In my opinion, many people are started on dialysis too early in their kidney failure. Dialysis should be avoided as long as possible. In recent years, doctors have begun starting patients on dialysis earlier and earlier, in the hope of thereby reducing some of the complications of dialysis. Because it has been demonstrated repeatedly that late referral by a primary care doctor to a nephrologist increases the subsequent morbidity and mortality of patients, some doctors have inferred that patients who see a nephrologist earlier and go on dialysis sooner will fare better.
Not so. The issue has been obscured by the fact that late referral to a nephrologist often means urgent initiation of dialysis, which is well known to increase death rates. In fact, when patients who are already under a nephrologist's care are started on dialysis late (that is, with relatively advanced kidney failure) are compared with those started earlier (that is, with relatively mild kidney failure), no difference in mortality has been demonstrated.
Predialysis care is considerably safer than dialysis. Furthermore, patients approaching dialysis who have not been told about the dietary treatment plan (as outlined in this book) should be told that this option can safely defer dialysis for an average of a year. Failure to inform patients of this alternative treatment is indefensible.
It is often assumed that dialysis makes people feel better. But this is not always the case. Birgitta Klang and Naomi Clyne in Stockholm measured perceived well-being and functional capacity in 28 patients before and after starting dialysis. They found that, after starting dialysis, fatigue, lack of energy, and functional disability in work increased.
It is also widely assumed that dialysis improves objective measures of kidney disease. These measures can be summarized by the scoring method given in Chapter 5. Obviously when a person whose score is very low is placed on dialysis, he or she is going to achieve a higher score, because the patient is no longer being neglected. Attributing this improvement to dialysis is unjustified. When a person whose score is already very high is placed on dialysis, his or her score cannot improve. This dilemma is hard to resolve. There is no easy way to find out just what starting dialysis does to objective measures of kidney disease.
In my opinion, dialysis should never be undertaken unless the symptoms are sufficiently severe that they will be improved by dialysis. As noted in other chapters, severe fatigue, muscle cramps, and shortness of breath may occur as kidney failure reaches the end stage. Another complication of severe kidney failure that may precipitate dialysis is inflammation of the covering of the heart, the pericardium. This causes severe chest pain and also may aggravate heart failure, and can be treated only by dialysis. As you approach the end stage, you will need to be closely monitored with respect to these symptoms. Obviously this will require you to see your doctor every week or so, but predialysis care is considerably safer than dialysis.
Establishing any benefit to starting dialysis earlier will require a randomized study. It also will require that predialysis mortality be at least comparable to dialysis mortality, which seems highly unlikely.
One of the most consistent advocates of early dialysis published a study comparing mortality on dialysis in two groups of patients: those started at a serum creatinine concentration of less than 10 mg per dl versus those started at a serum creatinine concentration of greater than 10. No difference in mortality during the ensuing 60 months was seen. Perhaps the most striking feature of this study is that the two survival curves are just as close in the first year as they are thereafter. In other words, patients starting dialysis at a serum creatinine level under 10 mg per dl began to die within the first few months. Since this was not a randomized comparison, it fails to validate early or late dialysis.
What is certain is that the mortality of dialysis is many times greater than the mortality of predialysis care. Three studies have now been reported in which the mortality of predialysis care is documented; all three report a predialysis mortality of close to 2.5 percent per year. These studies cannot be definitive, since predialysis mortality obviously will increase as renal failure progresses, especially if dialysis is deferred too long. If dialysis is deferred indefinitely, mortality of predialysis is obviously 100 percent. National statistics give the mortality of people on dialysis as approximately 23 percent per year.
One of the most remarkable policies recently recommended by some nephrologists is to start dialysis if a patient's protein intake falls. It has been known for decades that people with kidney failure tend to shun meat and other high-protein foods as their renal insufficiency progresses, though the explanation of this long-standing observation is not known. It is also well known that protein deficiency, manifested by low serum albumin concentration, is a bad prognostic sign for people starting dialysis; it predicts shorter survival. These nephrologists have put these two observations together and inferred that anyone whose renal failure is so bad that they shun meat must be in danger of developing protein deficiency and should therefore be started on dialysis forthwith.
The problem here is that the nephrologists are overlooking other highly relevant observations. Most important, it has been well established that the only way to prevent low serum albumin concentration in patients approaching ESRD is to restrict dietary protein severely and to add a supplement of essential amino acids (or their keto-analogues), as I have emphasized repeatedly in this book. The progressively falling intake of meat by patients approaching the end stage is accompanied by progressive loss of appetite and falling caloric intake. The fall in serum albumin concentration is attributable in part to low caloric intake and in part to inflammatory processes of unknown origin. Whatever these inflammatory processes may be, they seem to be prevented by a supplemented very-low-protein diet.
Dr. William E. Mitch, a well-known nephrologist, has put it well: "Evidence that dietary protein spontaneously decreases in progressively uremic patients should not be construed as an argument against the use of dietary therapy. Rather, it is a persuasive argument to restrict dietary protein in order to minimize [chronic renal failure] complications while preserving nutritional status. In patients with uremia or progression despite other measures, dietary therapy should be started along with monitoring for dietary compliance and nutritional adequacy."
The tacit assumption that an increase in protein intake will improve protein nutrition has never been confirmed experimentally, even though this experiment could be easily performed. A more probable result of higher meat intake is further loss of appetite, perhaps with nausea and vomiting, and a further decrease in caloric intake, thus aggravating malnutrition and reducing serum albumin concentration even further.
Placing a patient on dialysis because he or she spontaneously consumes a relatively small amount of protein is utter folly. The "wisdom of the body" in this instance is greater than the wisdom of the physician. How this cockeyed theory could have been incorporated into the official guidelines for managing renal failure, promulgated by the National Kidney Foundation, is an interesting question. The chairman of this committee was J. D. Kopple, who also is a coauthor of a 1999 editorial "Should Protein Intake Be Restricted in Pre-Dialysis Patients?" that concludes "with rare exceptions, patients with CRF [chronic renal failure] should receive a trial of a protein-restricted diet before being started on dialysis." It is difficult to understand how Dr. Kopple could reconcile these two divergent views.
Physicians like me who work with predialysis patients and try to defer or avoid dialysis are vulnerable to being accused of waiting too long before starting dialysis and thus putting our patients in jeopardy in some ill-defined way. In order to escape this charge, I have been obliged to adopt the following policy: I have made none of the decisions to initiate dialysis (or transplantation) in my current series of patients; the patient's chosen dialysis (or transplant) physician made all these decisions.
Sometimes these decisions are made by one of the local teams here at Johns Hopkins, in which case their decisions are usually soundly based. But when the decision is made elsewhere, the patient sometimes encounters difficult and prolonged arguments. A major difficulty for pre-dialysis patients may be persuading nephrologists to defer dialysis until symptoms clearly indicate it. On the other hand, a few of my patients have become so convinced of the value of dietary therapy or so much in denial that they defer dialysis too long and develop complications.
Remember, it's your body and your choice. You can solicit opinions from your healthcare team, but it's your body and you know best how it's doing. There is an inherent conflict between wanting to cooperate with and trust the physician who will be in charge of your future care and wanting to avoid unnecessary risk. Every patient approaching end-stage kidney disease faces this challenge.
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A time for giving and receiving, getting closer with the ones we love and marking the end of another year and all the eating also. We eat because the food is yummy and plentiful but we don't usually count calories at this time of year. This book will help you do just this.