to a Patient-Centered Model for Dialysis Care
DRAFT VERSION - 11/7/2010
RenalWEB Home Page
Evident Problems and Mistakes
Despite improvements in technology and medications, the US has seen only a disappointing 2% decrease in the dialysis patient mortality rate over the last 26 years. Few other medical specialties can claim so little progress. It is presently a matter of debate whether this is due to the patients’ increasing age and comorbidities, or whether it is a failure of medicine, government policy, or financial factors.
Kt/V (or its
derivative URR) and 3-times-a-week hemodialysis
Despite the technological advances, hemodialysis is essentially the same as it was forty years ago. The process is primarily defined by the limitations of diffusion and osmosis within the human body and not by the properties of the artificial kidney or dialysis machines. If the process is rushed with high blood flow rates and treatments times under four hours, patients suffer from insufficient removal of middle molecules, cardiac stunning, and prolonged treatment recovery times.
goals are based on two outcomes: death and hospitalization for those patients
receiving thrice-weekly hemodialysis treatments. Treatment based on this
modality unnecessarily increases the medical complications the patients
must bear. It ignores blood volume control issues, the leading cause of
death today for dialysis patients. It has resulted in most patients being
underdialyzed, feeling chronically poisoned or drugged, and unable to
continue many of their normal life activities, especially employment.
After receiving anonymous reports that lab results were being repeated and “gamed” to achieve the desired results, RenalWEB stopped reporting on the URR values on CMS’s Dialysis Facility Compare web site. This measure, derived from Kt/V, is typically only done on one of the thirteen hemodialysis treatments per month. Its validity as a marker of quality dialysis treatments is highly questionable.
Kt/V was supposed
to provide optimal, individualized, hemodialysis treatment prescriptions.
Instead, it brought a single-approach-fits-all standard to prescribing
dialysis care. Instead of a whole-patient approach, many nephrologists
relied almost completely on Kt/V and biochemical markers as a measure
of patient well-being. Some nephrologists even stopped routinely seeing
their dialysis patients, requiring a change in Medicare reimbursement
policies in 2004. Instead of an individualized approach, Kt/V created
a “fix the numbers” mentality in patient care that still drives
unknowing patients to suboptimal care and life outcomes.
problems identified at the 2009 Boston ESRD conference
The course directors state that they have had serious discussions with the large dialysis providers about engaging in a collaborative study to assess extracellular volume monitoring, rather than continuing to use subjective techniques of "dry weight." The American Society of Nephrology has invited the participants of the Boston conference to present at the 2010 meeting, at which Dr. Straube will participate. The conference chairs continue to publish and provide presentations of their findings in numerous formats.
For more than 25 years, the Medicare composite rate – essentially a flat fee for providing a dialysis treatment – has been stagnant. It has forced dialysis providers to lower their dialysis treatment costs and reduce patient services. This led to shortened treatment times, increased patient-to-staff ratios, and widespread consolidation of dialysis providers. It has also decimated the professional staff in dialysis centers, with large reductions in professional nursing staff, psychological services, social workers, and dieticians. In terms of renal rehabilitation and patient employment, virtually no professional expertise remains in the entire industry. Instead of assisting patients to stay employed, many providers routinely encourage patients to apply for disability status.
When Congress and Medicare officials created the composite rate system, they did not create financial incentives that would also maintain patient employment rates, increase rehabilitation, and improve health-related quality-of-life. MedPAC, the Medicare Payment Advisory Commission that recommended composite payment rates, never considered patient life outcomes in its payment recommendations. Today, most dialysis centers that provide standard, in-center treatments have essentially become factories that produce debilitated, disabled, and depressed patients. Unfortunately for patients, the new PPS or “bundle,” which replaces the composite rate system, only continues these perverse financial disincentives.
Another significant reimbursement policy, the Medicare Secondary Payer (MSP) time period, has evolved over many years in terms of its intent, purpose, and effects. What started as a small cost-saving measure for Medicare has now become the economic backbone of the dialysis industry. Almost unnoticed, it also now has the unintended effect of discouraging corporate investments in extending patient lifespans beyond 30 months on dialysis. (What follows is a simplified, but conceptually correct, explanation of MSP policy and policy changes.)
