The Golden Age of Dialysis Care,
Renal Rehabilitation, and
Why Building Codes Matter
by Gary Peterson, 2/27/2019
(Last edited: (4/21, 5:39 PM ET)
Why is U.S. dialysis care the source of ridicule in the media? Mainstream journalists write about dialysis care using titles like, “God help you. You’re on dialysis” (The Atlantic) and “The dialysis machine — how Medicare steers low-income and minority kidney patients toward the hell of dialysis — and keeps two big companies rolling in profits” (Washington Monthly). Why, after such a promising start, has U.S. dialysis care been technologically stagnant for four decades? What are we getting so wrong in our thinking about dialysis care that this has been allowed to happen?
Out-of-the-box thinking is needed, far beyond the usual medical care arguments. I believe an analogy from the building trades can meet this need.
My father was a masonry contractor in Duluth, Minnesota. In warmer weather, he and his crew poured concrete slabs and constructed the foundations and basements of hundreds of homes. During the long winters, he built fireplaces with all kinds of combinations of brick, block and stone.
I started working for him the summer I was 15. My first job site was a sprawling one-story house overlooking Lake Superior. At first I was completely task oriented. I learned how to help survey, build forms for the foundation, wheelbarrow concrete over and around obstacles, run the cement mixer, and keep the mason’s supply of blocks and mortar running smoothly. I was completely exhausted at the end of every day, but I made $1.80 an hour. Minimum wage was $1.45.
After a couple of weeks on the job, it finally dawned on me that this house would have no basement. I was told the owner was an orthopedic surgeon who planned to spend the rest of his life in the house and based on his professional experience, wanted a home with no stairways. When this realization about the basement set in, I began to wonder why we were pouring concrete foundations six feet below ground level, building 7-feet-high concrete block walls on top of them, and then filling in dirt on both sides of the walls. No one would ever see the work we had done, so why were we doing it? When I raised this question during a coffee break, everyone laughed.
“We just do it for the extra money,” said one of the crew, getting more laughs. “Really, you’ve never heard of frost heaves?”
I knew about potholes, but never thought houses were subject to the same phenomenon.
So I wasn’t completely sure they weren’t still kidding when they told me how the ground moves up and down in Minnesota, even five feet down, during the freezes and thaws in winter and spring. They said that when a foundation moves, a house will develop cracks in the walls, drafty windows, and uneven floors when one side sinks faster than the other. Basement or not, the building codes require all houses in Minnesota to have a concrete slab foundation below the frost line. Without that foundation, even the best constructed house will eventually suffer major structural failures and tear itself apart.
I never understood until this last year how all this was applicable to dialysis care.
The Golden Age of Dialysis Care
When people write about dialysis care in the 1960s and early 1970s, they invariable focus on the "death committees" that were established to select patients for receiving dialysis care. Government reimbursement for dialysis care had not yet begun, so dialysis treatments were "paid for" by combinations of health insurance, private donations, patient contributions, hospital write-offs, and fund raising. Only a minority of patients requiring dialysis care received treatments under this system. This time is usually dismissed as a time of brutal choices and an awful test of our ethical systems. What almost everyone fails to recognize, however, is that this was also in terms of medical art the golden age of dialysis care in the U.S.
When long-term chronic dialysis care was first established in Seattle in the 1960s, the "death committee" chose patients who had the greatest interdependence, purpose and promise in their lives. From the beginning, re/habilitation was emphatically emphasized. One of the founders of the Seattle program, Dr. Belding Scribner, defined the standard of chronic dialysis care with this statement: "If the treatment of chronic uremia cannot fully rehabilitate the patient, the treatment is inadequate." This foundational purpose, which synergized the efforts and wishes of both physician and patient, made chronic dialysis care the highest expression of medical art. It combined the most advanced applications of medical knowledge and technology with institutional support for the deepest meaning and purpose of patients' lives. Chronic dialysis care was holistic. Technologically, enormous advances were made on many fronts in a few short years.
What we have failed to realize over the last four decades is that the necessary foundation for successful and rapidly improving chronic dialysis care... is renal rehabilitation.
The Age of Reimbursement
When federal legislation was passed in 1972 that guaranteed reimbursement for dialysis treatments, it also initiated the end of this golden age of dialysis care. This government funding created an economic boomtown mentality that persists to this day. Like boomtown construction without building codes, dialysis programs sprang up around the country primarily focused on providing a basic new service and capturing its revenue. The medical art of dialysis care no longer mattered and it was replaced with a perverse focus on biochemical markers that ignored patients' psychosocial needs and quality of life goals. For leaders in nephrology, holistic care was abandoned and after two decades of the Age of Reimbursment, almost all efforts were paradoxically concentrated on slow-to-improve mortality and hospitalization rates. While federal reimbursement was hailed as a great step forward in dialysis care, virtually no one noticed that it led to abandonment of renal rehabilitation. The last major conference on dialysis patient psychosocial needs was held in the year 2000.
