A European perspective on palliative care

As part of our wider conversation to inform the development of our new strategy we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that. Today we hear from Julie Ling, CEO of the European Association for Palliative Care

To describe what great children’s palliative care will look like in 2028, I think it is essential to identify the elements of children’s palliative care that lead to an improved experience for children and their families today. If we look at the various definitions of children’s palliative care they all have common elements: enhanced quality of life by ensuring impeccable assessment and treatment of physical, social and spiritual elements of care; viewing the child and family as one unit; provision of respite in whatever guise this is needed; care at the time of death and the care of the family and those affected in the period following the death of the child. These essential components are the cornerstone of great children’s palliative care.

Although children’s palliative care is recognised as speciality in its own right in some countries, internationally it is still a relatively new and evolving speciality where services are at varying stages of development across Europe. Strategic development and planning of services often relies on accurate figures and information, yet due to the nature of children’s palliative care, limited data is available regarding how, where and what services are provided. There is also a dearth of accurate and contemporaneous data relating to the number of children living with, and dying from, life-limiting conditions. As a result of this combination of factors international data is scarce. 

Over the years, a number of national children’s palliative care needs assessments have been undertaken demonstrating many similarities. However, attempts to collect data are compounded by a lack of internationally agreed definitions including the identification of conditions that are considered to be life-limiting. Ideally, support for children with palliative care needs should commence at diagnosis, and for many children with life-limiting conditions this can be at birth. However, diagnosis is often just the starting point of a process that will help to identify children in need of palliative care services, and has to be considered in conjunction with other factors such as the individual, holistic needs of the family, the severity of the condition, the presence of complications and the views of other healthcare providers

For great children’s palliative care to be available to those who need it over the next ten years there needs to be a focus on education and research. Education of healthcare professionals is essential, should have a wide reach and be included in the curricula of all those who will encounter children with life-limiting and life-threatening conditions in their practice. Often reflecting parental preference, the majority of the care of children with palliative care needs is provided by parents and other family members in the child's home. Education of health care professionals and emotional, physical and practical support for parent’s will ensure that they have the skills and confidence to carry out the care required. 

Research in children’s palliative care can be challenging but is essential if the speciality is to grow and evolve. Measuring and counting is a requirement for service planning but more importantly it also ultimately improves care for children and their families. It is a prerequisite of children’s palliative care research that children and their families be given the opportunity to participate in ethical, well-planned and robust research projects and essentially that findings are translated into practice through impeccable dissemination and knowledge transfer practice. Their voice and experience is vital in the development of services.

There is no standardised approach to children’s palliative care. Service availability both within and across European countries varies hugely. According to the United Nations Convention on the Rights of the Child, ideally, all children should be cared for by qualified paediatric staff. Whilst this should of course be aspired to, in reality some international circumstances dictate that this is not always possible. This has resulted in services evolving that for example that include adult palliative care physicians and general nurses and doctors being involved in the care of children requiring palliative care. Flexibility is required in such circumstances and the involvement and interest of those not specifically trained in children’s palliative care should be valued and opportunities for improved practice should be provided.

I believe that Together for Short Lives has, to date, played a pivotal role in the development of the speciality and is widely viewed as a very important and credible voice for children’s palliative care. In order to continue to progress children’s palliative care over the next ten years, there is a need to invest time and resources in education and research. The projections for the number of children living longer with life-limiting conditions suggest an increase over the coming years and in order to meet this increasing demand the speciality of children’s palliative care will need to strategically focus on how services need to develop. This should include a focus not only on educating those specialising in palliative care but also more generally, on those who come into contact with children requiring palliative care. If service development is to meet demand then it is important that there is accurate data relating to the number of children requiring palliative care and providing this information should also be priority for Together for Short Lives. I believe that these actions would contribute to the development of great palliative care for children and their families both nationally and internationally.

What do you think? 
Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing emma.dixon@togetherforshortlives.org.uk

We are keen to hear from as many people as possible, so do share this blog with your stakeholders and networks. You can also engage with the conversation on Twitter, using the hashtag #forthe49000




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