Surfing, camping, and deciding when to stop: Australia’s human-centric approach to dialysis (2023)

First Opinion

By Tom MuellerAug. 25, 2023

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Surfing, camping, and deciding when to stop: Australia’s human-centric approach to dialysis (1)

In 1972, as Congress promised dialysis and rehabilitation for all kidney failure patients in America, Australia was passing its own law to guarantee universal dialysis coverage. Since then, Australia and America have traveled very different paths, in dialysis and in health care as a whole.

Most leading nephrologists worldwide agree that dialysis should ideally be delivered in long, frequent sessions at low ultrafiltration rates, and be carefully tailored to each patient’s physiology. Large dialysis companies, by contrast, frequently employ what John Agar, the Australian nephrologist, calls “bazooka dialysis”: treatment in brief, high-speed bursts following a one-size-fits-all protocol. Nephrologists who order longer treatments or make other customizations of their patients’ dialysis prescriptions may encounter obstruction by clinic management.

The treatment philosophy that Agar followed for decades, until his retirement in 2020, emphasizes life quality as the main goal of good dialysis and home treatment as the best option for most patients. It’s practiced today at 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.

Related:‘Patients are not hot potatoes’: How the fight over dialysis coverage is putting kidney failure patients at risk

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’ve developed the independence and confidence required to treat themselves. Agar, his nephrologist colleagues, and his team of nurses train patients to cannulate themselves and run their own machines, according to the treatment plan that best fits their individual physiology and lifestyle. (Nurses and technicians are always on call, if patients get into trouble.) For most of Agar’s patients and their families, dialysis is less an alien ordeal than a challenge of everyday life. “Our patients take charge of their own health,” he says. “We don’t even allow their partners to cannulate. In fact, for most of our patients who dialyze at home, if somebody comes near their fistula, they’ll beat him with a cricket bat. ‘Get away from my fistula! I’m the only one who looks after that.’ Patients gain a huge sense of responsibility and accomplishment. They’re not helpless victims in this process. They’re in charge.”

He introduces me to Dale Darcy, who has been his patient for 24 years. “Dale is a real gun,” Agar says. “He’s a bit naughty sometimes, though I tend to encourage his limit-​pushing. And Dale knows the limits of my limits!”

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On Zoom with Darcy in his home in a suburb of Geelong, his two young daughters flit in and out of the frame, and his wife, Michelle, stops by to say hello on her way out the door. Darcy works as an engineer and handyman at a wildlife park that’s part of the Royal Melbourne Zoo. “I like to pat the rhinos, but my biggest thrill is making a gate that can hold them.” When he first started dialysis, Darcy used to load his dialysis machine, a generator, and a tent into the bed of his ute (Aussie for pickup) and go swimming and pig shooting up on the Murray River for a week at a time. When he needed to dialyze, he’d hammer a nail into a tree and hang the bags of dialysate from it. He’s stopped camping on the Murray since his children arrived, but he still practices jujitsu, as a brown belt. “I’ve got a fistula in my arm, so I’ve gotta be careful. Sometimes they’ll put me in an arm bar. When that happens, I just have to tap out.”

Darcy’s knowledge of his body, and the warning signs of his disease, are striking. “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’s high potassium. And I can tell by my fistula when I’ve got high blood pressure, because it goes hard as a rock. If I’ve got extra fluid on, I get puffy under the eyes. And when I get the shakes, I know I’ve got an infection, and it’s straight into hospital.”

I ask if he found it difficult to learn to cannulate himself: to insert those long needles into his own arm. “Well, I already knew it hurt, because the nurses had been doing it to me,” he replies. “So I thought, ‘Well, it’s still gonna hurt, but now I’m in control. If it hurts too much, I can sort of back off a bit, whereas the nurses wouldn’t — ​they’d just push it in.’ So you’ve just gotta get over it psychologically.”

Another of John Agar’s patients, Andrew O’Dwyer, was a longboard surfer who lived in Anglesea, a town on the Surf Coast southwest of Geelong. He surfed every day that the conditions permitted, sometimes twice daily. “I was always conscious of the fact that his fistula might not heal properly, being wet all the time,” says Agar today. “But he said, ‘Look, John, I just put a Band-​Aid on it,’ and that was that. He was aware that he was taking risks, but he continued to surf. He was on home dialysis for 10 or 12 years. And he surfed all that time.”

“That’s the whole beauty of home dialysis: being prepared to trust your patient,” Agar continues. “And the trust comes from both sides. The patient needs to be able to trust themself, and build their own confidence in what they are doing. But the care team also has to be prepared to let go, and let the patient learn, and sometimes make errors. To build this mutual trust, I think doctors and patients need to feel they’re on the same level: just two human beings working together to get a good outcome. That’s what I find is often lacking in U.S. dialysis, and U.S. medicine generally. American doctors are very aware and actually quite jealous of their exalted status, and patients revere them like gods.”

Related:Kidney doctors push to protect patients by including dialysis machines in emergency stockpile

Andrew O’Dwyer, the surfer, died on home dialysis. 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 disease on his own terms,” says Agar. “Home dialysis allowed him the freedom to do this. I don’t think he’d have had things any other way.”

Dialysis done right is a series of choices, guided by the care team but ultimately made by the patient. Including one 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 her other close relatives had passed away, Kent announced she wanted to stop her dialysis treatments.

“Of course, I talked it over with Edna for months, making sure she was clear on what she was doing,” says Agar. “But she was immovable. She said she’d done all she had ever wanted to do, except to die well.”

In a series of conversations that it’s hard to imagine taking place in a U.S. facility, Agar and Kent planned how her life would end. “She said she wanted an Irish wake, and she was going to host it,” Agar says. “She invited all her friends, including her nurses Rosie and Janeane, and everyone else from the clinic. She bought star fruits, bananas, papayas — ​all the forbidden fruits for dialysis patients, because of their high levels of potassium. She threw a potassium party for us! She must have eaten a dozen star fruits. We talked, laughed, reminisced. She lay down on her bed, and said goodbye. People were weeping. I blubbered shamelessly. But many of us were smiling too. In a few hours, she drifted quietly into a coma, and died. Edna chose her own way out, and she went in style.”

Tears shine in Agar’s eyes as he recalls the scene. “Yah, look,” he continues eventually, in a gruff voice, as if to mask his emotion. “We let people dialyze to live, rather than living to dialyze.”

Edna Kent’s decision, and the manner in which she carried it off, recall the ancient Stoics, who believed that the ability to decide how our life will end is central to human liberty and dignity. “What is freedom, you ask?” wrote Seneca. “To be a slave to no situation, to no necessity, to no chance events.” To Seneca and other Stoics, keeping an “open door” on the Beyond, and choosing the right time to pass through it, were integral parts of a life well lived. But in addition to such grand Mediterranean equanimity, there is also a festive air about Edna Kent’s Irish wake, a sprinkling of wit and star-​fruit humor worthy of Flann O’Brien or Oscar Wilde, that, in the closing act of her life, shows a rare kind of courage. Courage that not only transcends the fear of death, but also affirms a powerful love of life.

Excerpted from“How to Make a Killing: Blood, Death and Dollars in American Medicine” by Tom Mueller. Copyright 2023 by Tom Mueller. Used with 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 best-selling “Extra Virginity” about food fraud and “Crisis of Conscience” on whistleblowers and their enemies.

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