Advice from a LE therapist
This is from the NLN newsletter, I found it interesting--it's advice for LE therapists on how to handle the first patient visit. It does say that the relationship between patient and LE therapist will be a long lasting one--unfortunately, insurance doesn't see it that way.
"Pressure" Gradient
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.
Comments
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Thanks for sharing this, Kira!
Dawn
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Did the author give permission for repost? Just curious.
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Coolbreeze, it came in an email, not a copyrighted newsletter, and there were no caveats on the email, which could be forwarded at will. So, maybe this is copyright infringement, but I figure I forwarded it to the forum.
Kira
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I think the advice to other LE therapists is thoughtful and excellent. I wholeheartedly agree that it is important for the LTx to take into consideration "where" the patient is with respect to their LE (or risk of developing LTx). I suspect that therapists do this, and the fear of providing TMI explains some of the variance that we have experienced in how our LE is treated.
That said, I think it is a bit paternalist and, potentially, fraught with problems. It opens up the possibility that the LTx will incorrectly judge what the patient is "ready" to learn. Furthermore, even if the LTx is correct and a patient isn't "ready" or doesn't "need" certain things, not mentioning these things is problematic. LE evolves over time, so what isn't relevant now may be relevant in the future. If the goal is for self-management, how is the LE patient (or at risk patient) supposed to self manage if s/he does not know what the possibilities are or when to seek professional care? It seems to me that a crucial part of the initial visit has to be laying out all of the options, because for some people the initial "evaluation" visit may be the only visit. Different forms of treatment are more effective for some people than others. In introducing the different treatment options, the LTx has the opportunity to say just that - that if one treatment (or management) modality doesn't work, there are others that may. What a positive thing to tell a patient!
Another thing that I think is critical (and empowering) in the first visit or two is simply asking the patient what his/her goals and self-perceived needs are (as is commonly done in "regular" OT and PT). On a related note, I think it is important for LTX to recognize that different people may find different types of treatment more or less onerous. For some people nighttime bandaging might be a "over my dead body" thing, whereas for others, it might be acceptable if it meant better control or that one could go garment-less during the day, at least occasionally.
Has NLN or any similar "official" organization for LTx ever asked experienced LE patients what advice they would give LTx? - KS1
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KS1--As Binney has lamented, the NLN is unfortunately, not patient oriented. Patients are not welcome at their conferences--they allow a handful of "LSAP" patients, who are told never to ask personal questions of the presenters, and their position papers are often difficult for the average layperson to understand.
Binney has worked really hard to gently get the NLN to understand that with no patients on the board and no patient in-put, an a website that isn't really patient centered, they are not "patient friendly".
Binney did help co-author a book for the NLN: 100 questions, so some patient perspective sneaks through.
It would be wonderful if they did query patients to find what we perceive we need, especially us "veterans" who remember the initial visits.
The NLN is a great organization, but it would be great if they could figure out a way to integrate patients into their organization and web site more.
I agree about the paternalistic attitude, and the belief that patients will have a long relationship with the therapist--it's not realistic.
The therapists that I tend to refer to are not great with teaching bandaging, and I harp on them all the time. I'm not sure why--labor intensive? perceived as something patients won't do?
The best therapist near by can't take insurance--she's an LMT--but she spends whole sessions on bandaging and MLD. And will see patients as long as they need to be seen.
Kira
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Thank you so much for the information. My initial visit with PT is tomorrow morning and I have been very apprehensive about it. My OC made the referral due to prolonged, uncomfortable, tightening around my shoulder on the right side where it was necessary for the surgeon to remove all three levels of lymph nodes with the breast. About 1 to 1/2 inch of hair line of my underarm is now in the center of the right chest. Ha Ha, guess you'd have to see it to appreciate it. Please, no matter what comes, or how sick the treatments, how badly the radiation burns are, retain that part of yourself that can see the humor and delight that despite all that's been thrown our way. WE ARE STILL HERE. Much love and appreciation to all.
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