Human-Centered Care for Dialysis by Gary Peterson, 3/25/2013 Executive Summary: What's been wrong with dialysis care and how do we fix it for the long run? This article provides a new derivative overview that identifies a failed patient advocacy culture as the cause of the biggest problems.

Dr. Allen Nissenson, Chief Medical Officer at DaVita, wrote on his blog May 8, 2012:

“We have recently conducted extensive surveys and focus groups with patients to better understand what is important to them when they are getting ESRD care. I expected that great clinical outcomes like fewer catheters and outstanding phosphorus levels would be near the top of the list. However, none of the clinical outcomes came close to the desire of patients to be treated as human beings -for caregivers to truly treat them holistically, to care about them as people and about their families to understand what is important to them and to help them achieve their life goals.”

Introduction / Overview

Compared to other fields of medicine, the dialysis care system in the U.S. continues to produce disappointing results.  Forty years after beginning this heroic effort, the expectation that those with this chronic illness should lead fulfilling lives remains largely unfulfilled.  While this field has embraced well-established medical and business models and touts its focus on patient-centered care, it has produced only slight improvements in mortality in recent decades and virtually no improvements in the quality and content of the vast majority of patients’ lives.  Our society now devotes enormous medical and financial resources to a system of care that increasingly acts as a “black hole,” neither improving patients’ lives nor providing the returns to society promised at the onset of the federal dialysis program.

Compared to other chronic illnesses, models used in this unique medical care system have proven to be inadequate, unable to provide continually improving patient life outcomes over decades.  Upon analysis, critical errors and omissions in current models become apparent when a new conceptual approach is utilized that identifies the possible motivating forces of change in this system of care.   This paper identifies four motivating forces that are required for continual improvement:  medical excellence, financial goals/incentives, government/regulatory, and patients’ life goals/outcomes.  With this framework, it becomes apparent that maintaining checks and balances amongst these forces is essential for a continually improving system of care.  Unfortunately, today’s models of care are dominated by financial motivations, largely due to the poor quality of patient advocacy efforts and the lack of patient-driven changes in the system of care.  Sadly, the public and most medical professionals are unaware of the dysfunctional patient advocacy culture that exists for this chronic illness. Only a handful have considered the negative effects this has had for decades on the overall system of care, and especially on the content and quality of patients’ lives.

As a starting point for discussions of change, this paper describes the basic structure of a “human-centered care system” that recognizes and utilizes forces of change.  It also provides suggestions and considerations for patient organizations, government, corporations, medical/nursing organizations, systems of care, and technology development to help finally develop an effective patient voice in this medical field.  In conclusion, it suggests that the biggest obstacles to improving dialysis care are the long-held attitudes and beliefs of its leadership.  Until today’s leaders fully embrace new roles, attitudes, and responsibilities in patient advocacy, far more powerful financial forces will continue to deliver very different results.

Problems with Today’s Models of Care

Complex diagrams are often used to illustrate the overall system of care for dialysis patients. Over the last three decades, several variations of these models of care have been published in journals and displayed at conferences.   Among the usual components of these models are medical information systems, data flows, evidence-based medicine, and all the health care provider functions.  They also contain non-medical components such as payers, financial incentives, Congress, and regulatory agencies.  As evidence of their “patient-centered” approach, these diagrams usually place the individual patient at the center of the diagram.

Despite the use of these often sophisticated models over many years, there has been little improvement in outcomes for dialysis patients.  The federally-funded dialysis program, which began so promisingly in 1973, has instead produced:

• little improving mortality rates over three decades
• a greater than 80% unemployment rate among working-age patients
• widespread non-compliance by patients with  recommended treatment, dietary, and medical regimens
• high prevalence of depression amongst patients
• insignificant changes in technology  (The US market is dominated by a dialysis machine that has remained enormous in size for 25 years.)
• Few patients participate in patient organizations and there is little patient input in the shaping of their system of care.
• Patients have few real choices.  Approximately 90% of dialysis patients are receiving short-time, in-center, 3-times-a-week hemodialysis treatments – a treatment modality that virtually no nephrology professionals would accept for themselves.

Obviously, these outcomes raise many questions.  How can we be providing a system of care that appears to serve neither patients nor medical progress?    What is wrong or missing from these patient-centered systems of care?  What changes in these models of care would produce continually improving outcomes over long periods of time?