The MSP period was first intended to lower Medicare spending on dialysis treatments. It began by having the patients’ private insurance pay for the first 12 months of dialysis treatments. Then in one evolutionary change, dialysis corporations began charging the private insurance companies fees that far exceeded – sometimes now by enormous amounts – the standard Medicare reimbursement. In another change, the MSP time period has been gradually extended from 12 months to thirty months. In yet another change, its financial purpose evolved into subsidizing the stagnant Medicare composite rate. Today, the MSP period has become the economic foundation of all dialysis centers and the primary source of profits of the two large corporations. Almost every dialysis center requires a few MSP-period patients to stay solvent and subsidize their Medicare patients. Obviously, all dialysis providers want more MSP-period, “private-pay” patients.
In an unintended evolutionary change, the MSP period now functions to discourage corporate investment in the development of products and services that would extend patients’ lives beyond the MSP time period. When MSP-period patients reach 31 months on dialysis, they become Medicare patients and are no longer the source of significant profits, if any at all. From the viewpoint of corporate shareholders and business managers, the perfect patient is one that has private insurance and then is transplanted, dies, or is discharged from their facility 31 months after starting dialysis.
Interestingly, the dialysis industry recently announced a voluntary program (PEAK) that is focused on improving the mortality rate for some patients during their first year on dialysis. There has been no announcement of a similar concerted effort to try to improve the survival rate of longer-term patients. While the 2009 Boston ESRD conference did focus on the lack of improvement in long-term patient survival, its two course directors were two nephrologists outside the two major corporations.
A final financial disincentive for better care is the separation between Medicare Part A and Part B, which does not exist in commercial insurance. It makes it impossible for savings in Part A (inpatient) to offset the higher costs in Part B (outpatient) that are often necessary to achieve improved outcomes and overall savings in the care of dialysis patients. In the future, both the the medical home concept and the accountable care organizations have the potential to address this problem.
conflicts of interest
Medicare and Congress always have and still do expect nephrologists to look out for the best interests of the patients. Some nephrologists continue to function in that role. Unfortunately, CMS and Congress did not foresee the consolidation and expansion of corporate power and that many nephrologists would align their financial interests with these corporations. Nephrologists now receive tens of millions of dollars each year from the large for-profit provider corporations both as employees and in various forms of grants. In terms of negative effects on patients’ lives, this professional conflict of interest has become a major policy mistake.
It can be easily argued that large for-profit corporations have a powerful influence — far greater than most nephrologists — on dialysis patient care. This was especially apparent with the prescribing of anemia drugs before the FDA “black box” warnings in 2007. These drugs had become a major source of profit for the largest corporations. USRDS data has shown that ESA use at DaVita clinics significantly exceeded industry norms. Corporate officers there fended off accusations of excessive use of ESAs by insisting that their physicians had signed the orders and acted in the patients’ best interests. In a striking contrast, USRDS data for that same period showed that DCI nephrologists gave the lowest doses of ESAs, which is striking because DCI is also the only non-profit corporation among the large and medium-sized dialysis provider corporations. DCI also consistently has the best hospitalization and survival rates according to USRDS data.
The monopoly that Amgen has enjoyed in CKD5 care for over twenty years has provided it with tens of billions of dollars in pure profit. For many of those years, many felt that Amgen and some nephrologists ignored the potential dangers of overuse of this medication in the pursuit of profits. Far too many nephrologists also accepted speaking fees and “unrestricted” grant money from Amgen, and far too few were willing to speak out against these practices. Ultimately, this corporate and physician behavior made the ESA “bundle” necessary.
It is now undeniable that dialysis care in the U.S. is a big business. The reality is that the large, for-profit corporations must answer first to shareholders. Thousands of nephrologists now derive a significant portion of their income from these corporations, are their contracted employees, and must also serve these shareholders. Many nephrologists also have a financial interest in utilizing the existing dialysis stations in their facilities, yet most of these nephrologists would not accept the care for themselves that they provide the vast majority of their patients. Even more potential professional conflicts of interest arise when a large dialysis provider also manufactures several of the medications used by its patients .
With large corporations now dominating dialysis care as well as having significant influences over nephrologists, Congress and CMS can no longer rely on most nephrologists to act solely in patients’ best interests. Until new financial incentives are created, policymakers should expect many nephrologists to continue to target suboptimal, and even minimal levels, of overall health and well-being for these vulnerable patients.
