by Gary Peterson
“The fault, dear Brutus, is not in the stars, but in ourselves…”
Chronic dialysis care began just over 50 years ago. The federal dialysis program that pays for most treatments began just over 40 years ago. While everyone applauds the life sustaining potential of dialysis therapy, there is a general consensus that this specialty of nephrology has lagged far behind other fields of medicine in terms of reducing mortality and restoring patients to health. But why? Nephrologists have not answered that question. Could it be that the biggest sources of problems in this field of medicine are the very people we entrust to solve them? Nephrologists, who are usually beyond questioning, would likely feel very uncomfortable if their patients raised the following topics.
- Nephrologists are not honest with dialysis patients. They fail to inform patients that repeated polls have shown that virtually no nephrologists would accept short-time, 3-times-a-week, in-center hemodialysis treatments for themselves or their own family members. Despite their personal beliefs, this is the treatment modality that more than 85% of nephrologists’ patients are currently receiving. As medical experts, nephrologists believe this modality would be inadequate or inappropriate therapy for anyone trying to stay as healthy and active as possible.
- Nephrologists are the highly specialized ‘alchemists’ of internal medicine who, with few exceptions, show little interest in dealing with patients’ everyday psychosocial issues. Nephrologists are primarily trained to be acute medicine specialists and receive little training as chronic care dialysis physicians. Few MDs would go through many years of intensive medical training just to become generalists again. Unfortunately for chronic dialysis patients, the type of medicine that nephrologists want to practice is not the kind of medicine that patients need. While patients certainly appreciate nephrologists’ extraordinary knowledge and efforts when medical problems and crises arise, few patients recognize that nephrology’s chronic dialysis care model is essentially statistics-based ‘herd medicine’ ─ administered by corporations. By maintaining that nephrology primarily is a prestigious acute-care medical specialty, nephrologists avoided a whole-patient model of care for forty years.
- Nephrology’s vision of chronic dialysis care is the antithesis of a life coach. Nephrology has failed to target restoring dialysis patients to health or in assisting them in living the fullest lives possible. After fifty years of chronic dialysis, we should have a significant percentage of patients living as normal lives as possible, something nephrologists would certainly attempt to do for themselves and their own family members. Instead, nephrology has focused almost solely on biochemical markers, hospitalization rates, and mortality. They have failed to create systems that balance the patients’ medical and psychosocial needs. Even though dialysis patient employment and rehabilitation were used to justify the creation of the federal dialysis program, nephrology has never targeted these outcomes. Today, approximately 80% of working-age dialysis patients are unemployed.
- The wisdom of the early nephrologists has been lost. Today’s nephrology treats the body, not the person. Nephrology has evolved to become almost an entirely evidence-driven, detail-focused, left-brain practice. There is virtually no emphasis on human-centered, big-picture, right-brain issues, even though these often drive the overall patient experience and clinical outcomes. Nephrologists can keep patients who are near death alive for months or even years. For far too many patients, it seems that nephrology cares more about the numbers in their patients’ charts than the meaning and purpose of their patients’ lives. Even more sadly, nephrology has made no attempt to capture the wisdom of its patients. Nephrology only gives lip service to ‘patient-centered care’ and ‘shared decision making.’ The Chief Medical Officers (CMOs) of the dialysis industry have held a number of meetings over the last five years in an attempt to improve poor patient outcomes. All of these meetings excluded patient participation and avoided psychosocial issues.
- Nephrology has yet to address the mind-body connection in medicine. Nephrology is essentially clueless about dialysis-related depression and its confounding effects on patient mortality, hospitalizations, and patients’ everyday lives. Nephrology not only fails to addresses the causes of depression, it appears to be in denial about its own roles in causing it. Nephrologists also seem incapable of acknowledging that the majority of their patients fail to thrive. Too often instead, patients are blamed for not adhering to physiologically and psychosocially brutal treatment regimens that nephrologists themselves would not follow. Nephrologists who champion the patients’ social goals or psychological needs are unlikely to be rewarded with career advancement, published articles in high-profile nephrology journals, or increased respect from colleagues.
- Nephrology controls the language and dialogue about dialysis care, effectively ignoring the collective patient’s voice. Nephrologists and patients have different values and vocabularies to describe dialysis care, making effective communication difficult or impossible. Nephrology only values its language, which requires a scientific vocabulary, extensive knowledge of evidence-based medicine, and a command of advanced statistics. Nephrologists learned long ago that they can control conversations about dialysis care, as well as intimidate others who question them, by insisting on using only their specialized language. Questioning and answering in common language betrays chronic care nephrology. Few nephrologists will admit that after fifty years there is precious little scientific evidence as to how help dialysis patients live full, active, and productive lives by utilizing in-center hemodialysis treatments.
