Do not make assumptions regarding others because “they should know.” People are not mind readers. If you want to be sure they know something, tell them.“You just don’t understand!”
HOW OFTEN HAS THIS STATEMENT summed up a frustrating discussion? Whenever we talk with someone, our goal is that the person understands. And we are frustrated when we feel we have not been understood. Failure to communicate effectively can lead to anger, helplessness, isolation, and depression. Such feelings can be even worse when we have a long-term health problem. When communication breaks down, symptoms may go up. Pain can increase, blood sugar and blood pressure levels may rise, and there is increased strain on the heart. Worry caused by conflict and misunderstanding can make us irritable, interfere with concentration, and sometimes lead to accidents. Clearly, poor communication is bad for our physical, mental, and emotional health.
Healthy communication is the lifeblood of relationships, and relationships are a lifeline to healthy coping. Poor communication is the biggest reason for poor relationships between spouses or partners or with family members, friends, coworkers, or members of our health care team.
Good communication is a necessity when you have a long-term condition. Your health care team, in particular, must understand you. And when you don’t understand advice or recommendations from your doctor, the results can be life-threatening. As a self-manager, effective communication skills are essential.
In this chapter we discuss tools to improve communication. Specifically, these are tools to help you express your feelings in a positive way, to minimize conflict, to ask for help, and to say no. We will also discuss how to listen, how to recognize body language and different styles of communication, and how to get more information from others.
Keep in mind that communication is a two-way street. As uncomfortable as you may feel about expressing your feelings or asking for help, chances are that others are also feeling the same way. It may be up to you to make sure the lines of communication are open. Here are two keys to better communication:
Do not make assumptions regarding others because “they should know.” People are not mind readers. If you want to be sure they know something, tell them.
You cannot change the communication of others. What you can do is change your communication to be sure you are understood.
When communication is difficult, take the following steps. First, review the situation. Exactly what is bothering you? What are you feeling? Here is an example.
John and Steve had agreed to go to a football game. When John came to pick him up, Steve was not ready. In fact, he was not sure he wanted to go because he was having trouble with his arthritic knees. The following conversation took place.
Steve: You just don’t understand. If you had pain like I do, you wouldn’t be so quick to criticize. You don’t think of anyone but yourself.
John: Well, I can see that I should just go by myself.
In this conversation, neither John nor Steve had stopped to think about what was really bothering him or how he felt about it. Each blamed the other for an unfortunate situation.
The following is the same conversation but with both people using more thoughtful communications.
John: When we have made plans and then at the last minute you are not sure you can go, I feel frustrated and angry. I don’t know what to do—go on without you, stay here and change our plans, or just not make future plans.
Steve: When this arthritis acts up at the last minute, I am also confused. I keep hoping I can go and so I don’t call you because I don’t want to disappoint you and I really want to go. I keep hoping that my knees will get better as the day wears on.
John: I understand.
Steve: Let’s go to the game. You can let me off at the gate before parking so I won’t have to walk as far. Then I can do the steps slowly and be in our seats when you arrive. I really want to go to the game with you. In the future, I will let you know sooner if I think my arthritis is acting up.
John: Sounds good to me. I really do like your company and knowing how I can help. It is just that being caught by surprise sometimes makes me angry.
In this dialogue, John and Steve talked about the situation and how they felt about it. Neither blamed the other.
Unfortunately, we are often in situations where the other person uses blaming communications. Maybe we are not listening, get caught, and then we blame the other person. Even in this situation, thoughtful communication can be helpful. Look at the following example.
Jan: Why do you always spoil my plans? At least you could have called. I am really tired of trying to do anything with you.
Sandra: I understand. When my anxiety acts up at the last minute, I am confused. I keep hoping I can go and so I don’t call you because I don’t want to disappoint you. I really want to go. I keep hoping that I will feel less anxious as the day wears on.
Jan: Well, I hope that in the future you will call. I don’t like being caught by surprise.
Sandra: I understand. If it is OK with you, let’s go shopping now. If I start feeling too anxious, I’ll take a break in the coffee shop with my book while you continue to shop. I do want us to keep making plans. In the future, if I am too anxious, I will let you know sooner.
In this example, only Sandra is using thoughtful communication. Jan continues to blame. The outcome, however, is still positive. Both people got what they wanted.
The following are some suggestions for using good communications and creating supportive relationships.
Show respect. Always show respect and regard for the other person. Try not to preach or be excessively demanding. Avoid demeaning or blaming comments such as “Why do you always spoil my plans?” The use of the word you is a clue that your communication might be blaming. A bit of tact and courtesy can go a long way in defusing situations (see “Anger” in Chapter 4, page 56).
