It’s Time to Return to the Past and Make Home Dialysis the Standard of Care

This blog post was made by Mel Hodge on June 13th, 2019.
It’s Time to Return to the Past and Make Home Dialysis the Standard of Care

In a recent Journal of Nephrology editorial (published online 19 March 2019) John Agar and colleagues recounted the history of dialysis: Home Dialysis: How it Began, Where it Went Wrong, and What May Yet Be. The authors began by describing the source underlying the deeply flawed inadequacy of American dialysis.

“In the first period of maintenance dialysis (circa 1960-1972/3), there was a hope—even an expectation— among the pioneers of dialysis [Shaldon and Buoncristiani in the UK and Europe, and Scribner in the US] that dialytic therapies may evolve into a primarily home-delivered self-care process that could be held at arms' length from the hospital precinct. And ... for a time, this goal seemed achievable.

However, as fate would have it, politics dealt home dialysis an unintended consequence. One week prior to the US presidential election in 1972, an 11th hour addendum to the Social Security Amendment Act HR 1 Section 2991 saw Medicare assume responsibility for the provision of and payment for maintenance dialysis in the US—an addendum that opened the flood gates for for-profit dialysis in 'centers' while—likely unintentionally—fiscally biasing against home management. Home dialysis—at that time accounting for some 50% of all patients on dialysis in the US—was dead in the water. Most other jurisdictions followed suit.”

Diminished today to only a bit over 1% now—a half-century later—American hemodialysis patients have a mean life expectancy of less than four years, often feel ill for hours after each treatment, are commonly functionally disabled and unable to work—and one out of five end their lives by discontinuing dialysis.

Another recounting of dialysis history is Christopher Blagg’s book, From Miracle to Mainstream: creating the world's first dialysis organization: Early years of Northwest Kidney Center. Blagg became director of the Northwest Kidney Centers in Seattle in the mid ‘60s and recorded a detailed account of the first two decades of American dialysis at its birthplace.

Blagg describes how he and his colleagues concluded from their first decade of experience that longer, slower and more frequent home dialysis produced superior patient well-being and was less costly than in-center dialysis. They made and immediately implemented a decision to shut down in-center dialysis with just two exceptions: they would train new patients in-center to dialyze at home, and would continue to dialyze patients in-center who required hospital-level care. Within months about 80% of their patients were dialyzing at home! But as Agar, et al described, an unintended consequence of the U.S. 1972 legislation would come to destroy this accomplishment.

How did such a disastrous consequence result from this legislation? Agar, et al suggest that it was because it “opened the floodgates for for-profit dialysis in 'centers' while—likely unintentionally—fiscally biasing against home management.

I am in complete agreement with Agar’ second conclusion—fiscally biasing against home management—by refusing to reimburse some important home costs such as compensation for a helper where needed, utilities, etc… even though total home costs were less than in-center treatment.

I don’t believe, however, that for-profit dialysis centers are, themselves, the root cause of the miserable consequences of the 1972 law. Nephrologists following the Seattle example, not businessmen, established the first dialysis centers. Businessmen with their “roll up” strategy came in later, offering nephrologists an opportunity to monetize their investment of effort and dollars and retire with some wealth. Then bigger businessmen bought out smaller businessmen…repeated until just two big companies now dominate U.S. dialysis! (An earlier example of a “roll up” strategy was the U.S. funeral home industry).

But the fundamental problem is not that almost all dialysis providers are for-profit businesses. The problem is that the U.S. Government created incentives to which for-profit firms aggressively responded that are in direct conflict with the interests of ESRD patients—their interests in feeling much better and living much longer.

The solution is to bring patient and provider interests into alignment.

To correct the present misalignment the U.S. Government needs to make three changes in Medicare ESRD regulation:

1. Change reimbursement of providers from bundled payment per treatment to bundled payment per treatment-hour to incentive providers to encourage, not discourage, long, slow, frequent treatments (ultimately most economical at home) and to utilize every minute of idle in-center capacity to extend treatments, rather than hoard idle capacity for hoped-for new patient treatments…as they are now incentivized to do.

2. Eliminate the “Coordination of Benefits" policy, which flips primary/secondary payer status between higher paying private insurers and lower Medicare payment at month 30...and thus guarantees that providers have a strong financial interest in their patients’ deaths after that month, as the only thing that will end ever-mounting losses from continuing to treat those patients. Ending this death incentive would also reverse the present provider disincentive to invest in practices and technologies that might extend patient life.

3. Reimburse patients for the full costs of dialyzing at home, including reimbursement for a minimum wage helper where needed, utilities, etc… Just follow the Seattle example documented a half-century ago!

It is also time for nephrologists to pause and reflect on the consequences of writing prescriptions for ESRD patients to replace kidneys that once functioned 168 hours per week with an imperfect substitute operating just 9-12 hours per week—shortening lives and leaving their patients sick and dysfunctional much of the time until death, as Christopher Blagg and his colleagues came to understand by1970. In 2002, Belding Scribner, Blagg’s University of Washington colleague, would strongly oppose starting the proposed FHN program for a clinical trial of home dialysis because the evidence was already then clear. FHN would needlessly delay a better life for ESRD patients…nearly a decade for hundreds of thousands (and with a confused result), as it would turn out.

There is now no excuse for the nephrology profession not to establish long, slow, frequent dialysis—only practical at home—as the standard of care for ESRD, absent contra-indications. And make nocturnal dialysis the preferred mode because it preserves nearly all waking hours available for a normal, productive life. It is past time for nephrologists to consign short, infrequent and aggressive dialysis to the dustbin of medical history to take its place alongside bloodletting and leaches…among other earlier forms of malpractice.

