The Missing Half of Excellence in Dialysis Care
by Gary Peterson, 8/30/2013
(Last edited: (9/2, 8:12 PM EDT)
It is the hallmark of any deep truth that its negation is also a deep truth. - Niels Bohr, 1922 Nobel prize winner for physics
- Excellence in medical care produces excellent dialysis patient outcomes.
- Excellence in medical care does not produce excellent dialysis patient outcomes.
Bohr conceived the principle of complementarity, a revolutionary idea to explain wave/particle theory. Complementarity holds that two contrasting concepts together offer a better explanation and a more profound understanding of some phenomena. Dual views are not fused into one, but instead a dichotomy is maintained to drive greater knowledge and better practical applications.
(Complementarity is NOT to be confused with complementary and alternative medicine (CAM)).
This is the 40th year of the federal dialysis program, a $32 billion enterprise that is primarily funded by taxpayers. Admittedly, it has been a tremendous success in terms of reducing the costs of dialysis treatments. Unfortunately, compared to almost all other fields of medicine, it has been an awful laggard in terms of reducing mortality over the last forty years. It has also been a failure in terms of improving the quality of life, rehabilitation, and employment rates associated with this major organ replacement therapy. Despite the lower per treatment costs, it is likely that overall per dialysis patient costs to society - in terms of disability, lost productivity and lost opportunities -- have greatly increased. Despite the efforts of the best minds in this scientific field, traditional medical approaches are failing in dialysis care.
Instead, a complementary approach, which pursues two independent paths, appears to offer potential breakthroughs and new approaches to care. One path, of course, must address illness and complications. Using the power of databases and medical studies, this path provides evidence-driven improvements, while also providing essential patient safety and long-term insights. The other path, which has been virtually ignored to date, would champion the concept of patient thriving. It would, of course, often be subjective, experimental, and innovative. Its primary function would be to help patients lead the most productive lives possible by continually developing a variety of treatments, systems of care, and new technologies. It would depend on extensive patient feedback and input. The two paths ultimately converge in the overall goal of having patients live as normal lives as possible.
Why doesn’t the traditional medical approach work? Here are five reasons.
- The targets and scope of medical care are inadequate
- An effective patient voice has never developed
- Current financial incentives prevent real progress
- Financial/corporate forces dominate all levels of dialysis care
- It is a moral /ethical morass
Reason #1: The targets and scope of medical care are inadequate
Adequate dialysis therapy has traditionally been based on two statistical outcomes: death and hospitalization. In addressing these outcomes, nephrologists focused on formulaic approaches to treating illness and complications.
Today, few patients thrive. Nearly all nephrologists will acknowledge the importance of a patients’ “will to live” or “reason to live” on their survival, but current targets for dialysis care do not incorporate the patients’ life goals or maintain meaning and purpose in their lives. Dialysis patient employment and rehabilitation rates are not targeted or reported publically. Most dialysis care professionals admit that they believe it would be nearly impossible for them to thrive or to lead near normal lives utilizing the therapy that 90% of their patients receive ─ thrice-weekly, short-time, in-center, hemodialysis treatments. The established leaders of nephrology have focused almost solely on improving death and hospitalization rates and have essentially ignored the psychosocial and human-centered components of renal replacement therapy.
Forty years ago, it was a risk and a leap of faith for the government to agree to cover the costs of major organ replacement therapy. The idea that patients would lead near normal lives was a primary justification for this legislation.
Reason #2: Dialysis patients have never developed an effective voice or message
As a group, dialysis patients have followed the lead of nephrologists, who adopted “not dead” and “not in the hospital” as a standard of care. Patients have established virtually no voice in their system of care. Unlike all other chronic diseases, there have been no patient-driven changes in U.S. dialysis care. Patients have simply accepted a highly paternalistic leadership by nephrologists that is largely dismissive of their needs.
After more than three decades of cost-containment and increased business “efficiencies,” there is no effective patient voice that addresses concerns that affect patients: patient-staff ratios, treatment adequacy, limited psychosocial services, lack of employment and rehabilitation, stagnant technology, misaligned financial incentives, or even the awful mortality rates. Without this voice or these messages, the dialysis care system has instead evolved to meet the needs of nephrologists and corporations, not patients. No effective patient advocacy exists.
As a group, dialysis patients have a highly dysfunction relationship with the powerful for-profit corporations that dominate their care. These corporations do not provide a voice for patients in their care. There is little or no patient engagement. Instead, the patients’ collective voice is effectively controlled by these corporations through tax-deductible “donations” to dialysis patient organizations. Unfortunately, the only time these dialysis patient organizations display an effective, united front is when they are advocating for these corporations on reimbursement issues.
