Shared Decision Making

MD-Parent Alignment, Guided Recommendations and Trust
A mom: I needed to be told ‘This is what your son needs.’ When there is parent-doctor alignment and trust, a parent can hear and accept that.
Kate, a mom of two sons born with cardiomyopathy, and her sons’ heart doctor, Dr. Elizabeth Blume, talk about shared decision-making and the balance between strong parent advocacy and strong medical counsel. “The more the parent has that fierce advocacy, actually the more they need the clear guidelines about what their child needs.”
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MD-Parent Alignment, Guided Recommendations and Trust

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.’

It’s easy to get overwhelmed; so being an integral part of your child’s care team allows you to have conversations and know why you’re having them

Palliative care helps reframe interventions like feeding tubes.

Learning from each other: Palliative Care and Treating the pneumonias

Decision-Making: My biggest fear was getting caught in the medical machine.

A nurse on helping families with decision-making and goals of care. (ACP)

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.”

Palliative Care Helps with Difficult Decisions

Problems of the CNS: What are family’s expectations: ‘Fix’ vs Accepting a change in baseline.

The doctor explained: not doing a feeding tube isn’t same as letting your child be hungry.

Parenting a Medically Complex Child: Decision Making Re Tubes and Surgeries

You can change your mind re treatment and care plan.

We weren’t tempted to do any experimental trials.

Decision-Making: We created a space where we examined what the Next Steps are.

Tracheostomy for my son?

Spinal surgery for my son? The most difficult decision I’ve had to make.

You Can Say, "That's Enough."

The Pediatrician and Shared Decision Making: It was a true collaboration.

I always want parents to know they have a choice

Once we understood what it was, we got on board pretty quickly.

She is an individual, not a diagnosis.

It’s important that information get shared.

There’s no ONE conversation.
