Addressing Ethical Disputes in Pediatric Ventilation: The EMPALA Initiative
The EMPALA initiative aims to resolve ethical disputes between parents and medical teams regarding children on ventilator support. By providing empathetic patient advice and non-medical arbitration services, EMPALA seeks to prevent court proceedings and unnecessary resource wastage. Breathe.On UK is set to pilot this initiative to ensure better outcomes for families and children in need.
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Breathe On: Empala Empathetic Patient Advice & Liaison Assistance Victoria Townsend Breathe On UK Registered Charity 1143785 web www.breatheon.org.uk
No of children on ventilator support has increased exponentially in last 20y. The increase is disproportionate to the rate of population growth. From a group of children with highly complex medical problems Background May involve disagreements between parents and medical teams Often not clear who is right Difficult ethical issues can arise
Ethical Disputes Parents and medical teams often end up with lengthy disputes Each party getting more engrained in their viewpoint
Why this is a problem? Why this is a problem? Enormous resources used with delays Often cases stay on ventilation for months whilst disputes continue without resolution End up in court Pain & suffering for families, children
Resource issues Resource issues Wastage of limited NHS funding on futile treatment Less funding available for those who would benefit
Breathe On UK is a patient journey led experience Breathe On Breathe On Advocates for LTV families Current Current Role Role Provides support from diagnosis to home Needs secure funding to enable this to remain independent service
What is being What is being Proposed Proposed EMPALA = Empathetic Patient Advice & Liaison Assistance non medical arbitration service between medics and families to enable consensus to be reached and prevent court proceedings no cost to NHS England to enable full independent status
How will it be How will it be piloted? piloted? RCPCH pilot Empala Breathe On UK service Southampton PICU 9 -12 months audit Nuffield Bioethics Foundation
How will it roll out? How will it roll out? Vision to provide national coverage once regional pilot is approved
Contributors Breathe On: Victoria Townsend Tessa Lane Lizzie Tough Dr Martin Samuels Dr Jane Turner Goodworks