Note: In order to maintain your loved one's privacy, healthcare providers are required to ask permission from your loved one before sharing any of her healthcare information with you.
Why is it important to communicate with healthcare professionals?
Almost everyone feels better and more in control when they understand an illness, how and why it is being treated, and what kinds of side effects may occur. However, many people have a difficult time talking with doctors or nurses. Some feel uncomfortable asking questions or talking about their loved one's cancer and treatment because they're afraid they might look foolish or ask a silly question. Some are afraid if they report too many things, their loved one's treatment will be stopped. You will need a great deal of information to be informed and make decisions. Some of this information is complicated, and often it must come from a wide variety of healthcare providers caring for your loved one.
Talk with doctors and nurses to get the information you need. Here are some tips that others have found to be helpful:
- Approach medical staff with the assumption that they want to help you and would like to give you the information you need.
- Buy a notebook and write down all the questions you and your loved one want to ask at the next doctor visit. Writing down your questions beforehand is one of the best ways to be sure you are being clear. If you get flustered, which happens to many people, you can read your questions.
- Help your loved one speak frankly with her healthcare providers. Help her to express her feelings and to let them know her concerns.
- Ask your healthcare provider to repeat anything you and your loved one don't understand. Repeat it back to make sure you've got it right.
- Take notes during the appointment and ask permission to tape record the visit so you can use it as a reminder at home.
- Let the healthcare providers know when your loved one's needs are not being met.
- Appreciate what the healthcare providers are doing to help your loved one and tell them from time to time.
Important information to tell the doctors and nurses
Tell them about any problems your loved one is having. Examples are:
- Symptoms: Tell them about the symptoms your loved one is having and be specific. How severe are they? (Use a 0-10 scale where 0 = don't have any and 10 = it's bad as they could be.) How often throughout the day/week do they occur? What makes them worse or better? What are you and she doing for symptom relief? How well do those things work?
- Any problems she has in performing her usual daily activities.
- Financial problems because of your loved one's treatment.
- Be sure that her healthcare team knows about all the medications, vitamins, supplements, herbal medications, or alternative therapies that your loved one is taking.
What you should know about your loved one's treatment
People should have all the information they need to provide the best possible care at home. There are many kinds of information that you need:
- An understanding of ovarian cancer diagnosis and stage of disease.
- What medicines are involved in your loved one's treatment.
- Side effects to expect from treatment.
- How to best keep track of treatment and side effects.
- Other treatment that might be available.
- When you should call your doctor or nurse.
- Where you can go to get more information.
- Where you can get support.
Calling the doctor
If you feel the situation is an emergency or urgent and you cannot get the information you need, then call the doctor or an emergency room. To do this, use the word "emergency" in your question, and then be persistent until you have the information you need.
Here are some examples of phrasing you might use:
- "I have an emergency (or urgent need) and need to talk to a doctor."
- "I have a question about ________ and I'm not sure if this is really an emergency. Who can help me?"
- "I'm very concerned about _________. It is urgent."
There are many things you can do to improve your ability to get information you need:
- Be sure you know who you need to reach and how to reach them. If your loved one sees many different doctors, know who you should call for which problems.
- Learn who can answer your questions. Learn which staff members give different kinds of information to people. Example: "Who can tell me when my wife will be discharged?"
- Ask the questions yourself.
- Be sure your statements or questions are phrased clearly.
- Know exactly what information you need.
"My wife's pain medication is not effective."
"My mother's pain is at level ____." (0 = none to 10 = as bad as it could be)
- Focus your attention on what is most important.
- Say the reason you are concerned.
- Get to your question immediately.
- If you and your loved one have a long list of things to talk about, make a consultation appointment, so the doctor can allow enough time.
- Educate yourself about your loved one's ovarian cancer.
- Learn the routine at her doctor's office or clinic so you can make the system work for you.
- Accept that not all questions have answers.
- Try to separate your anger and sense of helplessness about not being able to help your loved one as much as you would like from your feelings about the healthcare team.
Things that can prevent you from getting the information you need
Some people are afraid to ask "stupid questions." This is ovarian cancer - there is no such thing as a stupid question. Some people feel that healthcare providers are so important or so busy that they should not take up their valuable time with questions. This is not so! Healthcare providers are there to help people by sharing information and answering questions. If your loved one's healthcare provider appears very busy, ask: "If this is not a good time, when would be?" Do not feel intimidated. Their role includes answering questions and educating patients and family members. Your loved one has a right to the information.
Think of other obstacles that could interfere with you getting the information you need and make a plan of how you will handle them. Don't be afraid to encourage your loved one to seek a second opinion, especially during times when she is being asked to share in important treatment decisions. Occasionally, there is a bad match between patients and doctors. If you and your loved one find that communication with the healthcare team is so difficult or unsatisfactory that it is interfering with your loved one's treatment or well-being, consider switching doctors.