Talking is not the same as communicating. Health practitioners talk to patients and caregivers but often remain unaware of "what matters" to them. For example, among persons who are very sick or frail only about half of the time do the health practitioners seem aware of bothersome pain and emotional problems. Furthermore, only about 20% of the very sick have been told the right amount of information about what to expect in the future.

It is important to talk with a health care practitioner not only about a serious illness, but also about any fears and concerns. Although it is difficult for some people to speak up during a clinic visit, it is important to take an active part in decisions about care.

Part One: Preparation

• You should complete the survey and make sure a copy of it is reviewed by your health care practitioner. You will see that the form has in italics important issues of which the practitioner may not be aware.
• Bring someone with you if you think you will have trouble understanding or hearing what is being said.
• Write down questions you want to ask.
• You may wish to build youHowsYourHealth Personal Health Record so that it summarizes information from the HowsYourHealth survey and additional information you have added such as a listing of your medications. Then bring the Personal Health Record to the office.
  

Part Two: At the Office

Review with your health practitioner your Current Situation and Action Plan printouts from Howsyourhealth.org or the same information contained in your Personal Health Record (from HowsYourHealth).

Your health care practitioner expects to answer "tough" questions such as:

• Will you talk openly and candidly with me and my family about my illness?
• What type of decisions will my family and I have to make? What can you give us to help make these decisions?
• What will you do if I have a lot of pain or other uncomfortable symptoms?
• How will you help us find excellent professionals with special training when we need them. What about Hospice?
• Will you let me know if treatment stops working so that my family and I can make appropriate decisions?
• Will you still be available to me even when I'm very sick and close to the end of my life?
• Tell the health care practitioner if you don't understand or can't hear what is being said.
• Repeat the information back in your own words.

Part Three: Leaving the Office

• Ask what the next step in your care is.
• Ask for written information about your medications, condition, illness and treatment.
• Are there ways to keep in contact easily by phone or email?
• If you built your HowsYourHealth Personal Health Record, can the health practitioner edit and add important information?
  

Letting your family and friends be part of your care is important. They will want to help but need you to tell them how they can help. The best way to do this is to be as open and honest as possible. Share the details of your medical condition, including treatment and what you have been told about the future. Show them your Current Situation and Action Plan printouts or Personal Health Record from Howsyourhealth.org.

Communicating with those caring for you will often involve asking them to answer some tough questions, but it can help all of you if you can do this in an open and honest way. For example, it may be helpful to ask your family and caregivers:

• Will you seek out information about my disease, advance directives, your roles as caregivers, and what to expect as I get sick and near the end of life?
• Will you respect my wants and needs, even if they are different from what they used to be, or if you think they are strange or silly?
• If I cannot communicate for myself, will you go to bat for me to make sure that what I've asked for is done, even if you would make different choices yourself?
• Will you talk with me openly and lovingly about any unfinished business between us and listen if I need to apologize or ask forgiveness for anything in the past that has hurt you?
• Will you talk with me about my coming death - my fears, my sorrow, my joys and gratitude?
• Will you find care for yourself so that you are not too drained by my illness?
• Will you stay with me even if the going gets rough?

Communication involves both speaking and listening. Some guides for good communication are:

• Listen carefully to what someone is telling you. Listening is very healing.
• Offer any practical assistance that you feel comfortable giving.
• Be honest about your own thoughts, concerns, and feelings. However, use statements such as "I feel", "I believe", "I would want", rather than, "you should", "that's wrong", "everything will be OK."
• When in doubt ask questions
• Good listeners invite others to talk or say more. Some ways to do this are using simple expressions and encouragement to continue. Some examples of these simple expressions are:
  • "Tell me about it."
  • "I'd like to hear about it."
  • "Would you like to talk about it?"
• People usually need to know they have decision making power. Help them see choices.
• Stay in the present as much as possible. Don't dwell on the past.

We have tried to make the How's Your Health error-free. However, those involved in its preparation can not warrant that all of the information is accurate and complete. When you use How's Your Health as a guide for your health and medical care, be sure to discuss any questions about it with your doctor, nurse, or other health care worker.