Status Quo of Palliative Care in Pediatric Oncology—A Nationwide Survey in Germany

Abstract

Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73) German pediatric oncology units (response rate 97%) provided information on the timing of breaking bad news, place of death, orchestrating palliative care at home and on the ward, integration of services and staff, funding of palliative care, bereavement services for siblings and parents, educational needs, level of self-satisfaction, and designated integrated palliative care services for children with cancer. More than 60% of children with malignancies died as inpatients in 2000, fewer than 40% at home. Twenty-nine pediatric cancer departments were able to provide comprehensive medical palliative home care, and nine units incorporate a designated palliative care team or person. Only half of the departments provide bereavement services for siblings. Many health professionals working on pediatric cancer units in Germany provide palliative home care in their free time without any payment. They predominantly use their private vehicles and often are unclear about the legal background and insurance arrangements covering their provision of care. The data suggest an important need for education about palliative and end-of-life care. The majority of children dying from cancer in Germany do not have access to comprehensive palliative care services at home. Our study highlights the necessity of incorporating the palliative paradigm into the care of children with cancer. Barriers to its implementation must be identified and overcome.

Specialized Pediatric Palliative Home Care: A Prospective Evaluation

“…The high value of PPHC as stressed by former research was clearly supported by our findings. 5,[18][19][20][21][22][23][24] Our data also support the notion that appropriate PPHC provided by a specialized team is able to alleviate caregivers' psychological distress and burden. 5,[25][26][27][28] Knapp and colleagues 29 analyzed the status of PPC provision around the world, emphasizing the importance of future advancement in this field.…”

Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

“…For example, experts from the oncological field point out the demand for a legal and financial basis that would allow them to continue the care for their patients after discharge at home, which currently is not possible in Germany [40]. At the time when palliative care should begin, the families often are not able to accept new services.…”

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

“…Many studies have described the key features associated with providing home-based palliative care to children with cancer from the parent's perspective, health care professionals' perspective, and/or by reviewing the child's medical information [17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32] . On the other hand, the experiences of GPs with respect to home-based palliative care in children have received relatively little attention 27 30 31 .…”