As a parent(s), you recently heard that your child is seriously ill and that there is no cure for this condition. Your child will eventually die from this condition. The caregivers make every effort to take the best possible care of him or her. Taking good care does not mean 'making things better' (healing), but ensuring that your child can live the life that remains as comfortably as possible. This is called palliative care.

Pediatric palliative care is much more than just terminal care. It starts with making a life-threatening or life-shortening diagnosis - whether a cure is still possible or not. Pediatric palliative care is about improving the quality of life by alleviating physical symptoms and by providing psychosocial, emotional and spiritual support for the child and family. To achieve this, an active attitude of healthcare professionals is important, from multiple disciplines and that looks beyond the walls of the hospital.

Facts and numbers

Palliative care for children in the Netherlands concerns approximately 5,000 to 7,000 children. Often with complex congenital disorders, disorders of nerves and muscles, heart, lung and metabolic diseases. Also oncological conditions (types of cancer, < 25%). The care often has to take place in the hospital and is almost never provided by general practitioners. Palliative care for children lasts on average many years. Most patients are younger than 5 years at the start of the palliative part. About 1,200 children under the age of 18 die each year from the consequences of a serious illness. Palliative care for children is different from adults in many ways. The mere fact that children pick up the thread fairly quickly after bad news sometimes makes the palliative phase very unpredictable.

Some disorders first have a trajectory aimed at healing. This is called curative care. In the long run, the curative options may be exhausted. With other disorders, it is clear from the outset that there is no cure.

In the course of a disease process in which no cure is (any longer) possible, four phases are distinguished (phase 1 and 2 exist side by side). These four phases together form a palliative care pathway (figure 1, the spectrum of palliative care).

• Phase 1: this focuses mainly on the treatment of the disease, with the aim of relieving symptoms and sometimes prolonging life (disease-oriented palliation).
• Phase 2: when the treatment of the disease works less or no longer as well or gives too many side effects, the treatment is increasingly (and finally only) focused on keeping the complaints under control (symptom-oriented palliation).
• Phase 3: the dying phase starts when there are signs that death will happen in the short term.
• Phase 4: after death there is a phase of aftercare. This lasts for as long as next of kin need aftercare.