The Palliative Team - Sternenboot (Boat of Stars)
“Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on the quality of life for the child and support for the family and includes the management of distressing symptoms and the provision of respite and care through death and bereavement. It is provided for children for whom curative treatment is no longer the main focus of care and may extend over many years.” (A Guide to the Development of Children’s Palliative Care Services 2003)
Most of the children and their families affected by a life-limiting illness would choose to be in their own home during the terminal phase of the disease. The familiar atmosphere, the sense of belonging to a family (with siblings or extended family members present), and the normalcy helps the seriously ill child to cope with the challenges of a life-limiting disease.
Vital to this sense of comfort and belonging is the knowledge that the medical side of things is also taken care of. The Palliative Team make this a reality by offering professional (doctors and nurses’ visits to the home and advice over the telephone) and practical care when required, so that the child and his/her family can rely on support from the team 24 hours a day, while still benefiting from their own home environment.
Children and young people who have been patients at our Clinic of Paediatric Oncology and Haematology at the University Hospital in Düsseldorf had access to this Palliative care initiative since 1983. Initially one doctor and a few registered nurses from the clinic would volunteer their own time to provide support and care for terminally ill children at home. They were able to attend to children in a radius of around 100 km from our clinic. Over time another doctor and more nurses joined the Team, and, still working on a volunteer basis, an “on-call” system was begun in 2003, where doctors and nurses were literally a telephone call away for those requiring their help.
In 2006, as part of a project for Integrated Care, this “on-call” system benefited from official financing.
Today between 20-40 children and young people (with ages ranging between 0 and 18 yrs) with every form of life-limiting illnesses are cared for at home by our Palliative Care Team each year.
An individual approach to care is developed by the team, which encompasses the specific medical needs (dictated by the type of illness he or she has), as well as the unique psychosocial needs of each child and his/her family. The team co-operates with family’s General Practitioner or Pediatrician and often includes professionals from other disciplines if the need arises, e.g. physiotherapist, psychologist or religious counselor.
With support from the Palliative Team, and in some cases a regular home-nursing service, the parents are helped to care for their terminally ill child at home.