Be clear. Describe a specific situation or your observations using the facts. Avoid words like always and never. For example, Sandra said, “When anxiety acts up at the last minute, I am confused. I keep hoping I can go and so I don’t call you because I don’t want to disappoint you and I really want to go. I keep hoping that I will feel better as the day wears on.”
Don’t make assumptions. Ask for more detail. Jan did not do this. She assumed that Sandra was rude because she did not call. It would have been better if she asked Sandra why she hadn’t called earlier. Assumptions are the enemy of good communication. Many arguments arise from one person expecting the other person to be a mind reader. One sign that you are making assumptions is thinking, “This person should know …” Don’t rely on mind reading; express your own needs and feelings directly and clearly, and ask questions if you don’t understand something.
Open up. Try to express your feelings openly and honestly. Don’t make others guess what you are feeling—chances are they may be off-base. Sandra did the right thing. She talked about wanting to go, not wanting to disappoint Jan, and hoping that her anxiety would get better.
Accept the feelings of others. Try to understand them. This is not always easy. Sometimes you need to think about what was said instead of answering at once. You can always stall a bit by saying “I understand” or “I’m not sure I understand; could you explain some more?”
Use humor—sparingly. Sometimes gently introducing a bit of humor works wonders. But don’t use sarcasm or demeaning humor, and know when to be serious.
Avoid the role of victim. You become a victim when you do not express your needs and feelings or expect that someone else should act in a certain way. Unless you have done something to hurt another person, you should not apologize. Apologizing all the time is a sign that you view yourself as a victim. You deserve respect, and you have a right to express your wants and needs.
Listen first. Good listeners seldom interrupt. Wait a few seconds when someone is finished talking before you respond. He or she may have more to say.
Many of us are uncomfortable expressing our feelings, especially when it may seem that we are being critical of someone else.
If emotions are high, attempts to express frustration can be full of “you” messages. These suggest blame, causing the other person to feel under attack. Suddenly, the other person is on the defensive, and barriers go up. The situation just escalates from there, leading to anger, frustration, and bad feelings.
“I” statements are direct, assertive expressions of your views and feelings; whereas “you” sentences are accusative and confrontational. For example, “I try very hard to do the best work I can,” not “You always criticize me.” Or “I appreciate it when you turn down the television while I talk,” not “You never pay attention.” Notice that “I feel that you are not treating me fairly” is actually a disguised “you” statement. A true “I” statement would be, “I feel angry and hurt.” Here are some more examples:
Watch out for hidden “you” messages. These are “you” messages with “I feel …” stuck in front of them. Here’s an example:
The trick to “I” messages is to avoid the use of the word you and instead report your personal feelings using the word I. Of course, like any new skill, crafting “I” messages takes practice. Start by really listening, to yourself and to others. (Grocery stores are a good place to here lots of “you” messages as parents talk to their children.) In your head, take some of the “you” messages and turn them into “I” messages. You’ll be surprised at how fast “I” messages become a habit. If using “I” statements seems difficult, try adopting this format:
“I notice …” (state just the facts)
“I think …” (state your opinion)
“I feel …” (state what your feelings are)
“I want …” (state exactly what you’d like the other person to do)
For example, you make a special bread to bring as a gift to a friend. Somebody comes along in the kitchen, sees it on the counter, and cuts out a large slice. You’re upset because, with a piece missing, the gift is ruined. You might say to the bread eater: “You cut into my special bread (observation). You should have asked me about it first (opinion). I’m really upset and disappointed because I can’t give it as a gift now (feeling). I’d like an apology, and I’d like for you to ask me first next time (want).”
Here are some “I” message cautions. First, they are not a cure-all. Sometimes the listener has to have time to hear them. This is especially true if the person is used to hearing blaming “you” messages. If using “I” messages do not work at first, continue to use them. Things will change as you gain skill and old patterns of communication are broken.
Second, some people use “I” messages as a means of manipulation. They may often express that they are sad, angry, or frustrated in order to gain sympathy from others. If used in this way, problems can escalate. Effective “I” messages must report honest feelings.
Finally, note that “I” messages are an excellent way to express positive feelings and compliments. For example, “I really appreciate the extra time you gave me today, doctor.”
Good communication skills help make life easier for everyone, especially those with long-term health problems. The table above summarizes some words that can help or hinder this communication.
Besides “I” messages, there are other ways to reduce conflict.
