Do you find yourself tongue-tied when talking to doctors?
You're not alone! Talking to doctors about our own health can be challenging enough. When you're caregiving for a loved one, the stakes seem even higher.
Long-term caregiver, Marc Lawrence, has spent 5 years mastering the art of doctor-caregiver communication. Today, he has put together 5 tips to help you get the most out of your doctor appointments without feeling like you're struggling to keep up. Here's his story.
Being a healthcare advocate for your loved one (LO) is one of the most important roles you'll play as a caregiver.
As an advocate, you are responsible for interacting with medical professionals and making the best care-related decisions you can.
Acting in this role can be taxing, and many people feel their stress levels rise when meeting with doctors. It’s perfectly natural – you’re worried about your health or the health of your LO, and medical info can be a lot to take in.
Hopefully, today’s 5 tips will help take the stress out of doctor's appointments. They'll also help you get the best possible care for your loved one.
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1. Don’t be intimidated- doctors aren’t trying to scare you!
Doctors are human too!
While it can feel like a doctor's job is to make sure you’re in awe of them, ignore that feeling. Instead, feel empowered and take charge of the situation. They're not caring for your LO every day - you are. And you matter.
So, if you feel like you're being rushed or you don't understand what's being said, just say, "Stop!"
Then ask the doctor (politely) to slow down or clarify anything you don't understand. After all, misunderstanding can lead to mistakes, which can mean more doctor appointments in the long run.
It's understandable if you're feeling a knot in your stomach just reading this. I used to hate anything that even looked like confrontation. But you must get past the anxiety. While you should respect a doctor's expertise and experience, remember you have a right and responsibility to receive careful and thoughtful care.
You may even find the doctor is more willing to explain things in detail once you've shared your concerns and knowledge.
2. Prepare yourself for each visit
As my loved one's caregiver, I know more about her health than anyone else. Perhaps even more than she does!
Before I meet with her doctors, I make sure I'm prepared with all the information the medical team may need. For example, I always keep a piece of paper in my wallet with her current prescriptions and dosages.
The paper also includes a brief description of her current condition, her doctors' contact information, her insurance information, and an extra emergency contact if I'm unavailable.
Having this could be life-saving if something happens that leaves neither of us able to communicate. Just to be sure, I also carry my LO's insurance ID cards and driver's license.
Related: How I Manage My Day as a Caregiver
Before every appointment, I ask my LO how she feels - both physically and emotionally. I also make careful notes about any changes I've noticed in her condition or behavior.
Trust me, it's essential to be thorough. You never know what may be crucial information for a doctor when it comes to neurological conditions.
For example, I once mentioned how my LO's left eye kept tearing up, and her nostril ran shortly after breakfast. The neurologist explained that this can frequently occur when the brain misinterprets input from the nerves in the swallowing process. Who knew?
Finally, I always prepare a list of what I want to cover, with the three most important topics at the top. Running out of time is a genuine issue, so prioritizing my questions helps keep my mind on track and allows me to take appropriate notes.
3. There are no stupid questions - ask your doctor for what you need
In the 1980s, a famous TV ad used the slogan, "An Educated Consumer is Our Best Customer."
Customer empowerment became a widespread mantra. Though the slogan was empowering, little was actually done to educate consumers. Instead, a customer's knowledge of the service or product rested entirely in the hands of salesmen or people who claimed they were in the know.
Though the internet helped with some of these issues, many customers became more confused than ever. Healthcare services are just as, if not more, complicated. Try putting a condition or a healthcare question into a search engine, and you'll find five different "expert" answers on as many pages. How does someone differentiate between a good and a wrong source? How can we tell what is and isn't true?
A better and often more reliable way to educate yourself is to direct any questions to your medical contacts.
3(a). Learn the art of asking questions
Question-asking is also an art. You can - believe me - train yourself in the art of question-asking, learning to make thoughtful, probing inquiries on any topic. Here are four examples of the types of questions you could ask to get you started.
The first way to ensure a proper response is to ask open-ended questions. They're questions that can't be given anything as simple as a "yes" or "no" answer, and they will need further explanation.
Example of a closed question: Will I need to do XXX every day?
Example of an open-ended question: What are the benefits of doing XXX, and what changes can I expect to see if I do it every day?
If you can't think of any open-ended questions just yet, don't dismay. The easiest question is to ask your doctor to repeat something you may have missed or don't understand. Take the opportunity to make notes and start to digest the answer.
