Shaldon, Berkowitz shared similar passions: patient autonomy

If you look at the work of nephrologist Stanley Shaldon, who passed away last November at age 82 in Monaco, and Richard Berkowitz, a home hemodialysis patient and founder of the fledging group Home Dialyzors United who died last month at age 67, you see some similarities. Both pushed the idea that patients could dialyze at home and lead a normal life.

In 1963, Shaldon was the first to teach a patient to connect and disconnect himself from the artificial kidney—a key accomplishment for patients today if they want to do short daily or nocturnal home hemodialysis. Rich Berkowitz advocated for both approaches.

Shaldon coined the phrase “self-service dialysis” for patients who came into a hospital twice a week in the afternoon and dialyzed overnight assisted by a nurse.

In 1965, Shaldon set up the first freestanding independent dialysis unit in the United Kingdom. He called it the National Kidney Center and it was a home hemodialysis training and support center without hospital backing (sounds very similar to the new freestanding dialysis centers being build by NxStage Medical called NxStage Kidney Care centers). Between 1966 and 1968 it placed 28 patients on home hemodialysis in the UK, more than the whole National Health Service had done.

(See more about Dr. Shaldon and his accomplishments in an editorial by Dr. Chris Blagg, starting on page 10).

Common ground

If Berkowitz had been one of Stanley Shaldon’s patients in 1964, we have to imagine that the two of them would have worked well together. Home Dialyzors United would have done very well with Shaldon’s patient population; Berkowitz ran it on a shoestring budget from his Skokie, Ill. home. But his enthusiasm and focus on improving the quality of life among those with kidney disease was the priority. We assume Shaldon’s goals were the same. Like Berkowitz, he didn’t really fit in with the mainstream. Berkowitz believed that keeping his organization as independent as possible would help get a “clean” message delivered to patients: home dialysis was a better way of life.

Under Berkowitz's direction, HDU held four national “meet-ups” devoted to home dialysis. He put together webcasts for patients on how to self-cannulate. He convinced airlines to recognize home dialysis machines as medical equipment that should be transported without fees. He testified before Congress about the need to make home dialysis more accessible to patients who wanted it. As supporters said about him after his death: “He was outspoken in his belief that every single patient deserves to live a normal life on their own terms.” Shaldon, most would agree, was also outspoken during his career.

Berkowitz argued that kidney failure should not sound like a death knell (he wanted to stop the use of “end-stage” in describing people with kidney disease). He was a dialyzor; he had a chronic illness, but a treatable one. Rich believed that home dialysis, whether it was peritoneal or hemo, gave individuals that ability to make dialysis a necessary part of their life, but not be consumed by it. By setting up his National Kidney Center in a home in a London suburb, Shaldon was offering a setting where patients could dialysis in their own comfort zone.

How do we make a breakthrough?

Berkowitz believed that the 10–11% penetration of home dialysis in the United States was improving, but he knew it had to get better. He talked about the thousands of individuals of working age who could be more productive if they took control of their own treatments, set their own schedule, and enjoyed a better quality of life at home.

Home dialysis modalities need an advocate on all levels, and not when it’s just financially advantageous. Dialysis started as a home therapy; Shaldon was on the right track. It needs to be there for those who want it—and users should have adequate support to get them through the rough spots.