Auf der ganzen Welt gibt es Kinder, die lebensbegrenzend erkrankt sind. Der Bundesverband Kinderhospiz e.V. arbeitet international Hand in Hand mit Verbänden und Vereinen zusammen, um die Situation betroffener Kinder und Jugendlicher, sowie deren Familien, aber auch der helfenden Institutionen, der Kinderhospize und ambulanten Dienste zu verbessern und auch international auf deren Bedürfnisse aufmerksam zu machen.

Improving the situation of children and young people who are not expected to reach adulthood and their families, is a task of international concern. In this section we want to provide information regarding children’s hospices and palliative care organisations working together across borders to proceed in it.


8th International Seminar of the European Palliative Care Research Centre

Precision Medicine in Palliative and Supportive Care in Edinburgh, Scotland on December 12-14 2018

Meet colleagues and discuss projects

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Just One Thing

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ICPCN has launched a new campaign!

Every day 350 000 babies are born, an event that is, for most people, one of the most joyous moments in life. Imagine the devastation of parents when their child is born with, or develops, a condition or disease that threatens or will shorten its life.

In time, many of these parents will hear the devastating words: ‘We are sorry, but there is nothing more that we can do’. This is the heart-breaking reality for millions of children and families around the world. When palliative care services are available these words will never be spoken, because in children’s palliative care we sincerely believe that there is always something that can be done. Whether this is the provision of appropriate medications to ease the child’s pain and other distressing symptoms or surrounding the family with a compassionate team of people who will ensure a good quality of life for the child. A team that will accompany the child and family on the journey that lies ahead –  a journey that can be filled with precious moments of joy between those of sadness and despair. Support will also be provided at the time of death and into bereavement.

It’s a human right

ICPCN supports the view that palliative care for children is a human right. We have established that there are over 21 million children worldwide living with a life-limiting or life-shortening condition that would benefit from generalised palliative care and around 8 million that need specialised paediatric palliative care, including the care of a child at the end-of-life. Our research also reveals that barely 1% of these 21 million children are receiving it, most of these who miss out, are living in the developing world. For these children, as the disease or condition progresses, unnecessary pain and suffering will occur, including physical, spiritual and emotional suffering.

A daunting task

Meeting a need of 21 million children seems a daunting and almost impossible task, but ICPCN believes that if we can just persuade you as an individual, in your corner of the globe, to commit to doing Just One Thing to promote and improve children’s palliative care provision, we can get closer to ensuring that these 21 million children live for as well as possible, as long as possible. And if the disease prevails and their lives are cut short, that their deaths will be as pain free and as dignified as is possible to achieve.

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World Health Summit now Partner of ICPCN

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The World Health Summit is now a Partner of ICPCN.

About the World Health Summit:

Since it was launched in 2009, the World Health Summit (WHS) has brought together stakeholders and decision-makers from every field in the healthcare spectrum, providing the perfect forum for exchange with experts from academia, industry, politics and civil society. Attracting about 1.600 participants and a wide range of stakeholder groups from all over the world, the event takes place annually in the German capital Berlin. The WHS enjoys the high patronage of the Chancellor of the Federal Republic of Germany, the President of the French Republic, and the President of the European Commission.

Held annually in Spring, the WHS Regional Meeting is organized by the WHS Co-President of each respective year. The first WHS Regional Meeting was held in Singapore in 2013. São Paulo (Brazil) hosted the 2014 WHS Regional Meeting, and Kyoto (Japan) organized the WHS Regional Meeting 2015. In 2016, this tradition was continued by the WHS Geneva Meeting. In 2017, the WHS Regional Meeting - North America, Montreal, will be held from May 8-9 and be organized by University of Montreal and the Montreal Clinical Research Institute.

By choosing the WHS as its central platform, the M8 Alliance of Academic Health Centers, Universities and National Academies has provided the summit with an excellent academic foundation. The alliance is an international collaboration between leading academic institutions aimed at using academic excellence to improve global health.

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Worlds apart:
Culture and context in caring for the whole child

We seem to have set ourselves an impossible task.  The claim of children’s palliative care is that we will care for the child ‘holistically’.  If we took that literally, there would never be time to care for more than one child at a time, even if we set aside the need for us as carers to lead our own lives.

In practice, when we talk about holism we mean many different things. The idea of ‘holistic’ care is an acknowledgement that the child’s existence is complex; that it is more than the physical and includes the spiritual and psychosocial, and that the child’s illness is not separable from the child him- or herself.  It expresses a commitment that in palliative care we are going to try and remember all these dimensions when it comes to caring for each individual child and family.  Because if we are committed to an idea of holism, we are also committed to an idea of compassion that requires us to consider each child as though in that moment she were the only child. 

But holism also represents a recognition that a child exists in, and is dependent on, a network of people that includes parents, siblings, grandparents and so on in ever-increasing circles that extend to include society as a whole.  Society is people who have never met the child, but who we consider to have some role and responsibility in caring for her through their attitudes and the policies they support or enact.  A society’s culture - the way it thinks about children in general and dying in general - therefore has a profound impact on the way we can care for each child and family.  The more we try to consider the child’s needs multi-dimensionally, outside the traditional medical model, the more relevant culture and society become.  Paradoxically, the more we expect a similar standard of care in all cultures, the more important it becomes to recognise how distinct those cultures can be.

This year we will consider the challenge of providing the same standard of care for children and their families in countries across the world, in the face of cultural contexts that can be vastly different in the way they understand medicine, dying, palliative care, ideas of family - and even the way they think of and value children themselves.  The theme of the 2017 Cardiff Conference on Paediatric Palliative Care will be Worlds apart: culture and context in caring for the whole child.

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