What is children and young people’s palliative and end of life care?

An introduction to palliative and end of life care for children and young people.

The World Health Organisation (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening or life-limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Children and young people’s palliative and end of life care includes:

  • physical care
  • emotional care
  • psychological care
  • social care
  • spiritual care

Enabling the best possible life

Palliative and end of life care enables children and young people with life-limiting or life-threatening conditions to live as well as possible until they die. This will mean different things to individual children and young people, but may include:

  • access to play and leisure activities
  • access to education, including early years and school settings
  • the ability to spend time with their family
  • the ability to make and maintain friends

Enabling choice

For young people, palliative and end of life care may enable them to form and maintain relationships, access further or higher education and access employment.

Palliative and end of life care supports children and families to have a choice in their:

  • place of care
  • place of death
  • emotional and bereavement support

Ambitions for Palliative and End of Life care

The Ambitions for Palliative and End of Life care describes high quality palliative and end of life care for people of all ages, including children and young people. It sets out what is needed across the whole system for good palliative and end of life care.

The framework sets out the following 6 ambitions:

1. Every child or young person is seen as an individual

Every child is involved in developing an advance care plan (ACP).

A key element of children and young people’s palliative and end of life care is supporting children, young people and their families to develop advance care plans (ACPs) which set out their wishes for current care and treatment in the future. These are often well received if they are introduced early as a plan for life, enabling the family to plan with professionals for their child’s care during intermittent potentially reversible health deteriorations, preparing the way for decisions around irreversible changes at the end of life.

ACPs should be regularly updated and shared with everyone involved each time they are updated. A parallel planning approach is very helpful to enable children and families to plan for hopes and wishes for life as well as advance plans for their end of life care.

2. Every child or young person has fair access to care

Local data is available and reviewed relating to child death and data will be shared across regions to inform and plan services.

3. Comfort and wellbeing is maximised

Localities have accessible and responsive services to address:

  • emotional distress
  • spiritual distress
  • social distress

A skilled and competent workforce is available to manage or address physical distress and symptom control.

Systems will be in place to recognise children and young people who may be approaching end of life.

Prescribing and dispensing medications are available out of hours.

There are mechanisms in place for anticipatory prescribing.

4. Care is coordinated

Systems to coordinate palliative and end of life care are in place and accessible across settings.

Information is shared between services and settings in a timely way.

The Child and Young Person’s Advance Care Plan (CYPACP) is a document designed to capture advance care planning discussions between professionals, patients and their families.  It aims to aid these discussions giving prompt of important issues to consider and also to give space and structure to enable documentation of these.

5. Staff are prepared to care

There is a strategy in place for educating the multidisciplinary team workforce for children and young people’s palliative and end of life care.

6. Each community is prepared to help

Localities support public discussion about death and dying.

You can find Ambitions for Palliative and End of Life care through the FutureNHS platform. If you do not yet have access to the platform, please email england.palliativeandendoflife@nhs.net.

Supporting the family

Palliative and end of life care can help parents or carers to maintain their physical and mental health, ensuring that they have the ability to continue to care for the child or young person and any siblings. It can provide them with access to sleep and regular breaks.

Depending on the needs of the child or young person, it may enable one or both parents or carers to access employment, helping them to maintain their financial sustainability.

Palliative and end of life care can reduce the risk of children and their families experiencing crises in their physical or mental health. These are distressing for families and increase avoidable emergency care and support.

Palliative and end of life care can achieve these outcomes by making sure that, through high quality personalised care and support:

  • a wide and potentially complex range of pain and symptoms are managed throughout the child or young person’s illness as well as at end of life
  • families can access accurate and relevant information to help them make decisions
  • families share their story with different professionals and agencies as few times as possible
  • children or young people can be cared for in the place of the family’s choice, where that is in the best interests of the child or young person
  • emotional, psychological and spiritual support can be accessed by the child or young person and those close to them
  • families can access pre and post bereavement support
  • families can access professionals with the skills and experience to meet their needs
  • families can make memories
  • families receive practical and social support, for example, access to aids, equipment, adaptations for the home, suitable housing, transport or help with accessing benefits, cooking, gardening or collecting siblings from school
  • the child or young person and family can discuss and plan their wishes concerning end of life care well in advance
  • families can access short breaks for respite
  • young people experience smooth transitions to adult services and can access services appropriate to their age and developmental stage

This resources guides ICBs on tangible approaches they can take to help children, young people and families to achieve these outcomes.

Parents often provide the majority of personal and nursing care throughout the day and night, which can have a long-term impact on their physical and emotional wellbeing. They may have other children or young people whom they also care for. One or both parents may need to give up work to care for their child or young person, which can have an impact on their financial sustainability and their mental wellbeing.

Children and young people with life-limiting or life-threatening conditions may have siblings who provide support as young carers; they may not have the same social opportunities as their peers as a result of their parents’ caring responsibilities, which may also have a long-term impact on their emotional wellbeing.

ICBs have a series of legal duties to meet in commissioning palliative and end of life care for children and young people.

Find our which children and young people need palliative and end of life care here.

To build your understanding of how to plan these services in a way which is consistent with the commissioning cycle, begin by visiting our Strategic Planning section.

How children and young people’s palliative and end of life care is different from adults

Palliative and end of life care for children is different from adult palliative and end of life care in several ways:

  • Many children and young people use technological equipment to sustain life, often over long periods of time.
  • The number of children and young people dying is small, compared with the number of adults.
  • Many individual life-limiting and life-threatening 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 or young person in the family.
  • Children continue to develop physiologically, emotionally and cognitively; this is an important determining factor in the medications that children need and affects their ability to communicate and comprehend their illness, treatments and prognosis.
  • Children and young people with life-limiting or life-limiting conditions need opportunities to play.
  • Children and young people all have a legal entitlement to education.