by: April Linette Leaman
Medical student at Emory University, School of Medicine in Atlanta, GA.
April has EDS type IV.
Reprinted from Loose Connections Volume XI, Number 2 1996


W.H. Auden, the English poet, once wrote this, describing his ideal physician:
Give me a doctor partridge-plump,
Short in the leg and broad in the rump,
An endomorph with gentle hands
Who'll never make absurd demands
That I abandon all my vices
Nor pull a long face in crisis
But with a twinkle in his eyes
Will tell me that I have to die.

Today, however, our ideas are changing. The traditional concept of the doctor-patient relationship placed the patient in a passive, compliant role. Today's relationship has (hopefully) evolved into a mutualistic, almost symbiotic relationship. As we take a closer look at these trends and how they developed, as well as how to cultivate a more satisfying partnership with your own doctors, take a moment to look and see if you find a bit of yourself in some of the situations, crossroads, impasses, and bridges. I know I did.

A Little History

Parsons introduced the concept of the "sick role", a model of ideal patient behavior, in 1951. He believed that certain privileges were granted to sick people, simply because they were ill: among them exemption from normal social responsibilities (job, etc.) and exemption from responsibility for their own health. These same patients also had some obligations, however: motivation to get well, seek competent help, trust the doctor, and comply with the treatment regimen. This view puts the patient in a dependent role, placing his health and well-being in the hands of the physician. This view also grants the doctor autonomy and dominance. His role is to identify illness, establish treatment priorities, and to take the initiative in health status evaluation and health problem control.

Many factors contributed to the propagation of this relationship pattern, keeping the balance of power heavily tilted toward the physician. One of these factors was the intelligence and education factor; doctors have gone through many grueling years of study and training, while many patients do not have even the minimal scientific background to understand the pathophysiology of their illness. They may lack a high school diploma, or hold a master's degree in medieval history, but the result is the same. Because of this knowledge gap, many patients do not understand the complex medical terminology that doctors use on a regular basis, and they get too intimidated to ask for explanations.

Another factor was the perceived social status gap between doctor and patient. Often physicians were seen to be members of a higher social class, on a par with lawyers, judges, and other extremely learned professionals. This imagined social gap further intimidated patients, making them less likely to be aggressive and less likely to ask questions.

A third contributing factor was the respective attitudes of the physician and patient toward the relationship and actual consultation. Physicians, because of their extensive education and training, may mistakenly think that they know their patients' needs and wants without asking. The patients, on the other hand, may see the doctor as a "superman", all-knowing and all-powerful, because of those same years of education. They assume that the doctor will know what they need without telling him. It is also easy for them to let someone else take responsibility for their health care issues, especially if something doesn’t work out quite right ("It’s not my fault – the doctor told me to do that!").

In 1956, Szasz and Hollander formulated a three-pronged alternative to Parsons’ concept of the sick role. This new philosophy was based on the degree of control of each participant in the relationship: activity-passivity, guidance-cooperation, and mutual participation models. An example of the first model is a comatose patient; he is by definition completely helpless and passive, while the doctor takes an authoritative role. An example of the second model is a patient with an acute illness, for instance a broken leg. The patient is able to take an active role in the relationship by cooperating with the treatment regimen, using his crutches as necessary and doing his physical therapy. In the third model, the doctor helps the patient help himself. Szasz and Hollander noted that this model might be most appropriate for people with chronic disease.

Mutually beneficial interaction between doctor and patient is essential in chronic disease management (as many of us well know). These patients present with different and more frequent problems and challenges then do acute care patients. The emphasis in chronic care is not so much problem solving as it is problem defining and managing.

