Enrolling in palliative care services does NOT mean you have given up.
Do not be alarmed if your treating facility offers palliative care shortly after diagnosis. Palliative care is another support system to use throughout your child’s journey and can help you through difficult obstacles that you might experience with a serious illness like DIPG/DMG.
Pediatric palliative care can help minimize pain or discomfort your child experiences due to their condition, and can provide social and emotional support for the entire family. They will work with your child’s healthcare team, focusing on your child’s quality of life throughout their journey.
Pediatric palliative care is not traditional hospice care, and it does not necessarily require you to be enrolled in hospice. This varies state-to-state. In Indiana, pediatric palliative and hospice care are provided by separate organizations. On the other hand, in Maryland, pediatric palliative care is provided by the hospice team. Pediatric palliative (or pediatric hospice) care differs from general hospice services because children can still be receiving medical treatments at the same time they are receiving help from palliative care.
Palliative care can be set up at any time, ideally as soon as you can. Please note that palliative care will work with you to honor your family's cultural, religious, or other beliefs and values.
For more information, visit ninr.nih.gov for Palliative Care for Children.