what's wrong with the american way of esrd treatment?

2
84 Diamond and is best for patients. This issue will require deter- mining the value to patients as well as the cost effectivenessof home aides to facilitate home dialysis for a selected group of patients. Techniques to solicit meaningful patient preferences will require further development. The problem with renal transplanta- tion includes the expanding recipient waiting list and the apparent plateauing off of the donor pool. Efforts to educate the public and professionals concerning the desirability and feasibility of organ donation will require enhanced efforts by all of organized medicine and the public sector. The definition of death, living wills, medical durable power of attorney, advanced directives and the manner in which society deals with death and the dying will be central to this debate. The relative roles of surgeons and nephrolo- gists in regard to responsibility for care to the trans- plant recipient will require delicate discussions and, of necessity, will involve issues of training, compe- tence, medical necessity and “turf.” The establish- ment of reasonable payments for these defined serv- ices will be a necessary parallel step. On the manpower front, key to the success of the program over the next 5-10 years will be the need to redefine the relative roles of various practitioners in the delivery of care to dialysis patients, including the issue of dialysis technicians, case management for nurses and the coordination of these activities with the nephrologist. A recent study conducted by ANNA highlights the serious manpower problems currently being experienced and anticipated in re- gard to the supply of nurses. Similarly, a RPA/AMA nephrology manpower study highlights some issues of concern for both the practice and research com- munities. Finally, a key issue that will need to be enjoined in the next years is the development of a consensus of how much research funding should be allocated to furthering the techniques of therapy for end stage renal disease. The allocation of resources will need to be balanced and must occur without impacting negatively on funding for other aspects of kidney and related diseases. In addition, funding for out- come and health services research will need to be identified and again without impacting negatively on support for biomedical research. These are sensitive and complex issues and have the potential of causing friction within the renal community. The anticipated renewed interest in and, it is hoped, funding for health promotion and disease prevention will require engagement by the renal community. Similarly, the national debate in regard to cost containment in general and access for the 37 million Americans without health insurance will re- quire the renal community’s careful attention and consideration. Jack Rubin University of Mississippi Medical Center, Jackson, Mississippi Chronic peritoneal dialysis came into widespread use only after technology to deliver effective therapy became available ten years ago. From the beginning, continuous ambulatory peritoneal dialysis has been wedded to the dialysate manufacturers. One cannot forget the investment these manufacturers made to develop solutions, plastic disposable containers and delivery systems. But how do you set a fair price for technology? Has the control of dialysate technology by the manufacturer shaped the direction of re- search? Has this limited investigation into solutions, methods of dialysate delivery, or alternative connec- tion devices? Has the helpful support of the dialysis companies for start up costs for peritoneal dialysis journals limited criticism of manufacturers? Despite the use of home peritoneal dialysis for more than ten years there are no good studies that address adequacy of dialysis in patients receiving this therapy. If asked the question “How do you choose between hem0 or peritoneal dialysis?” the answer would be “I don’t know.” There are no specific Address correspondence to: Jack Rubin, MD. 500-C East Seminars in Dialysis-Vol4, No 2 (Apr-June) 1991 pp 84- Woodrow Wilson, Jackson, MS 39216. 85 criteria and certainly there are no solid data. How is is that after 25 years of dialysis therapy, we still do not know what toxins cause uremic symptomatology and how much therapy to provide? Furthermore, we do not even have criteria to warn us that a patient is failing therapy and a change in dialysis management is indicated. The National Institutes of Health behave as if they have no interest in anything but AIDS or molecular biology. Years ago NIH had the opportunity to lead a study on patient selection criteria for CAPD and also to evaluate whether or not these patients were being dialyzed adequately. The head of the NIH section at the time chose to come to the meeting, but spent the time before the meeting in the company of another renal lobbying group. The study was never funded and what evolved was the “catch as catch can” CAPD registry. Why are there no renal fellows? Why is academic medicine unable to attract quality clinicians who can care for patients? Why is there a $100,000 salary penalty for practicing in a university? Why are ne- phrology societies led by bench researchers? Why do I feel that nephrology meetings are not for doctors who care for patients? Aside from the general railing against the ways of

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Page 1: What's Wrong With the American Way of ESRD Treatment?

