Palliative care is viewed as a basic human right and extends to the care of young people with life-limiting conditions by including the loved ones committed to their care.  Mattie Stepanek, a child who died from a neuromuscular illness, had posited that paediatric palliative care […] no longer means helping children die well, it means helping children and their families to live well and then, when the time is certain, to help them die gently.

The intention of therapeutic interventions requires consideration. When the intervention’s intent is to prevent the child from dying, when death is inevitable, then it is ethically acceptable to withhold same. Where the purpose of treatment is to manage symptoms, then this needs to be weighed against care goals. When there is disparity amongst the perspectives of involved parties about care; discord emerges.

This interactive workshop will discuss, explore and debate the roadblocks and detours that can emerge when families and healthcare providers don’t see eye-to-eye.  The workshop will consider - what is in the best interests of the child? And the family?   Who or how is ‘quality of life’ determined?  

 

While the case exemplar offers a clinically relevant overlay for discussion by focusing on feeding and nutrition choices for a child with a life- limiting condition, it will explore more than the topic of ‘risk feeding’.  

 

Join a medical consultant and an allied health professional as we collaboratively work through the challenges and ethical questions encountered within interdisciplinary teams as we unpack the case’s nuances and highlight a decision-making framework which will deliver take-home applicability for your clinical practice. 

 

Whether you are new to the specialist paediatric palliative care practice, or attend bringing years of experiences to share, all questions and contributions are valuable as we explore this topic together.