The Peggy Lillis Foundation promotes awareness of Clostridium difficile (C. diff) infections nationwide. It was founded after Christian’s mother, Peggy, died in 2010 of sepsis from a C. diff infection she contracted after taking oral antibiotics for a possible abscess. Christian, a consumer and patient advocate, is an adviser to the Patient Voice Institute and Gulf Coast C. diff Collaborative, and is a member of the Consumers Union Safe Patient Project and Chicago Area Patient-Centered Outcomes Research Network.

NQF: Why was it important to you to be involved in the development of NQF’s antibiotic stewardship guide for hospitals?

CL: One of the things I’ve learned since founding the Peggy Lillis Foundation (PLF) is that most Americans have very low health literacy. Regarding antibiotics, many people think these medicines should be used to treat viral infections for which they will not work. People also are unaware of the potentially life-threatening conditions, such as C. diff infections, that can result from antibiotic use. When we’re developing policies for national health priorities such as antibiotic stewardship, we need people around the table who are solely focused on what’s best for patients, as well as physicians, nurses, pharmacists, and others. NQF’s antibiotic stewardship action team provided the opportunity for different stakeholders interested in improving antibiotic use to work side by side toward this goal.

NQF: You’ve compared the emergence of antibiotic resistance to climate change. Can you elaborate on this analogy?

CL: Like the effects of climate change, antibiotic resistance is extremely difficult to see in our everyday lives. Similarly, though we see articles and occasional television news stories about antibiotic resistance, it seems like everyone we know is taking an antibiotic because of a mentality that antibiotics can do no harm. That’s hardly the behavior of a culture that is trying to preserve a vitally important medicine. If we were really serious about climate change, we would cap CO2 emissions. Similarly, if we were serious about slowing antibiotic resistance, we would be much more judicious in our use of these drugs.

NQF: What role can consumer and patient advocates play in improving antibiotic use across the nation?

CL: We get a lot of our wisdom about health and health issues from our peers. Consumer and patient advocates can help us educate ourselves and our families, friends, and networks about appropriate antibiotic use. PLF last year launched our Advocates Council, which engages people from all walks of life to share their C. diff stories with broad audiences, including government agencies, healthcare workers, hospital executives, and others who can shape better outcomes.

Consumer and patient advocates can also influence public policy. They can reach out to state and federal legislators to encourage the funding of antibiotic stewardship initiatives and public reporting of healthcare-associated infections such as C. diff to help people make more informed decisions about where to seek care.

NQF: How can physicians, nurses, and other frontline providers ensure that they are addressing patient and family preferences and goals in their practice?

CL: It is important for clinicians to really listen to patients and their caregivers. A quarter of Medicare dollars are spent on people who are in the last year of life. All too often, none of what is spent and none of what is done in any way prolongs life and certainly doesn’t improve the quality of life. I think we should really question if the cure is worse than the disease. That’s only something that people can decide for themselves or can decide—maybe—for their loved ones.

It’s also important for patients to encourage better dialogues with their clinicians. If a physician prescribes an antibiotic, people should ask if the medicine is truly needed. Often, it’s not.