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Children and young people who need palliative and end of life care
An introduction to life-limiting and life-threatening conditions in children and young people.
Life-limiting and life-threatening conditions
Life-limiting conditions are defined as those for which there is no reasonable hope of cure and from which children will die. Some conditions cause progressive deterioration, meaning that the child or young person becomes increasingly dependent on parents and carers. Life-threatening conditions are defined as those for which curative treatment may be feasible but may fail.
Many children and young people do not have a confirmed diagnosis. However, professionals will often recognise that their prognosis is poor.
Children and young people with life-limiting or life-threatening conditions often have severe disabilities and multiple complex healthcare needs, including needs related to their underlying condition. A relatively high proportion of children and young people who are eligible for NHS children’s continuing care also need palliative and end of life care.
Four groups of life-limiting and life-threatening conditions
Life-limiting and life-threatening conditions can be described in four broad groups developed by Together for Short Lives (see below). These examples are neither exclusive or fixed; children may move between the groups or be in more than one group at any time. The groups are intended to be a helpful tool to illustrate the range of different conditions which may require palliative and end of life care.
Category 1: Life-threatening conditions for which curative treatment may be feasible but can fail
Where access to palliative and end of life care may be necessary when treatment fails, irrespective of the duration of that threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative and end of life care services.
Examples: cancer, organ failures of heart, liver, kidney, transplant and children on long-term ventilation.
Category 2: Conditions where premature death is inevitable
Where there may be long periods of intensive disease-directed treatment aimed at prolonging life and allowing participation in normal activities. Children and young people in this category may be significantly disabled but have long periods of relatively good health.
Many children and young people in this category will live well into their teenage and young adult lives. Transition to adult palliative care services is especially important for this group.
Examples: Duchenne muscular dystrophy and SMA Type 2.
Category 3: Progressive conditions without curative treatment options
Where treatment is exclusively palliative and may commonly extend over many years.
Examples: Batten disease, mucopolysaccharidoses and other severe metabolic conditions.
Category 4: Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death.
Where palliative and end of life care may be required at any stage and include unpredictable and periodic episodes of care.
Examples: severe cerebral palsy, complex disabilities such as following brain or spinal cord injury.
The categories for Perinatal Care
These categories have been developed by the British Association for Perinatal Medicine.
Category 1
An antenatal or postnatal diagnosis of a condition which is not compatible with long term survival, e.g. bilateral renal agenesis, or anencephaly.
Category 2
An antenatal or postnatal diagnosis of a condition which carries a high risk of significant morbidity or death, e.g. severe bilateral hydronephrosis and impaired renal function.
Category 3
Babies born at the margins of viability, where intensive care has been deemed inappropriate.
Category 4
Postnatal clinical conditions with a high risk of severe impairment of quality of life and when the baby is receiving life support or may at some point require life support, e.g. severe hypoxic ischemic encephalopathy.
Category 5
Postnatal conditions which result in the baby experiencing “unbearable suffering” in the course of their illness or treatment, e.g. severe necrotizing enterocolitis, where palliative and end of life care is in the baby’s best interests.
Find out how many children and young people may need palliative and end of life care in your geographical footprint here.