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Doctor-Patient Communication: A Myositis Support Group summary

Adapted from a talk at the Myositis Support Group of Hospital for Special Surgery

Many people come from a generation that did not ask questions of a doctor. They expected doctors to figure out what was wrong and have all the answers. Others feel they want to ask questions. But they don't feel comfortable doing it when the doctor is rushed - or when the doctor doesn't encourage them to ask question. However, doctors aren't mindreaders. The doctor-patient relationship is a two-way street. The patient needs a doctor for care, and the doctors need feedback in order to provide the best care. Good doctor/patient communication requires a relationship that goes two ways.

People become doctors because they want to care for people, and most hoped largely to cure. But doctors working with patients who have chronic illnesses have to shift their mind-set - to caring for people over time rather than curing. It can be difficult for doctors to know if they are meeting the needs of patients with chronic illnesses. So feedback is very important. Feedback can be:

  • information about how your illness affects you,
  • honesty about other care you may be receiving, or
  • feelings about the doctor's care.

Some people provide feedback by writing letters to make their needs clear. They may also write thank you notes when they feel they receive good care.

Patients are consumers. You or your insurance is paying for a service. You are entitled to good service. It can be frustrating if you feel doctors are doing you a favor by seeing you - but that can happen if the doctor is very busy. You may be reluctant to ask questions. But if you don't, then you may not get all the information you need. It is up to you to ask for good service. But that may take some assertiveness. If you are not satisfied with your care - after trying to improve communications over several visits - it may be time to find a new doctor.

To start a relationship with a doctor, treat it like any other relationship. You want to find out what the other person is like, and you want him or her to know you. You need to think about how to let the doctor know:

  • who you are as a person,
  • what your values are in relation to health care,
  • how the disease has affected your life and changed you, and
  • how your needs are different from other people with the same disease.

Workshop participants presented problems they have had communicating with their doctors. Then the speakers and participants brainstormed ways to build a relationship with a doctor.

The first theme that emerged was that patients want doctors to listen to their concerns or ideas. You need to have an open discussion in which you feel heard and proceed from there. One group member said that she talked about why she might be having muscle weakness, and her doctor listened to her. Sometimes you know your body best - and that can help a doctor plan treatment.

Another theme was how to get the doctor to know you as a person. One member said that it seemed as though doctors do not have enough time. By the time you report your symptoms, they test your muscle strength, and you discuss medications, there is no time left for personal discussion. But patients are not asking too much by wanting their doctors to know more about the effects of the illness on their daily lives. One possibility is asking your doctor for extra time at the next appointment to discuss things that are affecting your personal life or business activities. Then, make sure it's scheduled. It can be valuable to add a positive comment - tell the doctor what aspects of care you are happy with.

Another participant discussed problems in "the system" that are frustrating. For example, she had specifically scheduled the first appointment of the morning so that she wouldn't have to wait long. But another patient was seen before her, and she had to wait a long time for her turn. The result: she was feeling stiff from waiting. Another problem: appointments are sometimes mixed up, and the staff double books appointments. Make sure to tell these problems to your doctor, who may not know all of what goes on in the "outer office."

Some members felt frustrated with doctors' explanations of technical information. One said that the doctor gave her a diagnosis and sent her to a physical therapist, but she didn't understand what she had until the physical therapist explained it. You need to be educated about what is going on and not just given a diagnosis - that's part of your doctor's job. One participant started bringing a tape recorder to her appointments - because her doctor sometimes talks fast. She wants to make sure that she remembers what the doctor tells her. When patients explain that stress makes it difficult to "hear" during a visit, doctors may not be intimidated by a request to tape the visit. Tell the doctor that you understand that a particular diagnosis may be common for them, but it's new to you -- and stressful. So you need to go over new information several times to understand.

Many people are uneasy when their doctors don't look at them. It's normal to need eye contact - which helps create trust. To ask a doctor to look at you while speaking, try using humor and practice asking questions. Some doctors may not be comfortable with the emotional part of the doctor/patient relationship. They may be afraid of getting too involved. Although doctors are taught that they should look at people, sometimes an emotional topic makes it difficult. Telling your doctor that you need eye contact can improve your relationship. It can also help the doctor develop a skill that will benefit other patients. But remember, like any other relationship, the doctor/patient relationship depends on chemistry. If you and your doctor just don't click, you are wrong for each other.

Other group members said that their doctors always seem very busy and rush through appointments. You can find ways to approach busy doctors. Acknowledge how busy the doctor is and let him or her know that you care about them too. But also let the doctor know what you need. It helps the doctor provide better service and teaches the doctor what patients' want and need.

One group member shared how she developed a relationship with her doctor. At first, she felt that she was getting good medical care. But it was difficult because she felt like a number - like any patient rather than an individual. There was no emotional link. She was determined to find ways to communicate with the doctor on a more personal level. She learned what her doctor likes and now bonds with him over basketball and coffee. Finding ways to relate to your doctor - making a connection - is important.

One participant was concerned about telling her doctor when she feels depressed. The doctor tells her that maybe she should see a psychologist, but she just wants him to listen and show compassion. You should be able to tell your doctor when you are upset about something. It's important for your doctor to know when your mood is changing over time. Many people get depressed - aside from chronic illness. Sometimes it just takes five minutes of listening to help, but sometimes treatment with medication or therapy may be needed. By telling your doctor how illness affects your life on an ongoing basis, your doctor can better understand symptoms of depression.

Patients are entitled to:

  • good medical care,
  • education about their illness, its treatment, and how it can affect their lives,
  • compassion,
  • getting questions answered,
  • respect for their individuality,
  • honesty about the details of diagnosis, prognosis (outlook), and treatment.

Reviewing a list of items to think about before appointments can help organize your thoughts and needs before appointments. This will help both you and your doctor. Think about what you want to get out of the visit and mention it to your doctor at the start of your visit. Make sure you get answers to your questions during the visit. If you forget a question or one is not answered, call soon after so that you aren't waiting anxiously until the next visit. Remember, the only way to have a two-way relationship is to give feedback and to let your doctor know what you need.

[Note: Dr. Mazie has trained doctors on communicating with patients. Dr. Wortley has worked with children and adults who have chronic illnesses.]

Learn more about the Myositis Education and Support Group at HSS

Summary prepared by Angela Hunter and Diana Benzaia.


Barbara Mazie, PhD
Medical Educator and Consultant

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