Tagged Medical Education

As Care Shifts From Hospital To Home, Guarding Against Infection Falls To Families

Angela Cooper arrived home from work to discover 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 or 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 Dr. Amy Billett, director of quality and safety at the cancer and blood disorders center at 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 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 ends 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-wracking,” recalled Cooper, whose 18-year-old daughter, Jaycee Gray, has had a central line since April to receive treatment for anaplastic large-cell lymphoma, 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, like covering up the central line before the child gets in the shower and changing the dressing if it gets dirty or wet.

Monitoring Infection Cases At Home

Bloodstream infections associated with central lines lead to thousands of deaths each year inside hospitals, costing billions of dollars, according to the Centers for Disease Control and Prevention. Research has also shown 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 kids 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 is partly because children with central lines spend much less time in hospitals than not.

These hospitals belong to a national collaborative of 20 pediatric cancer centers, organized through the Children’s Hospital Association, that aims to keep kids out of the hospital by training families, visiting nurses and clinic staff on handling 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 July, she immediately started wondering if she was 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, Neb., one of the other hospitals in the collaborative, where nurse Amanda Willits works with families to identify the likely causes of infections and practice safe techniques. Willits said the bacteria probably came through the skin, but there’s no sign Cooper is to blame, and Cooper demonstrated her line-care technique perfectly.

Jaycee spent four days in an isolated room at the hospital, two hours away from home. 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. But about four times out of 10, children who get these infections do need their lines surgically removed, according to research by pediatric oncologist Dr. Chris Wong Quiles at Dana-Farber/Boston Children’s.

Looking at 61 patients there, Wong Quiles 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 from losing days of work to be at the hospital with their kids.

Dan and Megan Kelley care for daughter Bridget, 8, who has leukemia, at home in Quincy, Mass. When Bridget was discharged from the hospital after treatment, it “felt like bringing a newborn baby home,” Megan Kelley says. (Melissa Bailey/Kaiser Health News)

Bringing In A Checklist Engineer

In Boston, Billett and Wong Quiles have enlisted extra staff and resources to try to help parents. The hospital hired 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 still 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 last 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 Dr. 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.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Categories: Health Industry, Public Health

Tags: , , , ,

Trump’s Deadline On ‘Dreamers’ Reverberates Through Health Industries

Karla Ornelas said she has “always had the idea of being a doctor, I’ve never seen myself doing anything else.” The third-year pre-medical student at the University of California-Davis said she plans to become a family medicine physician and work in California’s Central Valley, where there is a great need for doctors and especially bilingual doctors.

But that dream could be uprooted if the Trump administration goes forward with its plan to end the Deferred Action for Childhood Arrivals (DACA) program, which allows young people brought to the U.S. by their parents without proper documentation to stay and work here. Ornelas, 20, was born in Mexico and came arrived to the U.S. at age 9.

Across the country, Jennifer Rodriguez, 28, faces the same problem. Rodriguez, who works at a psychiatric care facility in Elkhart, Ind., as an administrative assistant, arrived in Goshen, Ind., from Mexico when she was 3, with no recollection of her birthplace and no documents to prove she belonged in the nation she  calls home. Now she is worried that she will be able to stay.

“It’s hurtful that I consider this my home, yet to other people I am an illegal,” she said.

In 2012, President Barack Obama established the DACA policy that gave a group of about 800,000 children and young adults freedom from concerns about being deported and the opportunity to earn a living.

On Sept. 5, Attorney General Jeff Sessions announced that President Donald Trump would cancel Obama’s executive order that set up DACA. Explaining the decision, the administration said that it did not believe Obama had the authority to set up the program and that it anticipated lawsuits from states seeking to end the program.

The administration is providing a six-month grace period until these protections end, giving Congress time to pass legislation to address the legal status of these immigrants, known as “Dreamers.”  Trump and Democratic lawmakers have agreed to work on a plan to extend the DACA program, but there are few details and conservatives have raised concerns.

There are no firm statistics showing how many Dreamers work in the health care sector, but industry leaders suggested that DACA’s end could have an impact, especially among medical students and home health aides.

Multiple health care groups denounced the administration’s move. A statement released by the Association of American Medical Colleges (AAMC) said its members are “extremely dismayed” by the decision.

“Even with the ‘wind down process’ described by the administration, the implications of this action for medical students, medical residents, and researchers with DACA status are serious, and will interfere with their ability to complete their training and contribute meaningfully to the health of the nation,” the group wrote.