Reason #3: Current financial incentives prevent real progress
The strongest force in U.S. dialysis care is, by far, corporate financial incentives. For-profit corporations will only invest in improvements in patient care that also significantly improve their profit margins. Today’s corporate financial incentives, created mostly inadvertently by Congress, have highly detrimental effects on dialysis patients’ lives.
Patients are most valuable to for-profit corporations during their private insurance coverage period (the first 30 months of dialysis) or when receiving dialysis in the hospital (through some acute care contracts). Patients with private insurance are charged as much as $10,000 per treatment, while Medicare pays $240 for an out-patient treatment.
There is little financial justification for corporations to invest in solutions that extend patients’ lives beyond 30 months on dialysis. There are also no incentives for corporations to keep patients productive members of society, nor are there incentives for developing new technology that would make hemodialysis treatments easier for patients to perform. Although these incentives are controlled by Congress, patient groups and their advocates are not working to correct them. Meanwhile, the for-profit corporations buy more facilities and continue to more treat patients based on current financial incentives.
The Centers for Medicare & Medicaid Services (CMS) has taken two approaches with financial incentives. It recently created an incentive to increase utilization of peritoneal dialysis. Admittedly, some patients do better with this modality and it is underutilized in the US. CMS has also created a complicated quality improvement incentive program that only has a 2% impact on Medicare payments. In reality, this program has little chance of driving significant changes in technology, employment, rehabilitation, and the overall systems of care.
Reason #4: Financial/corporate forces dominate all levels of dialysis care
Nearly all powerful nephrologists and nephrology nurses have strong financial ties to for-profit dialysis corporations. These corporations also exert a greatly disproportionate amount of power and influence over legislation and policy formation, medical societies/organizations, nursing and patient organizations, medical journals, regulatory bodies, and the majority of individual physicians and nurses. Anyone hoping to be promoted within large, for-profit corporations does not act as a patient advocate, except as contrived by their employer. Few independent nephrologists or nurses can effectively challenge the corporations’ power and influence.
Free market forces do not function to benefit dialysis patients, providing them with virtually no “purchasing” power. Instead, dialysis corporations compete for nephrologists, who control where their patients will dialyze. Individual patients who appeal to regulatory organizations quickly discover a system controlled by nephrology peers.
What is needed is a balance of patient, medical, financial, and regulatory forces that works to benefit all. Instead, large, for-profit corporations create their own realities, morals, and ethics. As with ESAs and GranuFlo, corporations can create statistics and information to support nearly any action or point of view, especially those that maximize profits and minimize risk. As dialysis care attracts more and more investors hoping to make money from the obesity and diabetes epidemic, the power of financial forces in dialysis care will only increase further… while nephrologists’ powers will decrease. In turn, the patients’ fate will be increasing controlled by CEOs who serve at the pleasure of stockholders and hedge fund managers.
Reason #5: U.S. dialysis care is a moral and ethical morass
Virtually no dialysis care professional would accept the care that 90% of their patients receive. The medical and corporate leadership of the dialysis care industry will not publically state the dialysis treatment modality they would choose for themselves or their own family members.
Nephrologists are well-compensated – and many became wealthy – by relying on easy, formulaic approaches to dialysis care. They long ago stopped treating patients as equals. Many nephrologists and some nurses participate in profit-sharing or stock option programs, gaining financially when patient services are cutback or lowered in quality.
When dialysis care is in the national news, it is almost always due to an embarrassing medical or financial scandal. It speaks volumes that the public face of dialysis care is a cheerleading businessman in a musketeer outfit who has created an unsustainable profit scheme... and who now makes $26.8 million a year. This is not what lawmakers and taxpayers had in mind when they agreed to fund dialysis therapy forty years ago.
Four Principles/Steps to a New Paradigm:
Principle/Step #1 – Bring morals and ethics to the forefront of dialysis care
- Bring morals and ethics to the forefront of dialysis care
- Create a “failure to thrive” diagnosis
- Complementary medical approaches – one to address illness, the other thriving patients
- Create financial incentives to increase the number of thriving patients
Patients and payers must demand and choose new leadership that aims beyond “not dead and not in the hospital.” Patients should no longer tolerate leaders who do not try to provide patients the same therapy they would want for themselves.
Every person in a position of power should be willing to answer this question: If faced with the necessity of dialysis treatments to survive, what modality, therapies and goals would you choose for yourself or your family members?