These changes would finally get (almost) all parties on the same page:

  • Patients would recover from CKD stage 5 symptoms to more like those they had once experienced when at largely asymptomatic stage 3...and look forward to a more normal life expectancy.

  • Nephrologists would have the satisfaction of guiding their patients toward this recovery and would be rewarded by a much longer income stream from patients living longer.

  • Dialysis providers’ business models would shift away from patient treatment and toward patient home training, management and support. They would become less labor intensive…and vulnerable to union organization (where attack began last year in California). But, their growth rate would be much higher, as their patients lived much longer—likely leading to a higher multiple accorded to their common stock prices. It’s difficult to think of any business that would not benefit from its regular customers living longer.

The consequences for the Federal government would be more complex:

  • Annual cost for each Medicare ESRD patient would go down as the shift from in-center to home progressed, and the resultant savings captured by a corresponding reduction in the bundled treatment-hour reimbursement rate.

  • Government revenues would go up as more minimally symptomatic patients returned to the work force as taxpayers, no longer welfare recipients.

But unfortunately, there is one more thing. Politicians love to talk about infrastructure investment: the need to replace deteriorating highways, bridges, transit, dams, etc. It is perhaps the only thing warring politicians ever seem to agree upon (In April, Democratic house leaders and a Republican president shook hands in the White House over a $2 trillion infrastructure proposal). But the problem is that implementation would require an immediate, significant and hugely unpopular gasoline tax increase…while the benefits will not be enjoyed until several election cycles later, a mismatch that will not favor any incumbent’s reelection prospects. I am not holding my breath.

Any change in dialysis policy that keeps more patients alive longer may face a similar political dilemma. As dialysis patients’ lives are lengthened, global treatment costs will go up, but the global benefits only accrue as these now extended patients’ lives are lived out. And most resulting Federal revenue increases and cost savings will be reflected in budget line items quite distant from the DHHS Medicare ESRD budget that would be underwriting the cost of this change.

We can only hope that more and more bridges and highways get built…and more and more ESRD patients are enabled to look forward to longer, more satisfying and productive lives. The road map seems clear, but can we expect the necessary moral leadership from our nephrologists and government leaders?

Comments

  • Eric Weinhandl

    Jun 17, 2019 11:21 PM

    I read this entry with great interest and, without a doubt, agree with the overarching goal, if not many of the details. However, in the interest of critical review, I have several questions and one comment.

    1. How would PD be reimbursed if HD were reimbursed per treatment hour?

    2. I contend that HD frequency is mightily important, but I am not convinced that all HD patients require 24-36 hours of dialysis per week. Elderly patients may require relatively little ultrafiltration, so what are we trying to accomplish? The goals are health, quality of life, and cost efficiency; process outcomes, like treatment hours per week, should be subservient to those goals. In a scheme that reimburses treatment hours, what counterbalancing metrics would prevent more HD than is clinically necessary and/or amounts to more time than the patient/family desires?

    3. Is it possible that reimbursement per treatment hour primarily encourages growth of thrice-weekly nocturnal HD? In light of the ACTIVE trial, do we want to encourage thrice-weekly nocturnal HD?

    Ultimately, I do want to encourage more HD: more treatments and treatment hours per week. However, we have seen many instances during the past several decades in which per-unit reimbursement, itself a fundamental construct of fee-for-service schema, has resulted in distorted incentives and less-than-ideal treatment patterns and related outcomes. To be honest, I think that we need to aim for greater capitation, not less, if we aspire to encourage more HD (and if we aspire to not leave PD out in the cold). I see US Medicare spending on dialysis like a pie, with a large outlay for outpatient dialysis and an even larger outlay for acute care (hospital admissions) and post-acute care (e.g., post-discharge SNF stays). From that perspective, we need to identify incentives that encourage more of the sum of those two pools to be devoted to dialysis and less to hospitalization.

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  • Mel Hodge

    Jun 17, 2019 7:40 PM

    In rereading what I wrote, I noticed that I left out an important benefit of nocturnal dialysis - it avoids the strong natural resistance of patients to extending their 3-4 hour treatments which already seem almost unbearably long. But long, slow, gentle treatment is a major key to feeling better and living longer. For those who can adjust to dialysis while sleeping a 6-8 hour treatment is easy! And I don’t believe that the adjustment is any more difficult than learning to sleep in an apartment on a noisy urban street -- might take a week or so.

    Jane’s nephrologist and first dialysis nurse said at the outset in 2002 that nocturnal was the way to go... and we never looked back. Her nurse said if there were any alarms in the night that weren’t immediately easy to fix, just close four clamps, cut the lines with a pair of scissors, turn off the machine and go back to sleep!

    We never actually used the scissors, but we got the point!

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  • Cathy Reydel

    Jun 14, 2019 10:14 PM

    I was a home dialysis nurse in the 70’s. It was an exciting time. I even worked with the pioneers of the suitcase Kidney at SUNY Downstate In Brooklyn NY.
    There was very limited machines available and most patients had to go home. It was complicated then as we used tanks and coil dialyzers. Then we began using Cobe Century machines.
    We need to return to paying family to dialyzing patients and or staff assisted care. We pay family to be aids. Why not pay them to provide dialysis too ?
    It would be a great incentive. As Nurses and techs we were paid quite well. And we provided great care. Home Dialysis is the way to go. If I need dialysis, I’m heading straight home to treat !!

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  • John Agar

    Jun 13, 2019 9:55 PM

    Wonderful blog, Mel. And ... so on message and on target. But, as you and I know - sadly, we'd better not hold our breath. The solutions are clear, but sadly, the seeing of them remains a blur - most of all in the eyes of those who can effect the necessary changes. Let us continue to hope!

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