Yesterday was my first day with the pediatric palliative care team. I felt like a fish out of water. For the most part, the people I see in the adult world are older. They have lived a full life, have children, grandchildren, sometimes great-grandchildren. Certainly, not all the adults I see are older. There are the few younger adults who had, unfortunately, developed cancer when their children are still young. They are faced with the knowledge that they may not see their children graduate high school or college, see them get married, or have grandchildren of their own. But the grand majority are older. The children are more difficult for me. I cannot fathom what it would be like to have a child who you know you will end up burying. I cannot imagine having to make decisions that would lead to my child's death. I also struggle to understand what quality of life looks like in a person with severe disabilities that make it so they are dependent on others for everything. I realize that they do enjoy life, but that's so beyond what I can understand. I have never truly had a disability. I have been fiercely independent for as long as I can remember. I also do not have any children, so that bond from parent to child is also beyond me.
The other thing that gets me are the patients we have that are practically health illiterate and don't have any of the support they need. In part, there is always a pride issue. No one wants to admit that they have troubles affording the necessities. I felt bad getting impatient today, only to realize that there was a lack of support, reading difficulties, and a lack of understanding of the whole picture. I wish I'd had more time to talk about where things were, but with urgent issues and lack of time, that wasn't feasible. I only wish there was more I could do to help. He, in a way, was like a child that didn't have a parent to help protect him. He had to fend for himself. How do we help support in this situation? It breaks my heart.