Medical Ethics: Conflicting Obligations
Beginning in 1932, the US Public Health Service conducted an infamous research project—the Tuskegee Syphilis Experiment—designed to follow the course of untreated syphilis. The unwitting participants were poor African-American men in Alabama, who were never told they had the disease. The experiment went on for 40 years, with the men receiving no treatment even after the discovery of life-saving penicillin in the 1940s. Many died of the disease, having infected their partners and fathered children born with syphilis.
As a graduate student of medical history, Yoram Unguru developed an interest in ethics after learning about events such as the Tuskegee Syphilis Experiment.
“It intrigued me how this profession that I viewed as noble was leveraged and prostituted,” said Unguru, who is Chair of the ethics committee at the Herbert & Walter Samuelson Children’s Hospital at Sinai in Baltimore, Maryland. “Once I got to medical school, I learned that ethics went much further than just Tuskegee or the involvement of doctors in Nazi Germany.”
Unguru went on to study medicine at Technion—the Israel Institute of Technology—and after his pediatric residency, did a fellowship at the Berman Institute of Bioethics at Johns Hopkins University. He is currently a physician in the Pediatric Hematology/Oncology Division at Children’s Hospital at Sinai in Baltimore, Maryland.
“Ethics is part of what we do every day, from the treatment decisions that are made in the clinic to our research,” he said. “You can’t divorce ethics from medicine and you certainly can’t do that in my field of pediatric hematology/oncology.”
In the clinical world, ethics is about conflicting moral obligations. The rights of Unguru’s young patients is a paramount concern and he has written extensively on the role that children should have in the decision-making process.
“You want to respect the child’s evolving ability to make decisions, but he or she may lack the necessary experience and not understand the consequences. Ethics is about justifying whether a particular decision is right or wrong.”
One question is whether kids should be consulted about their treatment and if so, the limits to their involvement.
“How do we reconcile respecting the parents’ wishes with what the kid wants? What happens if they disagree? Being able to navigate that type of situation with the appropriate tools is as important as doing a physical workup on a kid who comes in with a cough or a limp.”
Unguru sees children from infancy to young adulthood, with some patients as old as 25. But involving these patients in decision-making is not primarily about age. It depends on the child, the decision, and the gravity of the consequences of that decision.
“Age is one factor, but not the most determinative. A younger child who has been dealing with a chronic disease all her life will probably be better equipped to make meaningful decisions about her treatment than a healthy older child coming in with his first diagnosis.”
All hospitals are required to have an ethics committee, but ethics is not typically funded and doctors can’t bill for consults of a purely ethical nature. As a result, Unguru observes, ethics is an afterthought in most places.
Despite needing his clinical work to take priority, he is grateful that the hospital recognizes the value of what the ethics committee does and gives them the time to do it.
While most hospital committees tend to be filled with providers and physicians, Unguru is keen on expanding the footprint so that ethics is omnipresent in his department.
“We have clinicians on the committee—doctors, nurses, and pharmacists—but we also have social workers, nutritionists, lay members, students, and residents.”
Anyone with a vested interest in the care of the patient or who has an ethical concern can call on the committee. The first step is to determine if the concern is, indeed, an ethical issue. Sometimes it’s an issue of scope of practice or professionalism. When it is an ethical issue, several committee members attend a consult. They listen and investigate, then make recommendations to the clinical team. Later, they present each of their consults to the larger committee at its regular meeting, providing an opportunity for others to contribute.
Often, the ethical issue arises because of a breakdown in communication between the care team and the patient and their family. In those cases, Unguru likens the committee’s job to diplomacy.
“We arbitrate, we listen,” he said. “If we expect our patients to listen to us, we have to start by listening to them. Clearing up problems can be as straightforward as getting everybody in the same room and getting the caregivers to speak plain English, not med speak.”
Unguru acknowledges that pharmaceutical companies can’t be involved in discussions of ethical decisions because they have separate responsibilities beyond clinical decision-making.He does believe, however, that the pharmaceutical industry has a role to play in the ethics surrounding the allocation of scarce resources, which includes drug shortages.1
“At a minimum, pharma should serve as a gatekeeper, assuring that hospitals and GPOs (group purchasing organizations) do not overorder and hoard medications that are known or expected to be short,” he said. “Pharma can do a better job making sure that local distributors play fairly when it comes to drug distribution. Within reason, pharma should be committed to continuing to produce lifesaving medications for which there is no alternative. I think a better place for them would be a national drug-shortage committee or a professional organization drug-shortage committee.”
“Ethics is going to have an integral role in personalized medicine, especially when it comes to treatments that affect the germline,” he stated. “The technology is often way ahead of our ability for intervention. There are a lot of hard questions that require thoughtful analysis.”
You can hear the compassion that Unguru has for the welfare of his patients in his voice, as well as his hope.
“Each successive decade has seen more and more kids with cancer survive. “Being able to be honest and to be present—almost omnipresent—is required. If you put yourself in the shoes of a kid who has cancer, they don’t care that it’s a weekend or late at night if they have a question. Yes, there are hard times, but kids want to be kids. Something in their mind as trivial as cancer is not going to get in the way.”
- 1Fotheringham, Scott. “The Catastrophe of Drug Shortages in Pediatric Oncology.” Pharmaceutical Engineering 37, no. 1 (January-February 2017): 33–34.