Commentary: The Ethics of Empowering Patients as Partners in Healthcare-Associated Infection Prevention Author(s): Daniel Sharp, BA; Tara Palmore, MD; Christine Grady, RN, PhD Source: Infection Control and Hospital Epidemiology, Vol. 35, No. 3 (March 2014), pp. 307-309 Published by: The University of Chicago Press on behalf of The Society for Healthcare Epidemiology of America

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infection control and hospital epidemiology

march 2014, vol. 35, no. 3

commentary

The Ethics of Empowering Patients as Partners in Healthcare-Associated Infection Prevention Daniel Sharp, BA;1 Tara Palmore, MD;2 Christine Grady, RN, PhD1

Healthcare-associated infections (HAIs) affect approximately 2 million hospitalized patients and cause roughly 100,000 deaths annually in the United States alone.1 Many HAIs are preventable through evidence-based infection control interventions.2,3 Despite increasing attention to prevention, surprisingly little guidance or literature has addressed whether and how to inform patients and empower them to contribute to HAI prevention. Considerations of patient autonomy support informing patients about the risk of HAIs. Empowering patients as part of a multifaceted HAI prevention strategy might be beneficial in reducing HAIs and improving outcomes.4

patient empower ment and autonomy Two deeply intertwined ethical considerations—patient autonomy and patient welfare—motivate empowering patients for HAI prevention. “Autonomy” refers to a person’s ability to pursue his or her own life plans free from controlling, coercive, or undue influence from others. Although a basic tenet of bioethics,5 promoting patient autonomy can seem an abstruse demand in the complex hospital environment. Hospitalized patients are often vulnerable, and vast asymmetries in medical knowledge exist between providers and patients. These conditions can jeopardize adequate consideration of patients’ values and interests. Actively empowering patients, ensuring them an opportunity to act in light of their values and interests, supports patient autonomy. Providing patients with information relevant to medical decisions is essential to this process. Risks are among the most salient type of information considered in medical decisions. Empowering patients does not require disclosing all risks, regardless of magnitude and probability. However, patients should be provided with information when the risks in question are material, that is, when they could alter the decisions of reasonable persons who can respond in some beneficial way. Determining what constitutes a material risk is complicated and context dependent, but these difficulties do not undermine the principle in clear

cases. Disclosing relevant risks that can be acted upon promotes patient autonomy. HAIs often constitute a material risk, although this determination depends on a wide variety of factors, including the particular patient and the institution. In some settings, the risk of acquiring HAIs is as high as 10%.6 Patients might consider these risks before making high-stakes decisions, such as choosing a hospital or agreeing to a procedure, and more mundane decisions, such as hygiene and how to interact with healthcare professionals. HAI information can empower patients to make a wide range of decisions about their care accordingly. Some might believe that disclosing HAI information only prior to procedures and interventions suffices to preserve patient autonomy. Although many HAIs are linked to procedures and devices such as central venous and urinary catheters, healthcare-associated pathogens can affect hospitalized patients even in the absence of procedures, making intervention-specific disclosure inadequate. A larger set of institutional and environmental risks influences HAI transmission and acquisition. Although a patient might not experience the adverse effects of a hospital-acquired pathogen until a device is inserted, prevention with proper hygiene and other safety precautions must begin well before the procedure is performed. Informing and empowering patients at admission as well as prior to interventions and devices can best facilitate this process. Others might object that empowering patients will have little effect since they lack substantive options. The option of refusing to seek care in a hospital is seldom realistic or desirable. However, a patient might be able to select the most appropriate institution for her care. In one telephone survey, 93% said that knowing infection rates would influence their selection of a doctor or hospital.7 Although many patients— for a variety of practical, economic, and geographical reasons—still lack substantive options, empowerment with information broadens the scope of relevant decisions. Finally, some may argue that HAI information might pro-

Affiliations: 1. Department of Bioethics, National Institutes of Health Clinical Center, Bethesda, Maryland; 2. Hospital Epidemiology, Office of the Director, National Institutes of Health Clinical Center, Bethesda, Maryland. Received November 7, 2013; accepted November 24, 2013; electronically published February 5, 2014. This article is in the public domain, and no copyright is claimed. 0899-823X/2014/3503-0016. DOI: 10.1086/675288

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infection control and hospital epidemiology

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duce undue stress without expanding patients’ rational options in any meaningful way. For example, fewer patients might go to a hospital fearing contraction of infections, or such information might amplify stress. However, limited legitimate, empirical data support these concerns. Furthermore, except in extreme cases, such concerns are insufficient to override an obligation to disclose risks. Patients informed about surgical risks, for example, may be less inclined to undertake surgery and more likely to experience stress. Nevertheless, disclosing surgical risks is essential to ensuring informed decision making and promoting autonomy. HAIs should be treated similarly. Potential adverse consequences of a limited nature stemming from patient response to risk disclosure should not generally override moral considerations in favor of disclosure, although further research is needed to better understand patient comprehension and reactions to HAI information. Importantly, this objection rests on a narrow view of patient decision making. Information about HAIs could empower patients to make day-to-day decisions, such as about personal hygiene, specific procedures and interventions, interactions with care providers, and adherence to recommendations. Knowledge about HAI risk, transmission, and prevention methods could inform and perhaps influence many of these broader decisions. An expansive view of the nature and type of patient decisions motivates a compelling case for providing decision-relevant information on HAIs.

