Shared Decision Making
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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.
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“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.
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A life-limiting fetal diagnosis: Empowering but not burdening the parents as decision-makers.
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Shared Decision-Making: When parents ask the doctor for a recommendation.
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Decision-making about quality of life, with no judgement: “The medical field has advancements that our ethics haven’t quite caught up with.”
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Decision-making about a trach for my son: palliative care appreciates that it can be a loving decision not to do everything.
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How parental decision-making changes over time: growing confidence and a familiarity with how it feels that makes it feel more tolerable
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A physician’s thoughts for a parent who is afraid of making ‘a wrong decision.’
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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
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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.’"
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A mom on deciding this time NOT to treat. “When its disease progression, forward doesn’t look the same.”
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The notion of REVERSIBILITY to inform decision-making; and asking “Has it gotten harder for this child to live in their body?”
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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.”
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MD-Parent Alignment, Guided Recommendations and Trust
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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.’
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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
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Palliative care helps reframe interventions like feeding tubes.
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Learning from each other: Palliative Care and Treating the pneumonias
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Decision-Making: My biggest fear was getting caught in the medical machine.
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A nurse on helping families with decision-making and goals of care. (ACP)
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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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Palliative Care Helps with Difficult Decisions
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Problems of the CNS: What are family’s expectations: ‘Fix’ vs Accepting a change in baseline.
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The doctor explained: not doing a feeding tube isn’t same as letting your child be hungry.
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Parenting a Medically Complex Child: Decision Making Re Tubes and Surgeries
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You can change your mind re treatment and care plan.
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We weren’t tempted to do any experimental trials.
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Decision-Making: We created a space where we examined what the Next Steps are.
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Tracheostomy for my son?
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Spinal surgery for my son? The most difficult decision I’ve had to make.
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You Can Say, "That's Enough."
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The Pediatrician and Shared Decision Making: It was a true collaboration.
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I always want parents to know they have a choice
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Once we understood what it was, we got on board pretty quickly.
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She is an individual, not a diagnosis.
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It’s important that information get shared.
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There’s no ONE conversation.
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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