What is paediatric palliative care?
Paediatric palliative care is the term used to describe the care and support given to a child or adolescent who has a life-limiting illness. The aim of palliative care is to achieve the best quality of life for patients and families. It is sometimes also referred to as supportive care. Palliative care seeks to provide control of symptoms. These may be due either to the disease itself (eg, cancer) or to the treatment of the disease (eg, nausea that can be a side effect of some medications).
Palliative care does not mean the withdrawal of all treatment. For some children, palliative care may be needed from birth or infancy and may continue for many years. Other children may not need palliative care until they are older, and sometimes only for a short time. Palliative care is not just for children with cancer. Many life-limiting diseases that affect children are different to those of adults, and can be rare and run in families. A child’s diagnosis will determine what type of care is required. In some cases, the shift from treatment aimed to cure a disease or prolong good quality of life, to palliative care may not be very clear. Sometimes both approaches to treatment may be required at the same time.
Where cure is unlikely or no longer possible, the focus of care is to ensure a child's comfort and quality of life. As with all dimensions of paediatric care, the family is considered an integral part of this process and is provided with support through this final stage of the child’s illness, death and bereavement.
There are many definitions of paediatric palliative care. The World Health Organization’s (WHO) definition is widely used around the world and is currently being considered for use in Australia.
Palliative care for children represents a special, although closely related field to adult palliative care. The WHO’s definition of palliative care appropriate for children and their families follows. Its principles apply to other paediatric chronic disorders as well. (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.
Problems specific to children and adolescents
Children and adolescents are different to adults in many ways. Many of these differences can be explained by a child’s developmental stage. Their needs are unique and require special consideration. This influences all aspects of a child’s including:
- His/her understanding of illness and death
- Ability to communicate and participate in decision making about treatment, and
- The way a child’s body responds to and is affected by medications and other treatments.
Another important part of a child’s care is their family. They are central to his or her life. Therefore, health professionals ensure that paediatric care is always family focused and centred on the unique needs of the child. Care is provided to meet the needs of the child and all members of the family unit including siblings, grandparents, friends and other significant people.
Where can I access resources specific to children and adolescents?
Palliative Care Australia has developed a paediatric palliative care resource called Journeys – Palliative Care for Children and Teenagers. This is an information resource designed to prepare families and their children for the many situations and issues they may face as they live with their child’s illness. It also provides information about available resources in each state or territory. There is specific information for families living in rural and remote areas, families from culturally diverse backgrounds and Indigenous families.
Other resources
This page was created on 14 May 2008 and will be reviewed in May 2010