Kidney Failure Treatments: Guarantee Patients a REAL Choice

For the next 2 weeks, the kidney community has a chance to offer public comments on the proposed rule for the End-Stage Renal Disease (ESRD) Prospective Payment System, Payment for Renal Dialysis Services Furnished to Individuals with Acute Kidney Injury, End-Stage Renal Disease Quality Incentive Program, and End-Stage Renal Disease Treatment Choices Model, Docket Number CMS–2025–0240–0002. Why does this matter?

Patients Deserve Choices

Have you ever been given a diagnosis where all of the life-saving treatments look bad and could permanently reduce your quality of life? Each year, more than 130,000 Americans face kidney failure and need to choose a treatment option. And, each year, about 60% of them crash into dialysis emergently. While I am unaware of research into the reasons for crash starts, I suspect that a major reason is fear:

• The unknown is scary (and the word die-alysis doesn’t help)

• The known (i.e., a loved one who had a difficult time on dialysis) can be even scarier

• The need to fit a complex, time-consuming treatment into the day threatens autonomy

• The debilitation that affects many threatens relationships, mental health, and the chance for a transplant

• The loss of a job threatens poverty, loss of a home, sending kids to college…

There are SEVEN ways to do dialysis (each with a different life impact)—plus transplant and active medical management—yet all too often, patients are given only a binary choice of hemodialysis (HD; generally in-center) and peritoneal dialysis (PD). And, while each of us has our own set of core values, identifying these and matching them to treatment choices is rarely considered. Instead, for decades, the critical choice of which treatment will best support what matters most to patients has been “guided” by modality-first approaches like “Do you want HD or PD?” (Neither!). We can do better!

Let’s CHANGE the Choice Paradigm

What if instead of a modality-first approach, we ensured that able patients were offered an evidence-based decision aid/treatment matcher that included ALL of the treatment options—and matched them to values?

• What if the tool was written at a 5^th grade reading level, because people are scared?

• What if it offered vital HOPE—in English and Spanish?

• What if it had an illustrated, pop-up glossary so patients can learn more?

• What if it created a one-page summary of what matters to patients and which treatment(s) looked best?

• What if it served as a shared decision-making tool for clinicians and patients?

• What if it took just 15 minutes to complete—and cost nothing?

Spoiler: MEI built this decision aid. Check it out!

Please Echo Our CMS Comments!

In 2007, the Medicare Conditions for Coverage for Dialysis Facilities were updated for the first time in 28 years, creating an opportunity to address one of the biggest barriers to home dialysis:  allowing clinics to tell patients about only the treatment options they offered.  As a small non-profit, MEI didn’t (and still doesn’t) have the bandwidth to add this patient right on our own.  So, we wrote up detailed, referenced comments and shared them as a Word document with as many kidney organizations as we could think of, inviting them to echo our comments and use as much of them as they desired.  

This strategy worked!  So, we’d like to try it again to get to the next essential step in ensuring patient access to home therapies:  an outcomes measure to compare patients’ preferred options (per a completed, evidence-based decision aid) to the treatment they initiate.  We suggest using MEI’s free My Kidney Life Plan, which is the only U.S. evidence-based decision aid that includes ALL of the ESRD treatment options and maps them onto key patient values.

Submitting YOUR comments is important if you are a:

• Person with chronic kidney disease or a loved one

• Kidney advocacy organization

• Clinician who cares about your patients well-being

• Manufacturer or distributor of home dialysis equipment or supplies

• Dialysis provider

• Transplant program

• Palliative care or hospice program

Below, you will find our comments. Cut and paste as much of the document as you like and edit it as you see fit. Submit your comments here by August 29.  We are stronger together!

Download the Word document [MEI Comment – 2025 ESRD-PPS]