The unpleasant realities of being a dialysis patient in the US
When patients reach CKD5, many find their normal life “falls apart” as they must deal with the many burdens of their illness on a continuous basis. Few human life experiences bring such dramatic health, psychological, and lifestyle changes. Replacing the human kidney requires patients to accept and endure the greatest treatment burden of any chronic disease. Psychosocial services, once considered essential components of successful long-term dialysis care, have been nearly eliminated today. Instead of making patients’ lives easier in living with CKD5, most dialysis centers do not provide the resources that patients need and require to continue living a normal life.
An awful standard of care has evolved over the last thirty years. Today, patients are routinely expected to give up their normal lives when they start dialysis treatments. Social workers routinely encourage their patients to seek disability status when they begin dialysis treatments. Patient employment and renal rehabilitation are no longer valued. While not a direct correlation, Medicare does pay for cardiac and pulmonary rehabilitation, but there are no similar programs for renal rehabilitation. Renal social workers now have unbelievable caseloads of 150 patients or more and spend most of their time on transportation and insurance matters.
For the most part, the patients are expected to shape their lives around the dialysis clinic hours and medical appointments. Most dialysis units do not have shifts starting after 5 pm. Once connected to a dialysis machine in a busy, noisy, and sometimes hostile hemodialysis center, most patients struggle to get their basic needs met. Most patients want to avoid more time in this environment. They often leave the facility feeling washed out and exhausted, making work impossible and normal roles in family life difficult. The amount of dialysis therapy they receive is often minimal, leaving most patients feeling as if they are being constantly poisoned or drugged. The medical and financial models that have evolved today are designed to work best when people with renal failure become professional revenue streams – instead of people trying to lead normal lives.
Most dialysis corporations and their employees create a powerful ‘nocebo’ effect on their patients. Unlike the placebo effect, which produces positive outcomes based on beliefs, the nocebo effect produces negative outcomes. Few dialysis facility employees have had experiences with long-term patients who are successful and empowered. These employees see a system that infantilizes patients and only provides short-time hemodialysis treatments during workday hours as completely normal. By failing to develop any expertise in patient employment or rehabilitation in the CKD5 industry, nearly every contact with a healthcare professional imparts a nocebo effect on patients.
Nearly everyone involved in providing ESRD care is invested – professionally, psychologically, and financially – in the “sick” ESRD patient care model. Two generations of medical professionals have trained and educated who see hemodialysis patients as sick and debilitated. Most professional dialysis care givers have never been involved in the care of thriving, well-dialyzed, hemodialysis patients. All their skills and experiences are based on taking care of minimally-dialyzed patients. Many of the usual medicine and nursing interventions are for symptoms or conditions that only exist when patients are under-dialyzed.
Another example shows how pervasive this effect is. Two new models of CKD5 care appeared in print within the last two years, one in Nephrology News and Issues and the other in Nephrology Nursing Journal. Both were written by groups of leading experts in comprehensive CKD5 care. Neither article mentioned the words ‘employment’ or ‘rehabilitation’ a single time.
It is widely underappreciated that dialysis provider corporations have nearly unlimited power and influence to control and intimidate patients, intentionally or not. Patients must rearrange their lives around dialysis clinic hours and clinic appointments. Few patients have the energy to participate in the change process. Those that demand additional care to support heir employment status or a normal quality of life can be labeled as problem patients. They can be threatened, using documented "behavior" problems, with dismissal or banning from the dialysis facility nearest to their homes
Those patients that
still want to participate in the change process are often buried in excessive
information with little help to sort through fifty years of nephrology
history, medical studies, and federal legislation. When these frustrated
patients are allowed to speak openly in formats such as patient-only support
groups, these meeting often quickly become emotional complaint sessions,
as patients vent long-suppressed anger and frustrations with the quality
of their care.
Patient voices are now several developmental stages behind professional organizations and corporations in terms of being effectively heard in Washington. Corporations have been using the enormous profits they make in dialysis care to “educate” lawmakers and physicians about dialysis financial matters and the best clinical practices for patients. Over the last decade, they have spent millions of dollars for lobbying Congress so as to control policy formation. While this has resulted in billions of profits, as well as eight-digit yearly incomes for a few top executives, it has brought neither optimal health, nor rehabilitation, nor empowerment for the vast majority of dialysis patients.
