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.The United 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 specialized 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 also 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.
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