by Gary Peterson
At a time when U.S. lawmakers are examining the value and worth of all tax-payer funded services, dialysis patient groups should be proactive and take the lead in insisting on major changes in dialysis care. Leading this process will require a "big picture" view.
Looking back over my 36 years in the field, I believe there are four major shortcomings in the "big picture" of dialysis care:
- No "well dialysis patient" model of care exists. ("well dialyzor")
- The pursuit of optimal life outcomes has been minimal and they are effectively being ignored. Despite the psychological and overall health benefits, there are no meaningful incentives for patient employment and rehabilitation in the current system.
- In terms of overall societal costs, the current system is penny-wise and pound-foolish. Instead of assisting them to be working and/or rehabilitated citizens, the system now creates hundreds of thousands of debilitated and disabled people — who consume even more societal benefits.
- Patient groups need to take responsibility for the environmental and financial costs of dialysis treatments. Dialysis patient rehabilitation should address and focus on these responsibilities.
Dialysis care professionals would not accept the care that over 90% of their patients receive. Few will admit it, but the current model is a "sick patient" model of care. Based on Kt/V and/or URR, it focuses on two outcomes, death and hospitalization. Sadly, after more than forty years of chronic dialysis care, a "well dialyzor" model of care simply does not exist. Even worse, nearly all patient organizations have educational programs that accept and reinforce the sick patient model. New patients must figure that out for themselves.
Today's model of care is a chronic illness model that does not include patient employment or rehabilitation as realistic goals. This long-ignored shortcoming contradicts the original intent of long-term dialysis care and the justification for its funding with tax-payer dollars. Instead of optimal life outcomes, today's model of care targets biochemical markers (urea and hemoglobin) as measures of success, which has resulted in little improvement in survival over several decades. Until higher level outcomes are targeted, little improvement in patient life outcomes — such as long-term survival, employment or rehabilitation — will be seen.
Almost unnoticed over the last thirty years, the sick patient model of care has led to continually declining patient employment rates and the decimation of psychosocial services for dialysis patients. The result has been widespread debilitation, disability, and depression. Instead of producing working, tax-paying citizens, the current system produces hundreds of thousands of disabled people who consume even more societal resources. While Medicare's composite rate and bundling payment schemes have reduced dialysis treatment costs, they have had unintended consequences that have resulted in far greater societal costs of in terms of widespread debilitation and disability.
The influence of the financial power and motives of the two large for-profit corporations that dominate U.S. dialysis care cannot be overstated. For the most basic financial reasons, they have never placed emphasis on patient employment and rehabilitation in their models of patient care. At this point, there is not enough money in the current payment system policies for them to justify rebuilding the psychosocial services that are needed to encourage and support patient employment and rehabilitation. Presently, the only way to have these powerful corporations develop and implement well-dialyzor models of care is to offer them substantial financial incentives. Fortunately, this can be done quickly within the current payment system by making relatively minor change to existing policies, mainly tying extensions of the MSP-period to patient employment. This would also reduce Medicare costs.
Lastly, the increasing costs and environmental damage that result from hundreds of millions of dialysis treatments can no longer be ignored. A shift from entitlement to responsibility is needed. The end-stage renal disease program must become a renal rehabilitation program that stresses the importance of societal involvement. In exchange for a commitment to long-term dialysis care, patient groups should commit to patient rehabilitation programs that both provide benefits to their communities and offset the environmental impact of their treatments. By combining these responsibilities with the health benefits of patient rehabilitation, dialysis patient groups can establish themselves as leaders of chronic illness medical care policymaking.