Lack of data
from patients’ perspectives
While there are decades of biochemical markers and treatment parameters in databases, there have been no mechanisms in place to collect and report feedback from patients as to what they find most important about their own care. Neither CMS nor the dialysis providers have records of patients’ experiences to aid them in understanding or quantifying the many factors that help patients survive and thrive on dialysis.
Forty years after the start of routine, long-term dialysis care we still do not have a vocabulary, definitions, or language to quantify the patients’ experiences. The terms illness burden, treatment burden, disease burden, and even patient-centered care remain undefined from the collective patient perspective. If evidence-based medicine is going to perform retrospective studies on the effects of psychosocial factors on patient survival and care, they will find little data with which to work. There have been no studies focused on determining the amount of dialysis therapy that is needed to feel well enough to stay employed. Without this information on patients’ psychosocial needs and illness burdens, the current model of dialysis care has little chance of improving.
Patient voices are
not being heard through the corporations. Despite the caring and benevolent
tones set in their annual corporate reports, the large dialysis provider
corporations do not seek out honest patient opinions and feedback. Instead,
these corporations continue to insist to shareholders that Kt/V and URR
are effective measures of dialysis adequacy and quality care.
undefined concepts: illness burden and treatment burden
Both these gentlemen would continue to work. To do so, both would choose every-other-day, nocturnal, 8-hour, in-center, hemodialysis treatments. This is more than double the amount of dialysis than most patients receive. It is also a therapy that is not offered anywhere in the U.S. at this time (every other night, in-center, no 2-day weekend). It is also interesting to note that this modality would likely not be profitable under Medicare reimbursement and is only possible due to MSP-period reimbursement.
What is especially
conceptually interesting and revealing is that they both would choose
to minimize their illness burden and treatment burden of their kidney
disease. By getting more than double the amount of standard therapy, they
would likely minimize their illness burden, greatly reducing or eliminating
many of the complications that most patients experience. The every-other-day
treatments, with no 2-day weekend, also would greatly reduce their cardiovascular
If they themselves had to go on dialysis, despite the lack of definitive studies, most nephrology professionals would use their professional knowledge to minimize both their illness burden and treatment burden. They would make it a priority to continue their normal life activities. Sadly, few top nephrologists are willing to go on the record as to what treatment modality they would choose for themselves or a family member. Many will state - off the record – that they would find standard, in-center hemodialysis treatments, which over 90% of their patients receive, simply unbearable. Even though patients are educated to some degree about their choice of treatment modalities, they are not informed of the illness and treatment burdens of standard, daytime, in-center treatments. Again, unfortunately for patients, this is a moral failure that even a child can recognize.
Another concept not yet recognized is that decreasing the patient's illness burden with more dialysis therapy can also increase the patient's treatment burden. From a psychosocial point of view, requiring patients to sit in chairs for longer periods of time likely makes dialysis treatments increasingly toxic. Treatment burden is a complex individual issue, involving dozens of factors including life disruptions, inconvenience, and impact on family life. Unfortunately, this issue is not widely recognized by mainstream nephrology at this time and even patient advocates disagree on its definitions. However, common sense suggests that many studies on longer and more frequent dialysis treatments are significantly flawed because they did not consider the psychosocial burdens of each treatment approach.
Without studies that include the impact of psychosocial issues and treatment burden, the best sources of information today are those relatively few patients have experienced both in-center dialysis care and self-managed dialysis care. They know how they feel and how life is experienced both with too little dialysis — often based on a standard Kt/V of 1.2 — and with double this amount of dialysis treatment time. CMS and the corporations must work with these patients to identify and quantify the concepts of illness and treatment burden, especially with the problems that arise from too little dialysis and from the intrusiveness of medical care.
A model of
care has evolved that downplays and ignores the psychosocial needs of
Instead of continuing to allow the medical problems defined by the nephrologists to dominate all other concerns in dialysis care, a new model of care is required that elevates the importance of the patients’ psychosocial needs, as well as their insights as to what constitutes good and/or bad care. Caregivers must also realize that if patients’ psychosocial needs are not being addressed or met first, they are far less likely to thrive on dialysis, let alone comply with medical treatment and pursue excellence in their medical care.
While the connection
between depression and survival has been medically established in chronic
dialysis care, it is mostly ignored in today’s care models. Nephrologists
simply do not consider or try to address the often whelming psychological
and lifestyle burdens that patients routinely face. In reality, with little
psychosocial expertise remaining in the industry, there are few professional
tools to quantify it or address these problems. Additionally, nephrologists
receive no renal rehabilitation instruction during their training.
