Children's hospice

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A children's hospice comprises outpatient and inpatient facilities for incurably and life-shortening ill children and adolescents as well as their parents and siblings.

Due to the often intensive care of the child, the relief of the parents and the care for the siblings are neglected in everyday life. In an inpatient children's hospice, parents can withdraw from care for a limited time after the incurable disease is diagnosed, while the children are looked after by the hospice's experienced nurses. If desired, the sick child and his or her family can stay in the children's hospice until their death (and for a short time thereafter), which (like inpatient adult hospices ) offers terminal care and has experience in palliative care . Outpatient children's hospice services accompany the seriously ill child and his family in the home, but do not take on any nursing activities.

The aim is to enable seriously ill children to live as dignified and self-determined as possible until the end. However, weeks, months or years can pass before death. The wishes and needs of the sick children and their family members are the focus of the activities of the children's hospices. Strengthening the family, preparing for the death of the child and accompanying the siblings as well as grief counseling are focal points of the work in the children's hospice. The focus is on the whole family system.

In Germany there are around 1500 outpatient hospice services, around 230 inpatient hospices for adults, as well as 17 inpatient hospices for children, adolescents and young adults, about 330 palliative wards in hospitals, three of them for children and adolescents. Every year on the second Saturday in October, World Hospice Day takes place.

history

The idea of ​​the world's first children's hospice came about in Great Britain in the early 1980s . The trigger was a girl named Helen who fell ill with a brain tumor in 1978 . This could be removed successfully, but Helen's brain was seriously and irreparably injured. Her contact with the environment was severely limited; she could neither speak nor sit nor coordinate her body movements.

Sister Frances Dominica , a nun and pediatric nurse , met Helen and her family in the hospital. A close friendship developed. Sister Frances kept visiting Helen during her long hospital stay. This relationship continued even after Helen returned home. In order to relieve the parents again and again, Sr. Frances regularly took Helen to her monastery.

From this friendship with Helen and her family, "Helen-House" developed, as she realized that other families were in the same distress as Helen's family. The "Helen House Hospice" in Oxford began its work in 1982 as the world's first children's hospice. In Olpe in 1998 as under the auspices of the Franciscan Sisters to Olpe Charitable Society , the first children's hospice in Germany, the children's hospice Balthasar . The first youth hospice for adolescents and young adults up to approx. 25 years of age opened in Olpe in 2009 under the same sponsorship. In 1990 six families founded the German Children's Hospice Association , which has since been able to create a number of outpatient facilities. There are now over 100 hospice services for children and young people.

The Federal Association of Children's Hospice was founded in 2002 as the umbrella organization for outpatient and inpatient children's hospice organizations in Germany. He represents the interests of child hospice work and advises interested parties, those affected, politics and experts. There are 17 inpatient hospices for children and adolescents in Germany (including one day hospice); these are located in Bad Grönenbach, Berlin, Bielefeld, Dudenhofen, Düsseldorf, Gelsenkirchen, Hamburg, Leipzig, Magdeburg, Olpe, Stuttgart, Syke, Tambach-Dietharz (Thuringia), Wiesbaden, Wuppertal and Wilhelmshaven.

In 1999, the first and only children's hospice Sterntalerhof was founded in Austria as an initial social project by the deacon Peter Kai and the psychotherapist Regina Heimhilcher. The Sterntalerhof is a hospice for chronically and terminally ill children in the Austrian Burgenland , but also a place of relaxation for relatives. The Sterntalerhof looks after families and children who are affected by a life-threatening or life-limiting illness or disability, provides dying and grief counseling, and enables inpatient, mobile and outpatient care for the children and affected families. Over 100 children are inpatient every year, around 1,000 children and families are cared for on an outpatient and mobile basis.

financing

Inpatient children's hospices in Germany are reimbursed 95 percent of the eligible costs by the health insurance companies. This only partially covers the actual operating costs. The Hospice and Palliative Care Act (HPG), which mostly came into force on December 8, 2015, provides, among other things, that health insurance will increase the minimum allowance for inpatient children's hospices. The remaining ineligible costs (for example for the accommodation of parents and siblings) must continue to be raised by the hospice mainly through donations , but must also be covered through voluntary work.

With the new legal template, inpatient children's hospices can also conclude independent framework agreements with the health insurance companies.

Occupational fields

Volunteers and various professional groups work in a children's hospice , sometimes as employees or on a fee basis or as part of home visits, including child nurses and nurses, housekeepers, occupational and physiotherapists, pastors, psychologists, administrative staff, technicians and doctors.

literature

  • Federal Association of Children's Hospices V. (Ed.): Policy paper on child hospice work . Olpe 2005.
  • German Children's Hospice Association V. (Hrsg.): Child hospice work - accompaniment on the life path. The Hospiz Verlag, Wuppertal 2006.
  • Natali Metzger: "Give the day a lot of life." The Löwenherz Children's Hospice. Bethel-Verlag, Bielefeld 2007, ISBN 978-3-935972-15-4 .
  • Sabine Meinig: When Children Die - The Work in the Children's Hospice , Marburg 2008, ISBN 978-3-8288-9712-0 .
  • Uwe Saegner: Dad, where are you? A children's book on death and grief for children. The Hospiz Verlag, Wuppertal 2005, ISBN 3-9810020-4-0 .
  • Johann-Christoph Student (Ed.): In the sky no flowers wither - children face death. 6th edition, Herder Verlag, Freiburg 2005.
  • Petra Stuttkewitz: Living limits. Texts from accompanying two children in their life-shortening illness. The Hospiz Verlag, Wuppertal 2005, ISBN 3-9810020-3-2 .
  • Sven Jennessen, Astrid Bungenstock, Eileen Schwarzenberg: Children's hospice work. Concepts - Insights - Perspectives. Verlag W. Kohlhammer, Stuttgart 2011, ISBN 978-3-17-021383-8 .

Web links

Individual evidence

  1. ↑ Johann-Christoph Student: Children's hospices: Palliative care in a specific situation , in: Wolfgang U. Eckart and Michael Anderheiden (ed.): Handbook of death and human dignity. De Gruyter, Berlin a. a. 2012, pp. 895-912. ISBN 978-3-11-024645-2
  2. ↑ Legal regulations on child hospice work
  3. ↑ (as of March 5, 2019)
  4. ^ Text, amendments and reasons for the Hospice and Palliative Care Act - HPG
  5. ↑ Federal Ministry of Health: Bundestag passes a law to improve hospice and palliative care. , accessed November 26, 2015