Do We Settle for Adequate Dialysis, or Push for Optimal Dialysis?

It’s (Past) Time To Destroy The Dialysis Business Model

This blog post was made by Mel Hodge on September 10th, 2015.

It’s (Past) Time to Destroy the Dialysis Business Model

At a late afternoon appointment in June with my wife Jane’s nephrologist, we described our planned trip to Hawaii the following week with our family to celebrate our 50th wedding anniversary. Jane’s blood pressure was very high, and she had been quite sick, but she had been looking forward to the trip. Her doctor looked at Jane for a long moment and then said, “I’m sorry, but you can’t go. We are going to have to get you started on dialysis.” Jane and I were stunned and could say nothing. We both had known, of course, this day would come—just like we knew we would someday die —but had suppressed it in our minds for more than 10 years as Jane’s kidneys had slowly deteriorated.

He broke the silence and began to describe the options and preparations, but it was all a haze. Neither of us understood any of it. I finally said, “If it were you, what would you do? He answered, “My partners and I actually discuss that among ourselves. If it were me, I would do hemodialysis overnight at home six nights per week—nocturnal dialysis, it’s called.” I looked at Jane and could tell she could not answer, so I said, “Okay, that’s what we’ll do.” I had no idea what I was talking about.

I used to wonder how the breast cancer folks could get every player in the National Football League to wear something pink on a given Sunday in the fall: pink socks, pink gloves, or whatever, to rally millions of fans to support breast cancer research. Why was there nothing even remotely similar on behalf of patients whose kidneys have failed and have an even grimmer survival outlook? I don’t even know what color might be symbolic of kidney disease. I put the answer down to the fact that kidney disease is a huge for-profit industry: dialysis services companies, machine manufactures, for-kidney disease drug manufacturers, and even some nephrologist-owned for-profit dialysis centers.

The whole structure was built on a single business model: in-center kidney dialysis treatment for 3-4 hours three times per week; a model still intact for 90% of all dialysis patients and still accepted as the “standard of care” by most nephrologists. Sometimes referred to as “minimally adequate,” this model undergirds the dialysis services, machine and drug industries, and has created many highly regarded growth companies. Warren Buffett, widely regarded as the most successful investor in America, has a substantial position in one of the major dialysis services firms.

I believed (and still believe) all of this to be true—except that this explanation does not offer an answer for patients with end-stage renal disease. My attempt to draw a breast cancer analogy with kidney failure has two serious flaws. The first is that the answer for ESRD patients does not need to await more research.Yet, have you ever noticed that nine out of ten papers in the nephrology literature end with some variant of the statement, “More research is needed”?

Do you remember the old saying, “Do as I say, not as I do?” It must be part of the received wisdom during nephrology training: nephrologists prescribe standard in-center hemodialysis for 90% of their dialysis patients. But when asked what they would do if their own kidneys failed, only 6% of nephrologists would choose that option.

Why the near total disconnect? This is not some just-published revelation. It is the knowledge—known for decades and repeatedly confirmed—that time is the single most important determinant of dialysis efficacy—treatment length and treatment frequency.

One of the best books of 2015 is Simple Rules by Donald Sull (MIT) and Kathleen Eisenhart (Stanford). They demonstrate through rigorous research how the overwhelming complexity of the modern world can be managed through simple rules. One simple rule they describe is how to diagnose children with serious infections. These infections are rare, occurring in less than 1% of children, but account for 20% of childhood deaths. The challenge is to assure that primary care physicians don’t miss one in a 20-minute encounter. A European research team boiled 1,860 studies down to just four highly reliable signals: convulsions, reduced consciousness, rapid breathing, and slow capillary refill.

Thirteen years ago Belding Scribner, among the most respected nephrologists in dialysis history, and his colleague, Dimitrius Oreopoulos, defined dialysis efficacy with a simple rule for comparing dialysis treatments: the Hemodialysis Product or HDP. The HDP is calculated by multiplying a single treatment time by the number of treatments per week squared. The higher the HDP, the better the treatment. HDP is simple, but not simplistic; it effectively summarized their experience and most dialysis research before 2002 and anticipated much that would follow.

