Children and young people are amongst the most hidden patients with palliative care needs. EAPC Children and Young People Taskforce co-chairs Ana Lacerda and Meggie Schuiling-Otten tell us why there is much to be done for children and young people to achieve parity of services with other age groups.
It is estimated that worldwide more than 21 million children have palliative care needs1 (about 7% of the need)2 and prevalence is expected to keep growing. Though numbers may indeed not be comparable to adults, the impact of serious illness and possible death in a child is very significant– it affects the immediate and long-term physical, mental and socio-economic health of their entire family (parents, siblings, grandparents etc.),3,4 while also impacting on their community (school, friends, neighbours etc.).
It is important to note that there are differences between children’s and adult’s palliative care that make the provision of care more challenging and demanding (see Table 1).5
| Prognosis, life expectancy and functional outcome often less clear. |
| More frequent need to integrate palliative care with intensive disease-modifying or life- sustaining treatments due to unclear prognosis. |
| Care often requires a dual focus on growth / development and potential for death. |
| Greater emotional burden for family members and clinicians because serious and life-threatening illnesses are not commonly considered normal conditions for children. |
| Patients undergo continual developmental change: physical, hormonal, cognitive, expressive and emotional. |
| Patients have changing information needs, recreational and educational needs, and modes of coping with stress. Thus, child life specialist, play therapists and behavioural specialists can greatly enhance palliative care for children. |
| Patients may have congenital anomalies of uncertain type or rare genetic conditions. |
| Some genetic conditions may affect multiple children in a family and create a sense of guilt in parents. |
| Expertise needed both to discern a child’s emotional and cognitive development and to communicate in a manner appropriate for the child’s emotional and cognitive development: to provide the most appropriate amount and kind of information about the illness and to elicit the child’s preferences for care. |
Despite the challenges, the provision of children’s palliative care has been growing worldwide, including in Europe (see figure 1). The International Children’s Palliative Care Network regularly updates provision levels – most European countries are at level 3 (localised provision and availability of training) or 4 (broad provision, with training available and focused plans for development of services and integration into health care services). Of the seven countries globally recognized to be at level 5 (broad provision approaching integration), three are in Europe (the United Kingdom, Germany and the Netherlands).
Yet, much remains to be done. Not only are needs most probably underestimated, but service availability and accessibility to paediatric palliative care are unequal across Europe and even within countries. Collaborative initiatives, which of course must respect cultural differences, are essential to foster awareness but also growth in services, education and research are needed to improve provision and quality of palliative care for children and young people.
Recent years have seen an increasing interest in undertaking research in this field and several European institutions are taking the lead. Areas being explored include epidemiology, models of care / service delivery, advance care planning, symptom control and spirituality. Of note, there has been a focus on giving a voice to children and young people receiving care, but also to fathers (how often we focus only on mothers!), siblings and grandparents. Also gaining momentum is the development of perinatal / neonatal palliative care, where couples with a child with prenatal or a peripartum diagnosis can benefit from specialised care.
The EAPC Children and Young People Taskforce was created in 2015 by a group of experts who came together to put forward paediatric palliative care in Europe. We are proud of what we have achieved in that time, including organising an annual EAPC Palliative Care Paediatric Day and collaborating with other paediatric organisations towards raising awareness about and developing children’s palliative care. We welcome new members to join us in this important task. It is an excellent opportunity to network and expand your views and your work – just drop an email to us here!
Paediatric palliative care is a demanding, moving and growing area. Children and young people with life-limiting or life-threatening conditions and their families deserve all our attention and effort, if we really want to change their experience. We must learn and grow as a community of carers, advocates, and researchers.
References
1. Connor, S. R., Downing, J. & Marston, J. Estimating the global need for palliative care for children: a cross-sectional analysis. J Pain Symptom Manag 2021: 53, 171–177.
2. WHPCA & WHO. Global Atlas of Palliative Care. 2nd edition, London, 2020.
3. Feudtner, C. et al. Association between children with life-threatening conditions and their parents’ and siblings’ mental and physical health. Jama Net Open 2021: 4; e2137250.
4. Boyden, J. Y. et al. Pediatric palliative care parents’ distress, financial difficulty, and child symptoms. J Pain Symptom Manag 2022: 63, 271–282.
5. WHO. Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers, and managers. 1st edition, 2018.
Links and resources
- Find out more about the EAPC Childrens and Young People’s Task Force here.
- Read more EAPC blogs about Children’s Palliative Care here.
About the authors
Ana Lacerda is a paediatric oncologist with an MSc in Palliative Care from the Cicely Saunders Institute, where she honed her leadership skills to share her passion about pediatric palliative care. She works in Lisbon, Portugal, where she has been leading the development of education and services.
Meggi Schuiling-Otten is the Chief Executive Officer of the Dutch Center of Expertise in Children’s Palliative Care, the central point of contact for all questions and developments in the field of paediatric palliative care in the Netherlands. She has been involved for years in national and international research projects, guideline development and the embedding of expertise in vocational training. Her special expertise lies in the field of policy development, political lobbying, funding issues and developing network organisations.
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