Shift the focus. If a discussion gets off topic and emotions are running high, shift the focus of the conversation. That is, bring the discussion back to the agreed topic. For example, you might say something like “We’re both getting upset now and drifting away from the topic we agreed to discuss.” Or “I feel like we are bringing up other things than what we agreed to talk about, and I’m getting upset. Can we discuss these other things later and just talk about what we originally agreed on?”
Buy time. For example, you might say, “I think I understand your concerns, but I need more time to think about it before I can respond.” Or “I hear what you are saying, but I am too frustrated to respond now. I need to find out more about this before I can respond.”
Make sure you understand each other’s viewpoints. You do this by summarizing what you heard and asking for clarification. You can also switch roles. Try arguing the other person’s position as thoroughly and thoughtfully as possible. This will help you understand all sides of an issue, as well as convey that you respect and value the other’s point of view. It will also help you develop tolerance and empathy for others.
Look for compromise. You may not always find the perfect solution to a problem or reach total agreement. Nevertheless, it may be possible to compromise. Find something on which you can both agree. For example, you can do it your way this time and the other person’s way the next time. Agree to part of what you want and part of what the other person wants. Or decide what you’ll do and what the other person will do in return. These are all forms of compromise that can help you through some difficult times.
Say you’re sorry. We have all said or done things that have, intentionally or unintentionally, hurt others. Many relationships are hurt—sometimes for years—because people have not learned the powerful social skill of apologizing. Often all it takes is a simple, sincere apology to restore a relationship.
Rather than a sign of weak character, an apology shows great strength. To be effective, an apology must do all of the following:
Admit the specific mistake and accept responsibility for it. You must name the offense; no glossing over with just “I’m sorry for what I did.” Be specific. You might say, for example, “I’m very sorry that I spoke behind your back.” Explain the particular circumstances that led you to do what you did. Don’t offer excuses or sidestep responsibility.
Express your feelings. A genuine, heartfelt apology involves some suffering. Sadness shows that the relationship matters to you.
Acknowledge the impact of wrongdoing. You might say, “I know that I hurt you and that my behavior cost you a lot. For that I am very sorry.”
Offer to make amends. Ask what you can do to make the situation better, or volunteer specific suggestions.
Making an apology is not fun, but it is an act of courage, generosity, and healing. It brings the possibility of a renewed and stronger relationship, and it can also bring peace within yourself.
Getting and giving help is a part of life but one that can cause many problems. Even though most of us sometimes need help, few of us like to ask for it. We may not want to admit that we are unable to do things for ourselves. We may not want to be a burden on others. We may hedge or make a very vague request: “I’m sorry to have to ask this …” “I know this is asking a lot …” “I hate to ask this, but …” Hedging tends to put the other person on the defensive: “Gosh, what’s he going to ask that’s so much, anyway?” To avoid this response, be specific. A general request can lead to misunderstanding. The person being asked to help may react negatively if the request is not clear. This leads to a further breakdown in communication and no help. A specific request is more likely to have a positive result.
General request: “I know this is the last thing you want to do, but I need help moving. Will you help me?”
Reaction: “Uh … well … I don’t know. Um … can I get back to you after I check my schedule?” (probably next year!)
Specific request: “I’m moving next week, and I’d like to move my books and kitchen stuff ahead of time. Would you mind helping me load and unload the boxes in my car Saturday morning? I think it can be done in one trip.”
Reaction: “I’m busy Saturday morning, but I could give you a hand Friday night.”
People with health problems sometimes deal with offers of help that are not needed or desired. In most cases, these offers come from important people in your life. These people care for you and genuinely want to help. A well-worded “I” message allows you to decline the help without embarrassing the other person. “Thank you for being so thoughtful, but today I think I can handle it myself. I hope I can take you up on your offer another time.”
Let’s look at the other side: you are the one being asked for help. It is probably best not to answer right away. You may need more information. If a request leaves you feeling negative, trust your feelings.
The example of helping a person move is a good one. “Help me move” can mean anything from moving furniture up stairs to picking up the pizza for the hungry troops. Using skills that get at the specifics will avoid problems. It is important to understand any request fully before responding. Asking for more information or restating the request will often bring more clarity: “Before I answer, …” will not only clarify the request but also prevent the person from assuming that you are going to say yes.
If you decide to say no, it is important to acknowledge the importance of the request. In this way, the person will see that you are rejecting the request rather than the person. Your turndown should not be a putdown. “That sounds like a worthwhile project you’re doing, but it’s beyond what I can do this week.” Again, specifics are the key. Try to be clear about the conditions of your turndown: will you always turn down this request, or is it just that today or this week or right now is a problem? If you are feeling overwhelmed and put upon, saying no can be a useful tool. You may wish to make a counteroffer such as “I won’t be able to drive today, but I will next week.” But remember, you always have the legitimate right to decline a request, even if it is a reasonable one.
