Julie Hauer, MD
Pediatric Palliative Care Doctor
Medical Director, Seven Hills Residence
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Anticipatory Guidance: Dr. Hauer helped me anticipate how the end might look, coming on slowly.
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Siblings and a Residential Home: “She was heartbroken and mad.”
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Evaluating: Does it make sense to run more tests (in cases of the CNS)?
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Intractable problems regulated by the CNS: Fix vs Modify. Asking to understand “I can’t make it better.”
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The Conversation and Advance Care Planning: “As Baseline moved, we’d make a new plan”
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Problems of the CNS: Is this a new acute problem OR a change in Baseline
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With problems of the CNS, we can’t be too much in FIX mode every day. We need to understand where we are at. And sometimes the hospital environment complicates things.
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Placing my son in a residential facility one of the most difficult decisions in my life.
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Problems of the CNS: What are family’s expectations: ‘Fix’ vs Accepting a change in baseline.
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Transitioning to End of Life: Helping each sibling navigate it their own way.
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She, the sister, finally understood. She didn’t want to see him suffering in his life.
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Siblings: Holding on to hope while also understanding death may happen. “The staff was worried she was too hopeful, unrealistic.”
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Parenting a child with severe neurological impairment: Helping the siblings understand the decisions.
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Peeling things back at the end is tough. It’s so tangible in terms of what it reflects.
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Dialing back feeding at the end: looking for indications that the body isn’t tolerating feeds.
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Intractable problems and a new Baseline: When the hospital can’t change the outcome
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Palliative care helps parents pause and reflect.
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Offering parents information and giving them the space to reflect: Are we getting the right balance?
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