Final Words

---

What Yellowstone Can Teach Us

After more than 22 years, I will be ending the daily update of the RenalWEB news at the end of August 2021. I began working in the dialysis field in May 1975.  I have been a patient care technician in Minnesota, a chief machine technician in Saudi Arabia and California, an inservice RN in New England, a Fresenius product manager, the editor of RenalWEB, and a sometimes amateur Washington lobbyist. After 46 years, this is likely my final look back.

In the end, I am very disappointed about how little progress has been made in this field of medicine. Despite the hundreds of billions of dollars of public funding, this medical specialty has largely failed to either thrive and innovate.  Little progress has been made in improving the quality of patients’ lives.  Technology has been stagnant.  In the media, dialysis care in the United States has been a source of scandals and ridicule for decades.  While virtually all other fields of medicine have made huge strides forward, dialysis care is largely unchanged since the 1970s, as this cartoon illustrates.  There must be basic fault in dialysis care that has caused it to stall. Something must be impeding the usual processes of progress seen in the other medical specialties.

With these final words, I hope the dialysis community and especially young nephrologists will consider the lessons from another well-known federally managed program. It also began with well-meaning intentions from top-down management. Instead, it caused massive unforeseen damages by eliminating a small, essential part of a finely balanced ecological system. I offer that it is time to see dialysis care as a system of balance and that its long-term problems can be explained in terms of an omission that disrupted this balance.  I also contend that these problems can be successfully addressed by restoring essential bottom-up mechanisms to the system of care.

The eradication of wolves from Yellowstone National Park is a complex story of unintended consequences.  When Yellowstone was established in 1872 as the nation’s first nature preserve, it was a contentious idea at that time, especially for local residents. As a concession to local ranching interests, the wolves of Yellowstone were intentionally eradicated between the 1870s and 1920s. At first, few noticed the effects of this policy.  When the park’s elk population exploded decades later, a highly controversial decision was made in 1995 to reintroduce wolves to the park.  While this did reduce the elk/deer population, what surprised everyone was that this also led to enormous improvements in the both the biological diversity and the physical geography of the park.  Today, the reintroduction of wolves is credited with saving Yellowstone Park.  The story of the bottom-up mechanisms and their positive effects is told in this 2-minute video.

In reality, the U.S. dialysis system of care has never enjoyed a healthy balance.  In the very beginning, only a few of the many patients with end-stage kidney disease could receive the expensive life-saving treatments. Patients were selected based on the roles they played in their families and communities, as well as the potential and promise of their lives. As such, the dialysis clinicians of the 1960s emphasized maintaining the meaning and purpose of patients’ lives in their systems of care.  For those few patients their norm was collaborative, whole-person, rehabilitative care. This early version of renal rehabilitation was seized upon as a primary justification for the federal funding of dialysis care.

When federal dialysis legislation took effect in 1973, it solved the biggest problem of that time, which was ending the so-called death committees. Unfortunately, the legislation also had several unintentional negative effects. With the rapid increase in the number of elderly patients, any emphasis on renal rehabilitation was lost. Suddenly there was no longer any requirement to improve – or even maintain – the quality of patients’ lives. With no need to address quality-of-life issues, the patient-physician relationship became perversely distorted.  It evolved into an almost exclusively a one-way, top-down, knowledge exchange. With the loss of this essential patient advocacy role, nephrologists also became susceptible to acting in their own financial self-interests.

These trends were exacerbated in 1983 when the composite rate reimbursement system for dialysis treatments was launched. It began driving more dialysis centers out of hospitals and into for-profit dialysis corporations. In these corporations, home dialysis was nearly eliminated. Nurses, who are trained to address all patient needs, were replaced by technicians. Social workers, who could identify and address rehabilitation and quality-of-life issues, had caseloads of 130 or more and were burdened instead with non-clinical tasks. Treatment times began to be shortened.  Kt/V was introduced and the measure of successful dialysis care was tied to two outcomes, “not dead” and “not in the hospital” (i.e. mortality and hospitalization rates).