84 Diamond

and is best for patients. This issue will require deter- mining the value to patients as well as the cost effectiveness of home aides to facilitate home dialysis for a selected group of patients. Techniques to solicit meaningful patient preferences will require further development. The problem with renal transplanta- tion includes the expanding recipient waiting list and the apparent plateauing off of the donor pool. Efforts to educate the public and professionals concerning the desirability and feasibility of organ donation will require enhanced efforts by all of organized medicine and the public sector. The definition of death, living wills, medical durable power of attorney, advanced directives and the manner in which society deals with death and the dying will be central to this debate. The relative roles of surgeons and nephrolo- gists in regard to responsibility for care to the trans- plant recipient will require delicate discussions and, of necessity, will involve issues of training, compe- tence, medical necessity and “turf.” The establish- ment of reasonable payments for these defined serv- ices will be a necessary parallel step.

On the manpower front, key to the success of the program over the next 5-10 years will be the need to redefine the relative roles of various practitioners in the delivery of care to dialysis patients, including the issue of dialysis technicians, case management for nurses and the coordination of these activities

with the nephrologist. A recent study conducted by ANNA highlights the serious manpower problems currently being experienced and anticipated in re- gard to the supply of nurses. Similarly, a RPA/AMA nephrology manpower study highlights some issues of concern for both the practice and research com- munities.

Finally, a key issue that will need to be enjoined in the next years is the development of a consensus of how much research funding should be allocated to furthering the techniques of therapy for end stage renal disease. The allocation of resources will need to be balanced and must occur without impacting negatively on funding for other aspects of kidney and related diseases. In addition, funding for out- come and health services research will need to be identified and again without impacting negatively on support for biomedical research. These are sensitive and complex issues and have the potential of causing friction within the renal community.

The anticipated renewed interest in and, it is hoped, funding for health promotion and disease prevention will require engagement by the renal community. Similarly, the national debate in regard to cost containment in general and access for the 37 million Americans without health insurance will re- quire the renal community’s careful attention and consideration.

Jack Rubin University of Mississippi Medical Center, Jackson, Mississippi

Chronic peritoneal dialysis came into widespread use only after technology to deliver effective therapy became available ten years ago. From the beginning, continuous ambulatory peritoneal dialysis has been wedded to the dialysate manufacturers. One cannot forget the investment these manufacturers made to develop solutions, plastic disposable containers and delivery systems. But how do you set a fair price for technology? Has the control of dialysate technology by the manufacturer shaped the direction of re- search? Has this limited investigation into solutions, methods of dialysate delivery, or alternative connec- tion devices? Has the helpful support of the dialysis companies for start up costs for peritoneal dialysis journals limited criticism of manufacturers?

Despite the use of home peritoneal dialysis for more than ten years there are no good studies that address adequacy of dialysis in patients receiving this therapy. If asked the question “How do you choose between hem0 or peritoneal dialysis?” the answer would be “I don’t know.” There are no specific

Address correspondence to: Jack Rubin, MD. 500-C East

Seminars in Dialysis-Vol4, No 2 (Apr-June) 1991 pp 84- Woodrow Wilson, Jackson, MS 39216.

85

criteria and certainly there are no solid data. How is is that after 25 years of dialysis therapy, we still do not know what toxins cause uremic symptomatology and how much therapy to provide? Furthermore, we do not even have criteria to warn us that a patient is failing therapy and a change in dialysis management is indicated.

The National Institutes of Health behave as if they have no interest in anything but AIDS or molecular biology. Years ago NIH had the opportunity to lead a study on patient selection criteria for CAPD and also to evaluate whether or not these patients were being dialyzed adequately. The head of the NIH section at the time chose to come to the meeting, but spent the time before the meeting in the company of another renal lobbying group. The study was never funded and what evolved was the “catch as catch can” CAPD registry.

