Glossary of words and terms

Descriptions and definitions of commonly used
words and terms in children’s palliative care

Child

A child is a young person aged between 0 and 18 years.

_____________________________________________________________________________________________________________

Children’s palliative care

Also known as paediatric palliative care, children’s palliative care is holistic care delivered by a multidisciplinary team of people with the appropriate training. It provides tailored support to address the physical, spiritual, emotional and social needs of a child with a life-threatening or life-limiting condition and extends this care to the child’s family. It can begin at the time of diagnosis or at any point along the progression of the illness even when curative treatments are appropriate. Palliative care for children continues throughout the remainder of the child’s life, accompanies and supports the child and the family at the end of life and continues this support into the bereavement period, for as long as it is needed. The focus of care is on improving and enhancing quality of life, ensuring a pain free and peaceful death and providing support in bereavement.

_____________________________________________________________________________________________________________

End-of-life

The end of life phase begins when it becomes evident that death is imminent. It may begin hours, days or even weeks before the death.

_____________________________________________________________________________________________________________

End-of-life care

End-of-life care is care that focuses on preparing for an anticipated death and managing the end of life phase of a terminal medical condition. It includes care during the time of death and immediately afterwards. It also includes pain and symptom management as well as psychosocial, spiritual and practical support for the family.

_____________________________________________________________________________________________________________

Ethics

Ethics is based on well-founded standards of right and wrong that prescribe what humans ought to do, usually in terms of rights, obligations, benefits to society, fairness, or specific virtues. (Markkula Center for Applied Ethics)

_____________________________________________________________________________________________________________

Life-limiting conditions

Also known as life-shortening conditions, life-limiting conditions are those for which there is no cure and death is inevitable, either in childhood or early adulthood. Some life-limiting illnesses progress quickly and others may cause a slow deterioration over many years, such as Duchenne’s muscular dystrophy.

_____________________________________________________________________________________________________________

Life-threatening conditions

Life-threatening conditions are those where there is a possibility of a cure or remission, failure of which will lead to death. Cancer is an example of a life-threatening condition.

_____________________________________________________________________________________________________________

Morals

Morals are principles and beliefs concerning right and wrong behaviour.

_____________________________________________________________________________________________________________

Neonatal palliative care

Neonatal palliative care is a unique multi-disciplinary approach for the care of newborns affected by life-limiting or complex medical conditions with uncertain prognosis and their families.

________________________________________________________________________________________________________

Perinatal palliative care

Perinatal palliative care is the holistic, multidisciplinary care for infants, women and families following antenatal or postnatal diagnosis of life-limiting conditions, providing integrated ongoing support through pregnancy, delivery, postnatal and where appropriate, continuing bereavement care.

_____________________________________________________________________________________________________________

Respite care

Respite care in children’s palliative care involves short term or temporary care of a sick or disabled child. The length and regularity of respite care will depend on available resources. In countries such as the UK, children’s hospices offer sick children and their families up to 2 weeks ‘short break care’ where children can be accommodated and cared for both with or without their families and siblings.

_____________________________________________________________________________________________________________

Symptom management

Symptom management is the management of symptoms common to and associated with life-limiting and life-threatening conditions. Usually referring to physical symptoms it can also encompass the provision of psychosocial and spiritual care.

_____________________________________________________________________________________________________________

Young person or adolescent

A young person or adolescent is a person from their 13th to their 18th birthday.

_____________________________________________________________________________________________________________

Young adult

A young adult is a person from their 18th birthday into their early twenties.