Paediatric palliative medicine

The concept of paediatric palliative care is an extension of palliative care philosophy, but with specific differences that distinguish it from adult palliative care. Taken broadly, the phrase paediatric palliative care designates a programme or approach to care that seeks to maximize present quality of life by adapting principles of palliative care to children themselves, including newborn infants and adolescents, or their family members, and to other concerned persons who are coping with any of the following as they relate to a child: living with serious or life-threatening illness, the imminent likelihood of dying, or the aftermath of death^{( 1 )}.

Several consensus groups and committees have developed formalized statements elucidating these concepts^{( 2 – 5 )}. Care is provided to children and their families who live with progressive life-threatening diseases. Various alternative terms include ‘life-limiting’ instead of ‘life-threatening’ and ‘condition’ instead of ‘disease’. Nevertheless, at the core they all describe a population of children with severely impaired health who have a high risk of dying before they reach adulthood.

Since the late 1960s, the adult palliative care movement increased in size and sophistication as a result of a growing awareness of the needs of terminally ill people and their families. Palliative care for adults has evolved to a stage where it is understood and is perceived as a reasonable option of care for individuals who may be suffering from an incurable illness. Palliative care for children, however, is in much earlier stages of acceptance and only beginning to receive its place in the spectrum of health-care services. The strongly held belief that ‘children are not supposed to die’ creates societal barriers to facing this reality.

It has been said sometimes regarding adult and paediatric palliative care that the fields ‘share the same words but mean different things’. For example, using aggressive, curative interventions up until death is quite common in paediatrics. There is far less acceptance of the inevitability of death and therefore an emphasis on cure, or at least intervention, throughout the trajectory. Since palliative care can be introduced early in the course of illness, for example soon after diagnosis of an incurable life-threatening disease, children may be in a paediatric palliative programme for many years. The term ‘length of stay’ therefore means something quite different to paediatric and adult clinicians. Children require specialized approaches and services to meet their unique needs and they require a combination of specialized caregivers in addition to their family. Additionally, family members, especially siblings, have special unique needs and concerns. Their needs and how they are met will vary greatly according to the characteristics and age of each child, the family, and caregivers involved.