Many parents might still feel like this: “If the doctor says so, then that’s what we have to do.”
While that may be true in many basic ways, modern medicine says, “If the doctor says so, then ask questions.” “The new thought or way is with shared decision-making. That is the doctor, nurses and other staff as experts in their field, but the parents are experts in their children,” said Naomi Williams, Children’s Hospital of Georgia Family Support Coordinator. “So pooling those together comes up with the best plan and best possible outcome for the child.”
When your child’s in the hospital, being active in his or her care can feel overwhelming in the moment. Here are some important points to remember, says Williams:
“Write down your questions and your doctor’s answers.”
When your child is first diagnosed or when he or she is first admitted to the hospital, you might feel too shocked to even know what to ask. So ask this, “What do other families ask? What are the frequently asked questions about this diagnosis?” Take plenty of notes to help you remember later. Then, what usually happens is questions start popping into your head. So grab a notebook or use a notes app on your phone to capture all those random questions. That way, you’re not fretting that you forgot to ask one more thing the next time you see your child’s doctor. And, make sure to write down the doctor’s answers.
“Know when rounds are.”
In most hospitals, rounds take place during the same period of time every morning; at the Children’s Hospital of Georgia, they’re usually between 8:30 to 10 a.m. Rounds are when your child’s doctor and the health care team come to your child’s room to talk about his or her care plan. Remember: You’re an important part of that team too, so as much as you can, arrange your schedule so that you, your significant other or another caregiver can be there to participate.
“Talk about your child.”
One great tip is to put together a one-page sheet of information about your child to share with your care team. Include likes, dislikes, siblings, pets and a description of the family environment—anything you think might be important for the health care team to know about your child as a person, not just a patient.
“It never hurts to doublecheck.”
Your medical team is human. As much as no one wants this, mistakes can and do happen. So don’t be afraid to doublecheck your child’s care plan. For example:
• Make sure you understand exactly what kind of medicine your child is getting and how much. Know what the pills or amounts should look like.
• At the same time, make sure your medical team knows all the medications or therapies your child is currently on, in case any medicines cancel each other out or are dangerous when taken together.
• Know why doctors are doing a certain procedure or process. If it’s more invasive than what you’re comfortable with, ask if there’s a different approach. Understand and be a part of the care plan.
• If you have a special situation or problem, speak up so the team can help figure out a solution that works for everyone.
• Listen to your child, and be the translator to tell doctors what hurts and where it hurts.
“Lean on available resources.”
When family and friends ask what they can do for you, let them help. Ask if they can sit with your child for an hour or two so you can step away to grab lunch, catch up on work emails, or take a shower. A support system is essential.
A quiet place where families can go for a break is the Children’s Hospital of Georgia’s Family Resource Center on the main hallway of the first floor, which has books, magazines and videos. It’s also staffed by a family support coordinator from 10 a.m. to 2 p.m., Monday to Friday, who can help parents research your child’s illness using medical databases and link them to local resources, including summer camps for kids with a variety of diagnoses.
“Honey gets you further than vinegar.”
Hospitals are hard. So be kind to yourself and show yourself compassion. And be gentle and courteous with your doctor and the medical team. Even in times of frustration, take a breath, and consider your tone and your word choices. The words, “Help me understand why,” are a great approach. The goal should be that everyone is working together to give your child the best care.
That being said, if you ever feel as though that’s not happening, know the chain of command so you can speak up about your concerns.
“Help your child feel more comfortable.”
Bringing something from home that reminds them of home—like a stuffed animal or well-loved blanket or pillow—is a good idea. So are photos. The Children’s Hospital of Georgia’s Child Life Specialists can also visit to help your child express his or her feelings through play; they can also work with you on ways for your child to help feel more in control in this out-of-control situation. For example, perhaps your child could choose where he gets a shot or if she is holding your hand or sitting in your lap when it happens.
“Trust your gut.”
Finally, always trust your intuition. You are the expert in your child. You may not know the science, but you know their likes and dislikes, you know what pain looks like and you know what happy is like. So if you have questions, continue to ask questions until your intuition aligns with what’s being said.