Mary has been having a nagging back pain for several weeks. The pain is keeping her from sleeping, and she is anxious because her grandmother had a similar pain that turned out to be cancer. When Mary sees her clinician, Dr. Lamb, for her regular visit, the doctor seems busy; he rushes through the visit and talks mainly about her T cells and viral load. Near the end of the appointment, Mary mentions her back pain to Dr. Lamb. He asks a couple of questions about how long she has had it and whether it spreads to her leg, then drops the topic and tells her to quit smoking. Mary leaves without being sure what to do next about her pain.
When you go to see your medical provider, do you sometimes leave frustrated or confused, with unanswered questions? Does your medical provider spend too much time on blood tests and labwork, and not enough time listening to your concerns? Do you feel rushed and unable to discuss what is really going on with your health?
If so, you are not alone -- just about everyone, on both sides of the stethoscope, feels this way about the United States medical system these days. In this article, we explore some of the reasons why provider-patient communication can be difficult, take a look at the types of clinicians and their "culture" and agenda, and suggest some insider strategies you can use to get your agenda attended to during your medical visits.
Regardless of what kind of insurance you have (or don't have, as is true for far too many of us), the economics of health care in the U.S. means your clinician is probably scheduled for four or even five patients per hour -- that's fifteen minutes or less per person, including saying hello and goodbye and writing notes about the visit. There is no way you and your clinician will be able to give all of your health issues the attention they deserve in one 15-minute visit every three months. In addition, under the financial structure of our health care system, disease prevention and patient education are generally uncompensated. Performing procedures is rewarded more richly than thinking and talking; seeing many patients superficially pays better than seeing fewer patients well. If it's any comfort, most clinicians hate these time constraints and care restrictions as much as you do.
One way to get your medical needs better met is by understanding where providers are coming from; the pressures they feel, their motivations, and the context in which they work all contribute to their behavior when they see patients. Understanding medical culture can help you get what you want and need from the visit.
No one goes into medicine because they want to ignore and annoy patients. Yet sometimes it feels that way! Why?
Although clinicians and patients usually have the same overall goal -- the patient's best health -- they may have different priorities for a particular medical visit. As patients, we want our clinicians to be both smart and emotionally supportive; while both providers and patients value these sets of qualities, their opinions may differ on which is more important.
If you ask patients how they perceive their care, they tend to talk about human aspects of their experience: how they were treated, how long they had to wait, whether the staff were respectful. Ask providers the same question, and they tend to talk about technical quality: whether they ordered the right tests or prescribed the correct treatment. After seven or eight years of medical training, many doctors naturally focus more on the technical aspects of care -- the aspects that can save a patient's life -- even though the social aspects of care may determine whether a patient makes an appointment in the first place or returns for follow-up visits. It is often this priority mismatch, driven by time constraints, that makes communication in the exam room go awry.
The basic medical interview structure clinicians are trained in is termed "SOAP," for "Subjective," "Objective," "Assessment," and "Plan."
Almost all medical notes are written in the SOAP format, and so during most medical visits the clinician is following this outline in her head. So, if you have a rash you want to show the clinician, and she makes you wait until you are finished talking about all of your issues before she looks at it, it may be because she is not going to move to "O" (the physical examination) until she is finished with "S" (listening to you tell about your experience).
As the clinician moves through "S" and "O," she is thinking about "A" and "P" -- what might be causing the symptoms and what should be done about it. While you are telling your story, she is rapidly processing what you are telling her, putting it together with your history and with details like your age and sex, and narrowing down the list of possible explanations.
The first question she will consider is, "Is this a sign of something dangerous?" In order to answer that question, she may ask you some follow-up questions that don't seem relevant. For instance, if you come in with heartburn symptoms, the clinician might ask about your family history of heart disease; you may be confused -- "What does this have to do with heartburn?" -- but the clinician is ruling out angina, a symptom of heart disease that mimics the chest pain and pressure of heartburn.
