Hospice isn’t just for terminally ill old people…

Did you know? Hospice offers a WIDE range of FREE and low-cost services for the entire community–not just for old folks who are dying and their families.

As the parent of a chronically ill and medically fragile child, it was SCARY when the hospital team at Johns Hopkins Pediatric Intensive Care Unit in Baltimore started mentioning, “quality of life,” “we’ve done all we can do” and “hospice” during our last staycation in the summer of 2015. My family and I were DISTRAUGHT at the idea that we were “giving up” on our four year old warrior, Harvey, by signing up for the program that meant death was imminent–-hospice. Pediatric hospice.

I didn’t even know pediatric hospice was a “thing.”

As we learned more about hospice, specifically pediatric hospice, we heard over and over that “hospice isn’t just for old people” and “going on hospice doesn’t always mean someone is about to die.” Pediatric hospice was different such that it was designed to be flexible and provided much needed support for families going through the hardest time in their lives. Pediatric hospice patients were allowed to bounce on and off hospice as their medical supports dictated and, should the child find the road to recovery, they could even graduate from hospice altogether.

What?! I had never considered that a hospice patient could exit hospice in any way other than by death. I was hopeful.

And just like that, hospice morphed from SCARY to SANCTUARY.

Read more about our journey with pediatric hospice and resources available in Maryland here.