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.”
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; so were more than 130,000 patients ages 65-74.
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.
With Oakley’s help, Everdell 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.
In the meantime, he and Oakley enjoyed road trips, particularly seeking out ferry routes from Canada to Florida. Everdell 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.”
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.
When his doctors advised switching to daily hemodialysis, Oakley said, “He said no, he didn’t want to live that way.” He died two days after refusing dialysis for the final time. His partner said he had no regrets.
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.
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.
For now, patients interested in conservative management will not find supportive doctors easy to locate. Organizations like the Coalition for Supportive Care of Kidney Patients and the American Association of Kidney Patients have useful websites.
“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.”
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; so were more than 130,000 patients ages 65-74.
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.
With Oakley’s help, Everdell 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.
In the meantime, he and Oakley enjoyed road trips, particularly seeking out ferry routes from Canada to Florida. Everdell 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.”
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.
When his doctors advised switching to daily hemodialysis, Oakley said, “He said no, he didn’t want to live that way.” He died two days after refusing dialysis for the final time. His partner said he had no regrets.
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.
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.
For now, patients interested in conservative management will not find supportive doctors easy to locate. Organizations like the Coalition for Supportive Care of Kidney Patients and the American Association of Kidney Patients have useful websites.
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