In search of a gentler endThe boy had been sick for a long time, and when the cancer, a rare sarcoma, returned, his family knew that time had run out. The best they could hope for was a gentle death for their child at home, surrounded by the people he loved.
But the only hospice program near their rural Montana town had no experience or expertise with dying children, and the nearest one that handled pediatric deaths was hundreds of miles away in Billings. The family could either travel there or take him to the local hospital to die.
Two states away, Dr. Brian Greffe and the Butterfly program at Denver Children’s Hospital stepped in with an option. A pediatric cancer specialist, Greffe coordinated the boy’s end-of-life care from afar, making sure the child and his family got the physical and emotional support they needed. He said the boy died peacefully in his own home three days later.
Colorado’s Butterfly program is at the forefront of a national movement to improve care for seriously ill and dying children. It got a big boost earlier this year when Colorado became one of the first states to win a waiver from Medicaid, the joint federal-state health program for the poor, to pay for services outside of a traditional hospice program for these children and their families.
Many other states are now pursuing waivers or starting similar pilot programs, often adapted from a model developed by Children’s Hospice International, an advocacy group outside Washington D.C.
Everytime I think that America is going backwards there is a newer revelation. Why is there a need for a SPECIAL program to address commonsense procedures?