Program Design: Discussion 1 Ethics
Consider the article
The Ethics of Empowering Patients as Partners in Healthcare-Associated Infection Prevention
, particularly the inclusion of patients in the process of working to reduce healthcare-associated infections (HAIs). Consider some of the ethical implications with regard to patient autonomy and patient welfare when we do not involve patients in specific decisions regarding known risk (e.g., surgical infection risk).
The Ethics of Empowering Patients as Partners in Healthcare-Associated Infection
Prevention
Author(s): Daniel Sharp BA, Tara Palmore MD and Christine Grady RN PhD
Source: Infection Control and Hospital Epidemiology , Vol. 35, No. 3 (March 2014), pp. 307-
309
Published by: Cambridge University Press on behalf of The Society for Healthcare
Epidemiology of America
Stable URL: https://www.jstor.org/stable/10.1086/675288
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https://www.jstor.org/stable/10.1086/675288
infection control and hospital epidemiology march 2014, vol. 35, no. 3
c o m m e n t a r y
The Ethics of Empowering Patients as Partners in
Healthcare-Associated Infection Prevention
Daniel Sharp, BA;1 Tara Palmore, MD;2 Christine Grady, RN, PhD1
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
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 inter-
ventions.2,3 Despite increasing attention to prevention, sur-
prisingly little guidance or literature has addressed whether
and how to inform patients and empower them to contribute
to HAI prevention. Considerations of patient autonomy sup-
port 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 out-
comes.4
patient empowerment and autonomy
Two deeply intertwined ethical considerations—patient au-
tonomy 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. Hos-
pitalized 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 con-
sidered in medical decisions. Empowering patients does not
require disclosing all risks, regardless of magnitude and prob-
ability. However, patients should be provided with infor-
mation 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 pro-
motes patient autonomy.
HAIs often constitute a material risk, although this deter-
mination 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 pa-
tients 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 pro-
cedures and devices such as central venous and urinary cath-
eters, healthcare-associated pathogens can affect hospitalized
patients even in the absence of procedures, making inter-
vention-specific disclosure inadequate. A larger set of insti-
tutional 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 per-
formed. 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 de-
sirable. 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 rea-
sons—still lack substantive options, empowerment with in-
formation broadens the scope of relevant decisions.
Finally, some may argue that HAI information might pro-
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308 infection control and hospital epidemiology march 2014, vol. 35, no. 3
duce undue stress without expanding patients’ rational op-
tions 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 le-
gitimate, 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. Nev-
ertheless, disclosing surgical risks is essential to ensuring in-
formed 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 pa-
tient decision making. Information about HAIs could em-
power patients to make day-to-day decisions, such as about
personal hygiene, specific procedures and interventions, in-
teractions with care providers, and adherence to recommen-
dations. Knowledge about HAI risk, transmission, and pre-
vention 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 empowerment 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 ex-
ample, is a major focus of HAI prevention efforts. Soap con-
sumption, 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 en-
gagement improves hand hygiene.10,11
Some patients are uncomfortable holding providers ac-
countable. 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 in-
fluence 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 in-
stitutions and providers. Nonetheless, evidence suggests that
certain strategies could improve patient involvement. First,
lack of information about infections was an important pre-
dictor of patient reluctance to stop healthcare personnel who
were not wearing gloves or masks;14 simply providing infor-
mation regarding risk could improve patient engagement.
Second, engagement creates an environment more conducive
for patients to hold providers accountable. For example, pa-
tients were more willing to ask providers about hand hygiene
if instructed to do so or educated on hand hygiene by health-
care providers.15,16 Making patients true partners means arm-
ing them with information.
Further research is needed on the effects of patient en-
gagement strategies on outcomes and infection rates. How-
ever, preliminary evidence suggests that such strategies can
be an important part of a multimodal infection control pro-
gram.4 This perspective accords with many emerging cam-
paigns on the issue.10,17
practical considerations
concerning disclosure
HAI information should be offered in a digestible, nontechni-
cal format that patients can be reasonably expected to un-
derstand. 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. Fur-
thermore, given differences in HAI risk across institutions,
emphasis should be placed on those infections that pose par-
ticular 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 preven-
tion 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 in-
fection 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 model for disclosure
A multilevel approach to informing patients would include
publicly available data, standardized and hospital-specific in-
formation at admission, and the opportunity for face-to-face
conversations with healthcare professionals. Such an ap-
proach should be integrated into larger institutional HAI pre-
vention 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 in-
formation about a recent carbapenem-resistant Enterobac-
teriaceae cluster. This brief document, provided to inpatients
with the general admissions packet, invites patients to discuss
HAI questions with their providers. Implementing a multi-
tiered approach to disseminating HAI information and con-
structing 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 309
further research
Further research is needed on patient understanding of the
causes, risks, and preventive strategies concerning HAI; cur-
rent 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, moti-
vated 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, Na-
tional 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 (cgrady@nih.gov).
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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mailto:cgrady@nih.gov
http://www.cdc.gov/HAI/pdfs/hai/infections_deaths
http://www.cdc.gov/HAI/pdfs/hai/infections_deaths
http://whqlibdoc.who.int/publications/2009/9789241597906_eng
http://whqlibdoc.who.int/publications/2009/9789241597906_eng
http://www.cdc.gov/HAI/patientSafety/patient-safety.html
http://www.cdc.gov/HAI/patientSafety/patient-safety.html
http://www.shea-online.org/Patients.aspx