Until the clinician is satisfied that this new symptom doesn't fit with any dangerous possibilities, she isn't likely to tell you much about that thinking process -- why scare you about possibilities that she only considered for two seconds and then rejected as unlikely? What you experience as a few odd questions that don't seem to have much to do with your chief complaint is usually the clinician going through a differential diagnosis thought process. Only when your provider is assured that your symptoms aren't a sign of something that is a risk to life or limb will she move to the next goal: figuring out what the symptom or problem does mean and what to do about it.
In the case of someone with an underlying serious illness like HIV, it will always make sense to your provider to focus on your HIV care during your time together. Any other issue might seem to the clinician like a distraction, unless it is clear that it is affecting your life significantly. The clinician will be assessing, "How big a deal is this issue?" For example, how much discomfort is it causing? Is it disabling or limiting your activities? Is it a problem that will just go away with no treatment? And, finally, what are you, the patient, looking for? Do you want treatment for the problem, or do you just want to know it's not going to kill you? Many health problems are self-limiting; that is, they go away by themselves without any specific treatment. Whether or not to apply time, money, and prescriptions to a problem depends on how much of an impact it is having on your life.
Of course, all of this is what we hope is going on in the clinician's mind. The truth is, when time is tight, often clinicians are stressed and don't listen well. One way for the clinician to deal with time constraints is to not "hear" you when you have a new complaint. This is what leads to situations like the scenario described previously with Mary and Dr. Lamb. Dr. Lamb has likely decided that the Mary's HIV is paramount and the back pain is a distraction. Mary's experience is almost the reverse. This is a recipe for frustration for Mary, whose problem goes unaddressed.
You can use your knowledge of medical culture to get what you need from your provider. Here are some things you can do to make sure your needs are met. You can probably add a few techniques of your own, based on your knowledge of your own particular care site.
Have your agenda for the visit clear before you go. For instance, if this is a "well visit" or routine check-up, your agenda might include hearing about your latest lab test results and understanding what they mean, or learning about ways to maintain good health. If this is a "sick visit," you may have a new symptom, such as a persistent cough or a rash, and learning what is causing it and how to fix it will be part of your agenda.
Usually, your questions will fit into one of these categories:
The clearer you are about your agenda, the more likely you are to feel satisfied with the visit.
Write down your questions. Don't skip this step! This is probably the single most important tool for getting your needs met. Just about everyone gets nervous or distracted in that brief 15-minute visit, and most of us forget things. A simple list of issues to be addressed will help keep you and your provider on track.
Tell the clinician your agenda early in the visit. Providers are almost always worried about time, and if you wait until the end of your fifteen minutes to bring up an issue, yours will be less likely to pay attention the way you want him to. Often it is the problem you are most anxious about that gets left until the end of the visit -- and that is just the problem that is going to worry you if it isn't discussed. So, it's even more important to put the scary or embarrassing questions on the table right at the beginning, and to be clear about what you need: "I'm worried about this rash and I need to know more about it before I leave today."
Use concrete examples when you are describing symptoms. This is especially important when you are talking about pain or fatigue. People use lots of different words to describe pain, so telling the clinician how the pain affects your life will give him a better idea of how serious the pain is. "My knee has been hurting" may not get the attention it deserves; better to give more detail: "My knee hurts so badly that I can't sleep and I can't climb stairs." Fatigue is another very common HIV-related symptom in which the words mean different things to different people. Instead of talking about being tired all the time, it can be more helpful to say, "Three days a week I don't even get out of bed" or "I can't concentrate through a whole TV show."
Bring a buddy with you. This is very useful, especially when you have new symptoms. Your friend or ally can come right into the exam room with you when you go to see the clinician. Most of the time clinicians will welcome this, but if he doesn't, remember that this is your right, and you can insist.
Your buddy can:
Who should your buddy be? Family members are probably most common, but they are not the only option. Many people recruit a friend to be their health care buddy. Think about someone whom you trust, who is smart, strong, and diplomatic, and has time to go with you. As always, issues of disclosure will be important to consider -- make sure your buddy knows your preferences if you want your HIV status and other health concerns kept private.
If you don't have a friend or family member that you would want as your appointment buddy, you can look for a peer health advocate, a volunteer or professional who has been trained to do the same things a buddy does in the clinician's office. Your local Office of AIDS or HIV/AIDS services organization will likely be able to help you find a peer advocate.