In long-term dialysis
care, it appears essential for patients to maintain connections to a purpose
and the meaningful experiences in their lives. While currently not acknowledged,
maintaining these connections appears to be a necessary component for
successful, long-term dialysis care. Long-term medical care cannot be
a goal in itself.
of ‘patient-centered care’
The best definition of patient-centered care may come from the previously mentioned CEO and nephrologist/ scientist. Analyzing their choice of dialysis modalities, it appears that excellence in dialysis care from the patient's perspective should be an unobtrusive as possible and leave each patient feeling well enough to live as much of their normal lives as possible for as long as possible. This means finding the balance that minimizes both the illness burden and the treatment burden for each patient. This could be a new, simple, and individualized definition of excellent dialysis care that far exceeds the capabilities of Kt/V.
What these patients
share is that have become empowered. They know that their understanding
of their condition and problems are superior to anyone else’s. They
have become experts of their own personal care. While they still need
physicians to oversee their overall medical care, they take control of
as much of their dialysis care as they can. They do not accept in-center
care that infantilizes them nor frustrates them in their quest for better
care and a better life. Some of them have been labeled “disruptive”
because they demand more staff time, individual education, and a higher
level of care.
is not enough
Physicians are considered the experts in CKD5 patient care, yet they receive little training in meeting psychosocial needs in CKD5 care, nor do they receive any training in renal rehabilitation. Put bluntly, because they have little expertise in psychosocial aspects of CKD5, they routinely consider it outside the scope of their practices. This was never more evident than at the 2009 Boston ESRD conference. While these well-intentioned physicians at the Boston conference did effectively discredit the use of Kt/V and URR as sole measures of dialysis adequacy, they continued nephrology's mistake of discounting the effects of psychosocial concerns and treatment burdens on mortality. Not a single presentation at this four-day conference centered on the psychosocial needs of the patients, despite the widespread use of the surveys like the KDQOL- SF and KDQOL-36. Only one presentation mentioned depression beyond a single sentence or two.
Despite many recommendations from the 2009 Boston conference for improving patient medical outcomes, patient groups have not embraced the conference’s actions with any sense of urgency or enthusiasm. Yet, patients seem to instinctively know that medical care by itself is not enough. This strange disconnect has been almost unnoticed.
scientists must stop their "fix the numbers" approach and thinking
that a single medical measure (Kt/V, URR, hemodialysis product) can represent
good dialysis care. It must be a multi-dimensional approach. Nephrologists
must accept that the pursuit of excellence in dialysis care is almost
futile without aligning the provision of medical care with each patient’s
individual life interests.
must have a model of its own
A whole patient approach is required for CKD5. If new entities such as accountable care organizations (ACOs) or medical homes simply consider CKD5 care an extension of the medical care provided in CKD stages 1 through 4, there will be no improvements in renal rehabilitation, patient employment, or depression. Unlike acute illnesses, medical care alone will never be enough from the patients' perspectives in long-term dialysis care.
is too limiting in a complex chronic disease
As CKD5 patient activists and advocates know well, this situation is extremely frustrating. Proponents and adherents of EBM usually demand that sufficiently-powered, double-blind, randomized clinical trials be completed before policies are changed. By pursuing this EBM “purity,“ these EBM proponents and adherents have effectively ignored the numerous quality of life improvements enjoyed by self-empowered patients. These patients have used the preponderance of available information — as well as common sense — to prolong their lives and improve their care. In the meantime, most patients are told they must sacrifice their health and lives waiting for these studies to be designed, implemented, and completed, as only then can existing corporate and government policies be “safely” changed. Meanwhile, virtually no dialysis care professionals would choose the care that most of their patients receive. Staying true to EBM purity, we are stuck with a self-defeating model of care.
Most EBM studies in CKD5 are driven by the interests and the money of pharmaceutical, provider, or device companies. Since EBM can only address issues for which it has data, EBM will not be able to effectively address quality-of-life issues in CKD5 care anytime soon. While nephrologists have found much money and help available for pharmaceutical studies, they will likely find little support available of similar quality for studies focused entirely on psychosocial needs and treatment burden.