In addressing these problems, most experts have simply established a priority of first addressing the leading medical causes of mortality and morbidity. Traditionally, medical excellence has targeted patient mortality rates, hospitalizations, and the biochemical markers for treatment adequacy.  Although this pursuit of medical excellence being a constant force for decades, it has not produced significant improvements in mortality or in the quality of patients’ lives.  Despite the fact that there have been no medical “silver bullets” and little evidence-based medicine for improving patient life outcomes, there has been little interest in pursuing solutions outside of the refinement of medical care. Perhaps it is time to admit that a new conceptual approach is needed.

Changing the Overview

Over the last thirty years, there have been numerous changes in the dialysis care system and the dialysis industry. The motivating forces of these changes are rarely considered, especially as parts of a balanced – or unbalanced – system.

When properly balanced, the motivating forces of a system of care should solve its biggest problems.  Like an economic system, they should also produce the most good for the least amount of money. It should be noted that the traditional motivating forces of a free market economy, mainly a variety of choices and prices, have not functioned for the benefit of dialysis patients.  (Free market forces, however, have had tremendous effects on nephrologists’ practices.)  Different correcting mechanisms are needed for dialysis care.

Examining the commonly used current models in dialysis care, it becomes apparent that there are three basic motivating forces that effect patients:

• Pursuit of medical excellence
• Pursuit of financial goals/incentives
• Regulation of safety/payment/fairness by government and overseeing agencies

Historical Motivating Forces of Change in Dialysis Care Patients have had little input into their "patient-centered" system of care.

These three derivative motivating forces are routinely used by those setting policies in dialysis care.  The traditional approach to improving care has been for governing agencies to attempt to establish balances between the medical and financial forces.  Composite rate, bundling, and pay-for-performance reimbursement schemes have been created in the past.  Integrated care models, ACOs, and ESCOs are planned for the future.  Others want governing agencies to increase the focus on specific medical solutions that have shown positive and promising results, such as home, every-other-day, and/or nocturnal hemodialysis.  Still others will point to the need to address patients’ non-compliance to medical regimens and call for increased education, empowerment, and choices for individual patients.

Despite these apparently logical and thorough approaches, this system is not working for patients.  While all of the aforementioned approaches continue to be attempted to some degree, none has been able to deliver, by itself or combined with others, significant and continual improvements in a large percentage of patients’ lives over the last three decades.

This basic analysis of the forces in dialysis care leads back to the question of what is fundamentally wrong or missing from our models of care. Considering the dismal outcomes for patients, it seems appropriate to begin by questioning whether the term “patient- centered” has any meaningful definition in our system of care.  While the term “patient-centered” is appropriate for describing the focus of coordinated professional efforts toward medical excellence, it is time to admit that the term has little meaning for patients beyond that context. Without a strong emphasis on outcomes and motivations that important to patients, the current system of care actually increases many patients' frustrations, depression, apathy and hopelessness in dealing with their highly “medicalized” lives.  As Dr. Nissenson’s statement at the beginning of this paper illustrates, despite their almost constant contact with their patients, few dialysis care professionals comprehend their patients’ perspectives. It appears that our standard concept of “patient-centered care” is deficient, and even counterproductive, in reducing patients’ anxieties and depression. Why is the most popular patient web site ihatedialysis.com?

Although the term “patient-centered” appears prominently on corporate press releases and web sites, the reality is that patient feedback, experiences, wisdom, insights, frustrations, and suggestions are not utilized in shaping their systems of care or in technology development.  Too often patient-centered care means bombarding patients and their families with educational materials, while providing no real support for the choices they would like to make or the lives they would like to live.  An unfortunate truth is that there is no significant change in dialysis care that has been driven by patients in the last thirty years.

Perhaps the biggest problem with today’s concept of “patient-centered” care is that it only views patients’ lives in terms of being patients.  Providers create systems that force many people to essentially become "professional patients."  With financial interests dominating care, a kind of “herd” medicine has emerged. It values group improvements in certain medical statistics, while at the same time ignoring holistic individual goals like employment and rehabilitation. To remedy this, the system of care must include another motivating force of change:   Patients’ life goals and outcomes.

