Improving Communication Between Patients and Oncologists: Tips for Getting It Right, Part 2
In the previous blog post, I suggested that we patients can improve communication with our oncologist by re-thinking our role: We can choose the role of partner in our own care.
Focusing on the goals we share with our oncologist -- treatment success and good quality of life -- can help us to overcome communication challenges.
We can also adopt strategies for optimizing communication. These strategies involve a set of good habits and effective behaviors.
Here are eight tips for improving communication.
TIP 1: Use a Question Prompt Sheet (especially when newly diagnosed)
When we are first diagnosed, we have so many questions. There are so many new things to take in. There are words we’ve never heard before, procedures and tests we don’t understand. We also know that our family and loved ones will want to know what we have discussed and what’s going to happen next.
What’s more, we are overwhelmed with uncertainties and fears: about the disease, the treatment, and even the medical encounter itself.
This is a time when you really need support to find your way through unfamiliar territory. In the same way a map can guide you when you’re travelling in a foreign country, a question prompt sheet (QPS) can help you feel less confused and disoriented in your first discussions with your oncologist as a newly diagnosed patient. A QPS is essentially a list of the kinds of questions patients might want to ask.
It’s common for patients to be fearful of asking questions. You might wonder “Is that a stupid question?” or even “Am I asking too many questions?”. It can be reassuring to know that it is perfectly normal to ask questions.
This QPS includes questions about prognosis and treatment, such as “What is the goal of treatment? Is it directly treating the cancer or improving my symptoms, or both?”, “How will I feel?”, or “How does this treatment compare with other treatment options?”.
TIP 2: Remember the Rule of Three
Later on, you can prepare for an encounter by reflecting on and then listing all of the issues or questions you have. Brainstorm all of your concerns and write them down.
However, be aware of the time constraints affecting the encounter -- remember the oncologist’s time will be limited. You will rarely have the luxury of discussing all of your concerns at length. For this reason, it is imperative to use time efficiently. This means that your list of questions should be reworked a few times: remove questions that could be answered by someone else (“What kind of diet is best for me right now?”), or that are speculative in nature (“Why did this happen to me?”). You might also find that some questions are related and can be grouped together under a broader question.
While preparing, it’s a good idea to remember the Rule of Three. Aim to cover three questions or issues -- three is not too many, and most people can keep three items in mind (even if they are nervous). List your questions from most to least important. You can announce your questions at the beginning of the encounter: “There are three things I’d like to ask you about”. You can lead into your questions with phrases like “My first question is…” or “So here’s my second question.” In my own experience, this technique has worked well -- my oncologist has even asked me “So what was the third thing you wanted to know?”
TIP 3: Be concise in your responses
Preparing three main questions or issues to discuss involves reducing a larger number of points to a smaller number in the interest of efficiency. The same holds true for information you provide when your oncologist asks you a question. For example, if you have planned to ask your oncologist about managing the side effects of your treatment, be prepared to talk about those side effects. Try to stick to the facts. And be mindful about describing things concisely in a few key words – the Rule of Three applies here, as well.
TIP 4: Ask directly about things you don’t understand
Medical specialists often use words that we patients don’t understand. But even oncologists who make an effort to avoid medical jargon can sometimes use words that are quite technical. For example, when an oncologist refers to a lesion, you may wonder “A lesion? Is that the same as a tumor?” In such a case it is always best to ask what something means. Don’t be afraid that your oncologist will think you are a difficult or ignorant patient for asking questions -- on the contrary, you are signaling interest and engagement through wanting to understand. In such moments you can simply say “I’m not following you here. Do you think you could explain that again to me in different words?” or “Do you think you could help me to understand that a bit better?”
With time, you will become more familiar with the terms your oncologist uses. But keep in mind that as your treatment changes, there will always be new words to learn.
TIP 5: Share what’s important to you
In the previous post, I suggested that you share information from your own life in order to help your oncologist perceive you as a whole person. Admittedly, it’s a challenge, especially when we need to be mindful of time constraints. But you can include pertinent information from your life and be concise at the same time. For example, when discussing your treatment schedule, you should tell your oncologist about an upcoming family event that is important to you and you don’t want to miss; when mentioning side effects of treatment, you should briefly explain how they affect your work or other activities you engage in.
By communicating what is important to you, what your life is like, and what your priorities are, you are showing up as a whole person. Sharing who you are shows you are more than just your disease and deepens the human connection between you and your oncologist.
TIP 6: Repeat back what you have understood
Near the end of the medical encounter, it is a good idea to repeat back to your oncologist what you have understood in your own words. Briefly summarize the main points that have been covered or the next steps that are to be taken. By doing this, you give your oncologist an opportunity to correct you if you have misunderstood something or to remember something he or she may have forgotten. You are also consolidating the main take-aways of the encounter in your own mind, which will make them easier to remember. You could say something like “OK, let me see if I have understood everything” or “Let me just recap our next steps” or even “Allow me to summarize everything so I can explain this to my son.”
TIP 7: Be ready for communication challenges
There will always be bumps in the road and you will likely encounter challenges to communication with your oncologist from time to time. You can be ready for these challenges and prepare yourself to handle them.
For example, your oncologist might seem impatient or in a hurry. Why not address your observation directly? “I notice you’re under time pressure. But I’ve got some questions I’d really like to ask you today” or “I appreciate that you are busy, but I would like to talk to you about something.”
If your oncologist interrupts you while you are speaking and you have more to say, try to hold your ground and maintain your speaking turn by saying “I’d just like to finish what I was saying.”
Sometimes we have read or heard something about a treatment option and wonder if we should mention it to our oncologist. We might worry that we will be perceived as difficult or that our oncologist will think we are questioning their decisions. In principle there is nothing wrong with bringing up such issues – we can formulate our questions in a way that signals we are interested in hearing the oncologist’s opinion: “I read a paper that deals with X – what do you think about that? Do have any experience with it?” Mentioning a reputable source of the information is very helpful.
Generally speaking, it is best – although admittedly not always easy – to address communication difficulties directly.
TIP 8: Write a memory log
It is a good idea to take notes during every encounter with your oncologist. You might only be able to write down a few words or bits of information during the appointment, but you can always complete and flesh out those notes afterward and compose a kind of memory log. If a loved one is accompanying you, he or she can take notes while you are speaking to the oncologist. Make sure you have noted all follow-up appointments. Draw up a to-do list for yourself that you can check off as you complete each item.
Build your communication skills over time
Keeping these 8 tips in mind can help you improve communication with your oncologist and assume the role of partner in your own care. If the tips seem overwhelming, you can start practicing a few of them and build your skills over time.
How do you think we can improve communication with our oncologists? Are there any tips you would like to share? We look forward to reading your comments!