Caring for childhood cancer patients can be risky for family members, too
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 DanaFarber 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.