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