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Palliative Care Team at the Center for Pediatrics at the Medical Center - University of Freiburg provides professional support for seriously ill children, adolescents and young adults in their home environment until they die

Since the beginning of the year, there has been a special palliative care team for young patients with serious illnesses and a limited outlook on life at the Center for Pediatrics (ZKJ) at the Medical Center - University of Freiburg. The palliative care team is geared towards palliative care at home. Specialized outpatient palliative care, or SAPV for short, consists of home visits, telephone consultations and the coordination and networking of all those involved in the care system. It is not limited to care directly after a hospital stay, nor to the immediate dying phase. The palliative care team at the ZKJ is one of three newly established teams in Baden-Württemberg. Two more will be added in the course of 2016. The costs of using this service are covered by health insurance companies.

"Every seriously ill child has a right to a dignified life in familiar surroundings until death," says Dr. Miriam van Buiren, physician at the Center for Pediatrics - University of Freiburg, who heads the Palliative Care Team. "The aim of home care is to make hospital stays unnecessary wherever possible. The aim of specialized outpatient palliative care is to provide medical, nursing and psychosocial support for patients and families, with quality of life and self-determination at the heart of all actions and planning."

In contrast to palliative care for adults, the spectrum of different diseases and developmental stages is much wider for children - for example, newborns with severe congenital malformations, children with oncological diseases or schoolchildren with neurological diseases each have different needs. "Palliative care often begins with an informative discussion in which the parents and sometimes also the child are informed about the diagnosis and its impact on life expectancy," explains Dr. van Buiren. Palliative care accompanies families during the progression of the disease until death and also during the grieving phase. The central task of palliative care is to treat the symptoms of the disease as effectively as possible. This is the prerequisite for being able to make the remaining time as worthwhile as possible. "We focus on the sick child, their entire family and their social environment and provide support and advice. Good cooperation between the palliative care team and local care providers such as outpatient pediatric nursing services, pediatricians or outpatient children's hospice services is necessary for a sustainable care system," says Petra Kiefer, pediatric nurse at the Center for Pediatrics at the Medical Center - University of Freiburg. Together with Dr. Miriam van Buiren, she heads the palliative care team at the ZKJ. "This requirement can only be met by a multi-professional team consisting of physicians, nurses and psychosocial staff," Kiefer continues. To ensure continuous support, families can reach the palliative care team via a 24-hour on-call service.

Due to the medical complexity of their illness, patients who require palliative care in childhood or adolescence are generally treated at a maximum care center, i.e. usually at university hospitals. Since 2007, people with statutory health insurance have been entitled to specialized outpatient palliative care. In 2015, Baden-Württemberg succeeded in reaching a contractual agreement on the structure and financing of SAPV for children and adolescents between the generally university-based maximum care centers for children and adolescents and the statutory health insurance funds. In 2016, teams for specialized outpatient paediatric palliative care (SAPV) will be set up at five centers in the state, namely at the Faculties of Medicine in Heidelberg/Mannheim, Ulm, Tübingen and Freiburg as well as at the Olga Hospital in Stuttgart.

The area covered by the palliative care team at the ZKJ includes the South Baden region with the districts of Baden-Baden, Rastatt, Ortenau, Emmendingen, Schwarzwald-Baar, Breisgau-Hochschwarzwald, Tuttlingen, Lörrach, Waldshut, Constance and Freiburg.

The Palliative Care Team at the Center for Pediatrics at the Medical Center - University of Freiburg can be contacted daily on 0761 270-44410 or by email at zkj.sapv@uniklinik-freiburg.de . Further information at: www.uniklinik-freiburg.de/kinderklinik/palliative-care-team.html