Problems with Access to Healthcare

A clear implication of AMR control measures involves problems with access to healthcare. During their consultations, several carriers asked about being faced with postponement of planned surgery, about cancellation of admission to rehabilitation, and about being denied access to dental clinics. A nursing home, for instance, wanted to deprioritize a person at the top of the waiting list because this person was carrying a multidrug-resistant organism. A medical daycare center refused to admit a child because of persistent carriage.

Restrictions within Healthcare Facilities

Another distinct implication of AMR control measures involves restrictions within healthcare facilities. Several consultations involved questions about carriers of methicillin-resistant Staphylococcus aureus (MRSA) in care facilities in which elderly carriers were banned from organized social activities or not allowed to dine at the same table with fellow residents. In medical daycare facilities, children who were carriers were banned from group activities or kept away from their peers, and in a psychiatric institution, a group of patients was placed in a closed ward because of carriage. Other inquiries concerned privileges that carriers received; for instance, carriers in nursing homes were allocated a single room or a private bathroom.

Negative Implications for Daily Life

The control measures also affected daily life. One inquiry concerned a MRSA-positive child who faced restrictions after returning to school because a classmate was a cystic fibrosis patient for whom acquiring a MRSA infection would constitute a health risk. Another inquiry was about adoption of a child with special health needs; the family had already adopted their first child with a previous diagnosis of persistent MRSA carriage, and they hesitated to adopt a second child because the MRSA would most likely be transmitted to that child, bringing extra MRSA-associated health risks. Also, parents of a healthy MRSA toddler were confronted with a daycare center caregiver who refused to attend to their child for fear of transmitting MRSA to her newborn baby at home. Some inquiries concerned interaction with animals; for instance, a family struggled with persistent MRSA carriage and 1 of their children was denied access to a medical daycare center. They were advised to relocate or abandon their cats, which were thought to be the source of reinfection.

Negative Implications for Carriers Who Work in Healthcare

Control measures can also have negative implications for those who work in healthcare. We found cases of healthcare workers (HCWs) who were restricted at work, banned from work, and faced income loss. For example, a nurse who was a carrier was assigned administrative tasks instead of patient care, thereby missing out on the substantial financial benefits that come along with performing patient care during night and weekend shifts. A temporary employee’s contract was not renewed because of past carriage, and a fifth-year medical student discontinued training because of a chronic MRSA infection. HCWs were also pressed to cooperate with testing and treatment. A temporary healthcare employee was asked to show proof of being MRSA negative, and MRSA-positive nurses were pressed to cooperate with intensive eradication treatment consisting of daily scrubbing of the skin and taking of oral antimicrobial drugs. In several instances, MRSA-negative HCWs were excluded from healthcare work because in their private life they cared for a MRSA-positive child or parent.

Negative Implications for Close Contacts of HCWs

Infection control measures for HCWs can also affect their family members and other contacts. For example, HCWs with MRSA were asked to disclose the names of their close contacts outside the hospital. Contacts needed to cooperate with MRSA screening and, if test results were positive, undergo eradication treatment. In some instances, such measures had far-reaching consequences for family members. For instance, in a single-income household, young children were subjected to very intensive MRSA eradication in order for the main breadwinner to be able to secure employment. In another case, contact screening started by the employer of a nurse who was a carrier included screening of the nurse’s children. One child was physically handicapped and visited a medical daycare center. When results indicated that he was a carrier, he was denied access to this medical daycare center for several months.

The negative implications for carriers of multidrug-resistant organisms were not only defined by the outcome of the control measures advised in the policies but also were further enhanced by focus on collective benefits with less emphasis on harm for carriers (1) and by strong concerns with communication and disclosure when applying the policy (2). Several inquiries resulted in implementation of control measures that were more stringent than those prescribed by national policies.

Negative Implications because of Overemphasis on Collective Benefits

Inquiries reflected a strong focus on the benefits of AMR control measures and ignoring of the potential harm for carriers. Several inquiries reported control measures that went beyond the already stringent national policies. For example, in 2015–2016, a large influx of war refugees from Syria to the Netherlands caused some hospitals to demand that their employees refrain from volunteer work with refugees outside their working hours because of the possibility that they could be exposed to a multidrug-resistant organism by doing such work. In addition, a pig farmer who had undergone heart valve surgery was advised not to go back to work on the farm because of the small risk of contracting livestock-associated MRSA, which would make follow-up visits more complicated to schedule for the hospital.

