The “essence” of palliative care for children

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Addressing the Building Bridges-Home Hospital and Hospice Conference, Professor Liben said communication and relationships are central to the essence of children’s palliative care. He pointed to the importance of nurses in the provision of palliative care for children.

“A nurse’s skill in building relationship and communication with children is crucial” Professor Liben said. He said involving siblings in the care of a child with life limiting condition or palliative diagnosis has been shown to help those siblings in the long term. “Siblings involved in the care of a sick child do better when they die,” he said. Professor Liben who is director at the Pediatric Palliative Care Programme at Montreal Children’s Hospice in Canada travelled to Ireland for the two day event in Dublin’ Farmleigh House.

He told delegates: “You are the difference you make”.

It’s estimated that tragically almost 4000 children in Ireland are currently living with a life-limiting condition and that on average 1,873 children currently have active palliative care requirements. 
Some 350 children die in Ireland each year from a life limiting condition.

This conference which was held in Dublin recently was a celebration of the progress made in palliative care for children over the last 10 years and an acknowledgement that there is lot more work to do. Almost 150 people attended the event from across Ireland, Romania, Norway, Canada and the UK.

Emily Logan, Chief Commissioner of the Irish Human Rights and Equality Commission who opened the conference said: “All children have a right to health and thus to palliative care.”

Dr Mary Devins  who is Ireland’s only consultant paediatrician in palliative care said “palliative care is a philosophy of care”.  Dr Devins said palliative care does not need a building and “care can happen anywhere”. She stressed that “palliative care” is not ”no care”.

National lead for palliative care in the Health Service Executive, Sheilagh Reaper-Reynolds outlined how policy and implementation is nurturing the growth of children’s palliative care in its own right. She said “great progress has been made”.

Professor Charles Normand – Edward Kennedy Chair in Health Policy and Management at Trinity College Dublin – argued that it can make economic sense for palliative care for children to be provided in the child’s own home.

Professor Normand said: “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. He said we need to demonstrate that are not misusing the resources that we already have. He revealed the financial toll and life-limiting condition can have on a family. A third of a family’s income is spent on a sick child in the home with the cost even higher if the child is in hospital.

Michelle Hartnett who is a play specialist at LauraLynn Children’s Hospice outlined the importance of play in helping bereaved children to find a “new normal” after the death of a sibling.

European Association of Palliative Care Chief Executive Officer Dr Julie Ling outlined the factors which may push parents to opt for palliative care for their children in their own homes. Dr Ling said: “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.”  

Clinical Nurse Specialist in Paediatric Palliative Care, Our Lady’s Children’s Hospital, Dublin, Imelda Hurley outlined the changing referral patterns to a children’s palliative care service after the appointment of a consultant paediatric with a special interest in palliative care to the hospital.

Claire Quinn, LauraLynn Children’s Hospice, Head of Research outlined the importance of research into palliative care and prioritizing what areas of research are targeted. She said including the voice of the child in this research is important.

Ann Marie Jones, Head Medical Social Worker at Temple Street Children’s Hospital , Dublin presented the Childhood Bereavement Care Pyramid. The pyramid is a guide for professionals and concerned adults in identifying and responding to the needs of children and young people who have experienced a loss. She said: “Children need attention and supports to learn to cope and deal with changes death brings.”

Mother of four Tina Priestly from Naas, Co Kildare outlined how she “lived a lifetime” with her son Bobby who died when he was thirteen months old.

Bobby was born in 2008 with the chromosomal disorder Tetrasomy 9P. During his short life the family received welcome support from the Jack & Jill Foundation and various partners working in children’s palliative care. Her advice to other parents who are caring for children with a life limiting illness is to “grab every bit of help offered.”  

Dr Daniel Nuzum – Healthcare Chaplain at Cork University Maternity Hospital detailed research on the spiritual impact of a life-limiting diagnosis given to parents during pregnancy. His study revealed that the death of a baby challenged the spiritual beliefs 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. He told delegates: “It’s never too late to start that one chance to get it right”

Professor Mary King from the Department of Paediatrics at University College Dublin gave a practical presentation on symptom management of a child with complex neurological issues.

Senior psychologist at LauraLynn Children’s Hospice Dr Aidan McKiernan outlined the importance of respite for family function and parental coping in paediatric palliative care.

LauraLynn Children’s Hospice’s Claire Quinn and Bevan Ritchie demonstrated a new tool called PaedPAL TASK to assist professional learning and development in children’s palliative care.

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