The family will have all the contact details for their cancer care team, who may well have contacted you directly to provide an aspect of care in the home. They may also have a dedicated palliative care team connected to the cancer service.
Here are some core elements of advice.
- In the sad and difficult situation where cure is no longer likely, children and families are always offered the choice of palliative care at home, in their Principal Treatment Centre (PTC), their Paediatric Oncology Shared Care Unit (POSCU), at a Children’s Hospice or a combination of any of these, to best meet their needs and wishes.
- All patients should have a Specialist Nurse Key Worker who is contactable via their PTC – please contact them with any queries.
- The cancer care team, with the family, will have identified which organisation or team is taking the lead on palliative care as appropriate, regardless of the child or young person’s whereabouts. The family should have their contact details and know how to access 24/7 support. Depending on resources and local structures your community team may be part of the 24/7 arrangements.
- An advanced care plan will usually have been drawn up with the family, outlining the plans for palliative and end-of-life care, in line with their wishes, hopes and beliefs.
- The details of the home care package vary regionally – the cancer care team at the PTC or POSCU will always contact the GP to make them aware of the child’s palliative situation. Childhood cancer: End of life care (GP factsheet)
- In most regions there will be access to hospital, community or hospice palliative care experts who are familiar with palliative care prescribing in paediatrics who will be able to offer advice. Children and young people require (and tolerate) far higher doses of opiates than adults, which cause anxiety in community teams not familiar with paediatric palliative care. Contact the identified specialists for symptom management and medicines advice.
- Children and young people with a terminal prognosis may have an extended period of latency when the disease is inactive, occasionally this may last for a few years. They often attend school and participate in many of their usual activities during this time.
- They should not receive any vaccines, except for the (inactivated) flu vaccine. In the event of a particular outbreak of infectious disease in the region, requiring vaccination please contact the cancer care team at the PTC for advice.
- As far as is possible the philosophy in children’s cancer care is to have as open communication as possible with all the children and young people. If they ask about death you should respond to their questions appropriately and honestly. If you hide information they may be more scared by what might be in their imagination about death. You may want to visit the ‘How to talk about death and dying’ page.
- For more general information visit Section 8: Palliative Care of this resource for more detailed information, our publication set ‘When there isn’t a cure’, or visit our eLearning hub for the foundation level palliative care module.
Page last updated March 2026