Management of children with spinal muscular atrophy type 1 in <scp>A</scp>ustralia

Abstract

There appears to be a consistent approach in the management of children with SMA 1 in Australia, which can be characterised as 'actively managed dying'. This study could contribute to the development of Australian consensus guidelines for the management of these children. These results also highlight a number of ethical issues related to the management of children with SMA 1.