Angela Cooper arrived home from work to discover that her daughter's temperature had spiked to 102 degrees, a sign that the teenager, who has cancer, had a potentially deadly bloodstream infection. As Cooper rushed her daughter to the hospital, her mind raced: Had she done something to cause the infection?
Cooper, who works at a Chevy dealership in Iowa, has no medical background. She is one of thousands of parents who perform a daunting medical task at home — caring for a child's catheter, called a central line, that is inserted in the arm or torso to make it easier to draw blood or administer drugs.
Central lines, standard for children with cancer, lead directly to a large vein near the heart. They allow patients with cancer and other conditions to leave the hospital and receive antibiotics, liquid nutrition and even chemotherapy at home. But families must perform daily maintenance that, if done incorrectly, can lead to blood clots, infections and even death.
As more medical care shifts from hospital to home, families take on more complex, risky medical tasks for their loved ones. But hospitals have not done enough to help these families, said Amy Billett, director of quality and safety at the cancer and blood disorders center at the Dana-Farber Cancer Institute/Boston Children's Hospital.
"The patient-safety movement has almost fully focused all of its energy and efforts on what happens in the hospital," she said. That's partly because the federal government does not require anyone to monitor infections that patients get at home.
Even at the well-resourced, Harvard-affiliated cancer center, parents told Billett in a survey that they did not get enough training and did not have full confidence in their ability to care for their child at home.
The center was overwhelming parents by waiting until the last minute to inundate them with instructions — some of them contradictory — on what to do at home, Billett said.
An external central line, which has an end that lies outside the body, must be cleaned every day. Caregivers have to scrub the hub at the end of the line for 15 seconds, then flush it with a syringe full of saline or anticoagulant.
If caregivers don't scrub properly, they can flush bacteria into the tube, and — whoosh — the bacteria enter a major vein close to the heart, Billett said. One father, noting that the hub looked dirty, scrubbed it with a pencil eraser, sending three types of bacteria into his child's bloodstream, she said.
Learning the cleaning steps was "very nerve-racking," recalled Cooper, whose 18-year-old daughter, Jaycee Gray, has had a central line since April to receive treatment for a rare type of blood cancer.
"You can scrub and scrub and scrub, and it doesn't feel like it's clean enough," she said. Parents must keep track of other rules, too, such as covering up the central line before the child gets into the shower and changing the dressing if it gets dirty or wet.
Bloodstream infections associated with central lines lead to thousands of deaths each year inside hospitals, according to the Centers for Disease Control and Prevention. Research has also shown that these infections are largely preventable: Hospitals have slashed infection rates when staff follow the CDC's standardized safety steps.
But researchers recently discovered that more children with central lines are getting bloodstream infections at home: In a three-year study of children with cancer and blood disorders at 15 hospitals, 716 such infections took place outside the hospital, compared with 397 inpatient infections. This was partly because children with central lines spend much more time outside hospitals than inside them.
These hospitals belong to a national collaborative of 20 pediatric cancer centers that aims to train families, visiting nurses and clinic staff on how to handle central lines.
At one of the hospitals, Johns Hopkins in Baltimore, researchers discovered that patients as young as 8 were cleaning their own central lines at home, even though the hospital had designed its training materials for adults.
Cooper said that when her daughter developed the fever in July, she immediately started wondering if she were to blame: "It's really hard," she said. "I don't want to put her in the hospital."
When doctors confirmed that Jaycee had a bloodstream infection, Cooper asked them what caused it. Days later, after interviews and tests, no one knew for sure.
Jaycee was transferred to Children's Hospital & Medical Center in Omaha, one of the other hospitals in the collaborative, where nurse Amanda Willits works with families to identify the likely causes of infections and to practice safe techniques. Willits said the bacteria probably came through the skin, but there is no sign that Cooper was to blame, and Cooper demonstrated her line-care technique perfectly.
Jaycee spent four days in an isolated room at the hospital. Doctors warned her that if the bacteria had colonized the plastic of her central line, she might have to go through surgery to have it removed and replaced.
As it turned out, Jaycee didn't need surgery; she recovered with antibiotics.
In a small study published last year, about four out of 10 children who got these infections needed to have their lines surgically removed.
In that study, pediatric oncologist Chris Wong Quiles of Dana-Farber/Boston Children's tackled basic questions that researchers don't have national data on: When patients get these infections at home, what happens to them, what does it cost and how often do they die?
Wong Quiles found that in 15 percent of cases, children ended up in the intensive care unit. Four children died. Their median hospital stay was six days, and their median age was 3.
These episodes also cost a lot. Wong Quiles found that median hospital charges were $37,000 per infection. That's not counting professional fees from hospital staff; the cost of going home with antibiotics and possibly nursing care; or the cost to families of losing days of work to be at the hospital with their kids.
In Boston, Billett and Wong Quiles have enlisted extra staff and resources to try to help parents. The hospital hired what is called a "checklist engineer" to clean up inconsistent messaging and created family-focused videos, flip charts and pocket-size brochures about handling central lines.
Now, patients and families start learning central-line care five to 10 days before discharge, instead of just one or two days, Billett said. Parents first practice on a dummy called Chester Chest, then demonstrate their skills on their child.
Even after this training, bringing a child with cancer out of the hospital felt scary, said Megan Kelley, whose 8-year-old daughter, Bridget, is being treated there for leukemia.
"It felt like bringing a newborn baby home — we've never done this before," said Kelley, who lives in Quincy, Mass., with her husband, Dan, and their three daughters.
Bridget and her family have managed to avoid infection since she was first discharged in December.
Along the way, the family got support and was spot-checked: The hospital keeps track of who was trained and that person's skill level, and sends a nurse home to see how the caregiver handles the line.
This approach to patient safety — helping families at home through standardized learning tools, hands-on training and tracking skill development — could have broad applications for caregivers of patients young and old, Billett said.
Some early work at Johns Hopkins has shown success: The hospital found a dramatic reduction in outpatient bloodstream infection rates after it trained families, home health nurses and clinic staff.
These infections "can exact such a harsh toll on some of our most vulnerable patients," said Michael Rinke, who led that research and now works at Montefiore Medical Center in New York. "Preventing even one of these can help a kid have an important out-of-hospital time, and have an important being-a-kid experience."
Kaiser Health News, a nonprofit health newsroom whose articles appear nationwide, is an editorially independent part of the Kaiser Family Foundation.