DCPPCC

For Patients & Families

Definition of Pediatric Palliative Care

The World Health Organization (WHO) definition of pediatric palliative care adapted by the District of Columbia Pediatric Palliative Care Collaboration:

  • Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family.
  • It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
  • Healthcare providers must evaluate and alleviate a child’s physical, psychological and social distress.
  • Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.
  • It can be provided in tertiary care facilities, in community health centers and even in children's homes.
  • Life-limiting illness is defined as a condition where premature death is usual, for example, Duchenne muscular dystrophy.
  • Life-threatening illness is one where there is a high probability of premature death due to severe illness, but there is also a chance of long-term survival to adulthood. For example, children receiving cancer treatment or admitted to intensive care after an acute injury. The use of the term ‘terminal illness’ can often be confusing. It is most frequently used to describe all children with life-limiting illness, in addition to those with life-threatening illness, when death becomes inevitable. Some groups use the term ‘terminal illness’ only to describe children who are in the process of dying, as it is difficult to consider the well child with cystic fibrosis or Batten disease, for example, as being terminally ill.
  • The DCPPCC does not use the phrase “terminal illness.” However, a child may be referred to as being in the “terminal” phase of a life-threatening or life-limiting illness.

Children who should receive palliative care:
These children can be considered in four categories, based on A Guide to the Development of Children's Palliative Care Services produced by the Association for Children with Life threatening or Terminal Conditions and their Families (ACT):

  • Group 1 – life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be necessary alongside attempts at curative treatment and/or if treatment fails.
  • Group 2 – 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, such as cystic fibrosis.
  • Group 3 – progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years, for example, Batten disease and muscular dystrophy.
  • Group 4 – irreversible but non-progressive conditions with complex healthcare needs leading to complications and likelihood of premature death. Examples include severe cerebral palsy and multiple disabilities following brain or spinal cord insult.