At the heart of your health care team is your physician, the person directing much of your care for cancer. Your doctor will be the person who leads the development of your plan of care, checks on you regularly, and advises you on progress and next steps. Communicating effectively with this person is important to you not only in treating your cancer, but in assuring your peace of mind and comfort with decisions that you make.

Communicating well isn't always easy for patients diagnosed with cancer. Here's why:

• You are probably new to the "world" of cancer. The terms swirling around you describing medicines, treatments, side effects and more are all new to you. This means you are probably struggling to understand and remember what is being said to you.
  
  
• You don't know the "system" — how things work in your health care center, who does what, how to get your questions answered, where to go to find things you need and much more. You're in the equivalent of a foreign country, trying to learn the native language, while struggling with illness. In time, your treatment center may become a second home, but right now, it's all strange and new and perhaps forbidding.
  
  
• Your emotions are under assault as you try to absorb the impact of your cancer diagnosis. You don't know what's ahead for you — even if you will survive — and yet you must make decisions such as treatment choices right away.
  
  
• You may lack information about your cancer. In the beginning days of coping with cancer, it is unlikely that you've had time or ability to research your disease — and yet you must make choices and decisions. For some people, the inability to confirm the wisdom of what treatment choices are being recommended can be upsetting.

It isn't always easy for your physician, either. Some of the realities of providing health care today make communicating with patients difficult at times.

Time pressures on physicians, perhaps even more than other members of the health care team, are severe. Today's system demands seeing more patients in fewer hours than in the past, and this means that each patient probably receives less attention than might have been possible a decade ago. Your physician is always on the run. But you do have the right to thorough discussion with her or him, and working together, you can make doctor-patient communications effective.

Steps Toward Good Communications

With patience, good will and understanding on each side of the equation — patient and physician — good communication can result.

Remember, you are the consumer, and your physician is the provider. This individual works on your behalf and is there to help. You have every right to as much information as you need to understand what you need to do and to make informed decisions; no other patient is more important than you. What is important to you must, in turn, be important to your physician.

Here are some approaches that you can use to make your time with your physician productive and satisfying:

• Come prepared to your appointment, with questions and information:
  
  
  • Writing down questions before the appointment helps make sure you raise issues important to you.
    
    
  • Keep a small notebook with you — or a personal digital assistant (PDA) — to record your questions as they occur to you. This works a lot better than scrambling to create a list just before your appointment.
    
    
  • The "information" part of this process is to be prepared to fully inform your physician and perhaps your oncology nurse about how you have been feeling, detailing side effects, what's worked and not worked to relieve them, and any other issues related to your treatment. These notes, too, can be kept in a notebook or PDA.
    
    
• Let your doctor know how much, or how little, you want to know about your illness. Not everyone wants to know the details, and if you are one of those people, your physician does not need to spend time explaining things you don't really want to know.
  
  
• If you want to be fully involved in your care, let your doctor know that you accept responsibility for care decisions, and want to work as a full partner with your health care team — as opposed to waiting for the health care team to decide on a path and then accepting that.
  
  
• If possible, bring someone with you to appointments. This person can take notes and also share perceptions about the meeting with you. Also, having someone with you can be comforting and supportive. This is especially important if you aren't feeling well, and worry that you won't be able to remember everything that is said.
  
  
• If possible, tape record the conversation, with the permission of your physician. This will enable you to later play the tape and have an accurate record of what was said. Family members may want to hear what was said, also.
  
  
• Don't forget about pain. When you are in pain, it's difficult to manage all other aspects of your life — and yet a common complaint among patients is that their doctor fails to ask them if they are in pain. Similarly, physicians could say that it is reasonable for a patient in pain to mention that fact. Make conversations about pain your responsibility, and make sure you ask for and get pain relief. You can do a good and accurate job of informing your doctor about your pain by keeping a pain diary; see an example in the section on Understanding Pain.
  
  
• Don't be hesitant to discuss your research about your disease with your physician. In general, physicians are receptive to patients working to learn about their illness; it shows you care very much and are deeply committed to coping with your cancer. A word of caution, however: keep in mind that your days or weeks (or even months) of research cannot duplicate the eight or more years of medical education your physician has, nor the experience your physicians have gained through their years of caring for many patient like you. Be respectful of his or her views, and in turn, your views and information should be respected as well.
  
  
• Keep asking questions if you aren't sure you fully understand what your doctor has said to you about your treatment and condition. It isn't to be expected that you can "get it" all in one explanation, and you do no one a favor to pretend to understand when you do not. It's not unusual or unexpected for patients and family members to need to have all of this information repeated several times. Failure to understand can result in not handling treatment appropriately, among other things. Also, ask for a contact for questions in your physician's office. It may be that staff other than your doctor can help with some of your questions and concerns.
  