We often hear “How can I help?” Our answer is often “I don’t know” or “Thank you, but I don’t need any help.” All the time we are thinking, “They should know …” Be prepared to accept help by having a specific answer. For example, “It would be great if we could go for a walk together once a week” or “Could you please take out the garbage? I can’t lift it.” Just remember that people cannot read your mind, so you’ll need to tell them what help you want and thank them for it. Think about how each person can help. If possible, give people a task that they can easily accomplish. You are giving them a gift. People like being helpful and feel rejected when they cannot assist someone for whom they care. It is also beneficial to be grateful for the help you receive (see “Practice Gratitude,” page 86, in Chapter 5).
Good listening is probably the most important communication skill. Most of us are much better at talking than we are at listening. When others talk to us, we are often preparing a response instead of just listening. There are several steps to being a good listener:
1. Listen to the words and tone of voice, and observe body language (see page 142). There may be times when the words being used don’t tell the whole story. Is the voice wavering? Is the speaker struggling to find the right words? Do you notice body tension? Does he or she seem distracted? Do you hear sarcasm? What is the facial expression? If you pick up on some of these signs, the speaker probably has more on his or her mind.
2. Let the person know you heard what he or she said. This may be a simple “uh huh.” Many times the only thing the other person wants is acknowledgment or just someone to listen. Sometimes it is helpful just to talk to a sympathetic listener.
3. Let the person know you heard both the content and the emotion behind what he or she said. You can do this by restating the content. For example, “Sounds like you are planning a nice trip.” Or you can respond by acknowledging the emotions: “That must be difficult” or “How sad you must feel.” When you respond on an emotional level, the results are often startling. These responses tend to open the gates for more expression of feelings and thoughts. Responding to either the content or the emotion can help communication. It discourages the other person from simply repeating what has been said. But don’t try to talk people out of their feelings. They are real to them. Just listen and reflect.
4. Respond by seeking more information (see page 142). This is especially important if you are not completely clear about what was said or what is wanted.
Getting more information is a bit of an art. It can involve both simple and more complicated techniques.
The simplest way to get more information is to ask. “Tell me more” will probably get you more, as will “I don’t understand; please explain,” “I would like to know more about …,” “Would you say that another way?” “How do you mean?” “I’m not sure I got that,” and “Could you expand on that?”
Another way to get more information is to paraphrase (repeat what you heard in your own words). This is a good tool if you want to make sure you understand what the other person meant (the actual meaning behind what he or she said). Paraphrasing can either help or hinder effective communication. This depends on the way the paraphrase is worded. It is important to remember to paraphrase in the form of a question, not a statement. For example, someone says:
“I don’t know. I’m really not feeling up to par. This party will be crowded, there’ll probably be smokers, and I really don’t know the hosts very well.”
Provocative paraphrase:
“Obviously, you’re telling me you don’t want to go to the party.”
This response might provoke an angry response such as “No, I didn’t say that! If you’re going to be that way, I’ll stay home for sure.” Or the response might be no response—a total shutdown because of either anger or despair (“he just doesn’t understand”). People don’t like to be told what they meant.
Here’s a better paraphrase, expressed as a question:
“Are you saying that you’d rather stay home than go to the party?”
The response to this paraphrase might be:
“That’s not what I meant. Now that I’m using oxygen, I’m feeling a little nervous about meeting new people. I’d appreciate it if you’d stay near me during the party. I’d feel better about it, and I might have a good time.”
As you can see, the second paraphrase helps communication. You have discovered the real reason for expressing doubt about the party. In short, you get more information when you paraphrase with questions.
Be specific. If you want specific information, you must ask specific questions. We often speak in generalities. For example:
The doctor has not gotten much information. “Not so good” isn’t very useful. Here’s how the doctor gets more information:
… and so on.
Health care providers are trained to get specific information from patients, although they sometimes ask general questions. Most of us are not trained, but we can learn to ask specific questions. Simply asking for specifics often works: “Can you be more specific about … ?” “Are you thinking of something special?”
Avoid asking, “Why?” This is far too general a question. “Why?” makes a person think in terms of cause and effect and can put people on the defensive. A person may respond at an entirely different level than you had in mind.
Most of us have had the experience of being with a 3-year-old who just keeps asking “Why?” over and over again. This goes on until the child gets the wanted information (or the parent runs from the room, screaming). The poor parent doesn’t have the faintest idea what the child has in mind and answers “Because …” in an increasingly specific order until the child’s question is answered. Sometimes, however, the parent’s answers are very different from what the child really wants to know, and the child never gets the information she or he wanted. Rather than using why, begin your responses with who, which, when, or where. These words promote a specific response.
