When can palliative care be introduced for children?

Factors that influence the introduction of a palliative approach to care in a child include the nature of the underlying condition and its expected disease trajectory, the clinical assessment made by the child’s general paediatrician, the parents’ preferences, and the views of the child (if appropriate).

The child’s paediatrician is often in the best position to discuss the prognosis and goals of care with the family, including the possible introduction of palliative care. It is important to start these discussions as early as possible; in perinatal palliative care, these discussions may take place before a child is born.

The ‘surprise question’ can be a useful way to consider whether palliative care is appropriate for a child. The healthcare professional may ask themselves the question ‘Would I be surprised if this child were to die in the next 6 to 12 months?’. If the answer is ‘no’, consider referral to a specialist paediatric palliative care service for additional support. Other factors that may trigger referral to a specialist service are a high symptom burden (eg uncontrolled pain, intractable seizures) or complex psychosocial factors. Early referral can be associated with a number of benefits, including development of a relationship between the child, family and palliative care healthcare professionals. This allows supports to be put in place and symptoms to be addressed early. In addition, emotional issues can be discussed, and the child and their family can take time to consider their life goals and preferences. Early discussions can help the child and their family feel more secure, knowing that they will be supported whatever happens.

The nature of a child’s condition and the expected disease trajectory may influence the timing of transition to a palliative approach. Many neurodegenerative and metabolic conditions do not have any curative treatment options, and palliative care is provided from diagnosis. For children with cancer, transition to palliative care may occur when the cancer progresses despite treatment, or if there is a relapse. However, the timing of the transition can change because many children’s cancers can be cured, even if the disease has relapsed or is widespread. For children with heart failure, transition to a palliative approach may occur when they no longer respond to medical management (eg diuretic therapy) and further surgery or transplantation is not possible. Alternatively, some children may be managed using a palliative approach while they are awaiting heart transplantation.

For many children, the process of transition to palliative care is gradual, rather than occurring at a specific point in time. The principles of palliative care (eg symptom management, practical and emotional support, spiritual care) can be incorporated into care while treatment is directed towards cure. When curative options are not available, disease-modifying therapies may enhance quality of life (eg antibiotics and chest physiotherapy for children with cystic fibrosis). As the child’s illness progresses, there is increased emphasis on treatment with palliative intent, while treatment directed towards cure recedes. Often an approach of ‘hope for the best, prepare for the worst’ is helpful when the prognosis is not clear.

Referral or transition to palliative care can be made even when the prognosis is not clear; a child may benefit from palliative care support (eg pain management, respite) and then improve, no longer requiring palliative care.

For general information about the introduction of palliative care, see When can palliative care be introduced?.