  
• Ask if your doctor welcomes e-mail communications, if this is a way you like to communicate.
  
  
  • Not all physicians do, having concerns that this can lead to misinterpretation and misunderstandings at times.
    
    
  • Another concern is that physicians may have very limited time to deal with e-mails, and if a cancer patient e-mails an important or even urgent message, this may not be retrieved in timely manner, resulting in potentially dangerous delays. If you do establish e-mail communication with your doctor, don't use it when you have an urgent need for information.
    
    
• Let your doctor know you will be open and informative. Make a genuine commitment to keep your physician fully informed about anything you do, any medication you take (including over-the-counter medications, supplements and herbal preparations) that could impact your treatment. Some supplements can be harmful if combined with certain cancer therapies. This honesty is important to both of you.
  
  
• If communication with your doctor isn't going well, spend some time letting her or him better understand you by discussing this. Sometimes your doctor may be so pressed for time that conversations can be less informative and communicative than you need.

Some suggestions to make:

• Ask that important conversations be held with you in a private setting, when you are dressed — not in an examining room with you in a paper gown.
  
  
• Ask your doctor to sit and talk with you, rather than hovering bedside or standing over you while you are seated.
  
  
• Ask your doctor to schedule separate time to talk further with you, if he or she is pressed for time when you have your appointment and you need more information.
  
  
• If your doctor cannot provide information you are seeking, ask for a referral to someone who can help. It's not reasonable to expect any one oncologist to know every detail about cancer and all its aspects, but it is reasonable to be guided to a resource that can help you. Never accept being told, "That's not important and you don't need to bother about it."
  
  
• Ask your physician for recommendations where you might find additional information, including Websites, books and organizations.
  
  
• Ask your oncologist to communicate as needed with other health care providers you may be seeing for other medical conditions. This two-way communication can make treatment go more smoothly.

Is a Change Necessary?

Most people have reasonably successful relationships with their oncologist — but sometimes, for a variety of reasons, communication problems are so great, either with the physician or the physician's staff, that it is in the best interests of a patient to choose another physician. Your relationship with your oncologist is likely to extend over years, as your cancer is treated and then monitored.

Changing oncologists is a serious decision for all concerned, especially if it comes in the middle of treatment. Changing courses in mid-treatment is usually not recommended. But if circumstances warrant, it may be a decision you have to make.

What might be grounds to look elsewhere for care? Only you can decide that. Below are some reasons to consider:

• You and your physician disagree in important ways about your care and your treatment.
  
  
• You lack confidence in your physician
  
  
• Your physician's behavior toward you is consistently impatient, dismissive, curt or patronizing.
  
  
• You are openly discouraged or scolded for doing research and finding information about your cancer.
  
  
• Your calls for information and assistance are routinely not returned within a reasonable time period.
  
  
• The physician's office staff is indifferent or unresponsive to your needs.

Perhaps one of the most important goals of patient-physician communication is to achieve an environment of mutual respect. If you feel that you are not respected and treated with the dignity you deserve, then it is time to select another physician.

Questions for Your Doctor

The list below is to help you frame your questions to your doctor, at the beginning of the relationship in some instances, and later in others.

1. Tell me a bit about your overall approach to cancer care, in general terms.
   
   
2. What treatment do you think is best for me? Why?
   
   
3. What are the benefits you expect from this treatment?
   
   
4. Are there risks to the treatment? If so, what are they, and how to they compare to the likely benefits?
   
   
5. Are there other options to this treatment that are likely to work? If so, what are they?
   
   
6. When will we start treatment?
   
   
7. How long will each kind/phase of treatment last?
   
   
8. What are the side effects anticipated?
   
   
   • How will these be managed?
     
     
   • Are there medications I need to take before treatment?
     
     
   • After treatment?
     
     
   • What is your philosophy about managing pain?
     
     
9. If I experience difficulty following treatment, who should I call?
   
   
   • How long will it be before my problem is addressed?
     
     
10. How will you evaluate how well the treatment is working?
    
    
11. If the planned treatment is not effective, what will be an alternative approach?
    
    
12. Will my treatment interfere with my work? Will I be able to continue?
    
    
13. Will treatment be likely to affect my ability to perform daily tasks of living?
    
    
14. Is any medication I am taking now likely to interfere with my treatment? If so, how will we manage this?
    
    
15. Will my insurance be checked for approval before my treatment begins, and will I be informed if there are problems?
    
    
16. What other resources are available to me for support and information through the social work department of the hospital, or from your office?
    
    
17. Do you have printed materials about my treatment that I can read and study?
    
    
18. What is the best way to reach you if I have additional questions? Who do I call for help if I have an after-hours urgent need or problem?
    
    
19. What are your views on end-of-life care?
    
    
20. Of the several doctors I'm seeing, who's in charge?

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