We should point out that sometimes we do not get the correct information because we do not know what question to ask. For example, you may be seeking legal services from a senior center. You call and ask if there is a lawyer on staff and hang up when the answer is no. If instead you had asked where you might get low-cost legal advice, you might have gotten some referrals.
Part of listening to what others are saying includes observing how they say it. Even when we say nothing, our bodies are talking; sometimes they are even shouting. Research shows that our body language is more than half of what we communicate. If we want to communicate really well, we must be aware of body language, facial expressions, and tone of voice. These should match what we say in words. If we do not do this, we are sending mixed messages and creating misunderstandings. For example, if you want to make a firm statement, look at the other person, and keep your expression friendly. Stand tall and confident; relax your legs and arms, and breathe. You may even lean forward to show your interest. Try not to sneer or bite your lips; this might indicate discomfort or doubt. Don’t move away or slouch, as these communicate disinterest and uncertainty.
When you notice that the body language and words of others do not match, gently point this out. Ask for clarification. For example, you might say, “Dear, I hear you saying that you would like to go with me to the family picnic, but you look tired and you’re yawning as you speak. Would you rather stay home and rest while I go alone?”
In addition to reading people’s body language, it is helpful to recognize and appreciate that we all express ourselves differently. “Our conversational styles vary according to where we were born, how we were raised, our occupations, our cultural backgrounds, and especially our genders.”
For example, women tend to ask questions that are more personal. These show interest and help form relationships. Men are more likely to offer opinions or suggestions and to state facts. They tend to discuss problems just to find solutions, whereas women want to share their feelings and experiences. No one style is better or worse; they’re just different. By acknowledging and accepting these differences, we can reduce some of the misunderstanding, frustration, and resentment we feel in our communications with others.
One of the keys to getting good health care is to communicate well with our health care providers. This can be a challenge. We may be afraid to talk freely, or we feel that there is not enough time. Health professionals may use words we do not understand; we may not want to share personal and possibly embarrassing information. These fears and feelings can block communications with our providers and harm our health.
Providers share the responsibility for poor communication. They sometimes feel too busy or important to take the time to talk with and know their patients. They may ignore or tune out our questions. Their actions or inaction might offend us.
Although we do not have to become best friends with our providers, we should expect them to be attentive, caring, and able to explain things clearly. This is especially important if we have an ongoing health condition. We may think that we can only get the best care by going to specialists. This may sometimes be true, but it can also greatly complicate the care you receive. You may be seeing several specialists. They may not get to really know you and may not be aware of what the other care providers are doing, thinking, or prescribing. These are good reasons to have a primary provider or a medical “home.” A relationship with a provider is much like a business partnership or even a marriage. Establishing and maintaining this long-term relationship may take some effort, but it can make a large difference to your health.
Your provider probably knows more intimate details about you than anyone else, except perhaps your spouse, partner, or parents. You, in turn, should feel comfortable expressing your fears, asking questions that you may think are “stupid,” and negotiating a treatment plan to satisfy you both.
Two things will help keep the lines of communication open. First, we must be clear about what we want from our providers. Many of us would like them to be like warmhearted computers—gigantic brains, stuffed with knowledge about the human body and mind (especially ours). We want our providers to analyze the situation, read our minds, make a perfect diagnosis, come up with a treatment plan, and tell us what to expect. At the same time, we want them to be warm and caring and to make us feel as though we are their most important patient.
Most providers wish they were just that sort of person. Unfortunately, no one provider can be all things to all patients. Providers are human. They have bad days, they get headaches, they get tired, and they get sore feet. They have families who demand their time and attention, and they may get frustrated by paperwork, electronic record keeping, and large bureaucracies.
Most doctors and other health care professionals endured grueling training. They entered the health care system because they wanted to help sick people. They are frustrated when they cannot cure someone with a chronic condition. Many times they must take their satisfaction from improvements rather than cures or even from slowing the decline of some conditions. Undoubtedly, you have been frustrated, angry, or depressed from time to time about your illness, but bear in mind that your doctor has probably felt similar emotions about his or her inability to make you well. In this, you are truly partners.
Time is the second threat to a good patient-provider relationship. If you or your provider had a fantasy about the best thing to happen in your relationship, it would probably involve more face-to-face time. When time is short, the resulting anxiety can bring about rushed communication. “You” messages, and misunderstandings are common.
