EAPC Atlas of Palliative Care in Europe 2019
Conclusion: PC health policies developed in recent years have promoted vigorous development across Europe. Preliminary data on the integration of PC into different fields are encouraging though inequalities between countries and sub-regions persist. Further comparative analysis exploring factors leading to uneven progress may inform strategies to provide PC for all people in need. Per land is de stand van zaken van de (kinder)palliatieve zorg weergegeven.
Conclusion: PC health policies developed in recent years have promoted vigorous development across Europe. Preliminary data on the integration of PC into different fields are encouraging though inequalities between countries and sub-regions persist. Further comparative analysis exploring factors leading to uneven progress may inform strategies to provide PC for all people in need.
Per land is de stand van zaken van de (kinder)palliatieve zorg weergegeven.
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EUROPEAN CONTEXT<br />
Chapter 2. Integration <strong>of</strong> <strong>Palliative</strong> <strong>Care</strong><br />
and Paediatrics<br />
B<br />
KEY NOTES ON PAEDIATRIC<br />
PALLIATIVE CARE<br />
DEVELOPMENT IN SOME<br />
EUROPEAN COUNTRIES<br />
A<br />
AlbANiA<br />
The Oncology Hematology Children Hospital<br />
“Mother Theresa provides PPC as part<br />
<strong>of</strong> the paediatric oncology and hematology<br />
service. Home care programmes are coord<strong>in</strong>ated<br />
by two NGOs: Ryder and Mary Potter<br />
and one public team called S.O.B.<br />
ARmENiA<br />
Adult services like Masis Hospice or national<br />
hospitals rarely provide PPC. The NGO<br />
Gayush provides non-PPC services for children<br />
<strong>in</strong> home sett<strong>in</strong>gs. Some orphanages<br />
for children with severe disabilities provide<br />
PPC.<br />
AUsTRiA<br />
The <strong>in</strong>patient children’s hospice “Sterntalerh<strong>of</strong>”<br />
has a psychosocial focus. There are five<br />
paediatric PC beds <strong>in</strong> two hospitals that provide<br />
short-term care and treatment. There are 12<br />
volunteer children’s hospice teams.<br />
bosNiA<br />
Tuzla hospice has dedicated 6 beds for PPC.<br />
bElARUs<br />
The charity Belarusian Children’s Hospice provides<br />
psychological support, young adults PC,<br />
physiotherapy, bereavement program, legal<br />
support and 24 hours nurs<strong>in</strong>g hotl<strong>in</strong>e. It does<br />
not have a medical license. The state organization<br />
<strong>Palliative</strong> <strong>Care</strong> Center for Children provides<br />
PPC. Both have home programmes.<br />
bUlGARiA<br />
Accord<strong>in</strong>g to national legislation children and<br />
adolescents with <strong>in</strong>curable diseases are treated<br />
<strong>in</strong> specialized paediatric hospitals. There are not<br />
hospices specifically dedicated to children, and<br />
adult hospices do not admit paediatric patients.<br />
bElGiUm<br />
Gent, Leuven and St Luc Brussels university<br />
hospitals cover most <strong>of</strong> the paediatric<br />
oncology patients. They have mixed PPC<br />
teams support<strong>in</strong>g children and caregivers;<br />
they work <strong>in</strong> close collaboration with<br />
GP’s, pediatricians, home nurses and physiotherapists.<br />
Two more <strong>in</strong>itiatives <strong>of</strong>fer<br />
respite care and social support for PC and<br />
NCD patients.<br />
cZEch REpUblic<br />
Motol University Hospital and Hospital Hořovice<br />
provide PPC. No <strong>in</strong>patient hospices exist.<br />
There is one organization provid<strong>in</strong>g respite care.<br />
Adult <strong>in</strong>patient hospices rarely accept paediatric<br />
patients. Home PPC programmes vary <strong>in</strong><br />
team composition .<br />
DENmARK<br />
There is one mixed and mobile PPC programme<br />
<strong>in</strong> each <strong>of</strong> the five regions <strong>of</strong> the<br />
country. In 2016, One children’s hospice<br />
was established <strong>in</strong> eastern Denmark, another<br />
one is planned for the western part.<br />
GERmANy<br />
There are three PPC units. Some PC departments<br />
<strong>of</strong>fer one bed for PPC. There are a large<br />
number <strong>of</strong> specialised volunteer services for<br />
children with life-limit<strong>in</strong>g conditions, for more<br />
<strong>in</strong>formation see https://www.wegweiser-hospiz-palliativmediz<strong>in</strong>.de/en<br />
and and <strong>in</strong> http://<br />
www.bundesverband-k<strong>in</strong>derhospiz.de<br />
fRANcE<br />
Teams <strong>in</strong> France are organised under the<br />
umbrella <strong>of</strong> the Regional PPC Resource Teams<br />
Federation (http://www.ferrspp.fr/les-errspp.php).<br />
These teams provide PPC consultations<br />
<strong>in</strong> hospitals, home PC programmes, day<br />
care, and run additional programmes related<br />
to social and spiritual support.<br />
GEoRGiA<br />
Four home care teams work at Children’s Hospice<br />
Firefly Work.<br />
GREEcE<br />
Merimna: Society for the <strong>Care</strong> <strong>of</strong> Children and<br />
Families <strong>in</strong> Illness and Death” (www.merimna.<br />
org.gr) is the only specialized <strong>in</strong>terdiscipl<strong>in</strong>ary<br />
home care team for children and adolescents<br />
with life limit<strong>in</strong>g illnesses. It has an ISO accreditation<br />
and provides psychological and bereavement<br />
support.<br />
icElAND<br />
A large number <strong>of</strong> children with neurological<br />
and oncological diseases receive<br />
PPC from multidiscipl<strong>in</strong>ary teams, consist<strong>in</strong>g<br />
<strong>of</strong> nurses, physicians, social workers<br />
and psychologists. Very experienced<br />
nurses provide specialized home<br />
care. Children’s Hospital and home care<br />
nurses work very closely together.<br />
iRElAND<br />
There is a National Cl<strong>in</strong>ical Programme for<br />
Children and Neonatology provid<strong>in</strong>g PPC. One<br />
team works <strong>in</strong> Cruml<strong>in</strong> Children’s Hospital.<br />
There is a home care service that works out<br />
<strong>of</strong> Laura Lynn Children’s Hospice, cover<strong>in</strong>g<br />
Dubl<strong>in</strong> and the North East. Approximately 13<br />
nurse specialists around the country act as<br />
liaison between rural adult PC services, children’s<br />
paediatric services and medical consultants<br />
based <strong>in</strong> Dubl<strong>in</strong>.<br />
isRAEl<br />
There is one home hospice service car<strong>in</strong>g for<br />
children and one PC dedicated paediatric unit<strong>in</strong><br />
a large children’s university hospital. Some<br />
<strong>of</strong> the general PC support teams for adults also<br />
<strong>of</strong>fer services to children.<br />
<strong>EAPC</strong> <strong>Atlas</strong> <strong>of</strong> <strong>Palliative</strong> <strong>Care</strong> <strong>in</strong> <strong>Europe</strong><br />
54<br />
iTAly<br />
Fourteen regions are currently work<strong>in</strong>g on<br />
develop<strong>in</strong>g PPC networks to improve service<br />
provision. There are two children hospices <strong>in</strong><br />
Padua/Veneto and Liguria Region. Two more<br />
are be<strong>in</strong>g built <strong>in</strong> Bologna and <strong>in</strong> Milan. The<br />
provision <strong>of</strong> home care by PPC teams is not<br />
common.
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