Asking Kidney Patients to Forgo a Free Lifeline
By GINA KOLATA
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. 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 that 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.”
“What choice do you really have?” he asked.
When Congress established the entitlement to pay for kidney patients in October 1972, dialysis and transplants were new procedures that were not covered by health insurance. There were horrifying stories — rich people got dialysis and lived while poor people died. In Seattle, a committee meted out dialysis by voting on who could get it. A man who was supporting a family, for example, took precedence over a single woman.
It also was expected at that time that fewer than 40 patients per million would need dialysis, and that most of those patients would be healthy — except for their failed kidneys — and under age 54.
Now more than 400 people per million start dialysis each year. More than a third of the patients are 65 or older, and they account for about 42 percent of the costs. People over 75 make up the fastest-growing group of dialysis patients. And most elderly dialysis patients have other serious diseases like diabetes, heart failure, stroke and even advanced dementia. One-third of them have four or more chronic conditions.
The federal program, said Dr. Peter S. Aronson, a professor of nephrology at Yale University’s School of Medicine “is so emblematic of good intentions misapplied.”
“The question,” Dr. Aronson said, “is how to dial it back.”
Recent studies have found that dialysis does not prolong life for many elderly people with other serious chronic illnesses. One study found that the procedure’s main effect is to increase the chances that such patients will die in the hospital rather than at home.
Meanwhile, costs are soaring — end-stage kidney disease will cost the nation an estimated $40 billion to $50 billion this year. And doctors are recommending dialysis sooner, even though recent studies have found that an early start confers no additional benefit.
Even so, Ms. Armistead said, when patents are ready to choose “medical management,” family members often struggle with the decision.
It also can be difficult to make some patients understand the gravity of their disease or their choices, said Barbara Weaner, a nurse practitioner at West Virginia University who works with dialysis patients.
“We live in a country where there is a lot of choice, where people tend to be afraid of dying and where palliative treatment is not always recognized as a good alternative,” Ms. Weaner said.
Her patients at the Elkins clinic illustrate her point. Those who are old and very sick often have a choice — they can have “medical management” without dialysis or they can have dialysis, which might fail to improve their lives. But for many, the first choice is not acceptable.
One patient, a 78-year-old woman whose name is being withheld, was not a good candidate for dialysis, her doctors said. She has complications from diabetes, high blood pressure, a heart valve problem and severe coronary artery disease. Her medical problems were so grave that dialysis was likely to lead to a series of medical interventions — hospital stays, drugs and doctor visits — but would not necessarily prolong her life. And her doctors told her that.
But she insisted on dialysis, saying, “Some life is better than no life.” In the seven months she has been on dialysis, she has been hospitalized four times, including twice for heart surgery.
“I go to dialysis because I want to live,” she said in a telephone interview. “I want dialysis.”
