G495 Innovative treatments for children: a single centre review of clinical ethics committee discussions

Abstract

Aims Lord Saatchi’s proposed Medical Innovation Bill (MIB) has received widespread media and public interest. The Bill aims to encourage doctors to try novel treatments for those reaching the limit of standard therapy, promising protection from sanctions e.g. prosecution. Innovative therapies (IT) are a relatively common undertaking in the rare and occasionally unique diseases encountered in children’s hospitals, children are not discussed in the proposed Bill. Brierley and Larcher proposed an ethical framework to review IT in children and we describe cases reviewed by our Clinical Ethics Committee (CEC) since introducing this approach. Methods Tertiary paediatric hospital CEC transcripts regarding IT proposals 2011–14 reviewed. Discussion In four years the CEC reviewed 13 IT cases, 6 were urgent and reviewed by rapid response committee. Proposals were presented by 11 different paediatric specialities - 9 single patient specific, 4 relevant to multiple patients. The CEC consisted of at least one medical, one lay member and a member with a higher degree in medical ethics. A legal adviser attended 7 meetings and a member of the hospital spiritual team 8. Minimum of 5 CEC members at review (range 5–13). Families attended all single patient reviews. In all cases in line with the framework medical teams justified the scientific basis for treatment (1) and provided second opinions of external specialists in the field (2). The clear informed consent to the specific proposal by the child and/or those with parental responsibility (3) were obtained, including full knowledge of alternative possibilities e.g. palliative care.(4) The entire local, and where relevant external referring, teams agreed this treatment was an appropriate course.(5) Wider issues such as burdens of treatment for the child and family as a whole (6) together with funding implications for treatment (7) and other resources e.g. PICU were also discussed. An explicit guarantee to disseminate the result of IT whatever the outcome from the team was made. Conclusion Our CEC offers medical teams the opportunity to have innovative therapies reviewed by a multidisciplinary group using a published framework. Innovation is already happening and we are not persuaded the MIB is necessary, or protection from prosecution sensible.