Together for Short Lives
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Categories of life-limiting conditions

There is a rapidly growing number of children living with life-limiting and life-threatening conditions across the UK. We would expect that all these children would benefit from some elements of the palliative care approach and from knowing about the support that is available from children’s palliative care services.

Categories of life-limiting and life-threatening conditions

There are a wide range of life-limiting and life-threatening conditions affecting children and young people, which can be categorised broadly into four groups. Diagnosis is only part of the process of identifying children who need support from palliative care services: the spectrum and severity of the disease as well as the needs/wishes of and impact on the child and family also need to be taken into account. The four categories can be defined as follows:

  1. Life-threatening conditions for which curative treatment may be feasible but can fail
    Access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services.
    Examples: cancer, irreversible organ failures of heart, liver, kidney.
  2. Conditions where premature death is inevitable
    There may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.
    Examples: cystic fibrosis, duchenne muscular dystrophy.
  3. Progressive conditions without curative treatment options
    Treatment is exclusively palliative and may commonly extend over many years.
    Examples: batten disease, mucopolysaccharidoses.
  4. Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health
    Children can have complex health care needs, a high risk of an unpredictable life-threatening event or episode, health complications and an increased likelihood of premature death.
    Examples: severe cerebral palsy, multiple disabilities, such as following brain or spinal cord injury.