Gary McClain, PhD, is a licensed counselor, research consultant, speaker, and author who specializes in the emotional impact of chronic and catastrophic illnesses. In this series, he provides guides for how to tackle communication challenges with your doctor.
After Jenn’s doctor talked to her about her diagnosis, he briefly went through the treatment options with her, one by one. After he was finished, he said, “Go home and think about what direction you want to go in, and let me know when we meet next week.”
Jenn left his office with a handful of pamphlets and an uneasy feeling. She paused in the waiting room to glance through the materials she has been provided. One of them discussed patients and doctors working together as a team and “shared decision making.”
That evening, Jenn told her husband, Tom, about the conversation she had with her physician. “I’m not sure how empowered I want to be,” she said. “Sure, I want to be involved in the decision. But I also want to know what direction my doctor recommends. Isn’t he the expert?”
Have you ever felt like Jenn?
As a patient, you have the right to make decisions about your treatment, including where you are treated, how you are treated, and even if you are going to receive any treatment at all. That’s what patient empowerment is all about. However, hearing about new treatment options, especially when they are first presented, can be scary. Being told that the decision is yours can be scarier.
If you have been in this position, you may have had a reaction similar to Jenn’s. On one hand, you may indeed want to be involved in the decision. After all it’s your body, and the treatment route you choose will impact many different aspects of your life. On the other hand, you may be hoping that your doctor will give you a strong recommendation, based on his/her knowledge and experience. And let’s be honest — you may be feeling like dealing with your diagnosis is already so overwhelming, you would rather not have to think about the treatment options.
Doctors are learning how their role is changing in the new world of patient empowerment, just as patients are. They are working within their individual and training regarding the best practice guidelines for communicating with patients, including sharing decisions. Consequently, patients sometimes feel that their doctors are not providing the recommendations they want and need.
So what can you do when your doctor won’t tell you what to do? It starts with communication! Here are some ideas to get the process moving:
First, don’t turn uncertainty into a catastrophe. When you’re feeling overwhelmed, it’s only human to get caught up in the emotions of the moment. While being presented with treatment options can be scary, especially when you are newly diagnosed, being provided with options doesn’t have to mean the decision is being dropped in your lap. So take a moment to get some perspective. Take a deep breath. Tell yourself that options are a good thing because options mean there is more than one way to treat your condition.
Get clarification on your physician’s intention. Sometimes when we are feeling strong and uncomfortable emotions, like fear, it’s easy to misunderstand what the other person is saying. It’s just human nature. But misunderstanding can also lead to assumptions. So take a moment and ask for clarification: “Doctor, it sounded like this is my decision alone. Is that what you meant?”
Be honest with your doctor about your discomfort. Let him or her know that you are feeling unprepared to evaluate the options that you have been provided, or even wondering why you should have to. And that while you appreciate being part of the decision-making process, you also need more guidance in terms of a recommendation. “I need for you to know that I am uncomfortable with being asked to make this decision. I feel left out on a limb.”
Get an understanding of his or her position. Your doctor may have specific reasons for leaving the decision up to you. He or she may want you to feel like you are not being told what to do, but that you also have a voice. Patients who “buy in” to their treatment path are likely to be more compliant. Clinic or hospital guidelines may also be a factor. So just ask: “Can you explain what your role is and what my role is in this decision?’
Ask your doctor to take you through the options. Focus on what’s involved in each treatment, what you can expect, and what you need to be concerned about. Ask questions. If your doctor doesn’t have time, ask if another doctor, a nurse, or a physician’s assistant can help, and if he or she can recommend other resources. “What is the best way for me to get a clear picture of my options?”
Get a sense of how urgent the decision is. If you aren’t ready to make a decision, based on the options you have been provided, ask your doctor how urgent it is that you decide right away, or if you have time to think about the options. Your doctor should be able to provide some perspective regarding urgency, as well as any short-term treatment you can be administered as you are making your decision. “When do I need to get going on treatment? How long can I safely delay it while evaluate my options?”
Go home and do some of your own research. The internet is filled with guidelines on how to research your condition and its treatment. So do some searching on reputable sites, like this one. Another good place for objective treatment information is MayoClinic.com. You might also want to review discussions regarding your condition or post one of your own.
Consider getting a second opinion. If you are feeling especially conflicted about the options that your physician has presented to you, you might also want to get a second opinion from a specialist in your diagnosis. This will provide you with additional input into the decision process. If you are concerned that your doctor’s hesitance may be related to his/her discomfort or lack of experience in treating your condition, then a second — or even a third — opinion is recommended, if not seeking further treatment from a physician who has more demonstrated expertise.
Have another discussion. Summarize what you have learned and present it to your doctor at a subsequent appointment. Focus on anything you learned about the treatment options that the two of you haven’t already discussed. Bring a list of questions.
Try the “what would you do?” question. At this point, it might help to ask your doctor to talk about what would be chosen if he or she, or a loved one, were in your situation. This is not intended to be a trick question. It might help your doctor to talk more directly about a recommended course of action, or at least give you further insight into how to make your decision. “If you were in my position, what factors would you consider most important as you evaluated the treatment options?”
And ask yourself: Can this be an opportunity? Wanting your doctor to recommend a treatment when you are first diagnosed, as well as further along in the treatment journey, can be a double-edged sword. Sure, it can be a relief to be told what to do, and not have to a lot of thinking about treatment options. However, not evaluating your options before you commit to a treatment path can lead to feelings of uncertainty in the future, if not regret.
Jenn and her husband did some research on the options her doctor had presented to her, and they weighed the pros and the cons, On her next visit with her doctor, she and her doctor had a talk about what she had learned. Because she was more informed, Jenn felt more confident. She asked questions, and her doctor gave her honest answers, including the risks. Jenn left his office feeling like they had worked together to create a treatment plan that she felt comfortable with.
Think teamwork. And that means a meeting of the minds: you and your doctor. Begin your treatment journey with confidence that you have thoroughly evaluated the options and that you understand your doctor’s perspective. Talk. Ask questions. Keep talking. Get prepared for the road ahead.