The Frost Heaves of Dialysis Care
When the Age of Reimbursement dawned, so did the financial conflicts of interest. These financial interests are the frost heaves of dialysis care. Corporate giant W.R. Grace saw dialysis care as a factory-like enterprise that could be exploited for profit. Nephrologists were exempted from the Stark rule and were allowed to own the dialysis clinics in which their patients were treated. This proved to be a slippery slope of professional norms and values which U.S. nephrologists quickly slid down. When cost containment measures were introduced by HCFA, CMS’s predecessor in the 1980’s, it led to a “race to the bottom” in the art of dialysis medicine. These financial policies forced most hospitals to sell their dialysis operations and non-profit providers had to adopt some of the for-profit treatment strategies. U.S. nephrologists embraced Kt/V and minimal treatment times. Many nephrologists were able to become millionaires by “selling” their patients like head of cattle to corporations that were utilizing junk-bond financing. Dialysis care was required to produce profits to subsidize these corporate expansions. With every passing year, more and more nephrologists transitioned from being primarily patient advocates to instead being primarily advocates for their own financial well-being. Today, more than 85% of U.S. dialysis patients are prescribed treatment regimens that virtually no nephrologists would accept for themselves. As reported by the United States Renal Data System (USRDS), the largest non-profit dialysis provider had better mortality and hospitalization rates than the largest for-profit dialysis providers for 14 consecutive years. In 2017, the USRDS decided to stop publishing that comparison. U.S. nephrology has shown no interest in investigating that dirty financial secret.
Frost Heaves Damage and Attempted Repairs
Since the onset of the Age of Reimbursement, little progress has been made in improving dialysis technology or the quality of patients’ lives. Everyone agrees U.S. dialysis care has been stagnant. Nearly everyone agrees that patients’ psychosocial needs have not been addressed and that mortality rates have been a source of shame for U.S. nephrology. Financial conflicts of interest without a foundation of renal rehabilitation have made U.S. dialysis care largely self-defeating. It is like a house constructed without building codes that tears itself apart. It is ridiculed in the media. In 2017, comedian John Oliver did a 24-minute exposé of the U.S. dialysis industry. Some social media sites seethe with patients’ cynicism of corporate motives. In an effort to do something, CMS first changed its reimbursement policies so that nephrologists were forced to actually see their patients on a regular basis. Later, CMS came up with its Quality Improvement Program (QIP). In response to that initiative and to avoid reimbursement cuts, the largest dialysis corporations become experts in manufacturing data. Widespread fraud has been alleged in these QIP reporting programs by a prominent nephrologist at a major dialysis meeting in the U.S. While the QIP program may have identified some of the worst practitioners in dialysis care, it has done virtually nothing to stimulate meaningful progress or rehabilitation in dialysis care. In another attempt to do something, CMS introduced the KidneyX Project in 2017, a technology accelerator initiative. It failed to identify renal rehabilitation as a goal and is relying on technological breakthroughs, not process changes, to improve patients’ lives.
A New Subspecialty Is Needed, Not The House of God
In late January of 2019, a young physician-scientist named Jennie Lin stated the obvious in a tweet: "My final thoughts speaking as an early-career physician-scientist is that nephrology is in need of rehab, and the next generation of high-quality scientists in our field will make the biggest impact in patient lives by addressing a dire need." There are no renal rehabilitation programs in the U.S. and U.S. nephrology has acknowledged no need for renal rehabilitation programs in the scope of patients' care. The lack of renal rehabilitation programs deprives hundreds of thousands of patients of a basic dignity that is an essential need when facing a major chronic illness.
It is as if established U.S. nephrologists have adopted the mindset of the interns in the 1978 book The House of God. Much of the book is about interns learning how to justify practicing the kind of medicine they want to practice, but not the kind of medicine that patients' need. The interns are taught to refer or "turf" the troublesome, time-consuming patients (GOMERS Get Out of My Emergency Room) to other medical services. Since the 1970s, nephrologists have turfed renal rehabilitation from the scope of their practices. Instead of embracing the breadth of their patients' needs, U.S. nephrologists routinely turf patients with rehabilitation needs to government agencies that have virtually no knowledge of dialysis care.