Without renal rehabilitation, physician financial self-interests ran amok. In 1989, the Stark law gave nephrologists an exemption from the Medicare provision that prevents physicians from referring patients to clinics in which they held an ownership position. For-profit dialysis corporations utilized junk-bond financing to buy and create partnerships with nephrologist practices. In turn, most nephrologists adopted their minimalist approach to dialysis care, which several polls showed they would not accept for themselves. Transplant referrals lagged and EPO doses maximized profits. With so many prominent nephrologists pursuing this path to multimillion-dollar personal gain for decades, US dialysis care saw the demise of the collaborative physician-patient relationship and the eradication of renal rehabilitation. The last major US conference on dialysis patient psychosocial needs was held in the year 2000. Consequently, a recent study found that compared with dialysis patients in other countries, US patients had some of the worst physical well-being scores and the highest rates of unemployment and diagnosis of depression.

Without the bottom-up mechanisms that renal rehabilitation provides, the top-down, carrot-and-stick management attempts by CMS to improve dialysis care have floundered.  Requiring more nephrologist visits has not worked. The ESRD Quality Incentive Program has had little positive impact, even for dialysis vascular access.   Despite this futility, the dialysis community is planning more of the same.  Financial self-interests dominate top-down management in US dialysis care.  Instead, outside-the-corporation thinking is needed.  The intelligence and wisdom of bottom-up mechanisms should be embraced in everything from web sites like ihatedialysis.com to slime mold (which can solve some complex problems better than experts). An example of the collaborative relationship and quality of life that US dialysis care should offer is outlined in this recent CJASN article.

Rehabilitation has become integral and essential to several other fields of medicine. Yet, two generations of US nephrologists have been trained without any emphasis on rehabilitation. To other medical professionals, it must seem ludicrous that this major organ replacement medical specialty does not consider rehabilitation as an essential part of its care. Rehabilitation is normally prescribed after a disastrous medical event. It is time to admit that dialysis is a disaster, both for patients and for nephrology. Considering this omission in professional practice and training, should patients entrust nephrologists with the role of “captain of their ship”?

The time has come to end the top-down tyranny of the expert panel, the ad hoc committee, the multimillionaire nephrologists, and the randomized controlled trial in dialysis care. We must nurture, maintain and continually improve an information exchange system between patients and their caregivers.  A new bottom-up mechanism must continuously capture patients’ problems and frustrations in both their lives and their system of care. It must also translate and formulate this information into knowledge and research that can drive new care practices and policies. Renal rehabilitation must be seen as an integral, bottom-up, organic force that continually grows and evolves.

What would renal rehabilitation entail?  New medical and nursing specialties; Patient-driven research and development; Interdisciplinary care; Far more specialized social worker and psychosocial/family support; Annual rehab/psychosocial conferences attended by patients and medical professionals; Dialysis corporation rehabilitation positions; Equipment manufacturer specialists; Patients’ short/long-term goals and feedback integrated in systems of care; Legislation that promotes and incentivizes employment/rehab; Higher reimbursement for employed patients;  Vocational rehabilitation programs/employment opportunities for patients in dialysis corporations; Healthy dialysis patient communities independent of corporate funding; Flexibility in treatment schedules and medical appointments; More nocturnal dialysis, both in-center and home; Group psychosocial support while sharing, preparing and growing renal-friendly food/meals; Specialized physical therapy. Imagine the progress that could have and can be made.

Dialysis care without renal rehabilitation is like Yellowstone without wolves. The missing component disrupts the intelligence and wisdom of a system of balance.  Relying solely on top-down knowledge and management causes far more harm than good. Employing further interventions that maintain the mistake only prolong the life of a self-defeating system. Reintroducing the natural, organic, bottom-up mechanisms that previously existed, even for just a portion of the patients, will help bring the system back into balance. As was seen in Yellowstone, this effort can and will lead to many unforeseen improvements, offering benefits for all renal patients along the spectrum of care.

Finally, consider the words of the nephrologist who laid the foundations of chronic dialysis care in the US, Dr. Belding Scribner:

“If the treatment of chronic uremia cannot fully rehabilitate the patient, the treatment is inadequate.

 

“I don’t know what to do to guarantee the quality of dialysis in the future. It’s so intimately tied to the motivation and the personality of the people running it. I think dialysis could deteriorate very badly…It takes devotion of the highest order to make this thing work.”

_

Gary Peterson, Aug. 31, 2021
RenalWEB.com