Talking with the Health Care Team
You will be asked to do many things during your loved one's treatment. One of your main roles may be to help your loved one work with the health care team. You may be asked to go to doctor visits, among other things. A few tips are listed below.
Helping to Get Ready for Visits to the Doctor
- Keep a file or notebook of the patient's medical information. Include the dates of procedures and tests. Bring this file to doctor visits.
- Keep a list of names and doses of medicines and how often they are taken. Bring this list with you.
- Use only trusted sources if you do research for your loved one, such as government and national organizations.
- Make a list of questions and concerns. List the most important questions first.
- Call ahead of time to make sure of the following:
- The doctor has copies of all needed test results, records, and other paperwork.
- You have directions, transportation, and if needed, hotel information.
- If you and the patient have a lot to talk about with the doctor, ask whether:
- You can have a longer appointment (check on fees for this).
- You can talk to the doctor by phone if there are further questions. Or perhaps others on staff can help you. For example, a nurse may be able to answer many of your questions.
- Talk with your loved one before the visit to help prepare yourselves for the possibility that the information given could be different than what you both expect.
Talking with the Doctor
If your loved one takes you with him to talk with the doctor, here are some tips:
- After asking a question, if you're unclear about the answer, ask the doctor to explain more to help you understand.
- Talk with the doctor about any medical advice you have found on your own. Some advice may be incorrect or misleading, or may conflict with what the doctor has told your loved one.
- If a concern isn't being addressed, ask the question in a different way. This may help the doctor understand your concern better.
- Take notes or ask if you can tape-record the visit.
- Know that your loved one has the right to change doctors if he feels his needs aren't being addressed.
Questions to Ask About Treatment
- What medical records, or copies, would you like us to bring?
- What can my loved one do beforehand to prepare for treatment?
- How long will the treatment take?
- Can my loved one go to and from treatment alone? Should someone else go with him?
- Can I or another family member be with my loved one during the treatment?
- What can I do to help her feel more comfortable during the treatment?
- What are the side effects of the treatment?
- After treatment, what do we need to watch for? When should we call you?
- How does filing insurance claims work? Who can help us if we have questions or problems?
Asking About Pain
People who have their pain managed are able to focus on healing and on enjoying life. Although different side effects happen with cancer treatment, pain is one that can be especially troubling. Many caregivers say the one thing they hesitate to ask about is pain. Yet, people who have their pain managed are able to focus on healing and on enjoying life. If your loved one is preoccupied by pain, you may notice personality changes. These might include being distant, not being able to sleep, or not being able to focus on daily activities.
Your loved one does not have to be in pain or discomfort. The medical team should ask regularly about pain levels, but it's up to you and your loved one to be open about any pain. Some people assume that there will always be severe pain with cancer treatment. This is not true. Pain can be managed throughout your loved one's treatment. The key is to talk regularly with the health care team about pain and other symptoms.
Sometimes people with cancer don't want to talk to their health care team about their pain. They worry that the doctor will think that they're complaining or that pain means the cancer is getting worse. Or they think that pain is just something they have to accept. Sometimes people get used to the pain and forget what it's like to live without it.
It's important for your loved one to speak up. Or you can speak up on his behalf. Be honest with the doctor about pain and how it's affecting the daily routine. You and your loved one may need to talk to the health care team on a regular basis about the pain medicines given. These drugs can be adjusted or changed if they aren't working or are causing unpleasant side effects.
Don't be afraid to ask for stronger pain relievers or larger doses if your loved one needs them. Addiction is rarely an issue in people with cancer. Instead, drugs help patients stay as comfortable as possible. People with a history of addiction will want to talk with their doctor about any concerns. To learn more, see the NCI booklet, Pain Control.
Should We Get a Second Opinion?
Some people worry that doctors will be offended if they ask for a second opinion. Usually the opposite is true. Most doctors welcome a second opinion. And many health insurance companies will pay for them.
If your loved one gets a second opinion, the doctor may agree with the first doctor's treatment plan. Or the second doctor may suggest another approach. Either way, your loved one has more information and perhaps a greater sense of control. You both can feel more confident about the decisions you make, knowing that you've looked at your options.