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

被引:34
作者
Friedrichsdorf, SJ
Menke, A
Brun, S
Wamsler, C
Zernikow, B
机构
[1] Univ Witten Herdecke, Vest Childrens Hosp, Inst Childrens Pain Management & Pediat Palliat C, Datteln, Germany
[2] Childrens Hosp Westmead, Pain & Palliat Care Serv, Sydney, NSW, Australia
[3] Univ Hosp Muenster, Dept Pediat Oncol, Munster, Germany
关键词
children' cancer wards; pediatric palliative care; home care; nation-wide survey;
D O I
10.1016/j.jpainsymman.2004.05.004
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Cancer is the leading cause of death among the pediatric population with lift-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 (respons 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 fir 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. (c) 2005 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
引用
收藏
页码:156 / 164
页数:9
相关论文
共 32 条
  • [1] Allen JP, 1996, JAMA-J AM MED ASSOC, V275, P474
  • [2] [Anonymous], 1999, SEER CANC STAT REV 1
  • [3] Association for Children with Life-Threatening or Terminal Conditions and their Families (ACT) Royal College of Paediatrics and Child Health, 2003, GUID DEV CHILDR PALL
  • [4] BAUM D, 1999, CARE DYING CHILD, P1
  • [5] Supportive care: Palliative care in children, adolescents, and young adults - Model of care, interventions, and cost of care: a retrospective review
    Belasco, JB
    Danz, P
    Drill, A
    Schmid, W
    Burkey, E
    [J]. JOURNAL OF PALLIATIVE CARE, 2000, 16 (04) : 39 - 46
  • [6] Pediatric palliative care
    Chaffee, S
    [J]. PRIMARY CARE, 2001, 28 (02): : 365 - +
  • [7] MODELS OF CARE FOR CHILDREN DYING OF MALIGNANT DISEASE
    CHAMBERS, EJ
    OAKHILL, A
    [J]. PALLIATIVE MEDICINE, 1995, 9 (03) : 181 - 185
  • [8] Palliative care and the child with cancer
    Collins, JJ
    [J]. HEMATOLOGY-ONCOLOGY CLINICS OF NORTH AMERICA, 2002, 16 (03) : 657 - +
  • [9] DANGEL T, 2001, DOMOWA OPIEKA PALIAT
  • [10] Eden O. B., 1994, Palliative Medicine, V8, P105, DOI 10.1177/026921639400800203