Chronic dialysis care without renal rehabilitation is small-minded medicine. It means dismissing much of the significance of a patient's will to live or reason to live. It leads to the financial exploitation of patients. With no motivation to improve patients' lives, technology remains stagnant. It makes the practice of medical art impossible. The extent of most U.S. nephrologists' "art of medicine" is to "fix the numbers" of lab results and to tell patients to "patiently" (perfect irony) wait for a transplant. No other specialty has turfed so much of their sacred responsibilities as physicians for their convenience and personal financial gain.
Both Fresenius Medical/Kidney Care and DaVita, which used junk-bond financing to drive their expansions, have built empires of dialysis care that neither incorporated renal rehabilitation nor patient employment. Returning to the building foundation analogy, I believe FMC/FKC and DaVita have taken absurd approaches to meeting patients' re/habilitative needs. The FMC Medical Director in the U.S., Dr. Franklin Maddux, has failed to mention renal rehabilitation or patient employment in his yearly report since his tenure began in 2011. Instead of pouring a foundation deep in the ground on which to build their house of care, FMC has simply poured concrete on the dirt in a lot next door and has somehow convinced itself this is good construction. DaVita has placed rehabilitation at the top of its pyramid of care, as if rehabilitation is the magical outcome of a pyramid's power. This is like pouring concrete in the attic of a house. The house will eventually collapse due to its absurd construction.
Solutions Are Needed That Integrate Rehabilitation and Financial Incentives
The most basic statement one can make about the needs of dialysis patients is that they want to live as normal lives as possible. In terms of this basic need, dialysis care can have three possible directions: habilitation, rehabilitation, or debilitation. Using Dr. Scribner's standard, I would estimate that more than 75% of today's U.S. chronic dialysis patients receive debilitating care. Employment rates1 for working-age dialysis patients have never approached the expectations of the early 1970s. Those wishing for rehabilitative care must take on the additional responsibility of learning and performing their own dialysis treatments at home.
If we are ever going to return to a golden age of dialysis care, U.S. dialysis care must reinstate renal re/habilitation as a foundation of dialysis care. We must return to Dr. Scribner's "building code" of maximizing functioning. We should strive to meet patients' physical, mental and social rehabilitation needs and employment goals. Every treatment, as well as every symptom, success, and setback of every patients' life should provide input for a national renal rehabilitation program. Financial disruption of the status quo is required. Most importantly, we must create financial incentives that continually strengthen the foundation of renal re/habilitation. An obvious place to start is for Medicare to reimburse all prescribed treatments for employed patients, students, and patients receiving public or private vocational rehabilitation services. Dialysis clinics that offer evening or nocturnal shifts and home dialysis training should receive higher Medicare reimbursement since those options make dialysis work-friendly. Clinics and nephrologists that treat working patients should receive higher reimbursement. Legislation needs to be enacted that establishes renal rehabilitation as a necessary medical subspecialty of nephrology. Legislation is also needed to create real incentives for employers, especially for small companies and dialysis corporations, to embrace dialysis/transplant patient employment and rehabilitation.
The alignment of rehabilitation and financial incentives is the key to breaking the decades of stagnation and absurdity -- in U.S. dialysis care. We must challenge U.S. nephrology to disrupt its economics and once again practice holistic, innovative, rehabilitative medical art
and not simply pursue technological advances as a panacea. Renal rehabilitation remains an unfulfilled promise both to taxpayers and patients.
1 The 2016 ESRD Organization Summary Annual Report (the most recent one published online) states that of the 142,307 working age (ages 18 through 54) dialysis patients that year, only 20% were employed taxpayers, 1% were students, and 1% were receiving Vocational Rehabilitation (VR) services. Those wishing for rehabilitative care must take on the additional responsibility of learning and performing their own dialysis treatments at home because few dialysis facilities offer shifts starting after 5 p.m. The report stated that nationally only 24% of dialysis facilities offered shifts starting after 5 p.m. Network 16 had the most employed patients at 26% with the most facilities offering shifts starting after 5 p.m. at 52%. Meanwhile, Network 8 had the fewest facilities with shifts starting after 5 p.m. 6% and not surprisingly, only 15% of its working age patients were employed, 1% students and no one receiving VR services.
Reference: 2016 End Stage Renal Disease (ESRD) Organization Summary Annual Report, Table 16 at https://www.esrdncc.org/globalassets/2016esrdnccsummaryannualreport.pdf.
(Thank you to B.W.)