Theme: Advance Care Planning

A mom on the decision to put her daughter in hospice: we knew we could revoke it at any time and go back to the hospital. … And then she said ‘No Hospital.’

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A mom on the decision to put her daughter in hospice: we knew we could revoke it at any time and go back to the hospital. … And then she said ‘No Hospital.’

In this Zoom interview with CPN, Michelle — mother of Alex (age 7) and Julianna, who had a severe form of Charcot-Marie-Tooth disease and died at age 5 — shares the parents’ journey from No Hospice to Hospice, from fear of Julianna dying at home to Julianna’s articulate, spiritual insistence she stay at home. … “We just felt like we had to honor that. We had the support of hospice; we knew we could call on them. We knew we could keep her comfortable and still there was that out if she changed her mind or if we changed our mind. That made it less scary knowing that we could make that decision.”