How to Talk to Your Doctor

posted in: Special Needs | 6

Post contains Amazon affiliate links to some very helpful books to teach your how to talk to your doctor.

Learn how to talk to your doctors and advocate for your children and yourself.

When Apollo was endlessly sick with his mysterious illness I read. A lot. I read about doctors, nurses, sick kids, and how to keep you kids healthy. I read about how to get your baby to sleep through the night and how to soothe them when they were fussy. The most important books I read, however, taught me how to talk to doctors and how to advocate as a parent. 

I imagine a lot of you, like me, were raised in a world where doctors knew everything. They were rarely wrong, and you certainly didn’t question them. They were the experts after all. Today I still hold doctors in the highest esteem. They have years of training and experience and without them my son would not be alive. However, I no longer see them as infallible and I know to get proper care, I need to part of the team caring for my son, not simply an observer. 

The reality is, Apollo would not have gotten a diagnosis and treatment without my firm advocacy for him. One of the most important things I have done is educate myself on how to talk to doctors, something I have decided to share here.

Baby with double aortic arch

The best books I have read on how to talk to your doctor:

How Doctors Think by Jerome Groopman

If you only read one book this year, read How Doctors Think. I gained amazing insight that truly helped me communicate with Apollo’s many doctors. Groopman, a doctor himself, candidly discusses:  how a doctor feels about a patients does, indeed, affect treatment, he discusses how to communicate clearly with your doctor, he gives warning signs to look for to avoid poor care and he talks honestly about the mistakes doctors make. 

Complications: A Surgeon’s Notes on an Imperfect Science by Atul Gawande 

This book was great for giving me an understanding of how and why doctors make mistakes (they are after all human) and how to advocate so they don’t. Gawande opens up about mistakes (his own and others) and how they affect patients, doctors and their relationships. Well worth the read! In his follow-up book, Better: A Surgeon’s Notes on Performance, he covers his strategies on how to make the practice of modern medicine safer.

How Patients Should Think: 10 Questions to Ask Your Doctor About Drugs, Tests and Treatments by Ray Moynihan and Melissa Sweet. 

This book is perfectly straightforward. If you don’t know what to ask or where to begin, this book has the answers (or, more accurately the questions) for you. After reading this book I felt confident looking Apollo’s doctors right in the eye and asking hard questions such as, “How many times have you done this procedure? What are the outcomes? What is the long-term prognosis?”. You are putting your’s child’s very life in the doctors hands, don’t be afraid to get answers to your questions!

heart surgery: two years later

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My practical advise as a mom is simple:

  1. Ask questions. It is your doctor’s job to educate as well as treat you. Reading How Patients Should Think will help you come up with a list of relevant questions.
  2. Take notes. We have a notebook filled with notes from Apollo’s doctor’s visits and hospitalizations. It is rare for me to have a conversation with a doctor without having my notebook and pen ready.
  3. Do your research. Maybe googling your child’s every symptom isn’t a great idea, but do find a way to education yourself about your child’s ailment. Read books, talk to other parents (Facebook groups  are great for this), ask for resources from your doctor. 
  4. Trust your instinct. It was our instinct as parents that kept us going back to the doctor time after time, even when they insisted he was fine. 

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Have you ever had to advocate for your child? Or ask the hard questions? Have you ever had to switch doctors because of inadequate care?

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6 Responses

  1. Good to see this list of books! It is so hard to accept that these doctors, in whom we place so much trust, might make mistakes too. We do have to help them – it’s the only way to ensure that they get all the information they need to make good decisions.

  2. I have a chronic illness. I was diagnosed when I was 14, an am now 24 but the last 3 or so years the severity of my disease has been substantially worse than it ever was. I think it is especially hard to learn how to advocate for yourself as a young person because I am learning how to engage with doctors and the healthcare system for the first time. I go back and forth between calling my mom or dad and then realizing that I really need to figure this out myself. While my parents are certainly important in helping me manage my health, they live 3000 miles away and really the only person who can best navigate it all is me. My biggest struggle during hospitalizations is that, I want to be nice. I don’t want to cause trouble because I know that nursing is a really hard job and I don’t want to make nurses lives more difficult. But sometimes they are just uninformed and wrong and I need to tell them that clearly and unequivocally. My disease is relatively rare so a lot of the time the nurse carrying out my treatment is not super familiar with it. Sometimes it can be enraging. Like if you’re giving me an IV med that you’ve never given a patient before, and I tell you that you need to dilute it with saline, don’t brush me off. I get this med every other week and you’ve never given it before. I think I might know better. I’m not saying this to give you a hard time. Im saying it because it matters.

  3. A good blog.. I have a large family too …
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  4. You’ve provided such great resources for parents here, Renee. Anyone with children will definitely learn something from reading through these suggestions. You’re right: we used to see doctors as infallible, but now there seems to be a shift in the other direction. Perhaps working as a team to better our children instead of thinking of each other at opposite sides is a better mentality to adapt. Like you said, doctors have the knowledge and were trained for certain things, but parents are as well–they may not have gone to school for years and may lack the experience, but we know are kids as well. And we should use our differing knowledge to help each other, so we can do right by our children as well. Thanks for sharing on #SHINEbloghop this week! Always lovely to see you join us.

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