The role of nursing in pediatric palliative home care – Experiences from Lower Saxony, Germany

Abstract

Background: In 2007, the patient’s right to specialized pediatric palliative home care (SPPHC) became law in Germany. In Lower Saxony, a German federal state with a low population density, an adequate care for children suffering from life-limiting conditions (LLC) should be ensured in the context of low patient numbers and low numbers of specialists. A close cooperation with regional primary health care providers can facilitate the performance of this task. Nursing home services play a decisive role in delivering pediatric palliative home care.

Methods: The descriptive retrospective study aimed on the evaluation of nursing home services involvement in and contribution to palliative care in children and adolescents. A second aim was to implement a SPPHC to assure an optimal care provision. Therefore, a standardized questionnaire survey was disseminated to 22 home nursing services, 14 (63%) of them returned the completed form. Data analysis was descriptive. The evaluated needs have been included in the conception of a comprehensive SPPHC in Lower Saxony which was implemented in 2010.

Results: In 2008, the home nursing services reported on 168 patients suffering from life-limiting conditions. As incentives for delivering palliative home care, the nursing teams emphasized the support by a specialized team, a 24-hour on-call duty and the increase of educational programs. To meet this demand, a SPPHC was implemented. Since April 2010, a central office undertakes the coordination and administration, while different regional teams comprising nursing, medical and psycho-social specialists care for the children and adolescents suffering from complex conditions due to LLC. Additionally a central hotline service provides 24/7 specialist availability. During the first three years of operation, the SPPHC providers were involved in the management of 131 children suffering from LLC. In total, 6452 hours of SPPHC were delivered, predominantly spent on joint patient care with regional health care providers like nursing teams or resident physicians (30.2%), driving time (22.5%) and coordination of care (15.3%). Nurses specialized in pediatric palliative care delivered 45.3% of SPPHC in Lower Saxony.

Conclusions: The provision of a comprehensive SPPHC in a region of low population density is possible. A high percentage of coordinative and logistic efforts is needed to enable the specialist care in each child and all areas. General nursing services and nurses specialized in pediatric palliative care as part of the SPPHC play a crucial role in delivering palliative home care for children and adolescents with LLC.