Palliative & hospice care for
Tay-Sachs, Sandhoff, GM1, Canavan and related diseases
NOT what you think
There are many myths and misconceptions about palliative and hospice care for children. It does not mean giving up hope and it does not suggest that the child has less than six months to live.
The focus of pediatric palliative and hospice care is on life and living, with a focus on improving the quality of life for the child and the family. The child and family are the leaders of an interdisciplinary team of physicians, nurses, social workers, therapists and clergy.
Sadly, not all palliative and hospice agencies are created equal and agencies with pediatric capability are not available in all areas. This section will help you:
- understand the difference between palliative and hospice care
- learn how palliative and hospice care can help
- identify local agencies
- communicate and advocate for the needs of your child and family
Please note that pediatric palliative and hospice care are emerging fields and not all health care providers understand the differences. Be sure to understand how the terms are being used to avoid any confusion or miscommunication.
"We don't have to wait until we are very sick and know this might be it. We can get support from the day we learn something could happen."
~ Mattie Stepanek