Under this current model of care based on EBM, nephrologists are limited to a narrow perspective in treating dialysis patients. It is obvious that a new model of care is required that also includes traditional medical wisdom, common sense, and simply listening to successful patients.
There are many changes
coming in dialysis care due to the new “bundle.” There
is a growing focus on new entities such as accountable care organizations
and medical homes for dialysis patients. Unfortunately, at this time,
all of these changes and entities build on the past mistakes and existing
problems in dialysis care. Despite the enormous investment of time and
effort, these "medical" solutions continue to stray even further
from the essential foundations of long-term, patient-centered care.
Solutions and corrections to the evident and not-so-evident problems in dialysis care are not likely to be found in more randomized controlled trials, quality improvement programs, state inspections, or in CROWNWeb data. Simply providing gradually improving evidence-based medicine, by itself, is not enough. A new model of care is needed that values patient experiences, input, and suggestions for long-term care and identifies their most important needs. Resources to meet these needs must be built up as quickly as possible. It must also address the dysfunctional financial incentives that have evolved and solutions that can quickly align them with the patients' most basic interest — long-term survival.
Towards these ends,
this paper introduces an all-inclusive, self-balancing model for dialysis
care that is much wider in scope than is commonly considered today. It
views the psychosocial and economic components of dialysis care as important
as the medical care. This
new model acknowledges the spike — even the explosion — of
psychosocial needs that patients experience when they enter CKD5. By design,
it recognizes that EBM alone cannot deliver the best possible care in
this complex chronic disease. While it does include EBM as a significant
part, this new model is also — by design — far more patient-centered
than current models. It also includes all the human, economic, and organizational
factors that can influence patient life outcomes — and society.
No well-known healthcare model could be found that would address all the problems and mistakes in dialysis care. However, a model from outside healthcare was found that can perform these functions. It is beginning to be utilized for other healthcare disciplines that are turning to a more patient-centered focus. The essential beauty of this basic four-quadrant model design, developed by Ken Wilber, is that it is "all-inclusive" and quickly shows major omissions in any comprehensive approach to complex problems.
In essence, the four
quadrants are: individual patient knowledge/experiences, individual medical
care provided, collective patient knowledge/experiences, and all organizations
involved in dialysis care.
This model recognizes that chronic disease patients' life goals and psychosocial needs must be considered as important as medical goals in order for them to be fully engaged and participating in their healthcare. In its optimal form, it considers patients with life-altering chronic conditions to be equal partners with physicians and policymakers. In order for the model to work for every patient, the four quadrants must be seen as equally important.
Using Wilber's 4-quadrant design, this model of care — specifically for CKD5 care in the U.S. — provides:
By utilizing a framework
that includes more than just medical care, this four-quadrant model can
provide many more explanations and possible solutions for the frustrating,
long-term failures we have seen in CKD5 care. This model not only has
the capability of vastly improving CKD5 care for patients, by providing
a greatly increased focus on CKD5 patient employment and rehabilitation
within a short amount of time, but also for reinvigorating and refocusing
the practices of nephrology professionals.
At a glance, it is
evident that today's system ignores the left half side of the four quadrants,
where the patients’ individual and collective psychosocial needs
reside. These diagrams visually demonstrate why the current US system
of care has been so unsuccessful: The
larger the area covered, the more that quadrant’s concerns are being
addressed and in control.
|New model for optimal patient well-being in dialysis care||Existing system of dialysis care in the U.S.|
There is little argument that dialysis care in the U.S. is dominated by the priorities of the largest for-profit corporations. It is a shock to most people to discover that the patients have so little influence on their care and policy formation concerning their care. It is a system that provides little voice and has no memory of patient experiences with dialysis care.
The need to expand quadrant III
The patients’ language must be developed to increase their influence. In addition to the current quality of life surveys being used, patients must define and control the concepts of treatment burden, illness burden, and patient-centered dialysis care. In order to be free of corporate influence, CMS should create an ESRD Network 19 that is patient-controlled.
To begin to change
this, we are opening the "Fix Dialysis" web site to allow
patients and dialysis care professionals to post what they believe is
important in helping patients survive and thrive while on dialysis.
