It is crucial that families do not misconstrue decisions to withhold or withdraw certain medical interventions as withdrawal of care. The goal is always to provide the best possible care to the child and to help them live as well as possible within the limits imposed by their illness.

The commencement of advance care planning provides an opportunity to raise the question of whether the child should be referred to a palliative care service.

Palliative care specialists may be helpful in a number of ways. They are trained in helping families think through priorities in the face of life-limiting illness and can offer a range of supports to the child and family. However, the offer of palliative care can be confronting for families.

Palliative care is often misunderstood as:

• terminal care
• giving up hope
• passive (for example, ‘there’s nothing more we can do’)
• only for the elderly
• only for people with cancer
• euthanasia.

In fact, palliative care is for any person of any age with any condition that significantly limits their life expectancy and quality of life. It is an active, evidence-based and highly specialised area of practice.

A key message to families is that receiving support from palliative care does not mean they must forego disease-focused treatment. It is possible for palliative care to be integrated with other therapies, even those directed at a cure.

At a practical level, a palliative care service should be able to assist with:

• symptom management
• advance care planning
• supporting the sick child, parents and siblings
• providing links to supports such as a hospice (Very Special Kids) and community-based palliative care services
• providing families with information
• specialist equipment.

In Victoria, a statewide consultancy service (the Victorian Paediatric Palliative Care Program) is available to provide an additional layer of support to the child, their family and the health professionals caring for them.