For example, dialyzing every other day instead of thrice weekly would eliminate a day when deaths are known to double compared to single “off days”—and HDP goes from 27 to 37. Increasing treatment time and frequency more can reduce, and (with enough time), even eliminate the rotten, wiped out post-dialysis feeling, diet restrictions, need for phosphate binders, multiple blood pressure pills, risks of cardiac stunning, middle molecule buildup, and more. In short, more is better—and the HDP estimates how much better any dialysis schedule might be. Increase conventional in-center dialysis from 3 to 4 hours and the HDP goes from 27 to 36. Three hours per day for five days per week? 75. If you go to 8 hours each night for six nights each week, you get an HDP of 288! Remember, this is about your life about your life—pick a number…

The Scribner and Oreopoulos HDP is an empirical rule, not a fundamental law of nature, but you get the idea. More is better, and a lot more is a lot better! The path to feeling well and living long as a dialysis patient is clear, and it must make nephrologists uncomfortable to admit they would use longer, more frequent dialysis for themselves—but not prescribe it for their patients.

Why would it make nephrologists uncomfortable to make this admission?  It is not just that they are aware that survival of American dialysis patients is the worst in the developed world. It is because once they admit that session length and frequency are the crucial variables, they must admit that the standard in-center dialysis model is broken, because it implicitly assumes dialysis treatment time and frequency are constants—not variables—in the survival and well being equation.

When they say it’s not about money, it is about money. In the United States, about 2% of Medicare patients are on dialysis, but they consume almost 8% of the Medicare budget. Government pressure on dialysis providers is relentless and is already driving many non-profit providers (including hospital-based who have union contracts, and thus higher wages) out of business. There is simply no way for-profit providers or the government can acknowledge clinical arguments that treatment times need to be longer and treatments more frequent without initiating destruction of the present business model. But, business models are destroyed every day and the time has come to destroy this one.

Changing the U.S. dialysis paradigm may seem like an impossible goal, but I believe it can be achieved if each party, nephrologists, dialysis providers, government and ESRD patients, does what they can do best.First, nephrologists must take out their pads and start writing prescriptions for their ESRD patients for optimum dialysis (I didn’t say “adequate.” We don’t talk about “adequate” breast cancer therapy) based on currently available evidence and technology, including treatment time and frequency. Nephrologists are the one of the four parties who can reasonably be expected to have command of this knowledge and have a professional, ethical and legal responsibility to fully employ it in each of their patients behalf to give them the highest quality and longest life this knowledge can provide; no different than an oncologist’s responsibility to his breast cancer patient… and no less.

But, there is a second crucial difference (and flaw in my analogy) between a breast cancer patient and a kidney failure patient. At diagnosis, a breast cancer patient feels well, despite a potentially grim future. But when kidney disease progresses to the point when discussion about the elephant in the room—dialysis—can no longer be postponed, most patients are already very sick. Both are scared, but the breast cancer patient may be able to enter into a level of rational discussion with her oncologist about the tradeoffs between surgery, radiation, and chemotherapy. To attribute a similar capacity for rational choice to a sick Stage 5 chronic kidney disease patient is simply wrong. Any discussion of standard in-center dialysis, every other day dialysis, peritoneal dialysis, short daily dialysis, nocturnal dialysis, live donor transplant, cadaveric transplant and the various permutations and combinations is just a blur. And, add to this that some of these therapies, including some of the best ones, require a sick patient (and partner) to commit to assuming the burden for care delivery at home! Expecting rational choice in this circumstance is ludicrous…and one result is that nine out of ten patients simply default to standard in-center hemodialysis—arguably, the worst choice. It is up to any responsible nephrologist to take what he knows that would guide his personal choice in the same clinical circumstance, integrate that knowledge with relevant patient-specific factors, lead his patient (and partner) to the most rational decision and write that prescription.

