December 12 & 13 2015 saw the very first conference in China that was solely dedicated to the topic of children’s palliative care. The conference was hosted and created by the Butterfly Children’s Hospices and sponsored by The Lipoid Stiftung Foundation. The event was free to attend and all speakers gave their time for free. The conference was attended by medical professionals, social workers and NGO workers.
Aims of the conference were for delegates to learn about the different models of delivering palliative care for children while looking at the many issues and challenges faced when delivering such care. The challenges of providing children’s palliative care in China are different to those faced in western countries. Unique challenges include: superstition surrounding death, lack of availability of a range of analgesics and knowledge of how to administer them and the often silent culture of abandonment.
There is also a distinct translation barrier of the word ‘palliative’. Many, as in the west, believe it means “no-hope”. This first conference was about instilling the more holistic approach of comfort care; addressing all needs of the child and family, not just the diagnosis.
This concept of holistic children’s palliative care is being welcomed by many, and China is beginning to recognise the value of this care for families facing desperate situations.
Lyn Gould, Butterfly Children’s Hospices Co-founder, said: “It seems momentum is growing for the development of children’s palliative care services in China. The thirst for knowledge and commitment to providing care for children with life challenging situations – often in very difficult environments – are very evident.
“It is a privileged position to be trusted to pioneer and speak out on such a sensitive and largely hidden issue. Since the conference we have been asked to provide training for a number of organisations including paediatric nurses in the Xiangya hospital in Changsha as well as create an association for those working in the field of children’s palliative care in China to share knowledge and experience.
“We hope this conference will be the first of many. Promotion of children’s palliative care has a long way to go in China but as a small charity we feel proud to have taken this first step towards greater access for all children who are in need.”