Together for Short Lives Categories of Life Threatening and Life Limiting Diseases
Four broad groups of life-threatening and life-limiting conditions may be delineated. Categorisation is not easy and the examples used are not exclusive. Diagnosis is only part of the process; the spectrum of disease, severity of disease and subsequent complications and the needs of and impact on the child and family need to be taken into account.
Life-threatening conditions for which curative treatment may be feasible but can fail. Where access to palliative care services may be necessary when treatment fails or during an acute crisis, 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 care services.
Examples: cancer, irreversible organ failures of heart, liver, kidney
Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.
Examples: cystic fibrosis, Duchenne muscular dystrophy
Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years.
Examples: Batten disease, mucopolysaccharidoses
Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death.
Examples: severe cerebral palsy, multiple disabilities such as following brain or spinal cord injury, complex health care needs and a high risk of an unpredictable life-threatening event or episode.