Up Front: Hospital seeks to reduce outpatient infections by teaching home caregivers to perfect safety steps

Allison Flanagan
Allison Flanagan

When Allison Flanagan gets ready to flush and clean the external line in her chest, she dons a surgical mask and gloves and lays out her supplies with nurse-like precision. There are gauze pads, disinfectant swabs and saline tubes, and although she is just 15 she answers “No, I’m good” when asked by her instructor, nurse M. Denise Desrochers, whether she needs help.

“I just like doing it myself,” said the teenager from Haverill, Mass., who is being treated for an immune condition at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.

Allison is well aware of the risk of infection she faces after a stem cell transplant left her immune system and infection-fighting abilities so weakened that she must remain at home in isolation. “I feel more comfortable this way,” she adds.

Allison represents a critical frontier in safety training – patients and home caregivers who are being taught to handle complex tasks outside wards and clinics. The care might involve chemotherapy, dialysis, or IV nutrition, but the goal is the same: to keep the patient safe from conditions like central-line-associated bloodstream infections, or CLABSIs, which are among the most dangerous and preventable maladies they face. 

And Allison’s eagerness to do the job herself makes her “a superstar,” Desrochers said. (For more on how Desrochers trains patients in central-line care, see “Five Questions.”)

Very broad relevance

Amy Billett Sog 0999 11
Dr. Amy L Billett, director of safety and quality, Dana-Farber/Boston Children's

Allison and several hundred other pediatric oncology and stem cell transplant patients and caregivers are helping answer several questions at once according to Dr. Amy L. Billett, director of safety and quality for Dana-Farber/Boston Children’s, and Dr. Chris I. Wong, the project leader. The initiative’s goals, they say, are to reduce infections, increase the comfort of patients and families, and decrease costs.

First, they want to know how readily non-medical professionals can be trained to perform jobs that once were the sole province of nurses and clinicians. Second they hope their data will show that training and strong follow-up reduce outpatient infections, re-hospitalizations, costs, and other concerns. And third, can standardizing and expanding training of at-home caregivers become “a scalable solution” that benefits a wide population of patients with different but complex care needs? 

 “At a time when many aspects of care are being shifted to the home and there is heightened attention to safety and cost,” Billett said, “what we learn about preventing outpatient bloodstream infections in these patients could have very broad relevance.”

Before drawing conclusions, Billett and Wong realized they needed baseline data on inpatient versus outpatient central-line infections at the hospital. Some national statistics exist for inpatient infections – for example, the American Hospital Association’s Health Research and Educational Trust reported last year that 30,100 CLABSIs occur in U.S. intensive care units annually and 250,000 more occur across all care settings. Mortality rates range from 12 to 25 percent and the costs range from $3,700 to $36,000 per episode.  

The Centers for Disease Control and Prevention says inpatient central-line infections result in thousands of deaths annually and billions of dollars in added costs to the health care system, even though most cases are preventable. And while infection rates have dropped in most inpatient settings since 2001, after intensive focus on hygiene, antiseptics and sterile barriers, the CDC considers the elimination of CLASBIs “a national patient safety imperative.” However, little attention has been focused on CLABSIs that occur in patients at home with a central line.

Focus on expanded training

Chris Wong
Dr. Chris I. Wong, project leader, Dana Farber/Boston Children's

Wong said the hospital’s approach grew out of efforts to cut back on infections in the inpatient oncology and stem cell transplant units. Many pediatric outpatients have central lines that deliver chemotherapy and other medications. Yet at hospitals in Massachusetts and across the nation, transplant and cancer patients of all ages are discharged with an external line that parents, other caregivers, or the patients themselves must clean and flush daily to avert life-threatening infections. Billett, Wong and their colleagues launched an initiative to improve the training they were providing.

“We realized a majority of our patients are not here but at home with the lines,” Wong said. “Parents that have no medical training are being asked to perform skills that a nurse has been trained for over a long period of time, yet we were sending them home without really knowing their skills or comfort level with those tasks.”

Added Billett: “That was sort of our lightbulb moment – we went from ‘we’re missing something’ to ‘wow, we are missing something enormous.’ ” So Billett, Wong and their colleagues assessed the existing line-care teaching program and asked patients and families about their experiences. They also analyzed 74 outpatient bloodstream infections that had resulted in hospitalizations. 

Two things became clear. First, home caregivers needed more extensive hands-on training to keep their charges safe and spare them from repeated trips to the hospital. Second, median charges for children treated for bloodstream infections were $36,000 for a six-day hospital stay. 

