Understanding paediatric palliative care

Paediatric palliative care is a unique and often challenging area of palliative care. This small group of children and young people have a wide and diverse range of conditions, some of which may be rare, and some of which may have a clinical course which runs over many years. Prognostic uncertainty, and not likelihood of survival, should determine the need for palliative care. [1]

In a population of 250,000 people with about 50,000 children, in one year:

  • 8 children are likely to die from life-limiting conditions (3 from cancer, 5 from other conditions)
  • 60 to 80 would be suffering from a life- limiting condition;
  • 30 to 40 of them would need specialized palliative care. [2]

Definition of paediatric palliative care

Although end-of-life care forms part of paediatric palliative care, elements of palliative care may be needed from diagnosis. Palliative care for children represents a special, albeit closely related field to adult palliative care. The World Health Organisation’s definition of palliative care, appropriate for children and their families is as follows; the principles apply to other paediatric chronic disorders (WHO 1998a):

  • 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
  • Health 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 centres and even in children's homes.

Life-limiting conditions affecting children

Advances in medical care means children and young people are now living longer and have increasingly complex care needs. They will also present with diverse conditions including: cancer, cystic fibrosis, neurodegenerative conditions, or stable conditions that may have life threatening complications such as severe cerebral palsy. The Palliative Care Australia guidelines for paediatrics identify four main categories of life-limiting illness among children.

  1. Life-threatening conditions for which curative treatment may be feasible but can fail. Examples include:
    1. Children with cancer when treatment fails (e.g. stage 4 neuroblastoma)
    2. Irreversible organ failure (not amenable to transplantation or if transplantation is unsuccessful).

  2. Life-limiting conditions where premature death is inevitable (possibly with long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities). Examples include:
    1. HIV,
    2. complex cardiac disease
    3. Duchenne muscular dystrophy (DMD).

  3. Life-limiting, progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years. Examples include:
    1. neurodegenerative conditions (e.g. Batten disease)
    2. metabolic conditions (e.g. mucopolysaccharidoses)
    3. neuromuscular conditions (e.g. spinal muscular atrophy type 1).

  4. Irreversible but non-progressive life-limiting conditions causing severe disability, leading to susceptibility of health complications and likelihood of premature death. Examples include:
    1. severe cerebral palsy
    2. multiple disabilities (such as following brain or spinal cord injury).

Issues specific to children and young persons

  • There is tremendous variation in the state of readiness for transition to palliative care
  • Healthcare professionals with expertise in paediatric palliative care work in conjunction with the primary team; they may take the lead in symptom management but children remain under the care of their primary care providers
  • Developmental factors influence all aspects of a child’s care including his / her understanding of illness and death, ability to communicate and participate in decision-making, pharmacodynamics and pharmacokinetics of drugs
  • Access to key components of the palliative care model (see planning and provision of care) is often required before a child or young person has access to specialist palliative care providers
  • Siblings require specific educational and psychosocial support throughout the illness trajectory that is developmentally appropriate
  • The impact of a child’s progressive, life-limiting illness has a profound effect on all dimensions of family life, including family structure and organisation which become permanently altered
  • The death of a child is considered to be the most traumatic experience a family can suffer. Grief associated with the loss of a child is acknowledged as particularly intense with a high risk of complicated bereavement.

Planning and provision of care

  • The components of the palliative care model (ie, supportive care that seeks to provide symptom control due to disease or treatment) can be given alongside active treatment aimed at cure or prolonging good quality of life
  • Although most families will opt for palliative care to be provided in the home, a flexible approach to care delivery should be adopted (eg, home, hospital, respite or hospice)
  • Access to regular respite is a cornerstone of care for many families
  • Care should be family focused and involve the child and any family member or significant person who provides physical, psychological, spiritual and social support
  • Practical and educational resources must be provided to families to facilitate care in the home and at school. Practical resources include aids and equipment, and appropriate nutrition and pain management strategies. Educational resources should be appropriate to age, cognitive and educational ability and culturally appropriate
  • A paediatrician with expertise in the child’s condition should be involved in the care process
  • Continuity of care from the child’s primary care team is essential and should include planning and sharing of care strategies with all care providers whether in the home, hospital, respite centre or hospice if available
  • Children and families should be fully informed of treatment options and changes in their child’s condition, and involved in care planning and decision making
  • Care should be linked to local community resources and agencies including access to financial support
  • Ideally, families require access to expert advice and care 24 hours a day, regardless of the place of care.

  1. Waldman E, Wolfe J. Palliative care for children with cancer. Nat Rev Clin Oncol. 2013 Feb;10(2):100-7. Epub 2013 Jan 22.
  2. European Association of Palliative Care (EAPC) Taskforce for palliative care in children. Palliative care for infants, children and young people: The facts. Milano: EAPC; 2009.

Last updated 20 August 2021