Responsible care in times of antimicrobial resistance: towards a normative ethical framework guiding policy formation and case deliberation

Antimicrobial resistance (AMR) threatens effective treatment of infections and infectious disease, now and in the future. This may imply that infections that used to be relatively innocent now pose a severe threat to patients and to public health. Dutch health care facilities therefore follow strict policies to prevent the introduction and spread of AMR. The Netherlands have put much effort in developing a global approach and an international joint agenda to fight antibiotic resistance. As important as such prevention is, it may have burdensome implications for infected patients and healthy persons in whom a resistant pathogen has been colonised: they may feel stigmatised, face restrictions in their work or private life, or might be refused access to, for example day care, etc. Current guidelines can be understood as seeking a balance between the public interest of prevention versus the best interests of carriers, but the ethical dimensions of this conflict remain largely implicit. As a result the guidelines give public health professionals little practical guidance on how to make difficult choices in the face of AMR risks, and they may lead professionals to see the dilemmas as technical rather than ethical. Moreover, if the ethical dimensions remain implicit, this also constrains the possibilities for those affected by AMR infection control measures to gain insight into how these decisions are arrived at. AMR cases are further complicated by financial and institutional interests of a health care facility. The question how to deal with practical dilemmas in this context is becoming more and more urgent. Antimicrobial resistance will be a central topic during the Dutch EU presidency in the first half of 2016 and part of the strategy will be to intensify the approach to prevent AMR in the coming years. This project aims to develop a framework that guides ethical deliberation about responsible preventive and health care policies for persons carrying a resistant pathogen. The framework will encompass specific indicators for good AMR care, a deliberation structure for professional decision-making, and procedural guidance aiming at transparent and fair deliberation. Moreover, the framework will refer to a series of documented case discussions in which ethical arguments and evaluations are made explicit. This set of case discussions is meant to serve as illustrative background against which new cases can be compared and evaluated. Importantly, the “example” case discussions will not necessarily yield the “right” answer. Often, ethical deliberation leaves room for several options that could be morally justified in a specific case. The added value of the example case discussions is to show how professionals can arrive at a morally reasonable AMR prevention measure in a structured and transparent way. These outcomes could of course still be contested, but then it is at least clear which arguments should be taken into account in such a debate. The project aims at broadening the scope of the debate on AMR prevention from a mostly scientific debate to include ethical and societal dimensions of antimicrobial resistance. Two subjects in this debate require more in-depth analysis. One of the key principles in legal and ethical approaches to infectious disease control is the idea that restrictive or intrusive interventions should be as ‘small’ as possible: other things being equal, professionals should always opt for the least intrusive alternative. We discuss the justification and scope of this principle in light of recent critiques that have been put forward in the bioethical literature, and we explore the practical implications of these critiques for the usefulness of the principle and the implications for both AMR care and control. A second central topic is concerned with the question how far societies should go in ruling out AMR infection risks. Indeed, any judgement about what kind of interventions are proportional and ‘least intrusive’ presupposes an idea about what level of AMR risk is deemed acceptable. We explore factors that should be taken into account in judgements about what AMR infection risks are acceptable. This normative-ethical project accompanies and scaffolds a recently started study “Ethical and Societal Impact of AMR” that is carried out by the Centre of Infectious Disease Control of RIVM (National Institute for Public Health and the Environment) which (a) aims to present an overview of ethical/societal problems that arise in AMR care and control, (b) combines quality of care and public health ethics frameworks, and (c) aims at defining quality indicators and policy recommendations for AMR care. The proposed ZonMw study supports and complements the largely descriptive and conceptual RIVM study with a much-needed normative component.