Status quo of palliative care in pediatric oncology-a nationwide survey in Germany

Title

Status quo of palliative care in pediatric oncology-a nationwide survey in Germany

Creator

Friedrichsdorf SJ; Menke A; Brun S; Wamsler C; Zernikow B

Publisher

Journal Of Pain And Symptom Management

Date

2005

Subject

Child; Female; Humans; infant; Male; Data Collection; Treatment Outcome; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Physician's Practice Patterns/statistics & numerical data; Pediatrics/methods/trends; Newborn; location of death; Germany/epidemiology; Home Care Services/statistics & numerical data/trends; Medical Oncology/methods/trends; Neoplasms/mortality/therapy; Palliative Care/methods/statistics & numerical data/trends

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Volume

2

Citation

Friedrichsdorf SJ; Menke A; Brun S; Wamsler C; Zernikow B, “Status quo of palliative care in pediatric oncology-a nationwide survey in Germany,” Pediatric Palliative Care Library, accessed September 18, 2021, https://pedpalascnetlibrary.omeka.net/items/show/13709.

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