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G93 Parental choice versus Professional advice in deafness rehabilitation – an ethical dilemma
  1. S Ratnayake,
  2. I Lakshminarayana
  1. Paediatrics, The Royal Wolverhampton NHS Trust, Wolverhampton, UK

Abstract

Aim The UN convention on rights of children advocates the rights of disabled children, including those with hearing impairment. Furthermore, UK national guidelines recommend cochlear implants (CI) in newborns with severe-to-profound sensorineural deafness as early as possible, thereby enabling children to overcome barriers and integrate better with the society.

The aim is to explore the ethical dilemma underpinning parental refusal for CI.

Method This is a retrospective case study and discussion on ethical issues arising.

Results A first-born baby boy presented with congenital bilateral severe-to-profound sensorineural deafness identified through newborn hearing screening. His non-consanguineous Asian parents had normal hearing. He was given powerful bilateral digital hearing aids and was well-supported by multi-agency community services. Despite this early auditory habilitation, subsequent aided hearing levels remained inadequate for speech perception. Hence, he was referred for CI assessment and consequently deemed suitable. There were no otological, audiological, medical or anaesthetic contraindications. Parents had counselling and discussions on CI rehabilitation. They were aware of the critical window of brain plasticity for auditory and speech development and understood the benefits versus risks. There were no safeguarding concerns. Despite the extensive multi-professional input and support, parents declined consent for CI. At 2 years, the child’s verbal communication remained significantly impaired. The child is now 3 years and continues to use digital hearing aids and communicates by British Sign Language (BSL). Parents were slow to accept and use BSL.

Conclusion This case highlights the ethical dilemma faced by professionals when parents refuse the provision of a well-accepted form of communication rehabilitation. The multi-professional team has provided all possible opportunities for parents to make their choice. However, it is the parents’ autonomy to refuse treatment. Although this is a non-life threatening scenario, CI rehabilitation enables life-changing outcomes if implanted in the first 2– 3 years in children with pre-lingual deafness. The dilemma arises when parental choice contradicts professional advice. Amidst this dilemma, a key factor would be the child’s own views, limited at this young age, on such a life changing intervention. Therefore, to clarify and guide our practice, we have seeked further legal and professional advice.

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