• acknowledge the impact of psychosocial needs on medical outcomes
• require individual patient participation in the shaping their system of care (amount of treatment needed to feel well, modalities available, clinic types and hours)
• drive technology development to increase ease-of-use, reduce equipment size, and reduce treatment burdens
• sustain a significant percentage of highly motivated  patients and increase the number participating in shaping policy (this results in greater compliance with medical, treatment, and dietary regimens)
• provide continually improving outcomes that are beneficial for society and taxpayers, namely employment and rehabilitation

Human-Centered Care

In order to set a new and coordinated direction for dialysis care, a new term is needed to specifically describe systems of care that value and focus on improving patients’ life outcomes.  Instead of being “patient-centered,” systems of care for people with chronic illnesses that require frequent medical interventions must be “human-centered.”  Instead of only three motivating forces, four must be balanced over long periods of time to create and deliver continually improving outcomes.

Four motivating forces of change are required for a human-centered system of care.		Updated graphic for human-centered care:  In the center, “Patient’s Life Outcomes/Goals” replaces the word “Patients.” Also, much larger arrows come from the center area symbolizing far greater and more effective patient advocacy efforts.

The basic characteristics of human-centered care:

• People with chronic illnesses want and need to lead as normal lives as possible.
• A significant percentage of patients must be highly motivated and engaged for a system of care to continually improve.
• Requires patient-driven changes in shaping of the system of care. In order to improve medical/treatment compliance, their suggestions are needed for technology development, treatment delivery, financial incentives, and minimizing the burdens of illness and treatments.
• The continual improvement of patients’ life outcomes/goals must become a motivating force for change in the system of care.
• There are four motivating forces in the system of care: medical excellence, financial goals, regulatory requirements, and patients’ life outcomes/goals.
• All leaders in the system of care work to balance the four motivating forces so that they effectively address the largest problems and function as a self-correcting system. 
• Requires independent and effective patient advocates that provide unique guidance and expertise for all participants in the system of care, including medicine, government, all policymaking, corporations, technology development, and especially in the development of financial incentives.
• For working-age and/or physically active patients, employment and rehabilitation must be emphasized from the patient’s initial contact with the system of care.
• A holistic approach to overall care must maintain meaning in a patient's life.

The Failure of the Patient Advocacy Culture

The biggest source of the long-term problems in this field is that the patients have never developed an effective voice in the shaping of their system of care.  None of the dialysis patient organizations are working to integrate patient-driven changes in the system of care, let alone to establish the continual improvement of patient life outcomes as a driving force of change. Patient organizations have emphasized patient education, kidney disease screening, and improving revenues for dialysis providers.  None of these have functioned as a motivating force in the system of care.  Education has proven to be a branch of medical excellence.  It is rare for an individual patient ─ no matter how well educated  ─ to be able to affect changes within his/her local system of care, let alone become a motivating force in the national system of care.

Without a focus on patients’ life outcomes, patient employment and rehabilitation have been diminishing for decades, even though they were the original justifications for a federally funded dialysis program. This crucial motivation for working-age patients is ignored.  Instead, today’s system of care creates and perpetuates an epidemic of disability among working-age dialysis patients, which ultimately adds billions of dollars in state and federal social services costs and results in still billions more in lost productivity and income taxes.

Without patient-driven changes, technology in the US dialysis care industry has changed little in 25 years.  Approximately 80% of hemodialysis patients are treated with Fresenius dialysis machines that have remained the same size for 25 years. Instead of becoming smaller as well as easier and more convenient for patients to use, new features focus on meeting the needs of clinical staff and nephrologists.

Financial forces have effectively minimized patient advocacy.  With for-profit corporations providing a large percentage of the contributions to medical, nursing, and patient organizations, as well as employing the majority of nephrologists and nurses, there are no independent voices that push back and confront the financial forces.  Kidney Care Partners, the lobbying organization that purports to represent all parties, has rules that effectively minimize patient participation and power.

Without this emphasis on patients’ lives, the dialysis care industry has not only lost its way medically, but also morally.  The system of care increasing ignores both ethics and logic in order to deliver continually improving profits, not continually improving patient life outcomes.  Financial scandal after financial scandal has now being the norm for the industry, as are virtually no protestations or comments from the medical, nursing, or patient organizations when these scandals are aired in the national media.