Give the clinician a heads-up. If you know you will be coming to a routine appointment with a new problem to discuss, or an aspect of your HIV you want to understand better, it can help to give the clinician some notice and let her adjust her ideas about the visit beforehand. E-mailing your clinician, if she has a confidential system in place, is one way to get her a message; another is to call the office and ask that a message be left for the clinician: "Mary says to tell you she needs some time to talk about a back pain problem when she sees you tomorrow." If you don't think of it before the visit, you might mention it to the medical assistant or intake nurse when you first come in or while they are taking your vital signs.
This is a good opportunity to call attention to something you have probably already realized, but which is worth emphasizing: the clinician is just one part of the team providing your health care. Other members of the team -- nurses, health educators, social workers, etc. -- can be your allies in navigating the health care system. They may be able to answer questions and help you get your needs met, and they often have more time than the clinician does. Make good use of these allies!
Following the advice presented here can help you get your basic medical needs met and feel less frustrated, but, especially for people with a chronic disease such as HIV, you can and should be looking for more. You are a critical member of your own health care team -- your clinician should be treating you that way. To get this kind of treatment, you may need to take some risks and step out of the traditional doctor-patient relationship.
There is a tradition of passivity and submission to authority in medical care that is not good for clinicians or patients. This dynamic is changing, but only slowly. (HIV patients, with their activism and involvement, have been leaders in this change.) Patients don't always know how far they can push for input or partnership and often are afraid (with reason) of angering the clinician by contradicting or disagreeing with him. As a result, they may settle for a dysfunctional interaction with their primary health care provider that they wouldn't be satisfied with if they were buying burgers at a fast food joint!
Fortunately, there are things you can do to improve the flow of communication with your provider and get more of what you want. You and your clinician may be working together for years, so it probably does make sense to invest in the relationship, just as you do with other important people in your life.
We often hear from patients things like, "My last doctor said something I didn't like and I am never going back to him." The doctor in question usually never hears about the problem, and so has no chance to improve. Just as with a good friend (or even a good hairdresser), if you give feedback about what works for you and what doesn't, the relationship will get better. If you pull the plug after every glitch, you will be starting over a lot.
Any relationship can benefit from attention to communication, feedback when something goes wrong, and periodic check-ins about whether the relationship is working and how it could be improved. It is not traditional, but believe it or not, if you feel that your provider is not listening to you the way you would like, you can actually talk to him about it. For instance, you might have a question on your list, and the clinician doesn't seem to be getting around to answering it. You can call this to the clinician's attention: "I know time is tight, and I'm worried we won't have time to get to this concern. Can we talk about this now?"
On a visit when you don't have a pressing physical problem, you could even decide that what you want to discuss is how you communicate with the clinician: "I've been your patient for three years, and I'd like to talk a little about how we work together. I like it when you show me my labs and let me take a copy with me. It's hard for me when you don't give me a minute at the beginning of the visit to tell you what's up with my health before we start talking about my viral load."
No one likes to be bashed, so it will help if you can approach this kind of discussion as a two-way street, not as an indictment. Have in mind one or two things you would like your clinician to do differently, and ask him if there's anything you could do to make things go better. And, if there are things your provider does that you are happy with, let him know!
You shouldn't have to tolerate a provider-patient relationship that isn't working for you. If your insurance allows you some flexibility and you decide to "fire" your clinician and find a new one who better meets your needs and preferences, it may be useful to consider the various types of medical providers that you may be able to see for your primary HIV care.
Different providers tend to be good at different things. One thing they all have in common is the authority to write prescriptions and orders for labwork and diagnostic imaging.
A doctor can be either an MD (Medical Doctor) or a DO (Doctor of Osteopathy). Both have years of training in disease diagnosis and treatment. They are very knowledgeable about medical complications and are able to handle a wide variety of common and rare medical problems. However, they may not always be very good at explaining your conditions to you, or at dealing with personal issues.
Also, among doctors, there are different specialties. Most HIV specialist doctors will have completed a residency (three or more years of post-medical school supervised practice) in either Family Medicine, General Internal Medicine, or a subspecialty of Internal Medicine like Infectious Diseases (ID). ID specialists have the most specialized training in infectious complications of HIV and typically would be less prepared to work with you on health issues not related to HIV.
