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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Shared Decision-Making

Problems of the CNS: What are family’s expectations: ‘Fix’ vs Accepting a change in baseline.

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Problems of the CNS: What are family’s expectations: ‘Fix’ vs Accepting a change in baseline.

Problems of the CNS: What are family’s expectations: ‘Fix’ vs Accepting a change in baseline.

A pediatric palliative care doctor who specializes in children with severe neurological impairment talks about the provider’s role in working with families around the goal of fixing the problem vs. accepting that it’s not going to get better. Where is the family? What is their expectation?

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