So, how can you, as a chronic care patient with Ehlers-Danlos Syndrome, obtain the best possible care? You need to work with your doctor (remember that third model-mutual participation), and any other health care providers (physician’s assistants [P.A.’s], nurses, etc.), as a team. Many chronically ill people see their doctors as the enemy, someone they have to badger and bully to get the care, medications, and therapies they need. This attitude only puts the doctor on the defensive, causing him to distance himself from you, the patient. This, in turn, causes you to pester him more, creating an endless circle in which neither participant is happy with the quality of care delivered. Both sides need to work at the relationship, but this article will merely address what you, as the patient, can do to facilitate communication.

Successful interaction with your physicians actually requires effort during three periods: before the visit, during the visit, and after the visit.

Before You Go

There are a few things you can do beforehand, or bring with you to the doctor’s office, that will make your life easier and help your doctor to deliver better care. The first three, once made up, can be added to or changed only when necessary. The fourth and fifth can be done for each office visit.

1. Make up a brief (one page) medical history. This is especially important if you are seeing a new doctor, or are a member of an HMO or military organization in which you don’t always see the same physician. It will help the doctor review your health history at a glance without having to read a thick chart. This should include major illnesses (chicken pox, measles, etc.), surgeries and hospitalizations (with approximate dates if possible), chronic problems (hypertension, arthritis, etc.), and all medications (prescription or over-the-counter).

2. Make up (or get from a library, local hospital, EDNF, etc.) a brief (one page) explanation of Ehlers-Danlos Syndrome and your type (if you know what it is). This will refresh your doctor’s memory about EDS and how it affects you.

3. Make a list of all your doctors, their specialties, and their phone numbers. This will make communication among them much easier, and save you headaches ("Well, my pediatrician could be Joe Brown or John Brown, I can’t quite remember...").

4. Make a short list before each office visit of the concerns you want to talk to the doctor about. Also, think about whether you have any suggestions for treatment, maybe tricks you heard about from another EDS patient that worked for her. "Selective amnesia" is a well-known phenomenon during office visits. During a consultation for back pain, you may completely forget that you wanted to ask about getting ring splints, for instance. It helps to write things down, especially if they’re not the primary reason for the visit. Making a habit of this will save you lots of frustration later.

5. Bring any relevant articles if you have them (from Loose Connections, for instance). Often, if you want to keep the original, they will photocopy it right there in the office for you.

While You’re There

Once you actually start talking to the physician, there are several things that will help you communicate your needs better:

1. First things first: tell the doctor why you came, and how you hope he can help. Don’t wait until the end of the visit to broach important topics, even if they are uncomfortable to talk about.

2. Tell the physician EVERYTHING. Don’t leave out things you might think are unimportant-let him be the judge of that.

3. Be as clear and descriptive as you can about your symptoms and concerns. If you have ideas about causes or possible treatments, don’t be afraid to mention them. A medication or therapy that worked for someone else may not have occurred to your doctor to try with you.

4. If the doctor doesn’t seem to understand your problem or concern, clarify it for him. He can’t help if he doesn’t understand.

5. Ask questions! This is your health we’re talking about here!

6. Try not to get confrontational or defensive. Doctors have bad days too.

7. Before you leave, sum up your understanding of the visit and the treatment regimen. Make sure both of you are clear about medication or therapy prescribed, and when your next visit should be.

After You Leave

1. If you have another question, call.

2. Don’t ignore the rest of the health care team - PA’s, nurses, etc. Often they will have more time to discuss your concerns with you over the phone.

3. If the treatment is experimental or new for you, let the doctor know if it seems to work or not. If it is working, he needs to know. If it’s not working, he needs to know so that he can change it.

These suggestions should help you to communicate better and more clearly with your health care team, and help you to take an active role in decision making about your health. It goes without saying that you should do what you can to educate yourself about EDS and other health problems you may have; it will help you make more informed decisions and make you an active partner in your patient-doctor relationship. Being as open and honest as you can with your physician is a good habit to make; trust needs to go both ways in this very important partnership. Good luck and I wish you all the best of health.

References:

 Schwartz, Ira, MD, MPH, interview.