Two other topics need to be addressed, unpleasant though they are: withholding of dialysis and withdrawal from dialysis. Either is fatal within a few weeks.
Withholding dialysis obviously comes up for discussion only when the burdens of dialysis treatment are expected to exceed its benefits. It is not hard to imagine circumstances under which this could be true. Dementia, multisystem disease including cancer, and extreme old age come to mind. In the early days of chronic dialysis, people over a certain age were automatically refused government-subsidized dialysis in Great Britain and other countries, and this issue keeps coming up. For a time people with diabetes were turned down. Present practice in the United States is to accept just about anybody. Clearly some of the people being placed on dialysis cannot be expected to receive much benefit from it.
Withdrawal from dialysis, which is an even thornier issue, is very common. As noted earlier, the official U.S. government report for 1999 on dialysis nationwide states that "1 in 5 patients withdraws from dialysis before death." Many other publications confirm this. Sometimes the reasons are understandable, but sometimes people just want to quit. The appropriate response for the physician is not always obvious. In general, first the patient's mental competence is assessed. Then the patient's "surrogate," meaning a next of kin or someone else designated as a decision maker for the patient, is consulted. The surrogate may (and often does) disagree with the patient's decision. The courts may get involved. If dialysis continues, and at some later date the patient expresses gratitude, everyone agrees that continuance was the right decision. But this may not occur.
If you do have to go on dialysis, you may want to read Kidney Failure: The Facts, by Dr. Stewart Cameron, a distinguished British nephrologist, published by Oxford University Press in 1996. Although it is out of print, you may be able to get it through your library. It is far and away the best book for patients on this topic.
The question of when to start dialysis and whether to try to postpone it by dietary treatment will never be settled until someone completes a study in which patients are assigned by chance to start dialysis early or to try to defer it by dietary therapy. Such a study has begun in Italy, comparing the survival on dialysis of two groups of elderly patients with end-stage kidney disease: One group was started on dialysis late (average creatinine clearance only 3.9 ml per min, considerably lower than the average creatinine clearance at the start of dialysis in the United States), after an average of 14 months on a supplemented very-low-protein diet; the other group was started directly on dialysis (average creatinine clearance 6.7 ml per min). So far, in the first group, 60 percent were still alive after 4.6 years of dial ysis; in the second group, all had died by that time. This finding seems to suggest that predialysis treatment with a low-protein diet improves long-term survival.
A second trial has been started in Italy by the same group, in which older patients who meet the accepted U.S. criteria for starting dialysis are assigned by chance either to start dialysis (at one of several centers) or to undertake a very-low-protein diet supplemented by a mixture of ketoacids and amino acids. The latter group is then followed until dialysis becomes necessary, and the long-term outcome of the two groups is compared.
An immediate problem for the doctors planning this trial is: What are the criteria that make dialysis necessary in those on diet therapy?
I have examined the criteria proposed by these researchers. Clearly they are very sensitive to any possible criticism that they may be withholding dialysis in patients on dietary therapy.
A simple and generally useful criterion for starting dialysis is the presence of symptoms that can be expected to improve on dialysis. This criterion would exclude high blood potassium (which can always be treated; see Chapter 12) and almost every instance of hypertension (almost always, a combination of drugs will lower blood pressure into the desired range; see Chapter 9). Others have included "intractable" acidosis; this simply means that the patient has not consumed enough alkali (see Chapter 10). (Sodium retention secondary to alkali administration can always be treated by diuretics.)
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