By Brenda Hearson and Dr. Cornelius Woelk
Good communication is an important part of good health care. Some people find it hard to talk to their doctor or health care team, especially about serious illness or dying:
- We may not want to seem unreasonably worried or demanding.
- We may be afraid to hear details or learn what may happen next.
- We may be afraid that if we talk about illness and death, we weaken our will to live and may give up.
Talking about end-of-life worries and concerns is not about being 'overly anxious' or ‘giving up’. It is about being informed and involved in your own care.
In the past, doctors tended to take the lead in conversations, and patients may not have raised questions or concerns unless they were asked. This is slowly changing. Increasingly, the relationship between patient and doctor is seen as a partnership, with input from both. You and your doctor work as a team, and the team may also include the nurses, pharmacist, social worker, and other health care providers.
In this article we suggest ways you can improve communication during this difficult time, whether at an office, clinic, hospital or on the telephone. Throughout the article we refer to you and your doctor, but the tips are applicable to any encounter between you or your family and any member of the health care team.
Prepare for an appointment
Plan your time.
Make the best of each opportunity to communicate. Take a few minutes ahead of time to think about what you need to know, what your concerns are, and who might be the best person to offer help. Think about how much time you need to address your concerns and questions. If you have many things on your mind, ask if you can make a longer appointment, or if you can book two appointments. The following suggestions may make it easier for you, your doctor and health care team to cover everything you need to talk about.
Make a list of what you want to discuss.
List everything you want to ask or tell your doctor. Decide which are the most important items and rank them in order of importance. This is in case your visit is not long enough to cover every item. Setting priorities lets you deal with the most important issues first, so that you can be sure they get talked about. Consider sharing your list with your doctor at the beginning of the visit. He or she may identify items that can be covered together. Your doctor may suggest a different order of priority, based on medical information.
Bring information or anything else you may need.
Consider bringing all your medication to the visit. If you would rather just bring a list of your medication, make sure the list includes the amount of each medication you take at one time, and how often you take it. This list should include any natural or complementary health care products, such as herbs or vitamins. These additional treatments may interact with or change the effectiveness of the treatments the doctor is prescribing (e.g. some naturopathic medications are known to interact with chemotherapy and pain medication). Be ready to talk about your symptoms. It may help to keep notes about the most troublesome symptoms: how severe a symptom is, how often it occurs, what makes it worse, what makes it better, the medication you use to find relief and if it helps. Consider filling out a Symptom Diary for a few days before your appointment.
See also: Symptoms
Consider bringing a family member, friend or volunteer.
It often helps to have someone with you who can listen and even take notes. It is hard to remember everything that is said at an appointment, and it can make a big difference to have someone with you to help you remember details or to ask questions you forgot. Some people ask their doctor if they can record the appointment, to help them remember details later.
Bring an interpreter if needed.
If you speak a different language than your doctor, it may be hard to gather and share information you need. You may find it helps to arrange for an interpreter to be there. While you may be tempted to bring along a family member or friend, you likely get a better translation from someone who does not know you as well. This way you and your doctor can be sure you are exchanging information without the bias of someone who may be struggling with some of the news or information. It also may help you to talk about sensitive subjects, or difficult emotions.
What information do you share?
Emotional and spiritual concerns.
Remember that members of the health care team can help you and your family or friends with emotional and spiritual needs. Not all questions have answers, but sometimes it helps just to talk about these important subjects.
What is important to you.
To care for you properly and meet your needs, your doctor needs to know what is important to you. Think about questions like these, and talk to your doctor about them:
- What do you want to be able to do?
- What kind of stresses or major events are going on in your life?
- What do you hope for in the future?
- When you think of what lies ahead, what worries you the most?
Information you have gathered.