Instead of waiting for CMS to develop meaningful rating systems, independent
resources should be developed that rate providers in terms of illness
and treatment burden shifted to patients, as well as draw attention
to best and worst practices.
|Optimal CKD5 model of collaborations, communications, and necessary tensions||Today's model of communication in CKD5 care in the US|
Currently, individual patients have little chance of a "fair fight" with other quadrants. Until patient organizations develop strong, proactive voices for optimal dialysis care, individual patients will have a much harder time justifying better care for themselves.
A key feature of
the four-quadrant model is the crosshairs that separates the quadrants.
The severity of its distortion also represents the severity of dysfunction
in the dialysis care system. The model is especially powerful for exploring
how to return the crosshairs to a more balanced position.
The movement of vertical line of the crosshairs to the left or right is useful in thinking of the shifting of illness and treatment burdens to the patient. The further to the left that the vertical line appears in the circle, the more illness and treatment burdens have been shifted to the patient.
Hundreds of small decisions that involve streamlining clinic operations and making them more "efficient" can all add to the patients’ treatment burdens. These range from cutting back on psychosocial services, to reducing the number of needle types available, to eliminating blankets. Unless patient groups or the nephrologist is willing to push back, the individual patients will likely see no improvements in illness burden — and only increasing treatment burdens.
Why the crosshairs moved
When chronic dialysis
treatments began being funded by Medicare in 1972, the model of care
was far more balanced than it is today. There were far more emphasis
on the patients’ psychosocial needs that time. In 1983, when Congress
enacted the composite rate system to control costs, they unfortunately
failed to also establish life-outcome goals that would balance the inevitable
cost-cutting. Nearly all nephrologists then began increasingly focusing
almost solely on medical issues and biochemical markers. The long, slow
decline of psychosocial services began.
has been a failure of patient advocacy. Neither the ESRD Networks nor
the Medicare Payment Advisory Commission has ever considered the patients’
illness burdens or treatments burden in their actions. Most nephrologists
have focused instead on medical issues and many have aligned their financial
interests with corporations. Corporations answer first to shareholders.
Patients became valued primarily as a “per head” commodity
to many of those that own dialysis facilities. Compared to forty years
ago, compassion and empathy have greatly diminished within this field
Obviously, the size
of the patient quadrants (I and III) must be increased. The large for-profit
corporations (IV) are unlikely to give up their influence and power
without a major fight. Non-profit and privately held corporations can
act for the good of the patients, but only within certain financial
limitations. The officers of publicly held corporations with widely
traded stock cannot move the crosshairs for the good of the patients
alone. As powerful as they are, they can only act if their actions are
also good for the stockholders.
In reality, evidence-based medicine will never be able to arrive the best possible care for each individual. However, financial incentives that encourage dialysis providers to keep patients their healthiest, both physically and mentally, can perform the same function. The U.S. long ago allowed market forces into its healthcare system for its "positive" effects. It is logical, therefore, that policymakers should use the corporations’ inherent quest for profits to deliver improved services for patients. By aligning the policymakers’ needs to increase the size of the patient quadrants (I and III) with the need of the large corporations to increase profits, we can restore balance to the dialysis care model. Such a solution can also ensure the survival of small and medium-size dialysis providers and the needed diversity they provide.
By definition, the
4-quadrant model contains everything that can possibly influence patients.
Therefore, subsets of information from this model can be used to create
a graphical representation of patient-centered care.
In the earliest days of dialysis, the number of patients that needed treatment far exceeded the number of machines and financial resources that were available. In order to make the difficult decisions as to which patients would live or die, selection committees prepared and reviewed summaries that encapsulated what each patient expected and hoped to do with their life if they were chosen to receive dialysis treatments. The committees were forced to rate the purpose and even the importance of each life. Once a patient was selected to receive treatments, the team of caregivers was dedicated to supporting each patient’s core duties and roles in their family and society.
Fortunately, we no longer have selection committees, but an important function they performed in defining the purpose of each patient's care is missing today. Looking back now, the reason why long-term dialysis care was so promising at that time was that all the medical, nursing, dietary, and social services professionals were centered on each patients’ goals. By graphically placing the patient's core goals as the center of the driving forces in dialysis care, it is possible to return to the definition of patient-centered care that was so routinely arrived at more than forty years ago.
While there are vast differences between this new model of care and the existing system of care, just two minor changes will provide major progress in moving the crosshairs back to a balanced position.
#1 - The federal end-stage renal disease program should be redefined as a renal re/habilitation program
It was a major
mistake nearly forty years ago NOT to define the federal dialysis program
as a renal rehabilitation program.
