CHILD ILLNESS engenders enormous sympathy, particularly when it concerns those with life- limiting conditions. But sympathy is insufficient. Too often there has been a patchy response to the plight of such children. Geographical location, available services and medical knowledge of palliative and hospice issues have determined frequently whether appropriate care has been offered. But this may be changing. In one of the most heartening health service developments for some time, a framework has been created for succouring children with a limited life diagnosis.
On foot of a new national policy on palliative care for children and more than €2.25 million from the Irish Hospice Foundation, more youngsters will benefit from care at home.
Home is the preferred place of death for children with life-limiting or life-threatening conditions. Although there are different international models of palliative care for children, the recommended approach for Ireland is “Hospice at Home”. At the national policy launch, Minister for Children Barry Andrews stressed that its ultimate aim was to ensure that all children with life-limiting conditions have the opportunity to be cared for at home, surrounded by loved ones and supported by professionals and care workers.
His commitment is clear, although further developments will be “subject to resources”. Meanwhile, for five years the Irish Hospice Foundation will fully finance the cost of Ireland’s first children’s palliative care consultant. For three years it will pay also for five outreach nurses, partially funding them for another three years. The Health Service Executive (HSE) is committed also to financing three outreach nurses.
In this initiative, the Department of Health and Children, the HSE, Jack and Jill Foundation, the Children’s Sunshine Home, the Children’s Palliative Care Working Group and the Irish Hospice Foundation – among others – have demonstrated how co-operation between the State and voluntary sector can enhance lives.
However, much will depend now on the HSE’s determination to keep faith with the new national policy. If it does, about 1,400 children with life-limiting conditions and their families will be enabled to live as fully and completely as possible for the time they have left together. And the parents of the 350 or so children who die each year due to a life-limiting condition will have some comfort in knowing they received the best possible care.
Young and old are entitled to a good death. This new policy brings this aspiration closer for children.