John Everdell had lived most of his life with kidney disease. As a young man awaiting a transplant, he had briefly undergone dialysis. That’s how he knew, when the prospect of kidney failure loomed again in his late 60s, that he would refuse dialysis this round.
“He was a very independent man, with an idea of how he was going to live his life,” said Trix Oakley, his partner of 22 years.
“He didn’t want to be tied down to the routine, having to report to the dialysis clinic every other day. He didn’t like the ups and downs — feeling good but washed-out, then feeling crummy. He didn’t like being attached to the machine.”
A woodworker and furniture- maker, Everdell had been in his 30s when he was first diagnosed with kidney disease. By his 60s, he had received two transplants, with kidneys donated by his siblings.
But in recent years, living in Cambridge, Mass., he and Oakley could see that his second transplanted kidney was faltering. The readings on his monthly blood tests grew troubling; he felt cold and tired; his hands and feet began to swell. His doctors again suggested dialysis.
Instead, with Oakley’s help, he relied on what’s often called “conservative management,” which helps slow the disease’s progression and treats its symptoms and complications. He followed a careful diet, controlled his blood pressure, avoided weight gain and gave himself hormone injections to ward off anemia. A sister offered her kidney for a third transplant, when needed.
In the meantime, he and Oakley enjoyed road trips, particularly seeking out ferry routes from Canada to Florida. Everdell, who had once sailed across the Atlantic, was no longer strong enough to handle a boat, Oakley said. “So we took as many ferries as we could, because he loved being on the water.”
Developed as a temporary measure to keep patients with kidney disease alive until they could receive transplants, dialysis instead often becomes a way of life. More than 104,000 people over age 75 were receiving dialysis in 2016, the United States Renal Data System has reported; so were more than 130,000 patients ages 65 to 74.
It is a safe bet most never learned about an alternative: managing their disease and its symptoms medically, with frequent physician monitoring and consultation — but without dialysis.
Dialysis prolongs survival, but it also imposes burdens — like traveling to a clinic three times a week for four-hour sessions of hemodialysis, or doing multiple fluid exchanges daily for peritoneal dialysis, which can be performed at home. Conservative management can help patients avoid those routines.
Moreover, while some studies show that older patients undergoing dialysis survive longer than those using conservative management, those differences fade among people over age 75 who also contend with other serious health problems, as most do.
And survival, of course, is not the only thing patients value. Conservative management may allow greater freedom to pursue what matters to them, even if they live fewer weeks or months.
“Dialysis is a life-changing event,” said Dr. Susan Wong, a nephrologist at the Veterans Affairs Health Services Research and Development Center in Seattle and lead author of a new study in JAMA Internal Medicine. “It’s a very demanding form of treatment. It involves medical issues, spiritual issues, quality of life. It’s a big decision.”
Yet patients often tell researchers they do not recall making a decision, or even discussing one. Physicians frequently present dialysis as inevitable; in a small study of nephrologists, only a third routinely informed patients about conservative management.
“Patients didn’t recognize it as a choice — ‘My doctor told me I’d die if I didn’t do dialysis,’” said Keren Ladin, director of an aging and ethics program at Tufts University, who has interviewed both patients and nephrologists. “Or they’d say that it wasn’t their choice, that their doctor made the choice.”
Those patients might have wanted to know, for example, that at the end of life, patients using conservative management were less likely to be hospitalized than dialysis patients, less apt to undergo aggressive procedures, and less likely to die in a hospital.
Yet doctors frequently doubt that decision, according to Wong’s new study of 851 Veterans Affairs patients who declined dialysis. Medical records showed doctors questioning patients’ competence, pushing them to change their minds.
“Most were skeptical,” Wong said of the doctors’ responses. “It’s a relatively unusual decision, and providers find it suspect.”
Other developed countries take a different approach, especially at advanced ages. Among patients over age 85 with failing kidneys, fewer than 7 percent received dialysis in Canada, a large retrospective study has shown, and fewer than 5 percent in Australia and New Zealand.
In the United States, by contrast, a 2016 study of Veterans Affairs patients found more than 40 percent of those over age 85 with advanced kidney disease received dialysis.
Lyman Dally was nearly 92 when a fall in his South Orange, N.J., home led to kidney failure in 2013. In the emergency room, doctors started dialysis.
“After a week or two, he decided, ‘This is not the way I want to live. It’s painful and it’s tiring,’” said his son, also Lyman Dally.
The elder Dally discontinued dialysis, telling his son that he’d had a wonderful life. He died two weeks later.
Medicare and other insurers help propel reliance on this treatment. “Our financial incentives are all about putting people on dialysis,” said Dr. Alvin Moss, a nephrologist and palliative care specialist at West Virginia University School of Medicine.
Low reimbursement for monthly office visits to supervise conservative management might doom a practice financially. But Moss and other researchers also suspect that “conservative management” implies lack of care.
Perhaps, they have suggested, the approach needs rebranding as “active medical management” or “comprehensive supportive care.”
Most doctors not receptive
For now, patients interested in conservative management, or whatever we decide to call it, will not find supportive doctors easy to locate.
A few nephrologists have launched programs at New York University, the University of Washington, the University of Rochester and UPMC in Pittsburgh, among other medical centers.
Elsewhere, Moss suggests seeking out palliative care specialists. Patients should also document their preferences for conservative measures in advance directives, including state POLST (Physician Orders for Life Sustaining Treatment) forms.
Organizations like the Coalition for Supportive Care of Kidney Patients and the American Association of Kidney Patients have useful websites. Moss also recommends a Canadian site, Conservative Kidney Management.
Conservative management helped John Everdell take a lot of ferry rides.
But last spring, after years of managing his disease conservatively, Everdell, 69, was hospitalized with heart failure, a common illness in kidney patients. That ruled out a third transplant as his donated kidney failed.
He agreed to give peritoneal dialysis a try. “If you hate it, you can stop,” Oakley told him.
But Everdell developed a serious infection. When his doctors advised switching to daily hemodialysis, “He said no, he didn’t want to live that way,” Oakley said. He explained his decision to his doctors, his sisters and his best friend.
He died at Tufts Medical Center in May, two months after entering the hospital and two days after refusing dialysis for the final time. His partner said he had no regrets.