Quality statement 1: Advance care plan

Quality statement

Infants, children and young people with a life-limiting condition and their parents or carers are involved in developing an advance care plan.

Rationale

Advance care plans can help people with a life-limiting condition plan for and receive care at the end of their life that is in line with their wishes. Talking with the child or young person, and their parents or carers, at appropriate stages allows them to influence the care that they receive and improves their experience of care. This includes involving parents and carers when a potentially life-limiting condition is diagnosed in a baby during pregnancy. Advance care plans should be appropriate to the circumstances and continuously updated throughout the delivery of care and support.

Quality measures

Structure

a) Evidence of local arrangements to ensure that parents of babies diagnosed with a life-limiting condition during pregnancy are involved in developing an advance care plan before the birth.

Data source: Local data collection, for example, service protocol.

b) Evidence of local arrangements to ensure that the parents or carers of infants with a life-limiting condition are involved in developing an advance care plan.

Data source: Local data collection, for example, service protocol.

c) Evidence of local arrangements to ensure that children and young people with life-limiting conditions and their parents or carers are involved in developing an advance care plan.

Data source: Local data collection, for example, service protocol.

Process

a) Proportion of pregnancies with a diagnosis of a life-limiting condition in the baby in which the parents are involved in developing an advance care plan before birth.

Numerator – the number in the denominator in which parents are involved in developing an advance care plan before birth.

Denominator – the number of pregnancies with a diagnosis of a life-limiting condition in the baby.

Data source: Local data collection based on audits of patient care records.

b) Proportion of parents or carers of infants with a life-limiting condition who are involved in developing an advance care plan.

Numerator – the number in the denominator who are involved in developing an advance care plan.

Denominator – the number of parents or carers of infants with a life-limiting condition.

Data source: Local data collection based on audits of patient care records.

c) Proportion of children and young people with a life-limiting condition who are involved in developing their advance care plan.

Numerator – the number in the denominator who are involved in developing their advance care plan.

Denominator – the number of children and young people with a life-limiting condition.

Data source: Local data collection based on audits of patient care records.

Outcome

Level of satisfaction with care in infants, children and young people with a life-limiting condition and their parents and carers.

Data source: Local data collection based on feedback from children and young people with a life-limiting condition and their parents and carers, and parents or carers of infants with a life-limiting condition.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices and GP practices) ensure that systems are in place for children and young people with a life-limiting condition and their parents or carers to be involved in developing an advance care plan (for example, using the Child and young person's advance care plan collaborative resource). Parents and carers of infants with life-limiting conditions should be involved in developing a plan and parents of babies diagnosed with a life-limiting condition during pregnancy should be involved in developing a plan before the birth.

Health and social care practitioners (such as secondary care doctors, nurses, GPs, community nurses and care workers) involve children and young people with a life-limiting condition and their parents or carers in developing an advance care plan. They involve parents and carers of infants in developing an advance care plan and ensure that parents of babies with a life-limiting condition diagnosed during pregnancy are involved in developing a plan before the birth.

Commissioners (clinical commissioning groups) ensure they commission services that support children and young people with life-limiting conditions and their parents or carers to be involved in developing advance care plans. Services should also support parents or carers of infants with life-limiting conditions to be involved. They should support parents of babies diagnosed with a life-limiting condition during pregnancy to be involved in developing care plans before the birth.

Babies, children and young people with a condition that may shorten their life have an advance care plan that they and their parents or carers have helped develop. This involves talking about how they wish to be cared for at the end of their life. This may sometimes be done before a baby is born if the condition is diagnosed during pregnancy.

Source guidance

End of life care for infants, children and young people with life-limiting conditions: planning and management (2016) NICE guideline NG61, recommendations 1.2.5, 1.2.6 and 1.2.10

Definitions of terms used in this quality statement

Advance care plan

A formal care plan that includes details about the child or young person's condition, decisions made with them and their parents or carers (for example, about managing symptoms), and their wishes and ambitions. This plan is a core element of their palliative care.

[NICE's guideline on end of life care for infants, children and young people with life-limiting conditions]

Parents or carers

Parents or carers refers to the people with parental responsibility for a child or young person.

[NICE's guideline on end of life care for infants, children and young people with life-limiting conditions]

Equality and diversity considerations

Children and young people with life-limiting conditions who have a learning disability may have difficulties understanding information provided to them. Healthcare practitioners caring for children and young people with a life-limiting condition should establish if the person has a learning disability and tailor any information accordingly. All support provided should be accessible, as far as possible, to people with learning disabilities.