Scale of the need

Palliative care is an essential right for anyone with a life-threatening illness whether they are a child or an adult. All children and families will have universal palliative care needs, regardless of their country of origin.

The International Children’s Palliative Care Network (ICPCN) aims to bring together children’s palliative care professionals to raise awareness of these needs, to provide information exchange, and to encourage the development of different palliative care models.

We want individual professionals and international organisations to facilitate global dialogue, share information on best practice, as well as provide support in other countries. Besides information-sharing and raising public awareness, this network will allow increased lobbying to include children’s hospice and palliative care on the agendas of governments, and to encourage NGOs to include such issues in their development programmes.

Scale of Problem

Worldwide epidemiological data on mortality and morbidity points to the growing need to focus on improving children’s access to palliative care and its integration in paediatric care.

  • The ICPCN estimates that worldwide twenty million children can benefit from palliative care, but access to such services remains an issue. When access to medical facilities is an obstacle, it becomes more important in meeting needs of children and their families by extending palliative care to home based and other community or hospice settings.
  • Each year in the United States, approximately 500,000 children cope with life-threatening conditions, and 53,000 children die from trauma, lethal congenital conditions, extreme pre-maturity, heritable disorders, or acquired illness. Less than one percent of children needing hospice services receive it in the United States.
  • Figures in England show that the annual mortality rate for children aged less than 19 years with life-limiting conditions is 1.44 per 10,000, and for 20 to 29 year olds 1.64 per 10,000. The estimated prevalence rate for children and young people likely to require palliative care services in England is 16 per 10,000 population aged 0-19 years.
  • Prevalence rates for cancer in children in England is 1.1 per 10,000 (1995), 3.9 per 10,000 for cystic fibrosis (1995), 0.2 per 10,000 for mucopolysaccharide (1994), and 1.8 per 10,000 for Duchenne Muscular Dystrophy (1993).
  • With the global surge of AIDS/HIV affecting populations, child mortality figures have increased drastically in developing countries due to mother-to-child transmission (MTCT). According to the UNAIDS/WHO Epidemic Update for 2005, out of the 3.1 million people who died from AIDS, over half a million were children under 15 years of age. It is estimated at the end of 2005, 2.3 million children in the world were living with HIV, and 700,000 were newly infected. For example, child mortality figures have nearly doubled in Botswana and Zimbabwe since 1990. Globally, at least a quarter of HIV-infected newborns die before the age of one due to immuno-supression, up to 60% die before the age of two, and most die before the age of five. It is important to consider that due to limited HIV-monitoring facilities in developing countries, estimates are inaccurate, and actual figures will be much higher.
  • Children need appropriate pain and symptom management during the course of their illness. Studies have concluded that a vast majority of children with cancer need regular pain medication while in terminal care, whether it is administered orally or intravenously at home. Suffering from pain was more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care.
  • Almost 40% of all admissions to hospice programmes in South Africa from 2005-2006 were children and youth under the age of 21.
  • In the United States 80 per cent of children under 15 with cancer are cured, but 80 per cent of the world’s children with cancer live in low and middle income countries where there is a higher risk of death because of late diagnosis or lack of treatment. Palliative care, including end of life care, is vital.
  • In Germany a national study was done to show that the majority of children dying from cancer do not have access to comprehensive palliative care services at home, and that there needed to be increased education about palliative and end-of-life care.
  • With increasing prevalence of infectious diseases such as HIV/AIDS, more children will require specific palliative care needs in the future.

Barriers to developing children’s palliative care services

  • In some countries healthcare professionals never acknowledge death in children. The cultural denial of the fact that children actually die prohibits the development of children’s palliative care services.
  • The taboo around child death, without an open and honest approach in dealing with death and without adequate children’s palliative care options, means that families are often forced to make inappropriate and ill-informed decisions to attempt aggressive curative treatments.
  • A lack of understanding about what children’s palliative care is.
  • Families should not have to choose between life-prolonging care and palliative care, when they can go hand-in-hand. There exists an assumption that palliative care should not be considered until all curative options are exhausted, when in fact palliative care should be seen as significantly improving a child’s quality of life. It should be integrated with curative treatment, and throughout the course of the illness regardless of the child’s outcome.
  • Adult hospice and palliative care personnel may be able to provide expertise in end of life care for adults, but often have no paediatric expertise. Many of the conditions that are common in paediatrics are virtually unknown in adult palliative care. This decreases access for families and their children to health benefits such as home-based pain and symptom management, which should be individualised for specific family needs.
  • A lack of trained personnel worldwide makes scaling-up palliative programmes difficult with limited resource capacity.
  • There is insufficient research and evidence-base on the use of medication to treat pain and other symptoms for children. Most studies have not included children as test subjects due to ethical reasons, and therefore limited information on side effects of drugs and dosage effectiveness is available.
  • Most populations have limited access to pain-relieving medications in resource-limited settings.
  • Increased high-technology interventions do not always allow those in less well-developed countries to have access to basic health care services. Initiatives in developing countries should be community-orientated and sustainable.
  • HIV progresses to AIDS much more rapidly in babies than adults, increasing their risk of dying in their very first years due to immuno-supression. With most children having no access to treatment for HIV/AIDS, it is challenging to prevent infection and death of children in resource-limited settings, and palliative care will have an increasing role in improving the quality of life of these children as well as the length of their life.


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