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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Advance Care Planning

Medical Order forms: Do Not Resuscitate, Allow Natural Death

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Medical Order forms: Do Not Resuscitate, Allow Natural Death

Medical Order forms: Do Not Resuscitate, Allow Natural Death

Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how the opportunity arose around surgery to discuss the parents’ wishes and the use of medical forms. Doctor: The form is like insurance that your wishes are followed by emergency responders. And if you change your mind, you don’t have to show the form to anyone.

Parent: It was a way to put the agency/power back on to me. It also got us thinking about the Next Time and the Next Time and we needed to start doing that.

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