A Story from the Pediatric Palliative Care Project

Children's Hospital and Regional Medical Center (Seattle, Wash.)

Synopsis of Work: As part of RWJF's Promoting Excellence in End-of Life-Care national program, the Children's Hospital and Regional Medical Center (CHRMC) of Seattle created the Pediatric Palliative Care project. CHRMC put in place two crucial innovations: a new system to improve communication with children and their families, and an imaginative partnership with insurers and the state Medicaid program to pay for palliative care services that ordinarily fall outside a traditional benefit package. An important element, says Ross Hays, M.D., the CHRMC's associate medical director, is to ask families,'"What do you want? What do you need? How can we help make this easier for you?'"

Story Told: This approach has played out in hundreds of small private choices:

  • A 16-year-old girl who wanted to take a bubble bath every day because it alleviated her anxiety. "If she had not expressed that wish," says Hays, "we would not have had the line put under her skin. She took baths 'til the end of her life."
  • An 11-year-old boy who opted out of treatment because it numbed his fingers and he couldn't play video games, one of his only remaining pleasures.
  • A 17-year-old girl with liver cancer who took comfort, her mother said, in "calling the shots" about her care, and knowing she had the last word about how long it would continue. At one point, her mother remembers, "She turned to me and said, 'I'm tired of fighting. I'm giving up.' My response was, 'you're not giving up. You're taking control.'"

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