The Sepsis Experience for Older Adults

IHA’s Rebecca Hancock studies the voice of older sepsis patients and their caregivers to identify opportunities to improve care

As the patient safety arm of IHA, the Indiana Patient Safety Center (IPSC) strives to help Hoosier hospitals reduce harm and improve care. IPSC focuses on a number of important care topics, including infant mortality, catheter-associated urinary tract infections, readmissions, adverse drug events, and sepsis.

It’s no surprise that IPSC team members are passionate about these topics—even when they’re not at the IHA office.

In June, Patient Safety and Quality Advisor Rebecca Hancock earned her Ph.D. in nursing science from the Indiana University School of Nursing. Her dissertation, “Qualitative Analysis of Older Adults’ Experiences With Sepsis,”  focused on patients’ and caregivers’ experiences when seeking sepsis care.

“We have a lot of data and numbers regarding sepsis, but we don’t have a lot of information on the patient experience,” Hancock said. “I wanted to make sure the voice of older sepsis patients and their caregivers was part of the equation.”

A PASSION YEARS IN THE MAKING

Before joining IHA in January 2017, Hancock served in a number of clinical roles at Indiana hospitals, including staff nurse, patient care manager, geriatric clinical research nurse, and quality data analyst. As an independent consultant, she managed clinical research trials primarily related to Alzheimer’s disease and depression in older adults.

“I learned about patient and caregiver needs from the long-term relationships I developed in clinical trials where we followed them for years,” Hancock said. “I began to focus my interest on the vulnerabilities and greater needs of older adults.”

One of these vulnerabilities included an increased risk of infections and sepsis. Adults 65 and older make up less than 15 percent of the U.S. population, but they make up 66 percent of sepsis patients. And because they often experience atypical symptoms, diagnosis can be more difficult.

Hancock began her Ph.D. program in 2013. In 2015, about the same time that she was narrowing down the focus of her dissertation, the Centers for Medicare & Medicaid Studies began enforcing the implementation of sepsis bundles, which were established to reduce sepsis mortality by implementing standardized sepsis care and reducing time from diagnosis to treatment. Hancock realized that this might be a turning point in sepsis care, and she realized there were some major implications for research. In particular, she noted that the quantitative data was there, but the qualitative piece was a missing link to reduce time from symptom onset to treatment.

“We don’t ask our patients often enough how they’re doing or what they need. Their experience becomes secondary to the numbers,” Hancock said. “We need both.”

She decided to focus her research on the experiences of older sepsis patients using stories posted by 25 sepsis patients or their caregivers on the Faces of Sepsis section of the Sepsis Alliance website. She also interviewed three nurses, two who were caregivers of older sepsis patients and one who was a sepsis survivor herself.

Hancock hoped her research would help provide a more comprehensive look at the sepsis experience for older adults.

“The qualitative piece combined with the data gives a better picture of the patient experience,” she said.

IMPROVING TIME TO TREATMENT

Specifically, Hancock studied the experiences of patients and caregivers when sepsis symptoms were developing. She wanted to understand what symptoms were identified and when patients or caregivers chose to seek help for them, any attempted self-management strategies, and barriers they encountered along the way.

“No published studies have focused specifically on the experiences of the older adult or their caregivers when they are at home, deciding whether to seek medical care for sepsis,” Hancock said.

A more thorough understanding of the experiences of older sepsis patients may help improve future care.

“Improving time to treatment with effective sepsis guidelines, including antibiotics and fluid replacement therapy, can reduce mortality and impairments resulting from sepsis, especially for older adults,” she said.

Although their stories were different, the patients and caregivers included in the study had one thing in common: passion.

“They were passionate about their experiences, both positive and negative,” Hancock said. “They had something they wanted to say.”

Their passion resonated with her and inspired her research even more.

“In doing the data analysis, the words of the patients and caregivers echoed in my mind. I felt obligated clinically to share the information toward improving care for other patients,” she said.

This is part of what makes qualitative research so powerful, she noted. It adds depth and richness to the data.

“We can toss around data all we want, but when you hear a story, you remember it. When you have an emotional response to the story, it is even more memorable,” Hancock said.

IMPLICATIONS FOR HOSPITALS

Hancock’s findings indicated a number of ways hospitals can improve care for older sepsis patients.

First, hospitals must engage caregivers and treat them as partners, not adversaries.

“Fever is often absent in older adults, but one of the main symptoms of sepsis, especially in older adults, is mental decline. Hospitals don’t always know the baseline of their mental status,” Hancock said. “We rely on caregivers to assess that.”

Second, compliance with sepsis bundles is vital.

Nationally, only 50 percent of Medicare patients who were hospitalized for severe sepsis and septic shock in 2017 received treatment according to the sepsis guidelines. There is a statistically better mortality rate of 8 to 9 percent for Medicare patients with severe sepsis and septic shock who receive the care guidelines compared to those who do not. IHA has made bundle compliance a major focus of its sepsis strategic plan.

Finally, hospitals must help raise awareness of sepsis.

“According to research by Sepsis Alliance, in 2018 about 68 percent of people have heard of sepsis. That’s definitely an improvement, considering only 44 percent of people had heard of the term just four years ago,” Hancock said. “But only 12 percent of adults know the most common symptoms. If we want to save lives, we need to ensure everyone knows the signs and symptoms of sepsis.”

Hancock encourages hospitals to get involved with IHA’s See It. Stop It. Survive It. sepsis awareness campaign, which was created to help hospitals raise awareness among their staff and communities. While the corresponding toolkit is geared toward Sepsis Awareness Month in September, raising awareness should be a year-round effort, she noted.

“We must improve sepsis awareness to reduce time to treatment and increase guideline compliance,” she said. “That includes making people aware of the atypical symptoms of older adults, such as cognitive changes and lethargy.”

For more information on the See It. Stop It. Survive It. campaign or to view IHA’s recent four-part sepsis webinar series, which includes a presentation from Hancock on her research, go to SurviveSepsis.com.