"Improving the quality of life for dying children in Pennsylvania will require sweeping social changes around the fact that children do die," said Gail Inderwies, founder of Keystone Hospice in Wyndmoor and the task force's cochairwoman, who spoke at a rally in the Capitol yesterday. "We need to develop more humane and holistic supports for families and children when treatment for their disease fails."
Families and child-health advocates who gathered yesterday said they were seeking the changes the task force report recommended: a more strategic and comprehensive approach to care, improved communications among health-care providers, and better education for doctors and other medical professionals.
The Children's Project on Palliative/Hospice Services has released its latest newsletter (PDF) which contains a number of articles describing the experiences of family members when they do not feel prepared for dealing with their child's illness.
