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Based on the historical precedents of HIV/AIDS and Ebola, some 25% of healthcare workers may refuse to treat patients with the next novel pandemic pathogen that is perceived as life-threatening, researchers report in a fascinating new attitudinal study.1
“Unfortunately, we have no reason to believe that past won’t be prologue,” says lead author Deepa Narasimhulu, MD, a clinician at Maimonides Medical Center in Brooklyn, NY. ‘’With the emergence of a new pathogen that is thought to be capable of spreading from person to person, we would guess that a similar proportion of healthcare workers may be unwilling to treat affected patients.”
Thus, an open discussion should begin among health educators, hospital administrators, the media, and others who have important roles to play in educating providers about their ethical obligations and the limits thereof. Less “inflammatory” messaging about emerging diseases would certainly help as well, she notes.
“Only by doing all these things can we hope that the lessons of Ebola can result in better, safer, more humane care for victims of epidemics yet to come,” Narasimhulu says.
The researchers assessed healthcare workers’ (HCWs’) attitudes toward care of patients with Ebola virus disease through a self-administered questionnaire-based cross-sectional study of HCWs at two urban hospitals. Of 428 workers surveyed, 25.1% believed it was ethical to refuse care to patients with Ebola and 25.9% were unwilling to provide care to them. In a multivariate analysis, female gender (32.9% vs 11.9%); nursing profession (43.6% vs. 12.8%); ethical beliefs about refusing care to patients with Ebola (39.1% vs. 21.3%); and increased concern about putting family, friends, and coworkers at risk (28.2% vs. 0%) were independent predictors of unwillingness to care for patients with Ebola.
Although beliefs about the ethics of refusing care were independently associated with willingness to care for patients with Ebola, 21.3% of those who thought it was unethical to refuse care would be unwilling to care for patients with the virus, the researchers found. Healthcare workers had concerns about potentially exposing their families and friends to Ebola (90%), which was out of proportion to their degree of concern for personal risk (16.8%). Hospital Infection Control & Prevention asked Narasimhulu to detail some of the findings, which certainly are germane to the current and future emergence of novel infectious diseases.
HIC: Your hypothesis was spot-on that the proportion of HCWs who would be unwilling to care for patients with Ebola would be the same as the proportion of HCWs unwilling to care for patients with HIV/AIDS in the 1980s (25%). Yet Ebola was a known virus and the CDC was initially stating that any hospital could handle an Ebola patient through correct isolation and PPE use. Do you think your results were highly influenced by the transmission to two nurses in Dallas, meaning that more HCWs would have been willing to treat cases before infection control measures failed?
Narasimhulu: While the Ebola virus was known, previous outbreaks were mostly confined to smaller geographic areas, mostly in African nations, were controlled relatively quickly, and the reported number of cases never exceeded a few hundred. During the recent pandemic, the rapid spread of Ebola across national boundaries with several thousand cases reported in a short time was a “new behavior” for the Ebola virus which, coupled with the high fatality rate, made it more worrisome similar to the manner in which anthrax and smallpox are both known pathogens but are still capable of engendering fear.
Given the fact that a disproportionate number of healthcare workers were infected in West Africa during the Ebola pandemic, along with its high fatality rate, a significant proportion of HCWs may have been unwilling to care for Ebola patients even before the events in Dallas. However, the transmission to two nurses in Dallas put a face on the pandemic, and clearly influenced our results. We suspect that more HCWs would have been willing to treat Ebola patients before these events. People tend to respond more strongly to nearby and concrete events as compared to faraway and abstract events, even if the numbers in the latter cases are much larger. As Stalin said, “A single death is a tragedy; a million deaths is a statistic.”
Indeed, following the highly publicized transmission to the nurses in Dallas, there was a panicked reaction fueled by the lay press. Almost every newspaper had a picture of the nurses and a story about the tragedy. There were even stories about how one of the nurse’s dog, Bentley, made it through the Ebola crisis, and how the city spent $27,000 on Bentley. This helped put a face on an unfortunate occurrence, and made it a tragedy to which people were able to relate, especially HCWs who were able to identify with the suffering of an affected fellow HCW. While the nation focused on these two healthcare workers, the flu killed several thousand Americans during the 2014-2015 flu season, as it does every year, and that fact was met with a collective shrug, while the laser focus of the nation remained on Dallas.
HIC: In your opinion, was there a problem with the public health message by the CDC, some element that created healthcare worker distrust that they would be protected?
Narasimhulu: The CDC did have to play catchup after initially announcing that any hospital could take care of Ebola patients. It was subsequently realized that it was not easy — in some cases not feasible — to train the nation’s hospital staffs and to ensure the availability of appropriate protective equipment at all hospitals in the immediate wake of the infection of the two nurses in Dallas. Ebola treatment centers were then identified and equipped to take care of infected patients. While it is easy to point fingers in retrospect, if Mr. Duncan had not landed in Dallas to visit his family, the preparation and expenditure of healthcare dollars in the absence of available evidence of infection in the U.S. may have been criticized as excessive.
The mistrust felt by some HCWs may be related to the way the Ebola messages were presented to them. An article detailing how the CDC made its initial recommendation based on the available evidence, and modified its recommendation in the light of subsequent developments, may have reassured HCWs that the CDC was constantly monitoring the situation and updating its recommendations in order to ensure their safety. On the other hand, articles criticizing the CDC for its incorrect recommendations lead to sense of insecurity and distrust among HCWs. In reality, we were all constantly learning new things about Ebola (e.g., persistence in semen and ocular fluid) that challenged a nimble public health service to respond to rapid changes in knowledge as the epidemic evolved. On the whole, the CDC did an exemplary job.