Most doctors and other providers are on very tight schedules. This becomes painfully clear when you have had to wait in the doctor’s office because of an emergency or a late patient that has delayed your appointment. Doctors try to stay on schedule. This sometimes causes both patients and doctors to feel rushed. One way to help you to get the most from your visit is to take PART (Prepare, Ask, Repeat, Take action).
Before visiting or calling your health care provider, prepare an agenda. What are the reasons for your visit? What do you expect from your doctor?
Take some time to make a written list of your concerns or questions. Have you ever thought to yourself, after you walked out of the doctor’s office, “Why didn’t I ask about … ?” or “I forgot to mention … “Making a list beforehand helps ensure that your main concerns get addressed. Be realistic. If you have 13 different problems, your provider probably cannot deal with all of them in one visit. Star or highlight your two or three most important items.
Give the list to your doctor at the beginning of the visit, and explain that you have starred your most important concerns. By giving your doctor the whole list, you let the doctor know which items are the most important to you; it also lets the doctor see everything in case there is something medically important that is not starred. If you wait until the end of your appointment to bring up concerns, there will not be time to discuss them.
Here is an example. The provider asks, “What brings you in today?” and you might say something like “I have a lot of things I want to discuss this visit” (looking at his or her watch and thinking of the appointment schedule, the doctor immediately begins to feel anxious), “but I know that we have a limited amount of time. The things that most concern me are my shoulder pain, my dizziness, and the side effects from one of the medications I’m taking” (the doctor feels relieved because the concerns are focused and potentially manageable within the appointment time available).
There are two other things to prepare before your visit. Bring a list of all your medications and the dosage. If this is difficult, put all your meds in a bag and bring them with you. Do not forget vitamins and over-the-counter medications and supplements.
The final thing to prepare is your story. Visit time is short. When the provider asks how you are feeling, some people will go on for several minutes about this and that symptom. It is better to say, “I think that overall my anxiety is less, but now I have more trouble sleeping.” You should be prepared to describe your symptoms:
When they started
How long they last
Where they are located
What makes them better or worse
Whether you have had similar problems before
Whether you have changed your diet, exercise, or medications in a way that might contribute to the symptoms
What worries you most about the symptoms
What you think might be causing the symptoms
If you were on a new medication or treatment, be ready to report how it went. If you are going to several providers, bring with you all the tests that you have had in the past 6 months.
In telling your story, talk about trends (are you getting better or worse, or are you the same?). Also talk about tempo (are your symptoms more or less frequent or intense?). For example, “In general, I am slowly getting better, although today I do not feel well.”
Be as open as you can in sharing your thoughts, feelings, and fears. Remember, your provider is not a mind reader. If you are worried, explain why: “I am worried that I may not be able to work,” or “My father had similar symptoms before he died.” The more open you are, the more likely it is that your provider can help. If you have a problem, don’t wait for the provider to “discover” it. State your concern immediately. For example, “I am worried about this mole on my chest.”
The more specific you can be (without overdoing it with irrelevant details), the clearer a picture the doctor will have of your problem, and the less time will be wasted for both of you.
Share your hunches or guesses about what might be causing your symptoms, as they often provide vital clues to an accurate diagnosis. Even if it turns out that your guesses are not correct, it gives your doctor the opportunity to reassure you or address your hidden concerns.
Your most powerful tool in the doctor-patient partnership is the question. You can fill in vitally important missing pieces of information and close critical gaps in communication with your questions. And asking all your questions reflects your active participation in the process of care, a critical ingredient to restoring your health. Getting answers and information you understand is a cornerstone of self-management. Be prepared to ask questions about diagnosis, tests, treatments, and follow-up.
Diagnosis. Ask what’s wrong, what caused it, if it is contagious, what the future outlook (prognosis) is, and what can be done to prevent or manage it.
Tests. If the doctor wants to do tests, ask how the results are likely to affect treatment and what will happen if you are not tested. If you decide to have a test, find out how to prepare for the test and what it will be like. Also ask how and when you will get the results.
Treatments. Ask if there are any choices in treatments and the advantages and disadvantages of each. Ask what will happen if you have no treatment (see Medications, page 217).
Follow-up. Find out if and when you should call or return for a follow-up visit. What symptoms should you watch for, and what should you do if they occur?
One way to check that you have really gotten everything is to briefly report back key points. For example, “You want me to take this three times a day.” Repeating back also gives the provider a chance to quickly correct any misunderstandings and miscommunications.
If you don’t understand or remember something the provider said, admit that you need to go over it again. For example, “I’m pretty sure you told me some of this before, but I’m still confused about it.” Don’t be afraid to ask what you may consider a stupid question. Such questions are important and may prevent misunderstanding.
