HEALTH MATTERS 53 palliative care For children
Palliative Care for Children with Life-Limiting Conditions
In Ireland there are approximately 1,400 children living with a life-limiting conditions. A recent policy document, Palliative Care for Children with Life–Limiting Conditions, provides a foundation upon which children’s palliative care services can be developed in Ireland.
+ Pictured with Barry Andrews TD, Minister for Children and Youth Affairs are some of the members of the Children’s Palliative Care Working Group responsible for the development of the new policy. (l-R) Back: geraldine Fitzpatrick, Department of Health and Children; james Conway, HSE. (l-R) Front: Service user, Claire Quinn; minister Barry Andrews Td dr Maeve O’Reilly, Consultant in Palliative Medicine; Eugene Murray, CEO, Irish Hospice Foundation, and julie ling, and Department of Health & Children.
hildren’s palliative care has evolved from the speciality of paediatrics rather than adult palliative care and is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancing the quality of life for the child and providing support for the family, and includes the management of distressing symptoms, provision of respite and care through death and bereavement. The challenges that must be faced are multiple and specific, and differ significantly with those relating to the care of adults. Adolescents requiring palliative care have their own unique needs. A life-limiting condition is defined as any illness in a child where there is no reasonable hope of cure and from which the child or young adult will die. Children with these conditions are likely to need palliative care. Each year, there are about 350 childhood deaths from these life-limiting conditions; the majority occuring in the first year of life. The Report of the National Advisory Committee on Palliative Care (2001)
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highlighted the need for a review of children’s palliative care services. A Palliative Care Needs Assessment for Children was undertaken and the results published in 2005. The recent policy document aims to
address the issues identified in the needs assessment in order to build a responsive service for children and their families. The policy defines palliative care for children with life-limiting conditions and draws on national and international developments in this small and highly-specialised field. It also describes services as they are currently provided, and gives clear direction for future development. It says a comprehensive service needs to function within a co-operative model, with close liaison between general practitioner, paediatrician, nursing services, therapists and the voluntary sector. Children’s hospitals and hospitals with paediatric units are central to the ongoing care and management of children with life-limiting conditions. This policy recommends that a hospital-based specialist palliative care team led by a Consultant Paediatrician with a Special
Interest in Palliative Care be in place. It also recommends that the palliative
care service be based in the planned new national paediatric hospital, with the consultant having access to inpatient beds. The policy states that in order to provide support primary care services should be developed. Services should include outreach nursing posts, therapy posts, hospice-in-the-home and respite care (both in home and away from the home) in each of the HSE regions. These developments would be in line with primary care/network developments. In order to plan and develop services, data collection is required and it is envisaged that the HSE will collect information on children living with and dying from life-limiting conditions. The needs assessment identified a need
for staff to develop the competencies required to address the palliative care needs of children. The policy identifies requirements in the education and training of healthcare staff and carers. Bereavement services developments are also required. It is recommended that a National Development Committee for Children’s Palliative Care be established by the HSE to provide a national forum for the cohesive, integrated development of children’s palliative care services based on population needs, and to ensure geographical uniformity in the provision of services.
In developing the policy, the Department of Health and Children aims to provide a framework within which a seamless service can be planned, delivered and accounted for by the HSE.
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