This is not the page that any parent wants to see or
read. Unfortunately, it is a reality for many
parents that have a child with cancer.
States as a whole is sorely in need of support in the
palliative care aspect of pediatrics. Hospice
should be a great experience during a very tragic time.
However, many hospice organizations just do not have the
specialty services that are needed for pediatric
patients. Dealing with a dying child is far
different from dealing with a dying adult.
Ask your child's medical team if they have a person
on staff that specializes in pediatric palliative care.
Use this resource as much as possible to coordinate your
child's hospice care. You need someone that knows
about end of life issues for children, specifically.
KMF would like to point you to
Children's Hospice and Palliative Care Coalition.
Based in California, this organization specializes in
pediatric palliative care issues and advocates in the
state of California for families of children in
palliative care. Their nursing staff is also
specialized in children's hospice versus adult hospice.