I have seen many families face the difficult decisions of end of life care for their children. This is a great post on a difficult but necessary dialogue.
Until we needed to enroll my daughter Alexis in a hospice program, I really had no idea how poorly we as a country manage the needs of children who face terminal diseases. Admittedly, having a conversation about children who face death from disease is not the most pleasant of topics. With that said, considering the fact that cancer is the number one leading cause of death by disease in this country for our children, it truly surprised me, and continues to surprise me, the lack of standard of care for children in hospice settings.
When we originally enrolled Alexis in the local hospice program, in fact the only hospice program in the area, there was no pediatric protocol. This seemed quite strange to us considering the number of parents we knew who had indeed lost children in our area. As we discussed hospice with other cancer families from around the…
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