Advances and Challenges in European Paediatric Palliative Care
Abstract
:1. Introduction
2. Key Aspects of Paediatric Palliative Care
- The number of children dying is small compared to adults, with many of the conditions being extremely rare, and many of the diagnoses specific to childhood.
- The time scale of children’s illnesses differs to that of adults. In children, palliative care may be required for only a few days, months or can in some cases extend over many years. Life-limiting conditions in children can be familial; therefore, they may affect more than one child in the family.
- The focus of care is not only the child, but it also embraces the whole family. Often parents are expected to become providers of healthcare for children with very complex needs, especially those who are technology-dependent. Paediatric palliative care can offer support in a situation where the parents and siblings are especially vulnerable.
- Despite a diagnosis of a life-limiting condition, the children continue to develop physically, emotionally and cognitively. Of particular concern are the child’s communication skills and their ability to understand their condition. Provision of education and play when a child is unwell is essential and education is a legal entitlement in many countries [2].
- Category 1:
- Life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be necessary when treatment fails, irrespective of the duration of that threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services.Examples: Cancer, organ failures of heart, liver, kidney, transplant and children on long-term ventilation.
- Category 2:
- Conditions where premature death is inevitable, these may involve long periods of intensive disease-directed treatment aimed at prolonging life and allowing participation in normal activities. Children and young people in this category may be significantly disabled but have long periods of relatively good health.Examples: Cystic fibrosis, Duchenne muscular dystrophy and SMA Type 1.
- Category 3:
- Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years.Examples: Batten disease, mucopolysaccharidoses and other severe metabolic conditions.
- Category 4:
- Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death. Palliative care may be required at any stage and there may be unpredictable and periodic episodes of care.Examples: Severe cerebral palsy, complex disabilities such as following brain or spinal cord injury.
3. Service Development and Accessibility to Paediatric Palliative Care in Europe
4. Changing Populations
5. Communication and Decision Making with Children, Young People and Parents
6. Conclusions
Author Contributions
Funding
Conflicts of Interest
References
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Fraser, L.K.; Bluebond-Langner, M.; Ling, J. Advances and Challenges in European Paediatric Palliative Care. Med. Sci. 2020, 8, 20. https://doi.org/10.3390/medsci8020020
Fraser LK, Bluebond-Langner M, Ling J. Advances and Challenges in European Paediatric Palliative Care. Medical Sciences. 2020; 8(2):20. https://doi.org/10.3390/medsci8020020
Chicago/Turabian StyleFraser, Lorna K, Myra Bluebond-Langner, and Julie Ling. 2020. "Advances and Challenges in European Paediatric Palliative Care" Medical Sciences 8, no. 2: 20. https://doi.org/10.3390/medsci8020020