Chris Feudtner1,2
, Nanci Larter Villareale3
, Barbara Morray3
, Virginia Sharp3
, Ross M Hays4,5
and John M Neff3,6 
1Pediatric Advanced Care Team, Integrated Care Service, and Pediatric Generalist Research Group, The Children's Hospital of Philadelphia; Philadelphia, USA
2The Leonard Davis Institute and the Center for Bioethics, University of Pennsylvania, Philadelphia, USA
3Center for Children with Special Needs, Children's Hospital & Regional Medical Center, Seattle, USA
4Pediatric Palliative Care Program, Children's Hospital and Regional Medical Center, Seattle, USA
5Department of Rehabilitation Medicine, University of Washington, Seattle, USA
6Department of Pediatrics, University of Washington, Seattle, USA