Working with the Medical Team
Tension can occur when a family’s love or ritual conflicts with the hospital’s protocols and policy
A palliative care pediatrician describes how tension and mistrust arise when what the family wants and expects bumps into hospital protocols. The job of the clinician is to listen and be transparent.
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Tension can occur when a family’s love or ritual conflicts with the hospital’s protocols and policy
A physician on building alignment with the family: I start with “What is harm vs no harm for your child?” It brings us back to the child.
What can parents do to help clinicians hear them better?
Finding my voice to be my son’s voice.
A mother on what it takes to get listened to by your child’s physician
Some parents lack the courage to speak up. But these kids need people to speak up, protect and advocate for them.
Finding my voice as my daughter’s mother. “Yes, I’m angry, and it just happens I’m black, and a woman. Here I am.”
“When we’re in the hospital, don’t ask me how I’m feeling. I’m in survival mode.”
To be your child’s advocate: “If you have questions, Ask. Don’t be afraid of the doctors.”
Advocating for my child: “If I don’t feel that provider is safe or respectful of my daughter, I go ahead and have them removed.”
Finding my voice as my child’s advocate: “I’m her mother, her father, her doctor, her nurse, I am her everything.”
Expressing emotion in front of the medical team, as a Black parent
A neurologist on validating for parents how their situation isn’t normal. “This isn’t how most people live.”
A neurologist acknowledges the frustration parents feel that doctors can't always figure it out. Medicine is a human endeavor.
Building prognostic awareness re children with serious neurological conditions: the CNS regulates everything.
NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”
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.”
Osteosarcoma in an adolescent and ‘Total Pain’: There were all these compounding issues
The Parent-Palliative Clinician Partnership: Knowing the Child; Interpreting for the Child
“We were trying to prepare her for becoming her own advocate. You need to be forthright.”
A dad to fellow parents: “Be present, have a voice, trust but validate.”
Message to parents: Trust your intuition. Message to clinicians: Listen to what the child and parents want and do whatever you can to make that happen.
In the Room Recording: The primary care pediatrician: quarterback of your child’s care team?
As parents we have the ability to hear information, process it, and push it away so we can function.
My Present-Self message to my Past-Self: “You are doing a good job. You can take a rest.”
In the Zoom Room Recording: What does a good day look like?
Uncertainty: The doctor can’t have all the answers; building a shared partnership.
Cardiomyopathy: A mom on building a trusting relationship with her son’s heart failure doctor
Cardiomyopathy: Learning the second pregnancy is also affected
Two brothers with cardiomyopathy-- one dies unexpectedly at home; keeping the medical team
A mom on decision-making: You do have to anticipate what may lie ahead and then trust yourself. Don’t give your power away.
Bridging the Gap to the medical staff. It was like being in communion with each other.
A mom to medical providers: “For you, you do it all day long. For us, our world just got turned upside down.”
palliative care nurse vs block nursing, in the home
A nurse: I metaphorically lie down on the floor with them.
The community-based nurse: A communication bridge between home and hospital
Shared Decision-Making: Parent and Provider (Trach)
Parenting a Medically Complex Child: Becoming my son's advocate
Our pediatrician was the key that held everything together for us.
Our Pediatrician provided stability.
A cardiac heart failure MD: Having goals of care talks at non-crisis times
Our primary care pediatrician was our biggest support.
You can change your mind re treatment and care plan.
I relied mostly on the early intervention people to help focus on the living.
It seems to be a terrible waste if the primary care doctors are not part of the process.
I Want Straightforward Answers
When it’s not a good fit.
It becomes about a good fit.
We said, “We want to be part of the Solution.”
Her pediatrician is out of this world!
The Pediatrician and Shared Decision Making: It was a true collaboration.
The Medical Team: You want a sense of being heard.
We have a wonderful staff of nurses.
Our pediatrician has been nudging us: “Are you sure you want to do these things?” Comfort Care.
Doctors should know that getting past the fear of it is the biggest step.
It was very difficult to disagree with the doctors because we’re not doctors.
It has taken the specialists 11 years to get through to me.
Now they say, “Whatever you say, Mom.”
What gets to me is all the medical appointments.
As a parent, you know instinctively in your gut that something’s not right.
I want parents to know to be empowered.