The American Medical Association (AMA) said the administration’s announcement “could have severe consequences for many in the health care workforce, impacting patients and our nation’s health care system.” It urged Congress to pass a permanent solution.

“The more the administration threatens immigrants and their families and their communities,” said Robert Espinoza, vice president of policy at PHI, a long-term care advocacy group, “the more we threaten that workforce supply.”

One segment of the health care workforce that could be affected are medical students.

Students and residents may have to cut their training short, the AAMC said, and researchers may have to leave the country before completing their experiments. Foreign-born and international medical graduates also tend to work in underserved areas, said Matthew Shick, director of government relations and regulatory affairs at AAMC. Phasing out DACA could also sever a lifeline connection between doctors and populations in sore need of health care.

Karla Ornelas is a third-year pre-medical student at the University of California-Davis who registered for the DACA program. Her goal is to become a family medicine physician and return to the Central Valley. (Ana B. Ibarra/KHN)

Ornelas, whose family settled in Turlock, Calif., feels that need. For example, she said she accompanied her mother to a doctor’s appointment, as she usually does to help translate. Her mother, she said, had questions about lab results, and as her mother asked in Spanish and Ornelas repeated in English, the doctor grew impatient, told them to stop asking questions and walked out of the room.

“My mom wanted to cry, and I was shocked,” Ornelas said. “That’s when I realized that it wasn’t just my mom, it was an entire community that was relying on this doctor for health care.”

Sixty-five Dreamers were enrolled in medical schools across the nation during the last academic year, Shick said.

“It sounds like a small number,” he said, “but they’re treating anywhere between 1,000 and 2,000 patients in their clinical panel.”

Those medical students are needed to serve neglected communities as well as to alleviate the shortage of doctors. The AAMC projects a shortage of between 40,800 and 104,900 physicians by 2030. More than 43,000 of the empty slots are for primary care physicians.

Kurt Mosley, vice president of strategic alliances for Merritt Hawkins, a physician recruitment company, said he is unsure if there are any Dreamers practicing medicine given that group’s age (recipients were required to be younger than 31 at the time of the executive order).

DACA’s end could also have a large impact on the country’s ability to care for patients in a culturally sensitive manner, he said. And statistics point to the need — minorities are expected to constitute the majority of the U.S. population by 2044, according to the U.S. Census Bureau. By 2060, Hispanics — who make up the bulk of Dreamers — are expected to account for nearly29 percent of the U.S. population.

“You know we’re a nation of diversity, and our workforce should reflect that,” Mosley said. “And [dissolving DACA] is a step backwards.” Health care already relies on immigrants to fill the ranks. Over a fifth of Dreamers work in the health care or education industries, according to a 2016 survey by groups including the National Immigration Law Center and the Center for American Progress. Moreover, based on a separate 2015 survey by the immigrant advocacy organization United We Dream, nearly 23 percent want to pursue a career in health care.

Another sector of the workforce that heavily relies on foreign-born employees is direct care, which includes nurse aides, home health aides and personal care assistants. According to Espinoza, one-quarter of all employees are immigrants.

As the population ages, those jobs will continue to be in high demand. It’s hard to tell whether the vacancies that may be created by immigrants forced out of their jobs could be filled by the remaining population, he said.

“What our sector needs most is care,” Espinoza said. “And these kinds of federal decisions impede that — it impedes our ability to provide care.”

Rodriguez said she sees that need at her job often. The Latino clients frequently approach her for help, she said, recognizing a friendly face and asking in bits of broken English whether their native Spanish is familiar to her.

Interpreting for clients doesn’t fall under her job description, and her boss sometimes tells her to say no when she’s overwhelmed.

“But I would never do that to my people,” Rodriguez said. She wants to stay in the country and continue her work and life here.

Without DACA, Rodriguez said, she would have trouble caring for her family. She has two daughters and just purchased a home.

She is married to an American citizen, so she has petitioned for residency. However, the application is still being processed, she said, which means she relies on DACA to stay employed and keep her driver’s license. Many of her family members also depend on the program for legal protection, and she said she is worried what will happen to them.

Rodriguez identifies herself as a Mexican-American who considers Indiana home.

“This is all we know, and we just want to be productive citizens,” she said. “That’s all.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Categories: Health Industry, Mental Health

Tags: , ,