Patients and families often seek information by reading books, searching the internet or talking with friends who have been through similar circumstances. The resulting information may offer new hope or suggest a different approach than what your doctor is suggesting. It is natural to want to share this with your health care team, and it is natural also to worry that you seem to lack of confidence in them. Think of how you can present the information and keep the lines of communication open. You might start the conversation by saying, “I know you said nothing more can be done, but I read (in a magazine or on the internet - specify the magazine or website) about …” Anticipate that your doctor will have limited time. Highlight the information you most want the doctor to know about. If it is written information, bring a copy you can leave with your doctor.
Make good use of your time
Decide what is most important.
The length of your appointment will determine how many topics you can discuss. For regular length appointments, pick the top three or four items or questions you want to discuss and let your doctor know at the beginning what they are (e.g.” I have three questions for you today” or “I need to talk to you about pain, help at home and my children”). Then if there is more time you can go on from there. If you save your most important item for the last, it may get the least amount of time.
Stick to the topic.
Sometimes conversations can wander away from the pressing issues at hand. You may need to remind your doctor, or yourself, of the concerns you hope to sort out during this visit.
You may think your doctor sometimes wants to hear certain things, but it is more important to say what is really on your mind. If you are concerned about a treatment being recommended, or not sure if you are being understood, say so openly. Also, be honest if you feel you need more time or don't understand something. You may run out of time on this visit, but that is a good reason to book the next visit sooner than planned.
Be sure you understand what has been said and what the plan is.
Don’t be afraid to ask questions or summarize information for the doctor, to ensure you understand clearly. If the doctor is prescribing a new medication, ordering a test, or sending you to another specialist be sure to ask why, what it involves, whether there side effects, what the test results will help explain or decide, and what to expect once the results are back. It is okay to repeat what the doctor has said, in your own words, to ensure you understand correctly.
Ask for information in writing if that will help.
Written information can help you remember important things, and it can help you share with family members. For example, you may wish to have a copy of test results to share with someone else, or you may need to have medication instructions written down for you. Ask for a written explanation of technical terms and anything else you don’t understand.
Make plans for further contact.
Ask the doctor what you can expect and what to do if you have a problem. What is the best way to get in touch with him or her? What should you do if you need help on a weekend or during the night? If you feel you need more time to address other questions and concerns, it is okay to ask when you can have 20 minutes (or whatever you need) to talk about concerns you don’t have time for now?
Make decisions with your doctor
Good communication is needed for making health care decisions. The issues involved are often complex, and the process can become intense, especially when life-threatening illness is involved. It helps to include your family and your health care team in the process.
Remember that you are in a partnership with your health care team.
Listen carefully to what doctor says. Expect him or her to listen to you. If you disagree with a test, medication or suggested treatment, say so and explain why. Otherwise your doctor may not know how you feel. Listen to your doctor's response. You may not have considered all aspects of the information or suggestions offered.
Ask about the different treatments or choices.
It is important that you understand all the options available to you. Each of us has a different view of what is essential information. Your need to know may be addressed with questions such as these:
- What are the risks and benefits (pros and cons) of having this treatment or surgery at this time?
- What might I expect if I do not have this treatment or surgery?
- Are there other options for care?
- Whether I have this treatment or choose a different approach to care, what are things I should be doing or thinking about to help me in the future?
If your doctor is recommending a treatment you do not understand, it may help to ask these questions:
- How did you come to make that decision? Or,
- Can you help me to understand how you came to that decision?
See also: Health Care Decisions: An Approach to Decision Making and Advance Care Planning.
Other ways to connect with your doctor
Telephone or hospital conversations.
If you are trying to connect with the doctor by phone, call the office and ask when the doctor will be in, or ask what is the best way to set up a telephone conversation? If you are trying to connect at the hospital, ask the hospital staff when the doctor usually does rounds or when you might be able to meet with him or her. Ask the nursing staff to help you set up a meeting time with the doctor.
Sometimes it helps to ask for a meeting at which the patient and perhaps family members can meet with the doctor and/or health team. Sitting together can give everyone a chance to share information, ask questions, learn what everyone's goals are, and make a plan for the care you will receive.
To read more:
US National Institute on Aging. (2005) Talking With Your Doctor, US Department of Health and Human Services.
Content reviewed March 2012.