Nurse practitioners (NPs) and physician assistants (PAs) are licensed to see their own group of patients, under the supervision of a doctor. NPs and PAs are capable of handling most of the common diagnoses that arise in their practices, and get advice from a supervising doctor when unusual or complex situations arise. They don't have as much training in the care of people who are seriously ill, but they are often better at explaining things than doctors are and they typically are better at focusing on preventive measures to help you stay healthy. NPs and PAs may also have more time to spend with each patient than doctors do.
Based on your circumstances (insurance coverage, location, etc.), you may have a choice of provider types. People sometimes prefer to see a "real" doctor, not an NP or PA. However, depending on your own situation, you may be happier with an NP or PA than with a busy MD or DO. Give some thought to who might be best able to answer your medical questions, and make your preferences known when you are scheduling appointments. (See the sidebar below for a checklist that can help guide your provider search.)
Whether you are starting from scratch or thinking of switching providers, it's a good idea to consider all the factors that might make a difference to you, and then look for someone who meets those criteria. You can use this list to help clarify what is important to you. Where and what kind of practice will feel safest and most convenient, and what kind of personality, background, and training will be the best match for what you want and need in your clinician?
My Ideal Provider
1. Office location: where do you want your doctor/provider to be?
2. What sort of setting would be best for you?
3. What provider type would be best for you: doctor or nurse practitioner/physician assistant (NP/PA)?
4. What type of approach are you looking for?
5. What kind of relationship do you want to have with your provider?
6. Similar to you, or different?
7. Special issues
One thing to keep in mind: HIV expertise is important. No matter what kind of clinician you choose, you are likely to do better if you see someone with extensive experience treating HIV disease and its complications. While there is not yet a formal medical specialty in HIV like oncology or cardiology, the American Academy of HIV Medicine (AAHIVM) and the HIV Medicine Association, among others, have established criteria for an "HIV Specialist" credential; to qualify, the clinician must have cared for a significant number of people with HIV and met a certain level of recent HIV education. Ask your clinician about her experience working with HIV positive people and whether she meets any of the definitions of HIV expertise.
Once you know what you are looking for, how do you find a good provider? Word of mouth is generally best; ask your other HIV care providers, AIDS service organizations, and friends you trust. You can also look online -- both the HIV Medicine Association and AAHIVM have searchable online directories that will give you a list of credentialed providers in your area (see sidebar below).
American Academy of HIV Medicine |
1705 DeSales Street NW, Suite 700
Washington, D.C. 20036
HIV Medicine Association
1300 Wilson Boulevard, Suite 300
Arlington, VA 22209
Mary goes back to see Dr. Lamb, and she brings her friend Bo with her. Right after she says hello, Mary tells Dr. Lamb, "I really need to talk with you today about my back pain. It is keeping me from sleeping and it is scaring me because I'm afraid it might be cancer." Dr. Lamb says, "OK, we'll come back to that in a minute," but he gets involved talking about Mary's medications and forgets. Halfway through the visit, when there are no signs of returning to the topic, Bo cuts in: "Don't forget she needs to talk about her back." Dr. Lamb apologizes, saying, "I'm sorry, I forgot. Unfortunately, we don't have enough time now." Bo says, "We have to make time; Mary won't sleep until we get this taken care of." They agree on a plan for an additional visit in two days just to talk about the back pain problem, and some temporary relief measures for the meantime.
Remember, you deserve to be in charge of your own health. Using the strategies described in this article can help you get your own agenda on the table, communicate better with your clinician, find the right provider for you, and help you get the most from your medical visits.
|How Providers Can Help|
If you are one of the many BETA readers who are themselves health care providers, you probably have your own advice and ideas about supporting patients in getting the greatest benefit from their health care visits. Here are a few of our suggestions about how we providers can meet patients halfway:
Kathleen Clanon, M.D., F.S.A.P., is an HIV specialist working in a busy urban clinic.
Nancy Halloran, M.P.H., has worked as an activist, administrator and consultant in the field of HIV since 1984.
Want to read more articles in the Winter/Spring 2009 issue of BETA? Click here.