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