Dialysis providers may initially try to accommodate longer, more frequent prescriptions by schedule juggling, but as the number of prescriptions for longer and more frequent treatments increases, other strategies (beyond trying to dissuade nephrologists) will be required. These big, for-profit providers are managed by very smart people. They are quite aware that to remain profitable, the only available option to provide extended dialysis for more than a few is to successfully switch people to home care. No businessman likes to obsolete his own investment, but it happens sooner or later in most industries. The only real question is whether you do it to yourself or watch somebody else do it to you As a dialysis provider, will you honor the dialysis prescription you receive—or will it be honored by a more far-sighted competitor? (I drove by an abandoned video rental store just yesterday).  And remember, increasing treatment times and frequencies will ultimately translate into increasing revenue and net income as patients live much longer.

It is the unique responsibility of the nephrologist to candidly explain to the patient the benefits of the prescription he has written and the effect on survival and well being of not following it.  It is a matter of life and death. Then, it will be up to the dialysis providers, in their own self-interest, to train and support every qualified patient (basic criteria: mental and physical capacity similar to that required to safely drive a car, suitable abode, and a helper) for whom a longer or more frequent prescription has been written to go home and stay home. If a patient has to come back in center, the added cost will come off the company’s bottom line. Home dialysis is their only choice as a future business model, because it provides largely free labor, facilities, and utilities that are only partially offset by added supply costs for extended dialysis.

Finally, incident dialysis patients will no longer be taught that dialysis is a lifestyle choice. On the contrary, it is a wellbeing and survival choice.  Instead, they will be taught by their nephrologist, and reinforced by their center, that following their nephrologist’s prescription will let them return very close to feeling as well as they once felt, and live many years longer than they could otherwise expect. Their job, together with their partner, is to assume the burden of dialysis at home. It is up to the patient to accept this advice. There are not many serious, life-threatening diseases—certainly not breast cancer—where a patient has a chance to personally make herself well again. Taking on that responsibility can be initially scary, sometimes even terrifying. But, after the first few months, there is an indescribably powerful feeling in knowing that you once again have control over your own life.

Is there a loser from this transformation of dialysis? At first glance, the government. Costs will go up as survival improves and the prevalent dialysis population grows. Government must eliminate the perverse limit on the number of weekly treatments that are reimbursed. Can you imagine the outcry if they tried saving money by limiting the number of doses of chemotherapy for a breast cancer patient? Better to limit the amount reimbursed per treatment to incentivize, not discourage, superior dialysis. And training time for home hemodialysis must be made realistic. The present inadequate allowance incentivizes providers to push patients away from home hemodialysis and toward peritoneal dialysis—a poor choice for most patients, with its unfavorable long-term survival outlook.

But at second glance, it is not so clear what the net effect would be. As dialysis patients feel better, complications lessen and they spend less time in doctors’ offices and hospitals, some health care bills will go down and more patients will return to work and pay taxes. The numbers who are invalids living off monthly government checks will fall. It remains to be seen where the tradeoff would wind up, but somehow, it doesn’t feel right to blandly ignore what Scribner and Oreopoulos taught and exploit avoidable disability and death to balance the federal budget.

How can all this ever be made to happen? The answer is actually very simple. All it takes is a caring nephrologist with a prescription pad, reminded of what he would do if he were in his patient’s shoes, to order optimum dialysis for his patient. Just as a medication prescription would be incomplete if it omitted dose or frequency—and seen as a medical error—a dialysis prescription should never omit treatment time and frequency. Let dialysis providers worry about how to make it all happen. I assure you they have seen this coming for years. They are quite qualified and have the knowhow and resources to deal with change, and know they will ultimately benefit from it. In short, the time has come for a new standard of care in dialysis.

Jane died last September—12 years and 3 months after that June appointment—at age 85. She had other major medical problems beyond kidney failure, including one to which her death was attributed. But during Jane’s years on 6x per week nocturnal dialysis at home, she had none of the symptoms of end stage renal disease or characteristic of conventional in-center dialysis, and no diet restrictions, no phosphate binders, no multiple blood pressure meds, and immediate recovery from treatment each morning. The question I had asked her nephrologist turned out to be a turning point in our lives. I am forever grateful for his answer.

So if you arrive at the point where your nephrologist finally acknowledges the elephant and gets out his prescription pad – ask him, “If it were you, what would you do?” His answer may tell you how to save your own life…