by Jeannette Zucker, DPT, CLT-LANA
One of the most important things that takes place during a patient's initial visit with a lymphedema therapist is patient education. This is usually the time when patients first discover the information that they have so long been searching for. They are so happy to finally understand what is going on with their bodies, why they no longer have their normal profiles or well-shaped limbs. However, they are also usually disappointed at some point during this meeting to hear that the required treatment doesn't have an exact end. That is lymphedema is a condition that requires ongoing management.
When patients learn that lymphedema is a chronic condition, there are so many different thoughts that run through their minds. There are more questions than anything else and the most common reaction I have observed as a therapist is the overall sense of feeling overwhelmed. Patients try to make sense of why it is necessary to make permanent and significant lifestyle changes. What about exercise? Air travel? Massage how often? Compression therapy round-the-clock? Higher risk for infection? No cure?
Patients need time to digest the information they receive, and how much time depends on various things. One consideration is how much knowledge a patient has prior to the evaluation. Some patients come to their first appointment with no expectations reporting that their doctor simply ordered the therapy for them. In this case, the shock factor may be profound. Other patients may have already been introduced to the concept of lymphedema therapy from their physician, other healthcare professionals, or patients who share the same experience. It is not uncommon for these patients to arrive hoping that the therapist will tell them that what they heard is "not true". And on the other hand, some patients are quite familiar with what therapy entails and come prepared to at least give lymphedema therapy a chance to prove its worth.
More than anything else, I would say function and how it has been affected by lymphedema determines how patients take in the information regarding the necessary treatment. Many patients actually are not even bothered by how swelling has changed the way they look, except perhaps patients who have head and neck lymphedema. Even then it is function that is of greatest concern. The more that patients feel that function is decreased because of swelling the more prepared patients seem to be to make a change and work towards achieving their prior functional status. Among other things, this includes a demanding program of meticulous skin care, daily manual lymphatic drainage, daily night-time bandaging, daily daytime compression garments, and daily exercise.
Other things that determine how patients absorb the information include the severity of their swelling, how much social support is available, prognosis related to disease (if present), body image and self-esteem, as well as cultural background. I believe all of the above need to be taken into consideration in order to understand why and how each patient responds the way they do.
Patients should be allowed to express themselves fully, in their unique ways, and without judgment. When it becomes apparent that a patient is angry, it might be best that the session shift from education to establishing an action plan. Patients who appear depressed may be inspired by some passive manual therapy to demonstrate that positive changes are possible even in just a few minutes. Those who are ambitious and eager to take charge will benefit from immediately being provided with tools to manage lymphedema on their own.
Regardless of what the patients' reactions may be, what therapists need to consider is that how this first meeting unfolds will mold the patients' response to therapy. This will in turn influence compliance and also set the stage for what is probably the longest relationship a patient dealing with lymphedema will have with any healthcare professional. And just like the beginning of any relationship, first impressions are everything.
In order for the relationship to be healthy, the therapist must be flexible and gauge how much information the patient can handle. Therapists need to read the patient, pay attention to not only what is being said but also observe nonverbal communication, and try to gain a true understanding of how the patient is reacting to the information. This is because essentially patients are getting pressure to do things that they are not necessarily prepared to do.
So by adjusting to match and balance out a patient's particular style, therapists will be able to more successfully encourage patients to accept what is being asked of them. That is patients will be more likely to commit to a new way of living that maximizes function as well as appearances. Ultimately it is about providing truly individualized care, beyond just mechanical aspects of the therapy, so that patients can experience the highest possible quality of life.