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Pediatric Palliative Care: A Personal Story



this video is a presentation of the National Institute of Nursing Research pediatric palliative care a personal story December 6th 1998 my daughter was diagnosed with neuroblastoma was a very difficult day probably the worst day that in my life when Rachel was first diagnosed we didn't have palliative care and I had to fight with her on a daily basis to take oral medication she had to have finger pricks we were forcing her to do things she didn't want to do she didn't like to see the nurses and the doctors come in the room because she was always afraid of what would happen next when we were introduced to palliative care at the other Hospital Rachel actually fell in love with her doctor and ran to see him on a regular basis because she was a happier child and that's what we want we want our children to be happy so palliative care really created a huge difference in Rachel's life you had your oncology doctors you had your palliative care doctors you had your nurses you had the social workers involved you also had the alternative therapy doctors that all became very involved and the best part about this was that I became part of the team I was listened to they included me they included Rachel and part of the discussions they talked to her they listened to her they helped her along as she was going through these treatments through surgery they made sure that she was never in any pain things that hadn't happened for us before and I was amazed at the difference in the quality of care that she had and I felt very comfortable with that care that she was getting all of our family received palliative care at different times especially the other siblings it was the emotional care that they received through the social workers through the Child Life specialists and even the doctors took time to visit with the children and talk to them about what was happening to them about the diagnosis and work with them as best as possible to answer their questions and to be open to what might happen in the future so it was the whole care team that did that with my family pediatric palliative care no matter what the diagnosis is so important to be introduced from the beginning of diagnosis the doctor just has to introduce the palliative care doctor as part of their care team and it's included in the whole care of the child palliative care was the support mechanism that kept my sanity for more information about pediatric palliative care please visit www.un.org/webcast you

Glenn Chapman

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