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Even before Georgia Outlaw met her new nephrologist, she had made her decision: Although her kidneys were failing, she didn’t want to begin dialysis.
Ms. Outlaw, 77, a retired social worker and pastor in Williamston, N.C., knew many relatives and friends with advanced kidney disease. She watched them travel to dialysis centers three times a week, month after month, to spend hours having waste and excess fluids flushed from their blood.
“They’d come home weak and tired and go to bed,” she said. “It’s a day until they feel back to normal, and then it’s time to go back to dialysis again. I didn’t want that regimen.”
She told her doctors, “I’m not going to spend my days bound to some procedure that’s not going to extend my life or help me in any way.”
Ms. Outlaw was mistaken on one point — dialysis can prolong the lives of patients with kidney failure. But a new study published in the journal Annals of Internal Medicine analyzed data from a simulated trial involving records from more than 20,000 older patients (average age: about 78) in the Veterans Health Administration system. It found that their survival gains were “modest.”
How modest? Over three years, older patients with kidney failure who started dialysis right away lived for an average of 770 days — just 77 days longer than those who never started it.
“I think people would find that surprising,” said Dr. Manjula Tamura, a nephrologist and researcher at Stanford and a senior author of the study. “They would have expected a greater difference.”
Moreover, those patients spent less time at home; they were in a hospital, a nursing home or a rehab center for about 15 more days than those who never started dialysis.
Another group didn’t begin dialysis early but continued with “medical management” (which could help alleviate symptoms if needed), though half of them started dialysis at some later point. They lived for about the same amount of time as those who started dialysis right away.
“Our field has really been debating about the role of dialysis in patients who develop kidney disease in old age,” Dr. Tamura said. “It’s lifelong therapy and a major change to your lifestyle. It can lengthen life, but there are trade-offs.”
About a third of the population over age 65 have chronic kidney disease, according to the U.S. Renal Data System. The pluses and minuses of treatment add up differently for them than for younger patients.
Among older adults who progress to kidney failure, most also have diabetes and many have heart failure, pulmonary disease or other serious chronic illnesses. They may not be candidates for transplants, the only cure for kidney failure, either because they’re too ill or frail for surgery, or because the wait for donated kidneys can be yearslong.
About 13 percent of the patients with kidney failure who register with the Renal Data System begin peritoneal dialysis at home — a more common treatment in other countries but one that, with Medicare incentives to providers, is gaining ground in the United States, too. It involves filtering blood through the abdominal lining.
But a great majority, almost 84 percent in 2021, still turn to dialysis centers, despite the challenges of transportation and the significant time commitment.
Hemodialysis, the treatment offered in centers, requires a catheter, graft or fistula to allow access to a patient’s blood vessels, and it can cause side effects like infections, fatigue and itching. And, as the new study indicates, dialysis often means more time spent in health care centers, where most older adults don’t want to be.
The alternative to dialysis goes by various names — medical management, conservative kidney management, supportive kidney care. In this scenario, nephrologists monitor their patients’ health, educating them about behavioral approaches, prescribing anti-nausea drugs like Zofran and diuretics like Lasix to reduce fluid retention, and adjusting their doses as needed.
Ms. Outlaw, for example, takes a diuretic, two blood pressure drugs and a phosphate binder, along with iron and calcium. Five years after her kidney failure diagnosis, she’s feeling fine, though sometimes a little weak or tired, she said. She still preaches once a month at Manifestation Church of Holiness in the neighboring city of Greenville.
Not everyone in conservative management remains that active. “Some of my other patients are in wheelchairs,” said Dr. Rasheeda Hall, a geriatric nephrologist who provides conservative care for Ms. Outlaw and others at the Durham VA Health Care System.
“They’re more complicated — we have to pay a lot more attention,” she said. “But they sleep in their own beds. They’re not in the hospital a lot. They have a better quality of life.”
Some older kidney patients find that strategy preferable, even if death should come a couple of months earlier.
Often, however, “if you ask patients, ‘Were you presented with a choice?’ many of them will say no,” Dr. Tamura said.
Dialysis “is definitely still the default,” Dr. Hall said. When she meets with older patients, “I say, ‘You know, dialysis is not the only thing — there are medications we have in our arsenal that can help,’” she said. “And they say, ‘Oh.’”
That response appears commonplace. Researchers at the University of Washington developed a “decision aid” — a booklet explaining conservative kidney management and its pros and cons — and tried it out on patients 75 and older with advanced kidney disease and their families. The goal: to prompt discussion of conservative management with a health care provider.
In the groups that received the booklet, about a quarter of patients and their relatives had such conversations. But among those who didn’t get the booklet, only 3 percent of patients discussed conservative management with a provider, and none of their family members did.
“I was quite pleased” with the results, said Dr. Susan Wong, a nephrologist and lead author of the study. “It can be intimidating for patients to bring up alternatives when a provider is pushing or recommending or positioning dialysis as the only right thing to do.”
In her clinic, she said, about a third of patients go to dialysis centers, a third begin dialysis at home and a third opt for conservative management without dialysis.
Practices are shifting somewhat among kidney patients and their doctors. The most recent statistics from the Renal Data System, for instance, show that the use of peritoneal dialysis at home more than doubled from 2008 to 2021; the proportion of patients traveling to dialysis centers declined.
“Several things in the kidney world appear to be getting better,” said Dr. Kevin Abbott, program director in the division of kidney, urologic and hematologic diseases at the National Institute of Diabetes and Digestive and Kidney Diseases.
The proportion of older Americans with kidney disease has fallen, in part reflecting the wider use of more effective blood pressure drugs in recent decades, he said. The new diabetes drugs that help reduce weight and blood sugar also show promise for treating kidney disease.
But it still often falls to patients themselves and their families to question whether they want to start dialysis, to ask about other options like conservative kidney management, and to weigh their choices.
If they’re waiting for health care professionals to alert them to the alternatives, they may have to wait quite a while.
Ms. Outlaw’s decision owed much to her spiritual beliefs. “I’ve had a good life, and I am still enjoying it,” she said. But “if I pass away, I know where I’m going. My relationship with the Lord is good.”
Like any kidney patient, she can always change her mind about treatment. But she insisted that she would not. “The Lord is taking care of me,” she said. “Dialysis is not in my future at all.”
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