Shared Decision Making
Decision-making over 14 months: Our goal was always for her to feel loved and be out of the hospital, at home, as much as possible.
Parents Casey and Brian talk about living into their daughter’s life as she continued to live and grow beyond expectations following a prenatal diagnosis of heterotaxy. They elect a first cardiac surgery; and a second surgery. They reflect on what it means to be cardiac parents … and prioritizing her life out of the hospital, not on the cardiac floor, and what that ultimately meant. “It’s OK we didn’t get the big miracle.”
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Decision-making over 14 months: Our goal was always for her to feel loved and be out of the hospital, at home, as much as possible.
“I don’t use the terminology of quality of life. It labels something that is very difficult to label.” A perinatal doctor on listening to what is in the parents’ heart and hearing where they are headed.
A life-limiting fetal diagnosis: Empowering but not burdening the parents as decision-makers.
Shared Decision-Making: When parents ask the doctor for a recommendation.
Decision-making about quality of life, with no judgement: “The medical field has advancements that our ethics haven’t quite caught up with.”
Decision-making about a trach for my son: palliative care appreciates that it can be a loving decision not to do everything.
How parental decision-making changes over time: growing confidence and a familiarity with how it feels that makes it feel more tolerable
A physician’s thoughts for a parent who is afraid of making ‘a wrong decision.’
A physician on the power differential between clinician and patient/parent in the hospital: There is such a cost to parents that is not the same for clinicians
A couple’s advice to fellow parents: “Don’t do anything you’re not comfortable with; It’s OK to say to the doctor, ‘I don’t know, can you please give me a list of things to consider.’"
A mom on deciding this time NOT to treat. “When its disease progression, forward doesn’t look the same.”
The notion of REVERSIBILITY to inform decision-making; and asking “Has it gotten harder for this child to live in their body?”
A Rare Diagnosis: “I knew he wasn’t going to be the exception . . . I had to connect the dots. No one else did that for me. But then on the backside, clinicians said, I would have made the same decision.”
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.
We decided to let her do it on her own and she’s been here ever since.
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Related
From our Blog:
- 6 Things Primary Care Clinicians Can Do To Support Children with Complex Medical Needs
- Understanding Shared Decision-Making
- Find Your Truths to Hold Onto
- Collaborative Goal-Setting
- Language that builds a bridge: "Please help me understand"
- What can parents handle? The truth (delivered with care).
- For him, not to him
- Love Wins
- Connecting the Dots