Of all the terrible chronic diseases, only one —end-stage kidney disease — gets special treatment by the federal government. A law passed by Congress 39 years ago provides nearly free care to almost all patients whose kidneys have failed, regardless of their age or ability to pay.
But the law has had unintended consequences, kidney experts say in a New York Times story. It was meant to keep young and middle-aged people alive and productive. Instead, many of the patients who take advantage of the law are old and have other medical problems, often suffering through dialysis as a replacement for their failed kidneys but not living long because the other chronic diseases kill them.
Kidney specialists are pushing doctors to be more forthright with elderly people who have other serious medical conditions, to tell the patients that even though they are entitled to dialysis, they may want to decline such treatment and enter a hospice instead. In the end, it is always the patient’s choice.
One idea, promoted by leading specialists, is to change the way doctors refer to the decision to forgo dialysis. Instead of saying that a patient is withdrawing from dialysis or agreeing not to start it, these specialists say the patient has chosen “medical management without dialysis.”
“That is the preferred term,” said Nancy Armistead, executive director of the Mid-Atlantic Renal Coalition, a Medicare contractor who collects data and patient grievances.
The phrase, she says, “acknowledges that death is imminent,” but it also sends an important message: “We are not just sending people home to die. We are offering palliative care.”
A committee of the Renal Physicians Association recently formulated guidelines to use in deciding when dialysis is appropriate. It provides questions that doctors should ask themselves before suggesting the treatment. One is the “surprise” question: Would I be surprised if this patient is dead within a year?
But, said the committee’s chairman, Dr. Alvin H. Moss, a nephrologist and ethicist at West Virginia University, the task ahead is like turning around an ocean liner.
“Clearly, when the program was initiated in the 1970s, the hope and expectation was that this program would return otherwise healthy people back into society so they could work and be productive,” said Dr. Manjula Kurella Tamura, a kidney specialist at Stanford. But, she added, “dialysis at the end of life is a different sort of treatment.”
Dialysis is difficult, especially for the old and sick. Most of the nation’s 400,000 dialysis patients spend several hours, three days a week, hooked up to a machine, and additional time traveling back and forth to the clinic.
They have to restrict salt and fluids, and the procedure is so exhausting that some patients rest for the remainder of the day. Although dialysis may alleviate symptoms like fluid accumulation in the legs or lungs, it can lead to dizziness, weakness, leg cramps, nausea and other problems.
Complications like bloodstream infections or clogged blood vessels where the dialysis needles are placed are common, often requiring surgery or hospital stays. Ultimately, about one patient in five is unwilling to go on with it.
Yet it can be hard to say no.
An 84-year-old man being treated at a clinic in Elkins, W.Va., run by West Virginia University has been counseled against dialysis. He has high blood pressure and severe congestive heart failure, a condition as lethal as terminal cancer.
His heart problems make it hard for him to breathe, and he is often in the hospital. In a telephone interview, the man said he saw friends suffer on dialysis and always thought he would refuse it. But he is getting ready to start anyway. The man, whose name is being withheld to protect his privacy, says he changed his mind after he “sat and thought about how good life is.”