- Nephrology has placed little importance on creating smaller, portable, easier-to-use dialysis machines. While the rest of medical technology world has seen tremendous breakthroughs in creating smaller and more elegant devices, the vast majority of dialysis machines sold today are the same size or are even larger than they were decades ago. By not focusing on increasing the percentage of healthy, active, productive dialysis patients, dialysis technology has been stagnant and nephrologists have been satisfied with the status quo. Today’s machines are primarily engineered to function optimally in large clinics and to meet the workflow requirements of corporations and nephrologists.
- Nephrology’s approach to chronic care is deeply embedded in government, regulatory, and corporate policies. Over several decades, their way of practicing chronic care medicine has become industry standards, as well as the basis of quality measures and financial incentives. Their approach to chronic care is also embedded in the technology and architecture of their dialysis industry. Even the government’s formal patient complaint process is often controlled by a nephrologist in the end. By framing the government’s oversight of chronic dialysis care, nephrologists have made U.S. taxpayers the paymasters ─ and the enablers ─ of a perverse form of medicine. After forty years, we have the wrong objectives, wrong machines, wrong clinics, wrong policies, wrong financial incentives, and wrong corporations.
- Nephrologists’ financial interests often trump patients’ interests. The Stark Law prohibits physicians from referring Medicare patients to clinics in which they have a financial interest. Nephrology was able to gain an exception from this law. In the end, they have built thousands of clinics which provide treatment regimens that they would never accept for themselves or their own family members. The disgraceful overuse of ESAs/EPO is a story that has yet to be fully told. Amgen continues to drive use of their medications by inserting financial incentives into last minute federal legislation that is passed without debate. It is a given in the dialysis industry that ‘payment drives practice.’ Nephrologists do not acknowledge that their payment/cost-driven medical choices often worsen a patient’s physical and psychosocial status. Instead of speaking out, nephrology is silent ─ and even complicit ─ about the corrupting influence of corporate money in government lobbying, patient groups, non-profit organizations, and on nephrologists.
- Leading nephrologists are shirking their responsibility as patient advocates. After playing a huge role in creating these problems, nephrology’s aged leaders now seem to be washing their hands of everything by turning over the definition of quality dialysis care to a corporate lobbying group, Kidney Care Partners (KCP). Why is KCP ─ a lobbying organization controlled by corporate interests ─ establishing a medical blueprint for dialysis patient care? To start, having KCP lead in chronic dialysis care will avoid change and criticism. KCP will not advance solutions that damage corporate interests or expose decades of wrong-thinking. Corporations specialize in suppressing voices of dissent, a reality that activist patients quickly learn in their clinics. It also seems that nephrology's old guard no longer wishes to consider major changes in chronic dialysis care and instead sees the next major focus of nephrology being on kidney disease prevention. Perhaps they believe this is the best course until a wearable artificial kidney is available. If so, chronic dialysis care’s future for the next several years appears to be limited to the refinement of algorithms, decision trees, and protocols.
Today’s leaders in nephrology were trained at a time when the best physicians were taught to be detached specialists. The often shotgun marriages between nephrologists and chronic dialysis patients have been for the most part one-sided, neglectful relationships. While left-brain physicians are needed to initiate organ replacement therapies, they are often the worst choices to lead patients’ long-term care.
New leadership in nephrology is needed that will drive a rapid evolution in dialysis care. Dialysis patients need holistic care, the equivalent of life coaches, and physicians who not only save their lives, but also work to sustain the meaning of their lives. Perhaps the secret that is locked away in Tassin, France is ─ ‘get a lot of dialysis and be psychosocially well.’ For those looking for suggestions on possible steps forward, consider this.
Finally, it must be said that a small but growing number of patients have found evolved nephrologists who do treat them as equals. It must also be noted that nephrology alone should not be blamed for decades of stagnated dialysis care. One must consider the large dialysis organizations that value profits above thriving patients and that ardently fight to shut down opposing views that contradict their corporate images. Then there are the patient groups which allow their voices and priorities to be hijacked, silenced, and bought, so that the permanent upper echelons of their organizations benefit. And do not forget he policymakers and legislators who seem blissfully unaware that they have completely lost control of the care and the finances of this industry. It has become routine for all these groups to dole out awards to each other's members for facilitating excellence in dialysis care. In the end, however, I do not believe history will be as kind.