Yesterday saw the start of the 12th Asia Pacific Hospice Conference in Singapore with five pre-conference workshops on a range of topics including paediatric palliative care. The workshop, chaired by Prof Julia Downing from the International Children’s Palliative Care Network (ICPCN) and Dr Martha Mherekumombe from Westmead Children’s Hospital in Sydney Australia, was attended by over 80 participants from a variety of countries including Australia, China, Hong Kong, India, Indonesia, Japan, Malaysia, South Korea, Sri Lanka, Singapore, Taiwan, the United Kingdom, the United States of America and Uganda.
Dr Julie Hauer started the workshop by discussing pain, “Taking Away Her Pain: Bringing comfort to a child with neurological impairment’. Dr Hauer’s clinical work has focused on the complex medical and palliative care needs of children and young adults with severe neurological impairment. She is an Assistant Professor at Harvard University and the Medical Director of a long term and respite care facility for children and young adults with severe neurological impairment and associated complex care needs. Dr Hauer shared information from a recently published clinical report by the American Academy of Pediatrics. She also shared her immense experience and discussed different case studies of children that she has cared for thus giving a practical and applicable presentation on the subject. Her presentation ignited many questions and much discussion from participants.
After the break, Dr Michelle Koch, from the University Hospital of Southampton and Naomi House Children’s Hospice in the UK talked about ‘Return me my breath: Tailoring solutions for children with neuromuscular weakness’. She shared her experience from Al I House and Jacks Place and covered many key issues including when to initiate referral to palliative care, factors around withdrawing ventilation and some of the new medications available. The benefits of introducing palliative care at diagnosis were also discussed. Dr Michelle shared from her personal experience that it often works well when the neuromuscular team make the initial referral on diagnosis. The neuromuscular team refers the child to the respiratory team and palliative care team , these two go hand in hand and are a joint package. As a result they are able to emphasise that palliative care is about living well until they die, and that the palliative care team can help them to do this within the realms of their reality and wishes.
The afternoon session was on person and family centred caring for children’s palliative care and was presented by Assistant Professor Andy Ho and Geraldine Ho. Assistant Professor Andy is an award winning researcher and educationalist, and an endowed member of the International Work Group on Death, Dying and Bereavement. Geraldine is a research associate and senior counsellor in the Nanyang Technological University of Singapore and the Executive Director of LifeLAB. Their sessions centred around person and family centred care in children’s palliative care, specifically before and after the death of a sick child. We need to be cognisant of the challenges to families, in particular parents . One mother in a video that they shared described how she needed to keep the family together, and that if she fell apart then the family would also fall apart. Geraldine shared about how families try to ‘stay in the struggle’ and how they cope in a life full of uncertainty and chaos. The survival of the family as a unit was discussed and the challenges of caring for other siblings and for those who have a child with a genetic condition the fear of having another child. The impact on siblings is great and these were discussed along with how we can support them. Following sharing clinical experiences, Assistant Professor Andy went on to discuss a systematic review looking at the bereavement experiences of parents with young children and only found 22 articles on this, with just one of these done in Asia. Thirteen key themes were identified under four phases – Liminal Margin, Holding Space, Navigating loses and Reconstructing Lives. Finally they shared about some of the programmes in Singapore providing support for children and their families such as those run by Star PALS (Paediatric Advanced life support) and Club Rainbow.
At the start of the afternoon, all participants were asked to put on a card their wishes for the future of children’s palliative care, these cards were then put into an envelope and passed around at the end of the workshop. Participants were invited to take a card, think about what is written on it and then in a couple of days time to write to the person whose email address is on the card with their ideas as to how this can be reached.The workshop was a great opportunity to hear from colleagues working in paediatric palliative care.
During her presentation Geraldine Ho shared how when she got a job in children’s palliative care it was “not just change of job but a change in life.” This was an experience echoed by many attending the workshop; with working in children’s palliative care for many being seen as a turning point, not only in their clinical practice but in the way that they look at life. Asked about the workshop, Dr Chong Poh Heng, co-chair of the Scientific Committee for the conference said, “Today we have heard information that is fresh, that is new, and from a variety of speakers – it has been good and initial feedback from participants has been positive. We are now looking forward to the main conference and all that we have to learn.”