My daughter was born with a severe tongue tie. It kept her from breastfeeding and later from being able to pronounce certain words. Eventually, she needed surgery. But, for years before that, her doctor brushed off my concerns. I was told it was no big deal, and even though my gut told me something else, I struggled with how to respond. This was my child’s doctor, someone I’d trusted since day one. Plus, I hate confrontation. I have a hard time psyching myself up for simple phone calls, let alone finding the confidence to question a medical expert.
As a parent or caregiver, you’re often put in the position of needing to advocate for your kids in ways you never saw coming. For parents like me who struggle with confrontation, asking tough questions, seeking second opinions and pushing back on advice that doesn’t feel right is even more challenging. And, unfortunately, there’s no way out of it.
“The reality is that you have to advocate for yourself and your kids in order to get good care,” says Dr. Kelly Fradin, Director of Pediatrics at Atria Institute and the author of “Advanced Parenting: Advice for Helping Kids Through Diagnoses, Differences, and Mental Health Challenges.” “Whether that means changing the way you organize information or the way you set the tone for what you need out of a healthcare encounter, there’s a lot of work that goes into that from the parent’s side.”
As a pediatrician and child advocate in New York City, Fradin knows firsthand how challenging medical advocacy can be. Here, she and other experts share their best tips for navigating the medical landscape and being your child’s number one advocate, even when it’s overwhelming.
“It’s not the doctor versus you. You are a team working towards the same goal, and we’re there to help you.”
— DR. KELLY FRADIN, DIRECTOR OF PEDIATRICS AT ATRIA INSTITUTE
Finding your confidence at the doctor’s office
It’s easy to feel out of your element when talking to your child’s doctor. They studied for years to become an expert and authority on children’s health, and you, well, don’t have quite the same training. But, it’s important to remember two things: you are an expert on your own child, and your child’s doctor is there to support you.
“The parent is the most important person in the room because they have the information about what’s going on at home, and they have their own family values and priorities,” Fradin says. “It’s not the doctor versus you. You are a team working towards the same goal, and we’re there to help you.”
So, when you feel uncertain about a recommendation, have a question or even disagree with a doctor’s opinion, it’s OK to voice that. Here’s how to do it.
How to advocate for your child when you hate confrontation
1. Prepare, prepare, prepare
The more prepwork you’ve done ahead of a doctor visit, the more confident and comfortable you’ll feel. Before you head to an appointment, Fradin suggests writing down your goals for the visit. This should include:
- Questions you need answered.
- Specific symptoms to discuss.
- Your priorities for the appointment.
- What you hope the visit will accomplish.
“A concise and comprehensive list is helpful because you can reference it during the appointment,” adds Nicolle Osequeda, a therapist and the owner of Lincoln Park Therapy Group in Chicago. “It can help you convey your concerns more accurately, and you’ll feel more prepared to discuss things with the doctor that might be uncomfortable or hard for you to do.”
2. Set the agenda for the encounter
Doctors aren’t mind readers, so once you have your priorities set, it’s important to communicate them in order to get the most out of a medical visit.
“I’ve had patients come in for a physical, but at the end of the visit they’re like, ‘What I really wanted was to talk to you about my child’s learning struggles,’” Fradin says. “That’s a whole other appointment. So, if I had known, I would’ve gone in a totally different direction and not wasted their time with things that aren’t relevant to their priorities.”
As soon as you get to see the doctor, Fradin says to tell them, “‘I really need to address [X] today.’” If you aren’t comfortable setting the agenda or aren’t quite sure about the exact purpose of the visit, Fradin says to ask. You can say:
- Can you explain to me what the goal of this visit is?
- Is it realistic to think that we can discuss [X]?
- Could we talk about a few things that are on my mind?
3. Trust your intuition
“Your intuition is an incredibly valuable tool,” Fradin says. “If something doesn’t feel right, you have to make sure that you have your concerns heard.”
If confrontation makes you nervous, it might be because you think voicing your concerns means shooting down a doctor’s advice or launching into a heated debate. But, that’s not the case. Rather than jumping straight to “no” on something, Fradin says, ask yourself: “What is it about this plan or this suggestion that’s making me uncomfortable?”
“When you understand what it is that’s not sitting right about the encounter, then you can try to be more specific about what feels wrong and give the doctor a chance to dig into your concerns and address them,” she adds.
“The goal at any kind of medical appointment is to get to a place where you feel comfortable with the treatment plan and are convinced it’s the right one.”
— DR. KELLY FRADIN
4. Ask the right questions
“The goal at any kind of medical appointment is to get to a place where you feel comfortable with the treatment plan and are convinced it’s the right one,” Fradin says. “So, you really have to ask whatever questions you need to, to get to that point. And you can do so in a respectful way.”
To seek clarification, push for additional options or even just to express hesitancy with a diagnosis or treatment, Fradin suggests questions such as:
- Are you sure you got the full history of my child?
- Have you considered other diagnoses?
- Have you seen other cases like this?
- Have you thought about whether or not more testing would be indicated?
- Do we need a referral to a specialist?
- One of my friends found this treatment to be helpful. Does that apply to my child?
5. Don’t be afraid to seek a second opinion
Every doctor approaches their work with a unique set of skills, experience and education. What one doctor thinks is the best option may not be true for all doctors. If you feel like you want education and options beyond what your child’s primary doctor is offering, it’s OK to get a second opinion.
How do you know when it’s time to seek a second opinion? Here are some of the signs, according to Fradin:
You have a big decision to make.
“Think about how large your challenge is and how central it is to your child’s future and well being. For very big decisions and very big things, I am often one to suggest seeking multiple opinions.”
Progress has stalled.
“If you’re working with one doctor for a while and not seeing the results that you want, a second opinion can help you understand what may or may not be going on and what your options are.”
You just don’t get along with your provider.
“Sometimes it may just be that you don’t like the individual providing the care. That matters, especially for long-term purposes because you really do need to have a provider that you feel comfortable with.”
You should also know that seeking a second opinion doesn’t mean you have to switch providers or disregard a previous doctor’s advice. “Sometimes it just increases your confidence in your original provider’s care, and that can be very validating,” Fradin says. “Even if it doesn’t change the management of a health condition, it can help your education and your confidence to hear from another expert.”
Remember: It’s always acceptable to advocate for your child
Standing up for your kids’ best interests can be uncomfortable sometimes, but that doesn’t mean it’s the wrong thing to do.
“It’s hard to find the courage to speak up for yourself and your child when you don’t feel like the expert in the room,”Osequeda says. “But it is completely appropriate and important to advocate for your child.”
When it feels hard to be brave, remind yourself that your advocacy is also teaching your child an important lesson, she adds. “As the parent, you are modeling for your child in these visits how to advocate for their needs and speak up, even when it is hard to do.”