Patient rehabilitation classifications
CMS should have long ago developed classifications for renal rehabilitation based on age and life goals. As a starting point, I would propose these five classifications:
Significantly more dialysis therapy than standard in-center treatments (thrice weekly Kt/V=1.2 or URR=>65%) is the most essential component for renal rehabilitation. A choice of employment or renal rehabilitation should be an automatic medical justification for every-other-day hemodialysis. Under the new "bundle", this would provide a significant increase in revenues for providers, as they would not have to increase the patient's medications or lab work that is now included in every treatment under the bundle (Bill Peckham's idea).
Some patients will
choose not to pursue any sort of rehabilitation. Renal rehabilitation
requires a high degree of compliance with prescribed medical care and
is not for everyone. Some patients will always choose the minimal treatment
possible. In those cases, dialysis providers and caregivers must be
non-judgmental, evaluate each patient’s reasons, and provide education
to separate myth from fact about work expectations, benefits loss, and
work incentive programs. Providers should treat physical and emotional
symptoms that limit motivation while providing a level of care that
allows these patients to live as well as possible and for CMS to avoid
excessive care costs.
The economic and
environmental realities of the 2010s will likely require that federal
entitlement programs be modified and, if possible, integrated into greater
societal goals. Instead of accepting the creation of more disabled patients,
policymakers are likely to encourage patients to remain connected, if
not to their normal roles in society, then to projects and purposes
that contribute to their community and a greater good. If fact, providers
should be expected to facilitate those connections as a necessary component
of successful dialysis care.
one of the more elegant ways to remedy much of what is wrong in dialysis
care today is to require that large dialysis provider organizations
employ dialysis patients. It would quickly educate co-workers as to
what actions and environments reduce treatment and illness burdens.
It would also provide the feedback, collaborations, and tensions that
are necessary in a balanced, organic, healthcare system that is always
#2 - Extend
the MSP period for patient that are employed, in school, and under age
The simplest and most dramatic improvement to the financial incentives can be made by changing the MSP period for employed, child-rearing, in-school, or under-age-25 dialysis patients from 30 months to a continuous period. This simple change would revolutionize dialysis care by turning dialysis provider corporations into renal rehabilitation companies overnight.
At once, the corporations would have financial incentives to keep working-age patients as healthy as possible for as long as possible. These corporations would undertake major programs to reduce the illness and treatment burdens of working patients. Home therapy and nocturnal hemodialysis would flourish. They would invest in the development of technology to make dialysis treatments as unobtrusive as possible. Meaningful and effective psychosocial and rehabilitation services would be rebuilt as quickly as possible using existing and proven models.
By producing tens of thousands of healthy, working patients, there would finally be overwhelming observational data that would justify longer and more frequent hemodialysis treatments. Corporate reports would feature patient employment data for the first time. Evidence-based medicine could no longer justify ignoring the obvious benefits.
(Patients will require
protections from life-time caps on benefits, termination of insurance
coverage, and unfair employment termination due to excessive healthcare
coverage needs. Safeguards should also be in place to prevent providers
from extending the MSP when patients are no longer significantly employed.
Nor should private payers be allowed to pay Medicare rates during the
There are some self-insured groups such as the United Auto Workers (UAW) that have objected to extending the MSP. Negotiations should begin at once to ensure that their own members receive the optimal care that dialysis professionals would choose for themselves. Some creative restructuring of the MSP system may be required to make this solution more politically acceptable.
Extending the MSP
period would reduce Medicare expenses. It would also provide a needed
infusion of funds to rebuild the professional expertise that has been
decimated by decades of counterproductive financial incentives. The
dialysis industry no longer has a large pool of professionals that can
support a sudden focus and large effort on patient-centered care. Current
staff will have to be retrained to specialize in long-living patients,
home therapies, self-care, and reducing treatment burdens, as well as
increasing peer-to-peer mentoring, patient employment, and renal rehabilitation.
If nothing else,
I would recommend this book by Harvard business administration professor
Richard Tedlow that was released earlier this year: Denial:
Why Business Leaders Fail to Look Facts in the Face---and What to Do About
It. It is an interesting study in the attractiveness of denial,
of self-delusion in large companies, and of the tactics that are commonly
used in denial.
Gary Peterson, October
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