Children’s Palliative Care: Building Bridges – Home, Hospital and Hospice

Some 350 children die in Ireland each year from a life limiting condition.

Inconsistencies in the healthcare system is sometimes a factor in encouraging parents of children with life limiting illnesses to make a choice for palliative care provision in the home or other setting. European Association of Palliative Care Chief Executive, Dr Julie Ling will make the claim when she addresses the Children’s Palliative Care: Building Bridges – Home, Hospital and Hospice Conference which begins in Farmleigh this Friday.

Dr Ling said: “There are many factors that influence parents’ choices and preferences for respite in the home environment.  These include a mistrust of the healthcare system, often based on previous experiences, a desire for their child to be cared for at home and remain part of the family, and  issues with travel and transport to get to out of home respite.  

“However whilst respite care at home is seen as the preference of most parents there are also many factors which make this challenging and these will be discussed.”  

Leading health economist Professor Charles Normand-Edward Kennedy Professor of Health Policy at Trinity College Dublin will argue that it can make economic sense for palliative care for children to be provided in the child’s own home. “Studies have shown that care in hospital tends to be much more expensive for these children and in most cases is less suitable. 

“Shifting the balance towards support for people to remain at home achieves more at lower cost. It is hard to argue for doing less for more,” Professor Normand said.

Professor Normand said: “Research has also shown that families who are supported to keep the child at home get what they want or need, although some families would put more emphasis on some rehabilitation support. Successful models of care use expert nurses to help design and broken packages of support, tailored to the needs of each child and family.

International expert in children’s palliative care, Professor Stephen Liben, Director of the Montreal Children’s Hospital Paediatric Care Programme since 1995 will discuss the benefits of Paediatric Palliative Care – that it is not just end-of-life care, will discuss how we bridge between different medical teams and different units (eg obstetric, maternity, paeds, outpatients, community sector) and will share his personal work experiences from the Canadian Health Care system.   Other eminent speakers include Dr. Mary King, Department of Paediatrics, University College Dublin, Mr. Michael Mc Dermott, Consultant Paediatric Pathologist and Dr. Michael Capra, Consultant Paediatric Oncology at Our Lady’s Children’s Hospital Crumlin Dublin.

One Mother’s story 

Mother of four Tina Priestly from Naas, Co Kildare will detail her own experience of palliative care for children. Her youngest son Bobby was born in 2008 with the chromosomal disorder Tetrasomy 9P. He passed away at home aged thirteen months. During his short life the family received welcome support from the Jack & Jill Foundation and various partners working in children’s palliative care.

Ireland’s only Consultant Paediatrician with a special interest in Palliative Medicine, Dr Mary Devins are among almost 30 experts scheduled to present at the conference. Dr. Devins will outline the the practical changes and challenges since she was appointed 5 years ago. Dr Devins will discuss the increase in referral rates and complexities of children that she and her team now care for.

Chief Commissioner of the Irish Human Rights and Equality Commission Emily Logan will make the opening address.

New research 

The spiritual impact of a life-limiting diagnosis given to parents during pregnancy will be revealed by Dr Daniel Nuzum – Healthcare Chaplain at Cork University Maternity Hospital – who carried out research on the topic. His study revealed that the death of a baby challenged the spiritual believes of expectant parents and “raised deep existential questions” as they commenced a perinatal palliative care journey. “Parents felt that their spiritual needs were not adequately met during pregnancy and this study highlights the need to identify and attend to the spiritual needs of parents in perinatal palliative care,” Dr Nuzum said.

Additionally, the need to recruit and retain an educated and skilled workforce in the specialty of children palliative care nursing will also be explored by Ms. Claire Quinn, Head of Research at LauraLynn Children’s Hospice and Lecturer for the Children’s Palliative /Complex Care MSc programme at NUI Galway/UCD. 

This second conference is a celebration of the progress over the last 10 years but with a lot more to do. The Conference is an exciting collaboration between the Irish Hospital Foundation, The Irish Association for Palliative Care, LauraLynn Ireland’s Children’s Hospice, HSE, NUI Galway, Our Lady’s Children’s Hospital Crumlin, the Mercy Hospital Fundraising and Jack & Jill Children’s Foundation.