Children's right to palliative care codified in the USA

Abstract

M professionals are “obligated” to ensure that children with life-threatening or terminal illnesses suffer minimally, and that medical technology is used only when the benefit to the child outweighs the burden, says the American Academy of Pediatrics (AAP) in its first formal policy on palliative care for children. “Currently, we treat ‘until death do us part’ without acknowledging that children suffer and that quality of life is important”, asserts AAP spokesperson Marcia Levetown (University of Texas Medical Branch, Galveston, TX, USA). “Often people are reluctant to stop treating children because they are a ‘protected and vulnerable’ population. But what are we protecting them from? Is death the worst possible outcome or is prolonged suffering a bad outcome—maybe even worse than death?” The AAP recommends that palliative care and respite programmes be established throughout the USA for children and their families, and that comprehensive care begin from the time a child is diagnosed with a lifethreatening or terminal condition. It also calls for changes in US palliativecare policies to allow broader eligibility criteria, equitable reimbursement of simultaneous life-prolonging and palliative care, and more respite care and related therapies than are currently mandated—but it reiterates its opposition to physician-assisted suicide or euthanasia for children. In addition, physicians should become familiar with paediatric palliative-care practices and pharmaceutical companies should provide labelling information for symptom-relief medications useful for children (Pediatrics 2000; 106: 351–57). The UK, Canada, and Australia are “way ahead” of the USA when it comes to the provision of palliative and hospice care for children, notes Levetown, who initiated the Children’s International Project on Hospice/Palliative Services (ChIPPS) in 1996. “Outside the USA, it is acknowledged that children die. Here, we’re not used to that fact and don’t provide for it. If we could live by this [AAP] statement, we’d be way ahead of everybody. But although it may make sense intellectually to many people, actually implementing it will be very difficult and will take a long time.” ChIPPS will publish a compendium of paediatric palliative care for international distribution in late autumn through the National Hospice and Palliative Care Organization.