Anticipating End-of-Life: Worries and Emotions
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“It was very weird to have a newborn with a DNR paper on our fridge. . . It was one of the most uncertain times we could ever be in as humans.”
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“You have to adapt. You have to learn to live without.”
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Every parent wants their child to live no matter what; but at what cost?
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I was worried about the empty crib.
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A social worker: When parents ask ‘How do parents do this?’ I talk about the trajectory of grief.
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A palliative care social worker on when a parent is worried about being in the room when their child dies.
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A palliative care social worker on if the child dies when the parent is out of the room.
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A pediatric social worker on helping parents leave the hospital after their child has died.
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I try to prepare but there’s just not going to be any preparation.
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I don’t know what I’m going to do when I don’t have to worry.
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Wanting desperately to know what it looks like.
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Instantly I felt I was on the other side.
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There’s a shift that happens emotionally.
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We try to make sure they are as prepared as they can be for parents.
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On the one hand you want them to stay with you, on the other hand you want them to have that peace and rest.
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A nurse answers: the thing parents worry most about ...
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A Nurse on end-of-life: “There isn’t any real way to prepare parents for it.”
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A nurse on parents asking, “Am I going to be able to survive this?”
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A nurse: how a death in the community can affect other parents of seriously ill children
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When the child that is sick is the parents’ only child
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Uncertainty in the face of serious illness in a child: Unpacking parents’ worries.
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Am I going to be able to go on?
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Preparing … or Not.
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It’s hard to imagine your life without your child.
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It’s OK to think about the future.
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It’s tough to talk about end-of-life preparedness, but it’s part of what we have to go through
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There will be a sense of relief.
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