patient empower ment and welfare Empowering patients could also potentially improve patient safety and welfare by influencing behaviors that could prevent HAIs. Improving healthcare personnel hand hygiene, for example, is a major focus of HAI prevention efforts. Soap consumption, an indirect measure of hand hygiene, increased by 34% to 94% when patients asked providers whether they washed their hands.8,9 Other studies confirm that patient engagement improves hand hygiene.10,11 Some patients are uncomfortable holding providers accountable. In a UK study, all participating patients asked nurses whether they washed their hands, yet only 35% asked physicians.8 Many demographic and illness-related factors influence patient willingness to be involved in patient safety initiatives;12,13 some patients are simply unable or unwilling to participate in empowerment strategies. The obligation to prevent HAI remains squarely with institutions and providers. Nonetheless, evidence suggests that certain strategies could improve patient involvement. First, lack of information about infections was an important predictor of patient reluctance to stop healthcare personnel who were not wearing gloves or masks;14 simply providing information regarding risk could improve patient engagement. Second, engagement creates an environment more conducive for patients to hold providers accountable. For example, patients were more willing to ask providers about hand hygiene

if instructed to do so or educated on hand hygiene by healthcare providers.15,16 Making patients true partners means arming them with information. Further research is needed on the effects of patient engagement strategies on outcomes and infection rates. However, preliminary evidence suggests that such strategies can be an important part of a multimodal infection control program.4 This perspective accords with many emerging campaigns on the issue.10,17

practical considerations concerning disclosure HAI information should be offered in a digestible, nontechnical format that patients can be reasonably expected to understand. Some general background information about types of HAIs and their common causes is essential. Patients should be informed that the problem is systemic to prevent them from viewing HAIs as unique to a single institution. Furthermore, given differences in HAI risk across institutions, emphasis should be placed on those infections that pose particular problems in the facility or department. Risk information materials should avoid complex statistics, describe populations and procedures associated with high HAI risk, and identify common complications arising from HAIs to empower patients to recognize and report symptoms. Hospitals should inform patients about institutional prevention measures to reassure patients that action is being taken and to inform them about policies and practices that might affect their care, such as surveillance cultures and isolation precautions. Finally, patients should be informed of steps they might take to minimize their own risk of acquiring an infection or complications that might ensue. Useful guidelines and patient education materials have been developed by the Centers for Disease Control and Prevention,18 the Society for Healthcare Epidemiology of America,19 and others.

a m odel for disclosure A multilevel approach to informing patients would include publicly available data, standardized and hospital-specific information at admission, and the opportunity for face-to-face conversations with healthcare professionals. Such an approach should be integrated into larger institutional HAI prevention strategies, and patients should be engaged through a variety of different means. The National Institutes of Health Clinical Center, for example, created a patient education flier comprising general HAI information as well as specific information about a recent carbapenem-resistant Enterobacteriaceae cluster. This brief document, provided to inpatients with the general admissions packet, invites patients to discuss HAI questions with their providers. Implementing a multitiered approach to disseminating HAI information and constructing straightforward information sheets and displays need not be particularly complicated, resource intensive, or unduly demanding.

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ethics of empowering patients in hai prevention

further research Further research is needed on patient understanding of the causes, risks, and preventive strategies concerning HAI; current hospital disclosure policies; the effect of disclosure on empowerment, prevention, and reducing HAI prevalence; and consequences to others, including patients, visitors, healthcare workers, and hospitals as businesses.

conclusion Healthcare facilities should inform patients about HAI risk, prevention, and hospital policies to empower them to act as partners in creating a safer healthcare environment, motivated by respect for patient autonomy and promotion of patient welfare. Such a strategy could go a long way toward enabling patients to make important choices and help make health care safer for them and other patients.

acknowledgments We thank Alan Wertheimer and anonymous reviewers for their helpful comments. Financial support. The authors were funded by the Clinical Center, National Institutes of Health. Potential conflicts of interest. All authors report no conflicts of interest relevant to this article. All authors submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest, and the conflicts that the editors consider relevant to this article are disclosed here. Address correspondence to Christine Grady, RN, PhD, Department of Bioethics, National Institutes of Health Clinical Center, Building 10, 1C118, Bethesda, MD 20892 ([email protected]). The views expressed are those of the authors and do not necessarily reflect those of the National Institutes of Health, the Public Health Service, or the Department of Health and Human Services.

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