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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Palliative Care

Always hoping we can make it a little bit better.

Page: 8 of 9

Always hoping we can make it a little bit better.

Always hoping we can make it a little bit better.

The nurse says that role of the palliative care team is to find out what is most important to parents for their children: what makes today a good day for their child and figuring out all the possible ways that there are. Sometimes it’s medicine, sometimes it’s people coming to the house. The mom shares how the pedi pall team also really came to know her child so they could say to other docs what was typical and what wasn’t. (The mom of two sons with mitochondrial disease and their pediatric palliative care nurse talk about how they work together to get her sons comfortable.)

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