Making dying 'a little bit easier'

Help is now at hand for the many parents who want to care for their dying children at home, writes SYLVIA THOMPSON

CARING FOR a child who is dying is one of the most heartbreaking experiences that life can bring. Most families with children who have life-threatening conditions say they would prefer that they are nursed for and cared for at home. Currently, the services available to make that possible are seriously inadequate.

In recognition of this, the Irish Hospice Foundation (IHF) has set out a plan to put in place eight outreach nurses throughout the State who will be available to help families cope when their child has a life-limiting illness.

Bevan Ritchie is the first of these. Based in Children’s University Hospital in Temple Street, Dublin, for the past three years, he sees families with children right through from the initial diagnosis and coping with the illness to the final months, weeks and days of the child’s life.

“One of the things families need most is hope and my job is to help them live with their child’s illness,” says Ritchie.

“This can mean everything from helping them have all their hospital appointments on the same day to helping them manage their child’s pain and symptoms to ensuring the family has bereavement support after the child dies.”

Ritchie says that a large part of his job is to link with services that already exist near the child’s home and to be the point of contact for the family when they need to access these community-based services. “If you give the family enough support when the child is living, it makes the dying a little bit easier,” he says.

Claire Quinn will forever be grateful to two of her nursing colleagues who cared for her daughter, Olivia, at home in the last 24 hours of her life.

“My daughter was diagnosed with a severe disability at a young age and she needed 24-hour care in the last six months of her life and I just wanted to be her mum at the end of her life,” explains Quinn. “She had severe seizures and she was very distressed. It was a very daunting experience for us as parents and for our other two children.”

A qualified general nurse and educator in palliative care for adults, Quinn was struck by the lack of knowledge about palliative care for children among healthcare professionals. “I received more information from parents of children with similar conditions,” she says.

Quinn feels very strongly that there is a need for co-ordinated end-of-life care for children with life-limiting conditions in Ireland.

“We knew six months beforehand that Olivia was at the end of her life. I think it takes a lot of courage for parents and healthcare professionals to face up to this, but we felt that it was equally important that her exit from life was as beautiful as her coming in,” says Quinn, who has since specialised in palliative care for children and is a nurse lecturer at National University of Ireland in Galway.

The IHF plans include outreach nurses for children based in Drogheda, Cork, Galway, Limerick, Mullingar, Dublin and Waterford. Currently, a recruitment process is under way for positions for outreach nurses in Drogheda and Cork.

Meanwhile, as part of its Hospice Homecare for Children Programme, the IHF has started offering training in palliative care for children to public health nurses and other healthcare professionals. A database of all children with palliative care needs throughout the State is also planned. And Ireland’s first Paediatric Palliative Care consultant is about to be appointed.

Children in nurseries and creches throughout the State will wear their pyjamas into play centres on Friday, March 25th, for the National Children’s Nurseries Association annual fundraising event, National Pyjama Day. The Irish Hospice Foundation (IHF) Hospice Homecare for Children Programme is the NCNA’s chosen charity this year.

To register for National Pyjama Day, see ncna.ie or call 087-2755675.