Negative Implications because of Concerns about Communication and Disclosure

Some inquiries reflected outcomes that were motivated by concerns about disclosure and communication rather than actual risk for transmission of the multidrug-resistant organisms. For instance, a MRSA-positive child was not allowed access to a medical daycare facility, not because of the risk to other children, which was considered to be small, but because the facility felt an obligation to inform all other parents. The parents of the carrier, however, insisted on nondisclosure for fear of stigma. Another inquiry concerned a nurse who lived on a livestock farm and was therefore at high risk of contracting MRSA, a risk that was well-known and had been accepted by her employer for years. When, by accident, the nurse was screened and carriage was confirmed, she was no longer allowed to work at that facility. This response was not motivated by the risk for transmission—the employer acknowledged that she presumably had been carrying MRSA for a long time and had never caused an outbreak—but because the institution was concerned about the consequences should MRSA carriage of a hospital employee become public.

Relevance of Carriage for the Carriers

Patients in this study were asymptomatic carriers for whom carriage did not affect their health. Some might have had other health conditions, but they were not ill from the drug-resistant microorganism they carried. Thus, carriage differs from most communicable diseases, in which the health of the persons carrying the microorganism is threatened or affected by the infection. Ebola virus infection, for instance, forms an acute threat to the health of the patient, who is in immediate need of treatment and medication while threatening the health of others, including health personnel. Other infectious diseases can also involve asymptomatic carriage; moreover, multidrug-resistant organisms can certainly also cause infections and thus illness. In fact, the proactive screening and preemptive use of control measures that are common in the Netherlands probably caused an overrepresentation of inquiries concerning these “carriers without multidrug-resistant organism infection” (2,19,20). What remains ethically noteworthy and relevant for preemptive and reactive AMR control strategies is that, although all carriers are at risk for their carriage resulting in clinical infection, multidrug-resistant organisms primarily threaten a specific subgroup of vulnerable patients in hospital settings. The extent to which multidrug-resistant organisms contribute to death has been debated and seems to remain limited to those with severe illness and concurrent conditions (28–30). Studies addressing multidrug-resistant gram-negative infections, for instance, show substantial diversity in the outcomes. It can be concluded that mortality rates are higher among those infected by multidrug-resistant gram-negative bacteria; however, concurrent conditions and severity scores are more commonly identified as predictors of death (28–30). From a broader public health perspective, the health threat of multidrug-resistant organism carriage thus appears limited.

Healthcare-Associated Relevance

A noteworthy finding is that carriage became relevant almost exclusively in healthcare-associated settings. In schoolchildren, for example, carriage was problematic because a classmate had a chronic illness and needed regular hospital checkups. A MRSA-positive family member is only problematic in the context of work in healthcare. Again, most outbreaks of infectious diseases are problematic within healthcare-associated settings, because these outbreaks lead to high morbidity and mortality rates, putting pressure on limited resources and putting HCWs in direct danger of contracting disease. Control measures for most communicable diseases therefore aim to regulate these threats (25). Outbreaks of multidrug-resistant organism infections, however, do not cause high morbidity and mortality rates (21,28–30). Public health measures aim to prevent introduction and further transmission of multidrug-resistant organisms in (some) healthcare-associated settings (2). Whether a carrier is subject to control measures does not depend on the severity of the pathogen but only on the likelihood that the resistant pathogen will be transmitted to a healthcare setting where vulnerable patients are cared for.

Multidrug-Resistant Organism Carriage as a State of Being

A salient feature of the inquiries was that carriage could last for a long time, making implementation of control measures even more burdensome. Some persons were colonized for such a long period, some even starting at birth, that it could be argued that the resistant microorganism was now part of their regular flora. The inquiries showed that, after a person receives a diagnosis of being a carrier, the label persists. It was often very difficult to eradicate the bacteria; moreover, there was no standard for determining whether a person was no longer a carrier. From an ethical perspective, persistence is particularly salient because inevitably, within the open population but also in healthcare settings, there will be a substantial group of unidentified asymptomatic carriers. Therefore, the severe restrictions faced by known carriers may not only be burdensome and stigmatizing but may also be considered unfair.

The Carrier as a Nondefining Factor in a Slowly Evolving Threat

In all cases analyzed for this study, the individual carrier was a possible link in the chain of transmission but certainly was not a central factor in the emergence and spread of multidrug-resistant organisms. The long-term clinical effect of multidrug-resistant organisms may be high, but it was not obvious that imposing restrictions, either preemptive or reactive, on individual carriers played a crucial role in controlling and mitigating that effect. The immediate threat posed by individual carriers was limited, certainly if compared with the role of conditions caused by other microorganisms, such as Ebola virus disease or meningococcal meningitis, for which devastating effects become evident in days, weeks, or months (25).