Peds Hospice

KelRN215, BSN, RN · Feb 10, 2015

There are very few purely pediatric hospice programs around. I knew of one in my city and it went under relatively quickly. We currently work with another hospice that has a pediatric program but has a much larger adult program. There honestly isn't enough business for a pediatric hospice to thrive.

Thought I have the utmost respect for parents who go the hospice route, in general society pressures them to fight until the very end. I recall a child I worked with for a few years (not as a nurse, she came to the camp that I volunteer at). She had a very aggressive brain tumor with a very low survival rate. When she had an MRI last year which revealed rapidly progressing cancer, her parents realized it was time to stop. When they shared this decision on facebook, all these idiots from their past came out to tell them that they needed to try this or that treatment, something that they probably read about on Wikipedia.

Most of my patients (I do home visits primarily for pediatric oncology patients) who transition to hospice do so very late in the game. Rarely are they on hospice for more than a couple weeks, as it's often not until every option has been exhausted that parents will finally agree to hospice. I literally had a patient get sent home on hospice on a Monday and die that Wednesday last year.

KelRN215, BSN, RN · Feb 10, 2015

Also want to add- many dying children end up dying in the hospital. Many parents can't bear the thought of them dying at home. When I worked in the hospital, we had a room on the floor that doubled as our hospice room, for kids at the end of life who were on comfort care. Many of these kids could have received the same care at home but their parents didn't want them at home- sometimes because of the siblings, sometimes because they don't want to have to see the room their child died in for the rest of their lives, etc. I knew a family who moved out of their house shortly after their son died because they didn't think they could live in the house that he died in.

Trisaratops · Mar 2, 2015

Hi,

I used to work at a pediatric hospice. Like others have said, it's a pretty small population. We were a new company and building a business revolving around kids dying is really hard. Most of the kiddos we got were babies with heart defects (amount other things) or teenagers with cp or the like whose lungs were crapping out and family didn't want a trach, ect. Oncology patients made up only a small part of our population as there were several big children's onc programs around and thry held onto their kids.

As far as how to get involved, volunteer at camps for kids with life limiting illnesses. You can do a sort of reverse networking find out where they are treated, who/where the docs are, ect.

Trisaratops · Mar 2, 2015

Also I would suggest seeing if you can take ELNEC PPC -end of life nursing education consortium for pediatric palliative care. Going to th site where it is taught will connect you with those already in the field and you can network tht way.