What is the, “Real World,” of Lymphedema Therapy?

John Fuller Beckwith3/14/2024

"We should be teaching the students the real world of lymphedema therapy. What they are learning here is not the way it is out in the clinics. This is ideal and unrealistic.”

This is a fair summary of what was said to me a number of years ago when I arrived in Chicago to teach a CDT class. I remember feeling a little taken aback. The person saying it was a therapist/CLT, local to that city and a previous graduate of the same training program. She had taken the course a few years earlier and then used the skills in the clinic, or, as she termed it, the “real world.”

Presumably what she meant to point out was that in the current healthcare environment, what with insurance pressures, productivity pressures, reimbursement issues and the tight scheduling in therapy clinics, the way CDT students are taught to deliver care simply can’t be done, its unrealistic. My concern at that moment was that she was to assist with the instruction and would be talking to the students throughout the day, giving a message contrary to what I would say and what the course was teaching.

Surveying the state of lymphedema therapy in the US today, one would have to think she may have been right. Perhaps she is the realist here and those of us who believe in the CDT paradigm as taught in the courses are living in a fantasy world. Currently many clinics are providing care at a lower frequency and with less hands-on intervention by the therapist. Many do not provide for their patients all the modalities taught in the full CDT course. Essentially, in many if not most clinics, lymphedema therapy is provided in the same paradigm as more typical therapies – once or twice per week, 30-45 minutes, focus is on teaching the patient to treat themselves. Maybe that’s the point, provide the therapy like all other therapies because it is too much trouble to adapt to this new paradigm.

However, let’s accept that CDT as constituted and taught in the training course is designed to be the best approach. Well, then, what are the effects of this ,’real world,’ distortion of a well- designed treatment? Of course, for those who have been through full CDT classes, this so- called ‘real world’ paradigm is not how treatment should look. In fact it doesn’t even meet the definition of CDT. The description of CDT is specific: delivery of the interventions is very comprehensive, daily and must include the core modalities each day. For this chronic disease, interventions are clearly divided into two very distinct phases with the first, intensive phase in the clinic and the second, later phase independently performed by the patient at home. In the first, intensive phase, the treatment is meant to be intensive. The therapist is to personally deliver the modalities of MLD and compression bandaging. These take time, especially if the therapist is trying to be comprehensive. We could directly ask patients, but its probably fair to assume the patient would like the therapist to be comprehensive rather than diluted or piecemeal. Not only is the therapist to provide the MLD, but the MLD should be the full sequence including preliminary work on the central lymphatic system before addressing the congested peripheral lymphatic territory. A full CDT session including MLD and compression bandage application by the therapist usually takes more than one hour. So already we are exceeding the rules of the normal outpatient paradigm because each session is well beyond 30 or even 45 minutes. But also, we then see the patient 5 days per week. Why is this? Because then MLD is applied 5 time per week, but also importantly there is daily re-application of the custom compression bandage. This daily bandage application is not only to newly apply the bandage to the now smaller limb, but also allows the therapist to leverage their experience and training to skillfully modify the bandage to get even more benefit from the compression. To, as Steve Norton says, “sculpt the limb.” Sculpting the limb is not hyperbole, it is actually what the therapist does by skillfully making thoughtful and individualized modifications in the bandage, helping to reduce the effects of lymphedema as much as possible in all parts of the limb.

Let’s then revisit the question: what is the real world of lymphedema care? We have two contrasting approaches to care, one faithful to CDT as designed, the other really just a facade of the full treatment, an impostor pretending to be quality lymphedema treatment. In the real world, patients get the best results with the full CDT paradigm, but get only partial results from the partial CDT paradigm. In the real world, the disease of lymphedema responds best to intensive treatment delivered by the skilled practitioner, performed daily. In the real world patients treated the partial way don’t get as good results because there is not the skilled modification and application of MLD and bandaging. And sadly, many patients receiving impostor therapy don’t even know they are not receiving quality care.

Here is some perspective from the real world of lymphedema therapy. In my town CDT is provided across a range of formats, from only teaching the patient to self-bandage and do self- MLD, to just ordering garments (don’t get me started on the illogic of ordering a stocking or sleeve for lymphedema not yet reduced) and performing just MLD with no end in sight of the visits to the clinic, to partial treatments with some bandaging and no MLD. Then there is my clinic where we endeavor to see as many patients five days per week as possible and the standard treatment is scheduled at 90 minutes, the therapist does all of the bandaging and the MLD during the intensive phase. Many times, when seeing a patient for the first time in the clinic, I have been implored not to make them bandage themselves like the previous clinic did – meaning they are not against wearing the compression bandage, they just want the therapist to apply the bandage. While patients say they can see benefits to self-MLD, they say the therapist- applied MLD is always more effective. I have had patients tear up when they have seen better results in one or two weeks than they had in five years of various therapies, realizing there was no need to suffer as they had. This is not magic, it is the real world. We are not perfect in our clinic but we do our best. It is not difficult, the plan is already laid out for us. We only have to follow it.

So we have this very real contrast between how CDT is designed and should be administered to the patient, and this unfortunate and unnecessary occurrence in which many clinics simply don’t come close to providing actual CDT. What they provide is not comprehensive so it can’t be termed Complete Decongestive Therapy because it is not complete, it is actually incomplete therapy. A real world discussion would ask why these clinics perform therapy in this diluted way. Couldn’t they simply do it the way it is designed? Of course they could! But when their primary goal is to maximize revenue, then in terms of treatment planning the goal is to fill the schedule. When all patients are seen for 45 minutes once or twice per week, it is easier to schedule and fill the slots. If some patients have longer appointments and need daily treatments it is harder to fill all the slots. If single appointment times are longer and more often per week, then if a patient cancels it is a bigger gap to fill (that is the real issue!). Then revenue declines. The other argument is that insurances pay better for shorter treatments. This may be so, but then some attention to how to bill can improve that.

When the primary goal is to provide the best care for the patient, then we start with scheduling treatments to achieve this goal. And work on filling the schedule as the next goal. Can we all agree that in the real world our patients deserve the best care we can provide?