Regression to the Mean

John Fuller Beckwith5/6/2024

I am afraid lymphedema treatment seems to be reverting back to some squishy sort of average, barely adequate intervention which presents itself as the common standard of care, but is really just a bland mediocrity. This regression is diverging from the high standard that seemed commonplace before 2010 or so. An experienced and observant OT colleague of mine has several times remarked that she thinks lymphedema therapy is falling all the way back to what it was before CDT came to the US, before 1990. Which appropriately raises the questions, what was lymphedema treatment over 30 years ago?

Before 1990 the standard of lymphedema treatment in rehab incorporated retrograde massage (do they still teach that in OT and PT school? why?) and single limb pneumatic pumps that were typically set to fairly high pressures, and then circular knit compression garments. Honestly, if that was such a good way to treat lymphedema, wouldn’t we still be doing it? Wouldn’t patients be asking those of us who provide CDT to offer that approach? Yet, patients never ask that question.

Then CDT was brought over from Europe and the opposite happened actually – patients got a taste of CDT and clamored for it. Clamored so much they demanded their PCPs find a therapist trained in CDT. Clamored so much clinics were forced to get a CLT on staff. Clamored so much the good clinics that offered CDT were overwhelmed with referrals. But the CDT paradigm was different than the old model. Treatment was daily (actually, when the Lerner Clinic was first providing CDT in the US in NYC, it was true to the German model of twice daily for 6 days per week – and the results were amazing. How do I know that? I was told that by patients who were treated at the Lerner clinic in the early ‘90s), treatments were up to 2 hours long and patients had to wear their bandages all day every day until the next treatment.

Patients saw the results and knew the difference. The spread of CDT around the US was actually driven from the bottom up by the patients themselves. More power to them! Yet as it spread over the ‘90s and early 2000s, there has also been this change in health care generally in which corporate, business-minded philosophy has pushed health-care to be more profit-minded and less about optimal service provision. We see this in lymphedema with the clinics directed by profit-focused management altering CDT so that it more fits the model of one-size-fits-all outpatient therapy: minimize the frequency of visits, focus on teaching the patient to treat themselves. But also bringing in pneumatic pumps (to attempt to make up for what is lost by not treating in the clinic at the right frequency).

My personal experience reflects this sad trend. Earlier in my career, when rehab managers still focused on quality of care, I was allowed to treat patients in the CDT model, 5 days per week and 1-2 hours per visit). My managers at the two hospitals at which I worked were compassionate and supportive. I was productive enough to sustain the service and also provide a high standard of care. We developed year-long waiting lists. When I came to Oregon, my management was more harsh and demanding, I was forced to compromise delivery of care and they eventually told me I would be forced to see patients 2 x week for an hour max. I resigned rather than provide care that I knew was not fair to the patients.

So we see this very disheartening trend in which a brilliant and highly effective treatment was brought to the US, spread by virtue of inherent quality and patient demand, but then weakened and diluted such that many patients in the US haven’t even been exposed to good lymphedema therapy. This is the lymphedema version of ‘regression to the mean.’ Backslidng from an effective and doable high standard of care to some sort of low squishy average, the blandness of mediocrity attempting to masquerade as a high standard. And I do think my OT colleague is correct, it is a reversion to the old rehab model of lymphedema therapy.

We need to create, promote and sustain a culture of excellent lymphedema care within our profession. To do that we need to resist and counteract the forces that are pulling us toward mediocrity. This essay is meant to say out loud what many say in private and perhaps can lead to an open discussion about confronting this trend.