Sometimes it is hard to remember everything. You may want to take notes or bring another person to important visits. You can even tape-record the visit if the medical professional grants permission.
At the end of a visit, you need to clearly understand what to do next. This includes treatments, tests, and when to return. You should also know any danger signs and what you should do if they occur. If necessary, ask your provider to write down instructions, recommend reading material, or indicate other places you can get help.
If for some reason you can’t or won’t follow the provider’s advice, let her or him know. For example, “I didn’t take the aspirin. It gives me stomach problems” or “My insurance doesn’t cover that much therapy. I can’t afford it” or “I’ve tried to exercise, but I can’t seem to keep it up.” If your provider knows why you can’t or won’t follow advice, she or he may be able to make other suggestions. If you don’t share the barriers to taking actions, it’s difficult for your provider to help.
Sometimes you may want to see another provider or have a second opinion. Asking for this can be hard. This is especially true if you have had a long relationship with your provider. You may worry that asking for another opinion will anger your provider or that your provider will take your request in the wrong way. Providers are seldom hurt by requests for a second opinion. If your condition is complicated or difficult, the doctor may have already consulted with another doctor (or more than one). This is often done informally. However, if you find yourself asking for third, fourth, and fifth opinions, this may be unproductive.
Asking for a second opinion is perfectly acceptable, and providers are taught to expect such requests. Ask for a second opinion by using a nonthreatening “I” message:
“I’m still feeling confused and uncomfortable about this treatment. I feel that another opinion might reassure me. Can you suggest someone I could see?”
In this way, you have expressed your own feelings without suggesting that the provider is at fault. You have also confirmed your confidence in your provider by asking for his or her recommendation. (However, you are not bound by this suggestion; you may choose to see anyone you wish.)
Let your provider know how satisfied you are with your care. If you do not like the way you have been treated by any of the members of your health care team, let them know. Likewise, if you are pleased with your care, let your providers know. Everyone appreciates compliments and positive feedback, especially members of your health care team. They are human, and your praise can help nourish and console these busy, hardworking professionals. Letting them know that you appreciate their efforts is one of the best ways to improve your relationship with them—plus it makes them feel good!
Many decisions in medical care are not clear-cut, and often there is more than one option. The best decisions, except in life-threatening emergencies, depend on your values and preferences and should not be left solely to your doctor. For example, if you have high blood pressure, you might say, “I’m very conservative about taking medications. What’s a reasonable period of time for me to try exercise, diet, and relaxation first, before I start taking the medication?”
To make an informed choice about any treatment, you need to know what the cost and risks of the proposed treatment are. This includes the likelihood of possible complications such as drug reactions, bleeding, infection, injury, or death. It also includes the personal costs, such as absences from work, and financial considerations, such as how much of the proposed treatments your insurance will cover.
You also need to understand how likely it is that the proposed treatments will benefit you in terms of prolonging your life, relieving your symptoms, or improving your ability to function.
Sometimes the best choice may be to delay a decision about treatment in favor of “watchful waiting.”
No one can tell you which choice is right for you. But to make an informed choice, you need information about the treatment options. Informed choice, not merely informed consent, is essential to quality medical care. The best medical care for you combines your doctor’s medical expertise with your own knowledge, skills, and values.
Making decisions about treatments can be difficult. For some suggestions on how to make decisions, see page 18, and see Chapter 14 for help on how to evaluate new treatments.
So far we have discussed communication with providers. Today most providers work in larger systems such as clinics. Appointments, billing, and telephone and e-mail use are usually decided by someone other than your provider.
If you are unhappy with your health care system, don’t just suffer in silence. Do something about it. Find out who is running the organization and who makes decisions. Then share your feelings in a constructive way by letter, phone, or e-mail. Most health care systems want to keep you as a patient and therefore usually respond. The problem is that the people who make the decisions tend to isolate themselves. It is easier to express our feelings to the receptionist, nurse, or doctor. Unfortunately, these people have little or no power in the system. However, they can tell you whom to write to. The more closely you can form a partnership with your providers, the better able all of you together will be to make the system more responsive.
If you do decide to write or e-mail, here are some suggestions. Keep your letter short and factual. Tell what actions you would find helpful. For example:
Dear Mr. Brown:
Yesterday I had a 10:00 A.M. appointment with Dr. Zim. She did not see me until 12:15 P.M., and my total time with the doctor was eight minutes. I was told to make another appointment so I could get my questions answered.
I know that sometimes there are emergencies. I would appreciate being called if my doctor is running late or told when to return. I would also like 15 or more minutes with my doctor.
I would appreciate a reply within two weeks.
