Talking With Your Health Care Team
"I told the doctor when I first met him that I needed honesty from him; otherwise, I didn't want to work with him. So he promised me he would be honest, and he was. He said, 'You've got stage-4 lung cancer. You have 3 months to 2 years if everything works well.' I needed to know everything." - Patrice
As your disease advances, it's still important to give feedback to your doctor. That's the only way he or she can know what is working for you. Many people have a treatment team of health providers who work together to help them. This team may include doctors, nurses, oncology social workers, dietitians, and other specialists. They need to fully know your desires during treatment and at the end of your life. Let them know about any discomfort you have. You have a right to live your remaining days with dignity and peace of mind. So it's important to have a relationship and an understanding with those who will be caring for you.
Here are just a few topics you may want to discuss with your doctor or other members of your health care team:
- Pain or other symptoms. Be honest and open about how you feel. Tell your doctor if you have pain and where. Also tell him or her what you expect in the way of pain relief. (See Getting Help for Your Symptoms for more about pain and other symptoms.)
- Communication. Some people want to know details about their care. Others prefer to know as little as possible. Some patients want their family members to make most of their decisions. What would you prefer? Decide what you want to know, how much you want to know, and when you've heard enough. Choose what is most comfortable for you, then tell your doctor and family members. Ask that they follow through with your wishes.
- Family wishes. Some family members may have trouble dealing with cancer. They don't want to know how far the disease has advanced or how much time doctors think you have. Find out from your family members how much they want to know, and tell your health care team their wishes. Do this as soon as possible. It will help avoid conflicts or distress among your loved ones. (See Talking With the Special People for more on talking to your loved ones.)
Remember that only you and those closest to you can answer many of these questions. Having answers to your questions can help you know what to expect now and in the future.
"My doctor said, 'The cancer is spreading to your lungs,' and from that moment on, I didn't hear a word he said. He started talking about my options, but all I saw were lips moving. I was in total shock." - Rick
- Make a list of your questions before each appointment.
- Bring a family member or trusted friend with you to your medical visits. This person can help you remember what the doctor or nurse said, and talk with you about it after the visit.
- Ask all your questions. If you do not understand an answer, keep asking until you do. There is no such thing as a "stupid" question.
- Take notes. You can do this or you can ask a family member or friend to take them for you. Or you can ask if it's okay to use a recorder.
- Get a phone number of someone to call with follow-up questions.
- Keep a file or notebook of all the papers and test results that your doctor has given you. Take this with you to your visits. Also keep records or some kind of diary of all your visits. List the drugs and tests you have taken.
- Keep a record of any upsetting symptoms or side effects you have. Note when and where they occur. Take this with you on your visits.
- Find out what to do in an emergency. This includes whom to call, how to reach them, and where to go.
No One Knows the Future
It's normal for people to want to know how long they will have to live. It's also natural to want to prepare for what lies ahead. You may want to prepare emotionally as well as to make certain arrangements and plans.
But predicting how long someone will live is not exact. Your doctor may be able to give you an estimate, but keep in mind that it's a guess. Every patient is different. Your doctor has to take into account your type of cancer, treatment, past illnesses, and other factors.
Some patients live long past the time the doctor first predicted. Others live a shorter time. Also, an infection or other complication could happen and change things. Your doctor may know your situation best, but even he or she cannot know the answer for sure. And doctors don't always feel comfortable trying to give you an answer.
In truth, none of us knows when we are going to die. Unexpected events happen every day. The best we can do is try to live fully and for today.