The next type of "artful" question is a clarifying one. Like all of us in specific fields, doctors get used to their "lingo." What makes perfect sense to them may mean nothing to us. There is absolutely no shame in asking a doctor or healthcare provider to clarify something! You're both on the same team.
Example of a clarifying question: Did I understand you when you said [paraphrase of earlier explanation] about XXX procedure?
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Even if I think I know what the doctor is talking about, I may occasionally ask them to clarify anyway. This ensures I get consistent answers and helps confirm what I already may know. Clarifying questions also help you with the following type- a "what then?" question.
"What then?" questions
"What then?" questions are about what happens next in regards to recovery and treatment. Once you start asking these questions, you can drive the conversation as far out into the future as a doctor can reasonably foresee.
Example #1 of a “What then?” question: If I follow this treatment plan, what would happen if…
Example #2 of a “What then?” question: What if we don’t do XXX? What can we expect to happen later on?
It's crucial to look beyond the moment's immediacy and understand the implications of taken actions. Of course, if faced with a life-or-death situation like a stroke or heart attack, you will need to trust your medical team and let them get on with what they do best. However, it's best to get a fully rounded view of what's going on for everyday matters.
Sometimes, I'll ask a different medical professional, such as a qualified friend or relative, for their advice. Usually, the advice is the same as what I receive from my LO's medical team, but it gives me great comfort.
Finally, the last type of question is to ask your doctor's opinion on something you may have read or seen. If you've seen any advertisements for prescription or non-prescription medicines, you'll notice they always say, "Ask your doctor about..."
Example of an opinion-related question: What is your view of this new treatment for XXX? Why would or wouldn’t it help?
This is good practice. Firstly, it can be incredibly dangerous to try something without the green light from a medical professional. Secondly, a doctor's answer may surprise you! I've asked the doctor about several treatments, medications, therapies, and specialists in the past.
Sometimes, the doctor may even agree with me or say something like, "I hadn't considered that, but it's worth a try."
4. Monitor your LO’s progress and always follow-up
When it comes to medical care - mine or my LO's - I regularly monitor the impact of the prescribed therapy.
Does the medication have the right effect? Is it having a negative effect?
Is the prescribed physical therapy working, or is it creating other problems?
Does a procedure have any unforeseen consequences I need to note down? Is something doing more harm than good?
Don't take for granted that everything the doctor prescribes is going to work. As I said before, doctors are human too, and everyone is different. What worked for a friend or a colleague may make you feel crummy. Doctors can't be sure what will and won't work for an individual, and, just like you, they're trying their best.
Related: “Are You Okay?” 3 Communication Tips for Caregivers
Without a universal "cure-all" appearing any time soon, you must be alert for any positive or negative impact the treatment has on your LO. Feed that information back to your doctor, and don't forget to ask about the next steps.
After nearly 5 years of caregiving for my LO, I will occasionally suggest changes to her medication if it's impacting her behavior. I don't consider myself an "expert," but I'm the one monitoring her condition almost 24/7. Monitoring and questioning what's going on will ensure you stay up-to-date with medical advances, and it will keep your doctor informed of any progression or decline. It's difficult at first, but you'll learn to notice and stay vigilant for even minute changes in your LO's condition.
5. Remember - Caregiving is a superpower, and it rests in your hands
I'm not suggesting you become more knowledgeable than your doctors. They're the experts and, unless you have years of medical training, it would be quite impossible. Instead, I'm asking you to not take everything at face value - particularly if you don't understand what's being said or if you're unsure how something will help.
Keeping a doctor engaged to your understanding will serve to educate you, build a long-term relationship with your medical team and help ensure you and your LO will get the best care possible.
Importantly, taking these notes and asking these questions may help flag a problem before it develops into a crisis.
If your doctor dismisses your questions or seems reluctant to address your worries, remember that a second opinion isn't out of the question. A doctor doesn't have to be for life. If you're not satisfied with how your doctor handles your case, you can transfer to another professional.
But, just as another gentle reminder, please keep in mind that all doctors are human. Typically, they're brilliant, well-educated, and experienced, but human nonetheless. If you're tempted to change doctors, ask yourself this: Are you really dissatisfied with the service, or do you just not like what's being said to you? There's a world of difference.
Related: How to Manage Anger and Guilt as a Caregiver
On the other end of the spectrum, some of you may be putting your doctor on a pedestal. Again - you're the caregiver. You know your loved one better than anyone else. You are a valuable part of your LO's medical team, and good doctors will encourage and value your input.
NPS-ALL-NP-00449 November 2021