Without an effective collective patient voice, a horrible paternalism dominates today’s “patient-centered care” culture.  Medical professionals would not accept the treatment modality that over 90% of patient utilize. Patient life outcomes and goals are rarely discussed at national provider, medical, and nursing meetings.  Despite their patients’ needs, most nephrologists aren’t willing to offer modalities or solutions outside the business model for their clinics. It is also time for the leaders of the largest patient organizations to be open about the benefits they enjoy from the continuation of the status quo. It is time for them to stop functioning as ‘prison trustees’ for the financial interests that dominate our system of care.

New Directions for Leadership

• Permanently fund an independent working group or organization dedicated to improving patient life outcomes/goals.
• Provide models of systems of care that optimize patient life outcomes and minimize overall societal costs.
• Establish a diversity of well-patient models for renal replacement therapy for all ages and begin implementing and testing them.
• Actively gather, accumulate, and summarize patient input and feedback on improving their systems of care.  Create safe environments for patients and their families where they can speak out without fear of retaliation.
• Force medical, nursing, and regulatory organizations to include patient viewpoints at their national meetings.
• Engage universities, venture capitalists and enterpreneurs on improving patient life outcomes.
• Regularly meet with dialysis equipment designers and manufacturers to provide high quality patient input and feedback for technology development and to reduce treatment burden.
• Establish employment and re/habilitation as expected norms in renal replacement therapy for working-age and/or physically active patients. Despite the protests of the financial forces, publish these statistics.
• Encourage the large dialysis provider corporations to lead the movement for dialysis patient employment.
  

Concluding Thoughts

It is very disturbing that the current models of dialysis care are now being incorporated into larger models for accountable care organizations (ACO) and disease management (DM or ESCO) models.   Unless corrective action is taken now, these same dismal outcomes are likely to be endured by patients for years to come.

Patient show little enthusiasm for the work of 2009 Boston Conference.  With no emphasis on patients’ psychosocial needs, this working group only acts as a force of medical excellence.  It argues for a linear cause-and-effect approach, which entails first focusing on medical interventions to reduce morbidity and mortality.  Employment and rehabilitation come later. A more integrated, organic approach might gain more patient support.

For the vast majority of patients at this time, the only way to experience human-centered care is to utilize home-based therapies.  In-center care is rarely constructed around patients’ lives.

The patient group most likely to drive the most rapid changes in technology and the system of care are employed patients, as they are highly motivated to try to keep living as normal lives as possible. It should be a priority to keep working patients employed when they enter the system of care.  Generally, when a patient continues to work and feels well, almost all the parameters of medical excellence are being met.

Patients, their families, and advocates who are unhappy with the slow progress today’s leadership should base their arguments in human rights, rather than solely in patient rights.  As medicine continues to extend the lives of those with chronic illnesses and healthcare corporations become increasingly powerful, the great danger is that the meanings of those lives will be lost.  Far too many people will simply “live to dialyze” and to generate corporate revenues.

This paper began with a quote by the chief medical officer of DaVita, Dr. Allen Nissenson. His statement is very revealing about how different patients’ and medical professionals’ priorities have been. In truth, medical and business professionals in dialysis care rarely acknowledge their patients‘ deepest concerns, feelings, and needs, yet they have tremendous power over them.  Perhaps a chronic illness with such a high mortality rate requires significant personal distancing by those clinicians in order to remain on the job over long periods of time. Though they are continually in the presence of their patients, it appears professional remoteness, formulaic approaches, and non-listening became the accepted culture long ago.  Hopefully, Dr. Nissenson appears to be committed to changing that.

They say the most profound realization that a fish in the ocean can have is that it swims in salt water. If we are finally willing to acknowledge the failures of patient advocacy in dialysis care, we need the leaders to declare that a new era of patient engagement must begin.  In order for the system of care to continually improve, patients must be heard in new and far more numerous ways in order to better shape their system of care and meet their psychosocial needs. In reality, it will likely take a year before patients become trusting enough to speak out and air their long-held emotions and problems.  Only then will they develop an effective collective voice.

And a Final Guidance:

"If the treatment of chronic uremia cannot fully rehabilitate the patient, the treatment is inadequate." — Belding Scribner