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How Can All Family Members Obtain Important Information from the Doctor?

It is difficult if an individual with cancer has many family/friends that they want to have the latest information. Most doctors and nurses are willing and interested in trying to keep the individual with cancer and family up-to-date, but it is hard especially if some family lives in other states and are in different time zones. Thus, it is important for patients and family to be thoughtful of the amount of time the doctor and nurses spend repeating the same information. Also, different family members may want different amounts of information.

First, remember that the primary person the doctor needs to communicate is with the patient and the patients spouse/significant other/parent. Thus, if you are the family member be sure you do NOT overstep your bounds by going directly to the doctor for information unless the patient has given approval.

One of the best ways to solve this crucial but delicate situation is to have a notebook (like a spiral notebook) for the patient and spouse/significant other. Before each outpatient appointment or before the doctor comes in on rounds each day – make a list of questions that the patient and ALL family members have. Also record any problems, side effects the patient has been having (e.g. pain, insomnia, fatigue, nausea, sadness, anxiety). Then talk with the doctor about all your questions and new physical, psychological or social issues. Write down the answers in the notebook. Then as key family members call or come to visit you can accurately convey the key new information to everyone. This will save time and energy for everyone. If most of the family is out of town the individual with cancer might want to set up a telephone tree giving the accurate information from the doctor to 1 key member who then passes it on to the 2nd family member who passes it onto the 3rd. This information could be communicated to all family through emails.

You may even want to buy a small tape recorder to audiotape key conversations or ask the doctor to write in the book (like the names of chemotherapy drugs. Some individuals who are computer savvy may rather put all this information in a PDA or laptop.)

If you do not understand ANY information, please ASK, ASK, And ASK. At the time of diagnosis and first treatment health care providers tend to tell you everything that will happen for the next few months. This is difficult to absorb. So, as you get through your 1st treatment as the health care professionals to repeat the education/information that you need for the next 1-2 weeks. In this manner, you can get the doctors and nurses to continue to repeat all the information you need to know in small pieces. Ask the doctors or nurses if they can draw pictures or if they have written instructions or handouts. You can then tape or staple these into your notebook

Most often individuals with cancer and their families and friends want to know about side effects. Specifically, they are interested in when will it occur, what will it be like (how severe), how long will it last, what is the cause, and what can you do to help yourself. If this is information you would like, you may need to specifically ask these questions. Health care providers are usually good at listing all the possible side effects you may have but often forget to provide this additional information.

If you have other tips that have helped you and your family, please provide comments for us on this blog.
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