Why should any patient follow any leader who is unwilling to answer this question fully and honestly?
Nephrologists and corporations have all the power. The only way for patients to quickly gain some back for themselves is to ask this question. Through comparison, it will quickly become apparent who is giving honest, well-conceived answers and who is not. If a leader won’t answer, patients should question his or her motives. If a nephrologist won’t answer, is there any better example of paternalism in healthcare?
It is a question that allows any patient to stand up to any CEO or nephrologist. It empowers a David against a Goliath, a Rosa Parks against the system.
Even ask Warren Buffet. Educate him, if necessary.
Principle/Step #2 - Create a new diagnosis, “failure to thrive” on dialysis
This diagnosis should be part of the treatment of any chronic illness, let alone replacement therapy for a major body organ.
This diagnosis will force the medical and regulatory communities to address a higher level of patient care than “not dead and not in the hospital” for all patients that wish to function at a higher level.
Failure to thrive may be due to clinic hours, modality choices, access issues, therapy adequacy, psychosocial needs, cultural needs or a thousand other reasons. We have 40 years of databases, but no data on why patients either thrive or do not thrive. Many of these reasons are likely outside the realm of medicine. Patients need to establish lists of these reasons as quickly as possible. Any patient, or secret patient advocate, can write lists and pass it on to their nephrologist, dialysis provider corporation, ESRD Network, CMS, congressperson, and the press. Patients who currently do thrive should be debriefed as extensively as possible.
Principle/Step #3 - Complementary approaches to dialysis care must be embraced; one for illness and complications, the other focused on helping patients thrive
Medical paternalism in dialysis care, as well as the poor results it has long provided, must come to an end and no longer be tolerated. However, nephrologists and corporations will not cede the loss of their complete control without a fight and significant opposition. Do not expect a great deal of interest from them in pursuing two paths. Patients and their advocates must be expected to take on this role and make this change happen.
It no longer makes sense to hold medical conferences on dialysis care that do not include patients. If patient thriving is not a significant part of these conferences, patients should protest and disrupt them until they are changed. Patients are literally fighting for their lives and for the same care that these medical professionals would want for themselves. An illness/complication-only approach to improving dialysis care should be considered iatrogenic. Demand patient-led focus groups within large corporations. Until corporations embrace helping patients thrive, patients should consider disrupting corporate employee and stockholder meetings.
Eventually, in the face of new and building evidence, some nephrologists and leaders will agree that a complementary approach could revitalize dialysis care. Some will see the possibilities in new combinations of patient engagement, healthcare system innovations, new technology, unique psychosocial services, and entrepreneurship, as well as engaging the power of the U.S.’s university system and financial markets. Others will see how striving to help patients thrive would unleash the unique skills and enthusiasms of many frustrated nephrologists, nurses... and patients.
Principle/Step #4 – Create separate financial incentives to increase the number of thriving dialysis patients
Incentives are needed that align patients’ interests with corporations’ interests. If dialysis patients and their advocates ever intend to improve and lengthen patients’ lives, they will need to demand financial incentives for corporations that drive these outcomes.
Corporations should embrace this concept. The only way to justify further increases in reimbursement rates from the government and payers is to deliver higher functioning patients. Instead of focusing solely on lowering dialysis treatment costs, corporations need to focus on lowering overall societal costs of ESRD care in terms of disability, lost tax revenues, and lost opportunity costs.
There is no easily measured metric that will apply to all patients of all ages and conditions of health. The development of effective measures that apply to all patients will take time. However, the one metric that is likely to quickly drive the greatest positive changes for the most patients is employment. Employed patients, especially those just entering the dialysis system of care, are also likely to be among the most motivated. Patients are also more like to be transplanted when employed.
Incentives, such as paying higher Medicare rates to clinics with higher employment rates among working-age patients or lengthening the private insurance period for employed patients, should be immediately considered. To drive patient demand for improvements, CMS should also publish employment statistics for clinics, providers, and networks.
Buckminister Fuller: “You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete.”
The concept of complementarity is being used by many professional fields to address complex and long-standing problems. It provides breakthroughs that were impossible with single-minded or hierarchical paths to improvement. It also offers a chance for the dialysis industry to right itself morally and ethically. When embraced, complementarity will likely offer a deeper truth, that excellence in dialysis care cannot be produced by medical care alone, that it is also necessary to maintain meaning and purpose in patients’ lives. In the end, it finally addresses the ultimate targets in treating any chronic illness --- to have patients live as normal lives as possible and to fully rehabilitate the patient.