The following are a few hints for working with the health care system. Not all of these problems and suggestions will apply to all systems, but most do.
“I hate the phone system.” Often when we call for an appointment or information, we reach an automated system. This is frustrating. Unfortunately, we cannot change this. However, phone systems do not change often. If we can memorize the numbers or keys to press, we can move more quickly from one part of the system to another. Sometimes pressing the pound key (#) or 0 will get us to a real person. Once you do get through, ask if there is a way to do this faster next time.
“It takes too long to get an appointment.” Ask for the first available appointment. Take it. Then ask how you can learn about cancellations. Some systems are happy to call you when they have an empty spot. In others, you may have to call them once or twice a week to check on cancellations. Ask the person making the schedule what you can do to get an earlier appointment. Ask for a telephone number so you can reach the person making appointments directly. Some systems are now setting time aside each day for same-day appointments. If this is available, know when to call. It is usually early in the morning. If you are in pain or believe that you must see a doctor soon, tell the scheduler. If nothing is available, ask how you can see someone soon. No matter how frustrated you are, be nice. The scheduler has the power to either give you an appointment or not.
“I have so many providers; I do not know whom to ask for what.” One of those providers has to be in charge. Your job is to find out which one. Ask each provider who is in charge of coordinating your care. When you get a name, it is most likely your primary care doctor or GP. Call the doctor to confirm that he or she is coordinating your care. Ask how you can help. One way is to let this doctor know when someone else orders a test or new medication. Keeping the doctor informed is especially important when your providers are not in the same system and are not sharing their electronic medical records.
“What is an electronic medical record (EMR) anyway?” Most of your medical information is on a secure computer. Your information can be seen by any provider in the same system. You should know what information is on the system. Sometimes the EMR has just test results, other times it has test results and medication information, and sometimes it has everything that is known about you. An electronic medical record is just like a paper record: it does no good if your providers don’t read it. For example, when you have a test, the doctor ordering the test will know when the test results are ready. However, your other doctors will not know anything about the test unless you tell them to read the results. In short, learn about the medical records system so you can help all your providers use it more effectively.
In the United States and many other countries, you have the right to a copy of almost everything in your record. Ask for copies of all your test results so that you can carry them with you from one provider to the next. In this way, you know that they will not get lost.
“I can never talk to my doctor.” It is hard to get a provider on the phone, but you might be able to e-mail. Many systems now have ways that doctors and patients can communicate by text or e-mail. The next time you see your provider, ask about this. One good thing about systems is that there is usually a way to get routine things like medication refills done quickly. It may mean calling a special number or talking to the nurse. Learn how to do this.
A medical emergency is important. Do not waste time trying to contact your doctor; rather, call 911 (in the United States), go to a hospital emergency department, or call the rescue squad.
“I have to wait too long in the waiting room or the examination room.” Emergencies happen sometimes, and this can cause a wait. More often the system is not efficient. If your schedule is tight and may cause a problem if you are delayed at your appointment, you might try calling your doctor’s office and asking how long you will have to wait. If you learn that your doctor is running late, you can decide whether to go with a book to read or ask to reschedule. You can also show up with your book and ask about the wait. Rather than getting upset, let the receptionist know that you are going to step out for a little while to run a short errand nearby or for a cup of coffee or some shopping and that you will return within a specified amount of time.
“I don’t have enough time with the provider.” This may be a system problem since someone else often decided how many patients to schedule and for how long. The decision is sometimes based on what you tell the scheduler. If you say you need a blood pressure check, you will be given a short visit. If you say you are very depressed and cannot function, you may be given a longer appointment. When making the appointment, ask for the amount of time you want, especially if this is more than 10 or 15 minutes. Be prepared to make a case for more time. You can also ask for the last appointment in the day. You may have to wait a while, but at least the provider will not be pressured because there are more patients to see.
Once you are with a provider and you request more time than is allotted, you make other people wait. An extra 5 minutes may not seem like much. However, a doctor often sees 30 patients a day. If each one takes 5 extra minutes, this means that the doctor has to work an extra 2½ hours that day! Those little bits of extra time add up.
If something in the health care system is not working for you, ask how you can help make it work better. Very often, if you learn how to navigate the system, you can solve or at least partially solve your problems.
Be nice—or at least as nice as possible. If the system or your provider sees you as a difficult patient, life will become more difficult.
If you think that things should not be this way and that it is not fair to place this burden on the patient, we wholeheartedly agree. Health systems should change to be more responsive and patient-friendly. A few health care systems are already doing this. In the meantime, we offer these suggestions to help you deal with a difficult situation.
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