Why was PELiCaN established?
Aim of PELiCaN
The Paediatric End of Life Care Network was established in April 2019 with the aim of supporting delivery and improving access to high quality, patient and family centred, end of life care for children and young people; regardless of age, ethnicity or geographical location.
End of Life Care
End of Life Care can be regarded as an important subset of the wider delivery of Palliative Care and PELiCaN’s intent is to specifically address and seek to promote best practice – this will include:
- Care before death; the use of an Anticipatory Care Plan to ensure all aspects of health, social, cultural and spiritual care considered along with support for families with often complex decision making needs.
- Care at the time of death whether this is expected or unexpected.
- Care after death, including practical and emotional support.
- Bereavement support for the family and support for healthcare professionals.
Palliative care can be introduced at any point through a child’s life. Some children may require palliative care from birth; others only as their condition deteriorate. Families may also vary as to whether they wish to pursue treatments aimed to achieve cure or significantly prolong life. In practice, palliative care should be offered from diagnosis of a life-shortening condition or from recognition that curative treatment for a life threatening condition is not an option.
End of life care is an important part of palliative care for children and young people ages 0-25 years. The requirement for end of life care can be difficult to predict and define in this population but in general it is expected to include care within the last months or year of life.
Why was PELiCaN established?
In 2012, SCYPPEx (Scottish Children and Young People’s Palliative Care Executive) published a ‘Framework for the Delivery of Palliative Care for Children and Young People’ which sought to specifically support and promote the further development of holistic palliative care for the 0-25 years’ age group. Aligned to this framework SCYPPEx also commissioned the ChiSP (Children in Scotland requiring Palliative Care) study in 2015. This study identified that there are approximately 2200 children and young people who have end of life care needs every year in Scotland. This figure includes around 200 children and young people with a life shortening conditions that will die each year. Recommendations of the study stated that children and young people in Scotland should have access to dedicated end of life care.
In 2013 the Trieste Charter set out the rights of the dying child across the EU. This includes the right to have access to effective treatment, through qualified, child specific, comprehensive and continuous care, in an appropriate setting for his/her age, needs and wishes. It also details the right to have access to child specific palliative care services that respect the child’s best interests, and to avoid the child being subject to futile or excessively burdensome practices, and to avoid therapeutic abandonment.
In order to provide Scotland with dedicated and equitable access to end of life care, the PELiCaN network was commissioned by NHS National Services Scotland as a National Managed Clinical Network in April 2019.
Our Vision
The vision of PELiCaN is to unite all professionals and agencies, and to embrace the modern medical principles of offering the family realistic choices to ensure the best delivery of family-integrated end of life care.
To care for a child at the end of their natural life and endeavour to attenuate the carer’s overwhelming trauma as they confront their worst nightmare is the most inviolable of all privileges bestowed upon children’s healthcare professionals. It is the most emotive of all duties that challenges the essence of our cultural values and beliefs.
There is only one opportunity to best serve the child and their family: one chance to create a positive lasting legacy and one chance to explore the family’s wishes that will best serve their memory-making and inevitable profound grief. Yet there are many external influences throughout Scotland rendering the process inequitable, inconsistent, unpredictable and daunting.
The aim of PELiCaN is to address the current challenges faced by local teams, and standardise the holistic provision of end-of-life care and bereavement support for all children and young people (up to age 25) with a life-limiting condition and, within this, the families who will experience a death each year; irrespective of age, diagnosis, dependency, religion and, as much as possible, geographical location. Offering deliverable choices require the family make personal decisions that carry consequences which they will have to endure, but greater choice and empowerment may translate into improvements in patient and family experience.
The PELiCaN Mission and Scope document can be viewed here.
Dr Chris Kidson
Lead Clinician
PELiCaN Network