By John Bower, MD

If I had end-stage renal disease (ESRD), I would select home hemodialysis. Most nephrologists do not promote this modality, but most nephrologists with end-stage renal disease have selected home hemodialysis. It is the gold standard. This does not mean that peritoneal dialysis and kidney transplantation have no role in the management of ESRD. Indeed, these modalities of therapy are an integral part of the management of end-stage renal disease because they give the patient more freedom and a better quality of life. This is particularly true if the patient has a successful kidney transplant. Home hemodialysis however remains my preferred modality of therapy. This decision is based upon my 35 years of hands-on dialysis experience with over 10,000 patients in renal failure. Home hemodialysis is not the easiest, but it is the best for the patient.

The path of least resistance both for the nephrologists and the patient is the limited care dialysis environment in the dialysis unit. Basically, in a center all the patient has to provide is a uremic body to be dialyzed and an access device for someone to inject. In exchange for this noninvolvement, the patient gives up a large portion of his life and becomes a prisoner of dialysis. Limited care dialysis scheduling is comparatively inflexible. The patient's life must be scheduled around the dialysis units' schedule as opposed to home hemodialysis where the dialysis procedure can be scheduled around your life. As in all circumstances, freedom requires that you accept responsibility. This particularly applies to dialysis. If the individual is willing to accept the responsibility for his treatment, he may go home, visit with his family in the evening while he is dialyzing, watch television and have a full day in which to conduct his family or business affairs. The reality is: do you want to respond to the beat of my drum or do you want to beat your own drum?

Virtually anyone can perform home hemodialysis if they so desire. Overcoming the fear of the unknown and accepting ESRD are the major obstacles. Fostering the quest for independence and dealing with fear are the responsibility of the physician and the other members of the kidney team. This team particularly includes social workers who can gather data crucial to the decisions regarding the home environment and support structures. The nurse from the home dialysis training program should also be involved to assess intellectual capacity and manual dexterity. A simple test that we have applied for years is to determine that if a patient can drive an automobile, he certainly can learn to run a kidney machine. Even patients who can't drive a car can learn to run a kidney machine. We have trained patients with very limited IQs, who were unable to pass the drivers test to perform home hemodialysis successfully. When choosing home hemodialysis, an important decision must be made regarding a helper. Successfully merging the helpers input with the patient's abilities is one of the major keys to the success of home hemodialysis.

We have learned much from our patients about support systems necessary to successfully perform home hemodialysis. One encounter in particular taught us a great deal about support systems. We read in the local newspaper that a patient's husband (helper) had a heart attack and died at work. We found this out two weeks later. Somewhat nervous about her dialysis, we called her and she informed us that she had not missed a single dialysis treatment because she had gone across the street and had her neighbor come and assist her with her treatment. We asked if she felt comfortable with this, and she said that "any dumb neighbor is capable of being my assistant."

Based upon this and many similar experiences, we have always preferred the "dumb neighbor" policy for home helpers. This is what we refer to as a Level I patient, in which only the patient is trained. The helper is brought in for the last week of treatment, and the patient teaches the helper what they want the helper to know. Level II is where the patient and the helper share responsibility. At a minimum, this includes needle insertion by the helper and minimal participation in the operation of the machine. A Level III helper is one that basically performs limited care dialysis on a family member at home. We strongly discourage Level II and Level III. Helper burnout is the main reason that home hemodialysis has failed. Too much authority and responsibility to the helper is what produces stress on the family. Regardless of how much you care about someone, if you are given this amount of control over them, it leads to abuse and hostility. We tell our patients that if someone had to assist them with urination before ESRD, then someone should assist them with home hemodialysis. We do feel that someone should be in the house with the patient at all times during the home hemodialysis procedure but not necessarily performing any vital functions. A "gofer" is preferred.

The main obstacles for home hemodialysis concern two factors. The physical environment must accommodate the machine and the supplies and the patient must be motivated to use this modality of therapy. Motivation is the most important factor by far.

The ultimate objective of home hemodialysis to achieve unattended hemodialysis. When dialysis first began, that was our mode of operation. We used the Kiil Boards, no blood pumps and dialyzed for eight hours at night with a batch tank proportionating system for the dialysate. Very little if anything could ever go wrong, and indeed it seldom did. As the speed of dialysis has increased, it has become a much more hazardous procedure but certainly not to the point that home hemodialysis should not remain a major modality of therapy.

Home hemodialysis has become a very underutilized modality of therapy. The reasons are multiple. First, it is seldom offered to the patient, and secondly, the patients are seldom educated about this modality of therapy. The failure of home hemodialysis as an option is a system problem not a patient problem. Talk to your nephrologist.

Dr. Bower is the Chief, Division of Nephrology & Hypertension at the University of Mississippi Medical Center in Jackson, Mississippi. He also serves on the AAKP Medical Advisory Board.

This article originally appeared in aakpRENALIFE, Vol. 15, No. 5, May 2000.

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