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Advance care planning for children and young people who need palliative care: our position on the new universal principles in England

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An advance care plan (ACP) sets out the actions that should be taken when a child’s condition becomes unstable or deteriorates or they develop potentially life-threatening complications of their illness. ACPs detail collaborative discussions between professionals and families regarding their wishes for the care of the child. These actions should be discussed and agreed by the family and the child, when appropriate. If a child is approaching the end of their life, this planning is particularly important.

The purpose of these plans is to try to ensure that the child’s care runs smoothly and in accordance with theirs and their family’s wishes. This may, for example, ensure the care happens in a place that they choose, or prevent inappropriate admissions to hospitals.

On 17 March, the Department of Health and Social Care (DHSC) published Universal Principles for Advance Care Planning for people in England who need palliative and end of life care. DHSC states that the principles should be applicable to everybody, but that the detail that sits behind each of the high-level principles may need to be adjusted to meet the different needs of people, due to their age, condition or circumstance.

Together for Short Lives would like all children and young people who need palliative care and their families to be offered an opportunity to make an advance care plan (ACP). We believe that a set of additional universal ACP principles for children and young people could help to bring about more equitable access to these important conversations and plans. We are keen to work further with NHS officials to develop such principles.

Palliative care for children is different from adult palliative care in several ways:

  • The number of children dying is small, compared with the number of adults.
  • Many of the individual conditions are extremely rare with diagnoses specific to childhood or young adulthood.
  • Many of the illnesses are familial. There may be more than one affected child in the family.
  • Parents bear a heavy responsibility for personal and nursing care and siblings are especially vulnerable.
  • A characteristic of childhood is continuing physiological, emotional and cognitive development. Children’s palliative care providers need to understand and be responsive to the impact of a child’s physiological development on handling of medications as well as each child’s changing levels of communication and ability to comprehend their illness, treatments and prognosis.
  • Provision of play for all children is essential and education is a legal entitlement.

Professionals need specific skills to be able hold the potentially challenging conversations involved in developing an ACP for a child or young person.

For these reasons, we are continuing to work with NHS England and NHS Improvement to develop a set of principles which can underpin ACPs for children and young people. We recognise that the tools used to develop ACPs vary across regions and care settings in England; we are working with the Children and Young People’s ACP Collaborative to further develop a tool for professionals. We are also working with partners to develop core competencies for children’s palliative care professionals, including in advance care planning.

You can read more about ACPs for children and young people in our Care Planning in Advance factsheet which is available to download here.

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