Over the course of the past three years paediatric palliative care has received considerable attention in Norway from political leaders as well as from Norwegian society. The founding in 2009 of the first non-profit organisation, Yes to palliative care and units for children, working for the introduction of paediatric palliative care, as well as their strong advocacy has led and contributed to this positive development.
Palliative care is a relatively new field for adults as well in Norway as it has only been a speciality for 15 years. Up until 2009, paediatric palliative care for children with life-limiting and life threatening conditions in Norway had been given no attention. Yes to palliative care and units for children is the first organisation within the Nordic countries and the only national organisation in Norway working in paediatric palliative care. The main goal of the organisation is to provide children with quality palliative care, access to palliative services at all levels within the healthcare systems as well as increasing knowledge about paediatric palliative care.
The organisation calls for this to be done through national guidelines.
The plan is for the guidelines to have most of the work completed by the end of 2013, but experience from previous work with national guidelines in Norway, suggests it might take longer, as they will also be prepared for the Norwegian Ministry of Health and Care Services policies. The national guidelines are to ensure a multidisciplinary standard for paediatric palliative care. They are not legally binding, but normative and lead to desired and recommended action.
The media in Norway over the past year has brought to light a growing number of very ill children and their families, who increasingly find themselves in combat zones for proper and adequate care. Parents feel that their children are dying without the necessary support for both the child and the family.
The WHO defines palliative care as an approach to improve the quality of life for patients and their families by alleviating suffering and the treatment of pain and other physical, psychosocial and spiritual challenges that may arise in connection with life threatening illnesses. In Norway palliative care is receiving increasing attention as a counterbalance to the traditional health care system. It will be possible to achieve paediatric palliative care for children by reorganising the health service structure to meet these needs; through knowledge and flexibility; by improving the coordination and communication with a combination of volunteer-ism (something that has not been very strong in healthcare in Norway).
To ensure that children receive safe and dignified care it also needs to be coordinated in an optimal and seamless manner. Planning and collaboration of medical, psychological and social interventions should be knowledge based on carefully designed individual measures, where the individual’s wishes for care are met.
Yes to palliative care and units for children will follow up on this by providing the knowledge and skills, and by drawing on their international partners who do have extensive experience. As a country with a strong financial base, huge resources and access to the amazing work done by other countries, Norway actually has the possibility to achieve very good results on getting paediatric palliative care included at all levels. The guidelines will form a good foundation for the development of paediatric palliative care.
To read the full article visit the International children’s edition of ehospice.
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