Working with the Medical Team
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A patient family encounter that grew me as physician: I learned “to serve as a vessel, to be a container, for their reality.”
“Noah is a trainwreck on paper but he is so much more than that.” A mother’s high alert vigilance and advocacy for 14 years
The mother of a medically complex child’s advice to clinicians: Don’t call me ‘mom’ … Don’t ask me questions you can find answers to in the chart … and then some.
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
Being my son’s advocate: I can spend all my time researching; the medical world leans on the word ‘reasonable.’
“I would like clinicians to know that I am specialized too – in my son. I am his shadow.”
“My race does play a role in my need to strive to be overly on top of information. I want to be taken seriously as Jackson’s advocate.”
A diagnosis in-utero of Trisomy 18: Being told, Don’t get too attached. He is going to die. We wanted a different conversation.
A Black couple reflects on unconscious bias in medicine: “I shouldn’t have to start flashing all these badges in order for you to respond.”
A mother on what it takes to get listened to by your child’s physician
I really like working with parents. It is a partnership. There is something magical that happens when everybody is thinking about another human being together.
We just want a conversation about options: “Are we going to get somebody that cares or somebody that just wants to talk about diagnosis and prognosis.”
We look for physicians who will be champions for our son, and who will offer us options.
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.”
How we advocate for our son. “We are over the system telling us the best plan of care. We are going to do this together or we are not going to do it with you.”
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 mother’s need to get as much information as possible; while the pediatrician may be protecting against too much.
Feeling as a PARENT at home vs Speaking as a professional advocate for my son in the hospital
In the early scary days, with shock of diagnosis, parents don’t register the supportive resources they are handed.
The road to DNR: Only when the situation called for it; timing is everything.
Distrust: We have given parents a lot of reasons to think there is not a partnership there. We don’t communicate as we should: we don’t ask for permission; we aren’t transparent with information.
When language is the barrier to getting the information that matters from the family: It is the doctor that needs the interpreter, to understand the family and communicate with them fully.
Advocating for their child can be tricky for the parents: The burden should be on us clinicians to be better listeners.
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.
Some parents lack the courage to speak up. But these kids need people to speak up, protect and advocate for them.
“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.”
Building prognostic awareness re children with serious neurological conditions: the CNS regulates everything.
A neurologist acknowledges the frustration parents feel that doctors can't always figure it out. Medicine is a human endeavor.
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.
Our Pediatrician provided stability.
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.
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.
The medical machine is not very humanistic. Sometimes I think common sense gets lost in the bureaucracy.
Can we help you:
Related
From our Blog:
- 6 Things Primary Care Clinicians Can Do To Support Children with Complex Medical Needs
- 7 Things Your Patient Families Would Like You to Know
- Here is how you can help me feel that I’m doing a really good job caring for my child.
- The Child's Primary Care Pediatrician Can Make ALL the Difference
- Doctors' Words Well Chosen
- Five Things I Love About Being a Pediatric Palliative Care Doctor
- A Good Day as a Pediatric Palliative Care MD
- Watching for the Dedication
- What Guides You? And is Your Medical Team Following?
- Language that builds a bridge: "Please help me understand"
- What can parents handle? The truth (delivered with care).
- “I thought you’d never ask.” The Conversation(s): Why it matters, how it helps, who initiates It
- Connecting the Dots
- Sophia, Her Death and her Doctors
- A Letter to the Medical Residents at My Son's Hospital
- This Palliative Care Doctor Helps Empower This Family
- The Body and Soul of Care for Our Children
- Pediatric Ethics Committees: An Under-Used Parent Resource
- Is Your Pediatrician On-Board?