HIC: Were you surprised given all the advances in AIDS prophylaxis, treatment, and clearly established routes of transmission that 12.6% of participants thought it was ethical to refuse care to HIV patients? I have not heard of reports of healthcare workers refusing to treat those with HIV — do you think this is actually happening?
Narasimhulu: While we were surprised to find that 12.6% of participants in the 21st century thought it was ethical to refuse care to HIV patients, this may not equate with an unwillingness to actually care for these patients. We know from our study that ethical beliefs do not closely mirror willingness to provide care in the case of Ebola. In other words, beliefs about the “right thing to do” do not always determine what people are willing to do. HCWs may merely be staking out the position that providers have a right to choose which patient they see, and they can refuse care because, for example, they feel they lack the expertise to render care for a given ailment. Alternatively, they may be loath to deal with patients they feel have some unnamed social stigma (e.g., HIV infection may disproportionately affect intravenous drug users). We found it useful to use these statistics both as a contrast with attitudes toward Ebola, and with attitudes toward HIV in the antediluvian 1980s.
HIC: Only 44.1% of participants felt that their hospital was well equipped to take care of patients with Ebola. Was this at the heart of much of the HCWs’ fear — that they had, for example, insufficient protective equipment and training to deal with an Ebola patient?
Narasimhulu: We believe that this was indeed an important part (though not the heart) of the reason for the fears of HCWs. We also believe that rather than the actual lack of protective equipment, the inadequate education and training component may have been more of an issue. For example, even if the hospitals had sufficient protective equipment to deal with Ebola patients, lack of a good program to educate and train the HCWs may result in the HCWs being unprepared to take care of Ebola patients. The other reason may have been a sense of insecurity due to the unavailability of support for themselves and their family in the unlikely case that they acquire infection as a result of patient care. Offering some form of temporary disability insurance, life insurance, and assurance that they would be cared for at no cost if they were to acquire the infection may have helped to alleviate the fears of HCWs.
HIC: If they had provided care to a patient with Ebola, 90.8% of participants would be “somewhat” or “very concerned” about putting their family, friends, and coworkers at risk of Ebola even if they (the HCW) were asymptomatic. Could you elaborate a little more on some remedies you suggested for this family concern issue, particularly for female workers, “child care assistance, temporary living quarters to reduce the risk of disease transmission to family members, as well as insurance to protect them and their families should they become ill?”
Narasimhulu: HCWs were worried about how their professional obligations to their patients may conflict with their personal obligations to their families. Hence, while the risk to family and friends was statistically small, it apparently loomed large in the mindsets of frontline staff. This concern was amplified by a lack of programs to support HCWs and their families if the workers were to get sick and become disabled or die as a consequence of performing their duties. In our study, HCWs’ concern for their family and friends was more than their concern for their personal safety. This may be because they thought that, “I signed up for this, but my child did not; do I have the right to put him or her at risk?” While it is not recommended that personnel caring for Ebola patients be isolated if they are asymptomatic, providing them with that option and with the ability to do so for a finite period of time may make them more willing to care for these patients. Providing temporary sleeping quarters, childcare/eldercare assistance may help alleviate concerns about transmitting disease to family and friends. Employer-provided temporary life and disability insurance will serve as a protection for their families in the event that they are infected. Since provision of these facilities to all HCWs may not be feasible, identifying a team of HCWs that will provide care for any suspected patient with Ebola, and providing them with these benefits and options when they sign up may be a reasonable first step. However, it is important to recognize that all HCWs are at risk, since the first encounter, usually in the emergency room, may not be provided by this ”special team” of HCWs. Hence, “the benefits” may need to be extended to cover HCWs in other vulnerable locations as the next step. Finally, in addition to reassuring HCWs that provisions will be available for their families as needed (rarely if ever), HCWs (and, perhaps more importantly, political leaders) need to have the fact that Ebola patients are not infectious when they are asymptomatic reinforced.
HIC: You cite the need for teaching “beyond the unique biology and infection control necessities associated with a given infectious agent, and instead focus on the broader issue of the ethical responsibilities, and limits there upon.” Would this involve hospital administration expressing concern and support for workers and sort of putting the fears and risks “on the table” for discussion? This almost sounds like it would require a culture change in some hospitals, but perhaps that is what is warranted in such extraordinary circumstances?
Narasimhulu: A cultural evolution would be a more appropriate term. From HIV to Ebola to the recent Zika virus, new threats are constantly surfacing. The next “unknown” is lurking right around the corner and we need to prepare and support our healthcare workforce to tackle it. Therefore, we agree with what you surmised; we can’t merely move from epidemic to epidemic and deal with the unique causes of transmission and natural history of sequential diseases. We also need to learn from our social history, and the history of medicine. Young trainees need to be reminded of their obligations as healers in difficult circumstance.
Financial Disclosure: Senior Writer Gary Evans, Associate Managing Editor Dana Spector and Nurse Planner Kay Ball report no consultant, stockholder, speaker’s bureau, research, or other financial relationships with companies having ties to this field of study. Consulting Editor Patrick Joseph, MD, is laboratory director of Genomic Health Inc, CareDx Clinical Laboratory, and Siemens Clinical Laboratory.