“Behind these metrics are real and serious risks to patients’ health,” said Wong. “The dollar cost and lengthy hospital stays signal complications that could become life-threatening or delay treatment of the children’s cancer. Reducing these infections is important both for cost containment and quality of care.” 

Allison Cropped
Allison demonstrates her ability to flush and clean the external line in her chest to nurse M. Denise Desrochers

About a year ago, the hospital began an initiative aimed at standardizing training and support for home caregivers. The expectation was that the parent – or, in Allison’s case, the patient, with her mother as a back-up -- would perfect the line-care cleansing and flushing steps before the child went home. On their first return to the outpatient clinic, caregivers would show nurses like Desrochers what they were doing at home. Online videos (in EnglishSpanish and Arabic) are available to reinforce best practices, and new nurses were hired to focus on training and home visits.

Strong caregiver devotion

Like Allison Flanagan, 11-year-old Lacey Martin’s case underscores the need to train and support parents to care for external central lines. 

In early 2016, the 11-year-old New Hampshire girl spent 10 weeks in the hospital for a stem cell transplant to treat her leukemia before going home with an external central venous line that her mother, Crystal,  would have to flush twice daily. Like Allison, Lacey’s immune system was so weakened by the transplant that she needed to be isolated at home for six months. 

For 10 days before Lacey left Dana-Farber/Boston Children’s inpatient unit, Crystal embraced the learning process. Before practicing on Lacey, she worked over and over on the hospital’s mannequin – Chester Chest. The goal is to make the steps almost rote. 

“I knew I had to have it down before I left the hospital,” Crystal recalled. “They made that clear, but they didn’t make me feel rushed. They were really good about answering questions but not being so harsh it made me nervous. I was comfortable by the time I left.” (Crystal Martin describes the experience in her own words: see "Keeping Lacey Safe" below.)

Desrochers, Billett, Wong and their colleagues are mindful of what is deemed the right level of proficiency. The National Center for Biotechnology Information reports that studies over the last decade indicate the “risk for injury from venous or nutritional tubes is directly related to lack of knowledge and competence, which can be improved through home caregiver education and support.”

Billett summed it up this way:  “We’re trying to get our patients and line caregivers to be in the ‘sweet spot.’ They have the desire to do good line care. They have the ability – cognitive and physical – to do good line care. They have the opportunity to do good line care. They have the right supplies; they have a clean surface to work on.  If we can get everyone in this sweet spot, we can reduce preventable infections and the harm they can cause.”

* All photos above courtesy of Sam Ogden, Dana-Farber/Boston Children’s

Keeping Lacey safe: A mother’s story

Few tasks are more stressful for parents than tending to children with central lines and fragile immune systems. Crystal Martin, 41, of Rindge, N.H., talks about what it was like to perfect cleaning and flushing a central line for her daughter, Lacey, 11. 

Crystal Lacey Martin Border
Crystal Martin and daughter Lacey celebrate a healthy Christmas.

“It was weird at first. I never thought I’d be doing that. It’s one thing to give your kids Tylenol and another to handle central lines and chemo and all that.  The nurses made it so easy to learn it.  They didn’t pressure me at all – they are encouraging instead of going ‘Oh my God, you’re going to kill your daughter like that.’

“When she first got to Children’s we had to do a lot of patient safety in terms of what we could feed her and not feed her and what she could be around. There were so many warnings. I watched the nurses all the time as they went through all the safety steps, and I got quite familiar with the medical supplies. I knew to ask for very specialized gloves – like the individually sterilized gloves not the bags of gloves.

“And so I carried over everything I learned into the home -- from having hand sanitizer in every room to washing hands every time you changed a room. Because every place has its own contamination and I became very aware of contamination sources.  And after the transplant we followed the rules and regulations to the letter because the last thing we wanted to do was end up back in the hospital.

“Lacey loved doing the cleaning procedure herself. She could teach anybody how to do it. She followed every guideline and she made sure I followed every guideline. If dad had to do it or my parents – she did it and they watched because she knew what she was doing. 

“I really think we have to become medical safety experts – so long as patients and families get great training and they understand that it is life and death.  You can’t contaminate a central line – it goes right into the heart, so you have to have a healthy respect for that.  And I think with great teaching it can save a lot of problems and save the system a lot of money. I know I saved the system a lot of money, too.”

See the CDC checklist for prevention of CLASBIs

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We want to hear from you!

Email us your feedback and comments: patientsafetybeat@state.ma.us