With the Pursuit of Quality Comes a Retreat From Personal Care: The Path of Medical Practice and Dialysis Care in America

A Personal Perspective on the Early Days 

When dialysis treatment first started, it was about care and caring. Before dialysis, everyone with kidney failure died. For those of us who practiced nephrology before long-term dialysis was available, there was plenty of end-of-life care and often little else. We gave comfort to patients and prepared them for death, we advised families, and we fervently wished for something better. That effort brought out an awareness of our humanity, producing an environment of compassion and caring that aided families and taught us sensitivity and an appreciation of life. It was stressful, but it was also moving. When we first had the opportunity to perform long-term dialysis, we were learning new processes, procedures, and complications daily. We stayed close and monitored everything. Being present for dialysis brought us into close contact with patients, who recognized our uncertainty but were grateful for the chance to live. This relationship nourished both them and us, contributing to the patients’ confidence, compliance, and success. There was little money, but more time. Those highly selected patients often thrived, even though our dialysis was fairly primitive.

When Medicare benefits were finally enacted for end-stage renal disease (ESRD) in 1973, we thought our worst problems were solved. However, Medicare was not designed for ESRD (or any complex outpatient therapy for that matter), and the struggles between the nephrology community and Medicare to understand each other were quickly engaged. Medicare officials began the ESRD Program disgruntled. As they had not been consulted prior to its passage by Congress, they were left only 8 months to create a completely new program in an unfamiliar field. Although initial rates of payment were adequate, they were a poor fit for actual practices, and many nephrologists chose to go unpaid for over a year instead of letting the facility take all the payment and then being paid out of that. Gradually, the system was refined and the dialysis population surged.

“Death Committees” to select only the healthiest and most motivated kidney failure patients ceased to be used, and many more patients were accepted for long-term dialysis. Accordingly, the survival of dialysis patients declined, the financial cost of dialysis therapies remained unchanged, and the total number of treatments rose. Congress and Medicare took notice. Although reimbursement was based on twice-weekly dialysis, Medicare found that proprietary freestanding facilities were often performing thrice-weekly dialysis, and these facilities made a lot of money. Although it had begun as a ploy to increase income, patients seemed to do better with thrice-weekly dialysis. However, Medicare officials and Congress felt misled and determined that programs should not get rich on Medicare rates. Their resolve, accompanied by the implementation of fixed reimbursement rates and progressive inflation, accomplished just that.

Assessing Quality: Early Experiences and Outcomes 

The renal community took notice of financial pressures and complained to Congress. As there was no evidence that fixed reimbursement rates were reducing quality of care, Congress commissioned an Institute of Medicine study of the ESRD program, led by Norman Levinsky and Dick Rettig. Concurrently, the Medicare ESRD data system came online, enabling the ESRD program’s antagonists to put a spotlight on the program, examine the outcomes data, and criticize it. We were now caring for a population with multiple medical conditions including diabetes, longstanding hypertension, and cardiovascular disease—all severe enough to cause multiple organ failure. Accordingly, mortality was high and the criticism grew, but understanding of the nature of ESRD care did not.

Primarily as a result of inflation, the fixed payment for dialysis had dropped to 35% of its initial value. Smaller dialysis vendors left the field and large corporations, some vertically integrated, purchased these facilities. Physician fees were not adjusted to inflation and more services were included in both the physician bundle and facility composite rate. Time spent with patients was neither valued nor funded, and even when physician payment was related to the number of contacts, the duration and utility of these contacts was not noted.

The Institute of Medicine Committee sought to verify the renal community’s claim that reduced payments had led to lower quality care, but it quickly learned that most of the medical community did not believe that quality of care could be objectively measured. Further studies were commissioned, adapting techniques being used in primary care. The Medical Outcomes Study used questionnaires to get the patients’ own assessment of their condition as affected by the care they received, with serial measurements used to show improvement or decline in health status. These techniques are familiar now, but were quite novel then. As key data were selected and tentative standards promulgated, demands for harder specifications arrived. The Dialysis Outcomes Quality Initiative was established and defined anemia control, dialysis adequacy, blood pressure management, nutrition as manifest by serum albumin, and bone disease management as quality indicators. While these markers assess the quality of specific outcomes, do they measure the quality of care—or of caring?

With reimbursement regulations that required no patient contact and persistence of capitated monthly fees, nephrologists progressively withdrew from the close contact and frequent dialysis rounds practiced before, migrating toward the office and hospital. Nursing staff assumed responsibility for more and more of the management of patient care. Where nephrologists once believed they should be the primary physician for dialysis patients, very few still did so. As nephrologists were accused of poor attention to patients, they responded with less contact and involvement.

The result of both payer and physician efforts to assess quality is a set of standards of performance that can assess several potential biochemical indicators of care accurately and objectively, while neglecting the impact of relationships and personal care. In this setting, physicians are no longer seen as “doctors,” but rather as one of many professional “providers.” These measures certainly offer a means to improve the care given by those who, without oversight, are neglectful or careless; but they ignore the best care and offend some of the best clinicians. Homogeneous standards of care set a floor, but cannot recognize excellence (Table 1).

Table 1. Landmarks in Dialysis Care and Quality Improvement Efforts

	Year	Event
	1960s-70s	Dialysis spreads slowly across the country without systematic funding
	1973	Implementation of the Medicare ESRD program
	1983	Medicare revises its payment program, establishes a lower composite rate
	1984	Implementation of a dedicated ESRD data system
	1989	Recombinant erythropoietin becomes available
	1986-90	Institute of Medicine ESRD Committee
	1990	US Renal Data Systems issues its first report quantifying ESRD outcomes
	1996	Dialysis Outcomes Quality Initiative (DOQI) is established
	2005	Fistula First campaign is launched

Where Are We and How Did We Get Here? 

An unprecedented event occurred in the 20th century as lifespan in the US jumped from 47 years to 76 years. Perhaps it is time to point out the magnitude of this achievement, as, while there is broad complaint at the cost of providing medical care, little attention is given to what has truly been accomplished.

ESRD care may exemplify this achievement. It is expensive but also life sustaining. The costs borne by Medicare for dialysis therapy are high, and the public, for so long advised that doctors are greedy and disinterested, selfish and uncaring, may accept this rumor of physician character as truth. As a group, we physicians make little effort to refute this perception—our image, authority, and caring now subsumed into the broader heading of “healthcare.” We neglect to defend our profession externally and internally, failing to expunge the few who sully our reputation.

Who among us wants to be treated by a “system” instead of by skillful, caring people? Medicine is a retail field of endeavor, with one patient at a time receiving attention. When that level of attention is neither respected nor paid for, what will follow? I contend that the highest quality care is individualized care appropriate to the person treated. That takes time which now is consumed by nonclinical processes and not compensated for when spent with a patient. The modern message is: “Get your documentation done and let someone else at a lower grade handle the patient.” The payers have a right to scrutinize what they pay for and to get value for their investment. However, in their effort to do so, they have resorted to a worship of documentation of care rather than of the benefits of care itself. And we have allowed this to happen.

We spent many years and countless hours learning medicine and continue to work to maintain and expand our knowledge and proficiency. We fear mistakes, in truth far more than we fear accountability for mistakes. We have invested in ourselves for so long because we want to help people and it is gratifying to develop the skills that allow this. We entered a profession where the unspoken contract is: “Take off your clothes and tell me your secrets. I will help you.” This is a large commitment and a huge gift of trust. And it is being lost.

As I move in life from being a doctor to being a patient, I grieve for our loss.