Why are there no renal fellows? Why is academic medicine unable to attract quality clinicians who can care for patients? Why is there a $100,000 salary penalty for practicing in a university? Why are ne- phrology societies led by bench researchers? Why do I feel that nephrology meetings are not for doctors who care for patients?

Aside from the general railing against the ways of

Page 2: What's Wrong With the American Way of ESRD Treatment?

AMERICAN ESRD TREATMENT a5

the world, there is the more fundamental question of whom and when do you dialyze. Recently the mean serum creatinine at the start of dialysis has been falling so that my impression is that it is at 7 mg%. If patients are dialyzed with a pre-dialysis creatinine of 3 mg% or less they should do even better and probably avoid all the complications of chronic renal failure. Is it possible that nephrologists are starting patients earlier so that they can receive additional reimbursement? Although it is financially rewarding to increase the number of patients placed into home dialysis using a peritoneal cycler machine, if the patient is unable to care for himself, is this the correct therapy for the patient? Would a physician ever ignore the fiduciary relationship with the patient just to capture a dialysis retainer fee?

How much of the budget for renal replacement services is spent for ambulance services bringing demented patients to a dialysis unit? How do we select patients for renal replacement therapy? Can we set criteria that permit terminal patients to die? Are we acting as society’s or the patient’s advocate

when we permit a patient to die or when we do not recommend dialysis? Do we as a group, have the fiber to make these decisions?

The health care policies make no sense to the author. If we can provide therapy that only intrudes seven hours into a person’s week, why transplant that patient? The advent of erythropoietin has made this argument even more important. A patient with a normal hematocrit feels normal. Would it not be cheaper for society to provide inexpensive therapy without options? Are we spending too much of our health care dollar on transplantation? Finally, some of the laws governing patient care are difficult for the author to comprehend. The two greatest prob- lems relate to antibiotic use for patients undergoing CAPD/CCPD and the administration of erythropo- ietin to patients receiving home dialysis therapy. What purpose is served by having the patient go to a kidney unit for these injections?

New patient care and research goals for nephrol- ogy need to be established or it will become a second rate sub-speciality.

TWO FREE HANDS

With the introduction of the Scribner shunt in 1960, chronic hemodialysis for terminal uremia became a reality. An innovative alternative to the Scribner shunt was developed by Stanley Shaldon and his colleagues at the Royal Free Hospital in London in 1962.

“The major disadvantages of this system (the Scribner shunt) have been the difficulty in main- taining the patency of the arteriovenous fistula prosthesis, inaccessibility of the prosthesis to the patient’s own hands, and unpredictable blood-flow rates in a pumpless haemodialysis system. , , , The object of this report is to detail (our) most recent development, which has been the successful use of a permanent twin femoral venous prosthesis that permits easy access to the patient’s venous system. Two Teflon catheters are inserted into the same femoral vein by a percutaneous technique and their tips situated in the mid inferior vena cava. Patency of the catheters is maintained by an asbestos capillary heparin perfuser which perfuses the catheters with 0.25 ml. per hour of a concentrated heparin solution (500 units/ml.). The perfuser is charged each day through a syringe and disconnected prior to haemodialysis.”

The femoral venous prosthesis proved successful in a 30 year old man with terminal uremia and severe hypertension. After five weeks in the hospital, he became an out-patient, returning twice weekly for overnight dialysis. At the time of writing, the prosthesis had functioned for two months and a total of 24 dialyses.

“He is able to set up his own dialysis circuit, connect himself to the artificial kidney, and disconnect himself, and requires only a trained nurse to monitor the dialysis during his sleeping period. . . . The possibility of electronic monitoring replacing nursing monitoring must be considered. If this could be achieved the ultimate aim of home dialysis could result in the treatment of larger numbers of patients at present dying with terminal renal failure.”

Shaldon S, Rae Al, Rosen SM, et al.: Refrigerated femoral venous-venous haemodialysis with coil preservation for rehabilitation of terminal uraemic patients. Br Med J 1: 17 16-1 7 17, 1963 (used with permission)