The family of Thomas Eric Duncan, the Liberian man who died Tuesday of Ebola after arriving in Dallas late last month, said they are filled with “sorrow and anger” and want an impartial probe into “all aspects of his care” after President Obama last week admitted “missteps” in the US response.
Mr. Duncan arrived in the US on Sept. 20 from Liberia, the West African nation first colonized by freed US slaves that is at the center of the current outbreak.
He went to the hospital on Sept. 25, but was sent home on Sept. 26 with a standard antibiotic cure. He returned on Sept. 28 by ambulance after becoming extremely ill. He was the first person to be diagnosed with Ebola outside of Africa.
Duncan, a civil war survivor in his 40s, quickly became the face of Ebola in the US, as anxiety coursed through Dallas and dozens of other people who had direct and indirect contact with Duncan were either quarantined or closely monitored.
Authorities say this is a critical week for the national Ebola response as those people, including his closest friends and family, remain within the 21-day incubation period. None have fallen ill so far.
And while doctors desperately tried to save Duncan’s life, his death stands in stark contrast to the plight of several Americans, including aid workers and doctors, who have survived the illness after being treated in the US. More than 7,000 people have been diagnosed in the largest-ever such outbreak in West Africa, and about half of those victims died.
The past week was “an enormous test of our health system, but for one family it has been far more personal – today they lost a dear member of their family,” said Dr. David Lakey, the commissioner of the Texas Department of State Health Services, in a statement. “We’ll continue every effort to contain the spread of the virus and protect people from this threat.”
An ethical debate has emerged over a decision that some say was too long delayed to try an experimental drug on Duncan, especially as he was given a different serum than the one used on the American victims who survived. The makers of ZMapp, the experimental Ebola antibody serum that may have helped two US aid workers survive the illness, said it had run out of the drug and that it will take months to make more.
Instead, doctors gave Duncan an antiviral drug used for other illnesses, but which had never been tested for Ebola in humans. Medical experts say counterproductive side effects likely kept doctors from giving Duncan the drug earlier, only administering it after it became clear his condition was worsening.
The family’s concerns about Duncan’s care, friends say, mostly center on why Duncan was sent home at first, especially given conflicting reports from the hospital about the extent to which they were aware that Duncan had traveled from the Ebola “hot zone.”
“The family wants to better understand the process of how [Duncan's original release from the hospital] happened,” Jay Pritchard, a church friend who is helping them with public relations, tells the Monitor.
Authorities say Duncan failed to disclose on travel permission forms that he had had contact with an Ebola-stricken pregnant woman in the days before his departure from Liberia to the United States. Meanwhile, Texas Health Presbyterian Hospital, where he was treated, has changed its explanation several times, acknowledging that officials there did know on his first visit that he had come from West Africa. Seeing how sick he was, his family at one point called the Centers for Disease Control before putting Duncan on an ambulance.
Duncan’s case may become important going forward, because of the questions it has raised about rationing and who gets what experimental drug – and the possible negative impact of such "compassionate use" waivers that the FDA has to sign off on.
Indeed, “[Duncan's treatment and death] emphasizes the need to rapidly reconsider the decisions to use untested experimental or investigational agents in patients in an unregulated and seemingly random way,” says Philip Rosoff, a Duke University medical ethicist and author of “Rationing Is Not A Four-Letter Word.” The problem “is that we now don’t know in this case whether the medication Duncan was given was ineffective or too late or he wasn’t given enough, or whether the drug actually contributed to his death.”
“Unless we do thorough clinical trials, as difficult as that may be to accept under the conditions of this seemingly out of control epidemic, we’re not going to find out how to treat the patients of tomorrow, much less the patients of today,” Dr. Rosoff says.
At the same time, limited quantities of experimental drugs and subsequent rationing could become part of a broader pattern in the global Ebola response.
Ethically, Rosoff says, it’s appropriate in a disease outbreak to treat medical workers and other frontline response staff first, given that they’re in the best position to help stop the spread.
But after that first determination on who gets what experimental drug, the ethical situation gets more complicated, especially given that “desperate people are willing to take desperate measures,” as he told Voice of America.
“Some people think that a lottery or coin toss mechanism is the fairest,” he said in a recent interview with the news service. “Other people think first-in-line – first-come, first-served – might be the fairest. The problem with first-come, first-serve is that tends to privilege people who can get there first, and that’s sometimes people who have access to information or transportation.”