Surfing, camping and deciding when to stop: Australia's people-centred approach to dialysis (2023)

andIn 1972, when Congress promised dialysis and rehabilitation for all kidney failure patients in America, Australia passed its own law guaranteeing universal dialysis coverage. Since then, Australia and America have followed very different paths, in dialysis and in healthcare as a whole.

Most leading nephrologists in the world agree that dialysis should ideally be performed in long, frequent sessions at low ultrafiltration rates and carefully tailored to the individual patient's physiology. In contrast, the big dialysis companies often use what John Agar, an Australian nephrologist, calls "bazooka dialysis": treatment in short, rapid bursts according to a one-size-fits-all protocol. Nephrologists who order longer treatments or make other adjustments to their patients' dialysis prescriptions may encounter obstruction from clinic management.

The treatment philosophy that Agar followed for decades until his retirement in 2020 emphasizes quality of life as the main goal of good dialysis and home care as the best option for most patients. Today it is practiced in centers throughout Australia and New Zealand. Columbia-Presbyterian nephrology specialist Leonard Stern's dream of high-quality home dialysis for the masses is already a reality, Down Under.

Many of Agar's patients dialyze at home, not because they live in the bush - a higher percentage of Australians than Americans live in cities - but because they have developed the independence and confidence needed to treat themselves. Agar, his fellow nephrologists and his team of nurses train patients to insert themselves and operate their own machines according to a treatment plan that best suits their individual physiology and lifestyle. (Nurses and technicians are always on hand should patients run into problems.) For most of Agar's patients and their families, dialysis is less of an alien ordeal than an everyday challenge. "Our patients take responsibility for their own health," he says. "We don't even allow their partners to cannulate. In fact, most of our home dialysis patients, if someone comes near their fistula, will hit them with a cricket bat. 'Get away from my fistula! I'm the only one who cares about that." Patients gain a tremendous sense of responsibility and achievement. They are not helpless victims in this process. They are in charge.”

He introduces me to Dale Darcy, who has been his patient for 24 years. “Dale is a real gun,” says Agar. “He's a bit cheeky at times, although I tend to encourage him to push the boundaries. And Dale knows the limits of my limits!"

On Zoom with Darcy at his suburban Geelong home, his two young daughters drift in and out of frame and his wife, Michelle, stops to greet him on her way out. Darcy works as an engineer and foreman in a zoo that is part of the Royal Melbourne Zoo. "I love petting the rhinos, but my biggest thrill is making a door that can hold them." When he first started dialysis, Darcy put his dialysis machine, generator and tent in the bed of his ute (Australian for pickup) and went swimming and pig hunting on the Murray River for a week at a time. When he needed dialysis, he hammered a nail into a tree and hung dialysis bags on it. He has stopped camping at Murray since his children arrived, but still trains jujitsu as a brown belt. “I have a fistula in my hand, so I have to be careful. Sometimes they put me in a hand bar. When that happens, I just have to press.”

Darcy's knowledge of his body and the warning signs of his illness is astonishing. "When I have high potassium, I see these blue stars when I close my eyes. No one would believe me if I told them, but that just means they haven't done a medical study to prove it—I know that it's high potassium. And I can tell from the fistula that I have high blood pressure because it's hard as a rock. If I have more fluid, I get puffiness under my eyes. And when it shakes, I know I have an infection, and it's straight to the hospital."

I ask him if it was difficult for him to learn to cannulate himself: to insert the long needles into his own hand. "Well, I already knew it hurt because the nurses did it to me," he replies. "So I thought, 'Well, it's still going to hurt, but now I'm in control. If it hurts too much, I can pull back a little bit, whereas the nurses wouldn't — they'd just push.' So you just have to get over it mentally.”

Another of John Agar's patients, Andrew O'Dwyer, was a windsurfer who lived in Anglesey, a town on the Surf Coast southwest of Geelong. He surfed every day as conditions allowed, sometimes twice a day. "I was always aware that his fistula might not heal properly since he is wet all the time," Agar says today. "But he said, 'Look, John, I just put a patch on,' and that was it. He knew he was taking a risk, but he kept surfing. He was on home dialysis for 10-12 years. And he was surfing all that time."

"That's the beauty of home dialysis: being willing to trust your patient," Agar continues. "And trust comes from both sides. The patient has to be able to trust himself and build his own confidence in what he's doing. But the care team also has to be willing to let go and let the patient learn and sometimes make mistakes. To build this mutual trust, I think doctors and patients need to feel that they are on the same level: just two people working together to get a good result, which I feel is often missing from dialysis in The United States and American medicine in general. American doctors are very conscious and indeed quite jealous of their exalted status and are worshiped as gods by their patients."

Andrew O'Dwyer, surfer, died while undergoing dialysis at home. The Coroner for the State of Victoria concluded that he had set his machine incorrectly. "Andrew lived on his own terms and dealt with his illness on his own terms," ​​says Agar. "Home dialysis gave him the freedom to do that. I don't think he would have things any other way."

Dialysis done right is a series of choices, guided by the care team but ultimately made by the patient. Including a final choice: When to stop. Agar remembers Edna Kent, an elderly Irish Australian patient he treated for 18 years. Shortly before her 86th birthday, after her husband and all other close relatives passed away, Kent announced that she wanted to stop dialysis treatment.

"Of course, I talked to Edna about it for months to make sure she understood what she was doing," says Agar. "But she was unmoved. She said she did everything she ever wanted to do except die well."

In a series of conversations it's hard to imagine taking place in an American facility, Agar and Kent planned how her life would end. "She said she wanted an Irish guard and would arrange one," says Agar. "She invited all her friends, including her nurses Rosie and Janeane, and everyone else at the clinic. She bought star fruit, bananas, papaya - all forbidden fruits for dialysis patients because of their high potassium levels. She threw us a potash party! She must have ate a dozen starfruits. We talked, laughed, reminisced. She lay on the bed and said goodbye. People cried. I frolicked shamelessly. But many of us smiled too. In a few hours she quietly fell into a coma and died. Edna chose the exit myself and left in style."

Tears glisten in Agar's eyes as he recalls the scene. "Yeah, look," he continues at last, his voice rough, as if trying to hide his emotions. "We allow people to dialyze to live, instead of living to dialyze."

Edna Kent's decision and the way she carried it out is reminiscent of the ancient Stoics who believed that the ability to decide how our lives will end is essential to human freedom and dignity. "What is freedom, you ask?" wrote Seneca. "To be a slave to no situation, no need, no random events." For Seneca and other Stoics, keeping the "door open" to the Beyond and choosing the right moment to pass through it was an integral part of a life well lived. But with such a grand Mediterranean atmosphere, there is also a solemn impression of Edna Kent's Irish Guard, a sprinkling of wit and star humor worthy of Flann O'Brien or Oscar Wilde, who in the last act of his life shows a rare kind of courage. Courage that not only overcomes the fear of death, but also affirms a strong love for life.

Extracts from "How to Make a Killer: Blood, Death, and Dollars in American Medicine” by Tom Mueller. Copyright 2023 Tom Mueller. Used by permission of the publisher, W. W. Norton & Company, Inc. All rights reserved.

Tom Mueller's writing has appeared in The New Yorker, National Geographic, The New York Times Magazine and The Atlantic. He is the author of the New York Times bestseller "Extra Virginity" about food fraud and "Crisis of Conscience" about whistleblowers and their enemies.