The best way to obtain the vital information you need is to communicate effectively with those who will be providing your health care. In fact, brokering clear communication with your doctor and other health care providers is an essential ongoing way to receive the information, support, and quality care you need.

Here are some tools that may assist you in communicating effectively with your health care team and obtaining the information and support you need.

1. Plan what you would like to discuss with your doctor and other health professionals. What information do you want? Medical facts of your case? General overview of illness? Treatment options? Supportive services? Make a list of questions to take with you. (See "At Diagnosis: Important questions to ask your doctor.")

2. Ask for a specific amount of time for this discussion, and an environment that ensures privacy. Doctor's appointments are usually scheduled for 10-15 minutes. If you feel that is an insufficient time to discuss the serious issues at hand, you may want to ask for extra time; request a 30 minute appointment instead. Know that in some circumstances you may be asked to pay extra for added schedule time. It may also be possible to make two separate appointments, on different days.

3. Determine who else you might want to come to the appointment with you. With the added stress of this diagnoses, you may find that it's difficult to retain all the information from your doctors appointments. Because you will be making decisions based on that information, you'll want to be sure what you hear is accurate. Remember: 'a person's decision is only as good as the information upon which it is based.' For this reason, you may want to consider bringing a family member or friend along to record notes, questions, and answers while you and your doctor or nurse are talking.

4. Explain to your doctor or health care provider what you understand about the illness you have. Let him or her know what your medical situation is - how you feel, what symptoms you are having, how your condition has changed over time, what medications you are taking, and what other medical conditions you have. (See "During Treatment: Important questions and information.") Tell the doctor or nurse about any changes and concerns you have. Because of complex medical terminology, speaking with health care professionals can be confusing. Be sure to ask for clarification of terms you do not understand.

5. Ask what phone number to call if you have after-hours or weekend questions or needs. With whom should you speak? Who will be in charge of your care when your doctor is not available? Be sure to ask what sort of physical changes require the immediate notification of a health care professional (for example, a fever of over 101, uncontrolled pain, nausea, or discomfort, or unsafe home situation). Clarify if and when you should call 911 for an emergency. (If you are receiving hospice care, clarify whether in some circumstances you should call the 24 hour on call hospice nurse instead of 911.)

6. Share with your doctor your durable power of attorney for health care and your advance directive. Words like durable power of attorney for health care and advance directive can sound pretty complicated. In reality, these are just ways of trying to make sure your health care wishes are honored. The best single way to do that is to appoint someone to be your Durable Power of Attorney for Health Care. This means you pick a trusted friend or relative to make your health care decisions in case you are unable to do so yourself.

7. Ask for the next steps. Will there be additional testing? What sort of preparation is entailed for each test? (For example, am I permitted to eat and drink before tests? Are there activity limitations before or after the tests?) What are the treatment options? What is the time frame between 'next steps?' When is your next appointment? What can be expected over the next week? Over the next 3 to 6 months?

8. How does your doctor want to communicate with family members? Because of federal regulations, health professionals are not permitted to share any information about your health status with anyone unless you grant permission. You may need to fill out paperwork authorizing which family members your physician and health care providers is authorized to share information with. And you may want to choose a family spokesperson to coordinate communication.

9. Ask for referrals to supportive resources, such as meals, chores, and transportation services. Ask where you may find more information on your specific illness, support groups, or services.

10. When you leave your appointment you should know: your diagnosis, your treatment plan, your medications, what they are for, and next steps. Continue the conversation until you feel you have the information you need.

11. Discuss among family members and friends how you will communicate with each other. It is helpful to set up a way to regularly update family and friends, perhaps by phone tree or email. Determine how often communication should occur and who should take the lead.

12. Finally, be sure to 'schedule' respite for yourself. (This goes for caregivers too!) Receiving the news that either you or a loved one has a serious or life-threatening illness is very, very difficult. It can add exhaustion and stress -- just when your body needs all the help it can get to be well and strong -- or at least become comfortable. Practice saying 'yes' to help, be it friends delivering meals, church members driving you to appointments, or family members coming over to help. In so far as is possible, try to eat well, sleep, and exercise. Rest. And don't forget to make time for prayer.

Created by Compassionate Choices and modified by Consoling Grace.

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Next page: Chapter 1: At Diagnosis: A 'Print and Take' Form of Important Questions to Ask Your Doctor