the Department of Gynecology and Obstetrics and address the case of a woman who had refused to undergo a cesarean section, even after learning of the dangers to herself and her fetus. As a result, both mother and baby required additional treatment.
Carrese had no simple answer for his audience of about 60 people but gave this advice: “It is OK to educate and persuade, not OK to disengage or coerce.”
Ethics standards and laws evolve. In the 1950s, for example, physicians rarely burdened patients with bad news, such as a cancer diagnosis, or asked pregnant women about their childbirth choices. Today, respect for patient preferences is a cornerstone of ethical care, says Margaret Moon, a Berman faculty member and pediatrician.
But she notes that it’s important to balance respect for patient choices with a duty to promote the patient’s well-being. “Physicians can sometimes be a little intellectually lazy when they yield automatically to the patient’s wishes,” she says. “We used to be too paternalistic, and now we’re swinging in the other direction.”
A particularly interesting problem arises when the patient is an adolescent with definite but ill-considered opinions about treatment, says Moon. She asks medical students in her ethics classes to consider the case of an adolescent who doesn’t want his HIV status discussed with a young woman who visits him daily while he is hospitalized for a related illness. The team is worried that the visitor is a sexual partner who may not be aware of the HIV risk. The patient says the woman is not his partner; the team doesn’t believe him but could be wrong.
The choice: Harming the patient by overriding his wishes and breaking confidentiality based on a duty to warn, or harming the presumptive partner by withholding information. “We teach a framework of analysis that helps us identify the ethics issues and then figure out what we know and what we need to know,” Moon says. “Students start out saying, ‘This is a problem of the public’s health, and the patient’s wishes don’t have to be respected. We can’t have someone going out and infecting people.’ But when we talk about the specifics, they often change their minds.”
Students learn that the care team had worked for years to gain the boy’s trust and guide him through a complex treatment regimen. “Their concern is that if we force him to do something he doesn’t want to do, he’ll alienate himself from care and die,” Moon says. Students also find out that good ethics start with good facts, she says. Case law, the facts of HIV transmission risk and the partner’s responsibility to engage in safe sex are all part of the discussion. “This is a great case for showing how complicated these things get.”
Learn more about the Berman Institute of Bioethics.