By Peter Laird, MD
Dialysis in America is different than the other developed nations. The focus in America is very much industry centric instead of patient centric. One of the most profound examples of the differences between dialysis in the United States and other developed nations is the nearly universal prohibition against patients dialyzing at home alone. Canada, England and Australia not only allow patients to dialyze at home alone, the entire focus in those nations is on self care as a responsibility of the patient and not the care takers. There are many barriers to dialyzing at home alone including companies such as NxStage which included the provision of a care partner in their FDA approval as well as dialysis providers. Some States also prohibit dialyzing at home alone.
Physicians bear the brunt of the responsibility in ensuring safe dialysis practice. From my own experience, the overwhelming impression among my colleagues in internal medicine is that dialysis is a dangerous procedure. Certainly, it is an invasive procedure but I believe the instinctive reaction of most physicians including nephrologists comes from the iatrogenic complications seen daily in dialysis units where patients routinely collapse from rapid volume depletion due to excessive ultrafiltration rates. The stable dialysis patient is a foreign consideration in most dialysis units. The reaction of most providers when discussing dialyzing home alone is as astonishing as Macaulay Culkin's iconic realization he was home alone.
When I first started dialysis, I was surprised that I survived each treatment when I considered my own professional bias against dialysis learned in the intensive care units where more than one dialysis patient "crashed." As I learned more about optimal dialysis and applied that knowledge to my own treatments, I slowly realized that the philosophical approach and application of treatment is the most important stabilizing factor. In five years of dialysis, I have never once vomited, passed out or even become lightheaded except for the one time that my dialysis technician set my ultrafiltration for 5000 ml instead of 500 ml. After 2.3 liters, I began to be nauseous and lightheaded. Two liters of normal saline reversed that medical error.
Bill Peckham recently celebrated ten years of home hemodialysis, nine of which have been self dialyzing home alone. The benefits of home dialysis far outweigh any associated risks especially when compared to the risks of standard care. In the time Bill has been dialyzing self sufficiently, he has accomplished more than many people accomplish with intact kidneys. This is a picture of Bill dialyzing on board his boat that he captained north of Seattle. For the average nephrologist practicing in America, Bill would be a nightmare of medical legal risk in their skewed views of the usual dialysis patient. Living a life well is a goal all of us have. Adding the burden of renal disease makes this endeavor a daily struggle, but the example that Bill has set for the entire renal community should not go unnoticed. I must confess that the idea of strapping a generator and a dialysis machine to an inflatable white water raft going down the Rogue River is not my idea of a self care dialysis unit. But the truth is that this is not only possible, but it is safe. In fact, dialyzing on terra firma with a generator in many ways is much safer than floating down a wild river on a piece of rubberized plastic. (here)
With the resurgence of home hemodialysis after decades of suboptimal dialysis care languishing in for-profit dialysis units, the plight of those who are capable of self care yet are hindered by arbitrary standards requiring a care partner is a cause worth fighting. It is time to evaluate the stable dialysis patient and note that life itself is not risk free, but it is worth living well. For patients on dialysis, living well in many ways means taking charge of your own care at home. As the market place opens the door to thousands of new home hemodialysis patients, the American dialysis industry needs to grow with their patients as they overcome their own fears and anxiety inherent in doing self care. The last issue a patient needs in this circumstance is physicians and providers more concerned about their own anxiety over dialysis. The reality is that dialysis can be safe and stable even when dialyzing home alone not only in Canada, England or Australia, but right here in the United States as well.