There's something unusual about how kidney dialysis is done in Helena.
Nationwide, more than 400,000 Americans have kidney disease so bad that they need regular dialysis – meaning they have to connect to a machine for several hours at least three times a week to clean their blood of toxins.
“They have to come at a certain time, so it's very scheduled, very regimented, and their time is not their own,” says Dr. Robert LaClair, a nephrologist, or kidney specialist at St. Peter's hospital in Helena.
“The way we do dialysis in this country, no one would be saying, 'this is the way we should be doing things.' No one would,” LaClair says.
When he came to St. Peter's five years ago, LaClair decided he was going to do things differently. He was going to encourage as many of his patients as possible to dialyze at home.
Nationwide, fewer than 10 percent of dialysis patients do that, but in Helena, LaClair's leadership has pushed their rate to 40 percent.
“When I came here we had about four percent of our patients doing home (dialysis), four to five percent,” LaClair says, “so I'm very pleasantly surprised we're at 40, and maybe we'll hit 50.”
Doing so isn't necessarily simple, but LaClair says it's not so difficult that lots of people can't do it themselves, often with help from a family member or other caregiver.
And if they do it at home, many people can dialyze more frequently, like every night at bedtime. Research shows that that helps them feel better than doing it in the dialysis center three days a week, and that they have to be hospitalized less.
“Often our patients who have their dialysis here at the in-center will feel poorly for four, five, six hours, sometimes the rest of the day after a dialysis treatment,” LaClair says, “and then they only start feeling better by the next day. And then of course by the time they feel really well, they're back on dialysis again. So it's very hard on people, especially as they get older, to have to go through that kind of treatment.”
Part of the reason so many of LaClair's patients are able to dialyze at home is because of improvements in technology.
Ward Shanahan uses it. He's an 84-year-old retired attorney who started using a home dialysis machine under Dr. LaClair's care a little less than a year ago.
“I'll take you downstairs and show you the whole rig,” he offers when I meet him at his home in Helena.
Shanahan's “rig” is box about the size of a toaster oven that sits on his nightstand.
“There isn't really that much,” he says. “I go through the drill here to get hooked up. I have a few problems as the thing is working, because sometimes my body is not draining the right way. But it has a squawker on it, so I could be sleeping and this thing wakes me up and tells me I've got to fix the line.”
The relative simplicity of the home dialysis machine Shanahan uses is enhanced by the fact that it's also connected to the Internet.
“When I'm done it takes all the statistics from the machine and pipes it over to the hospital,” he says, “and they make adjustments there for things that have to be done with the fluid. And the readings that are coming off of my body, the machine's recording them.”
It used to be up to home dialysis patients themselves to record important information about their treatments every day. They did it by hand, and then reported it to their medical caregivers. That led to a lot of errors, and delays in reporting data. Now, caregivers can access the information instantly on their computers, or even smartphones, and learn right away if something is starting to go off the rails.
“These gals keep tabs on me all the time,” Shanahan says, “and I just lay there and read books and fall asleep.”
The “gals” Shanahan says take such good care of him are Lisa Mott and Alice Luher. Mott is a social worker and Luher is a nurse.
In addition to monitoring patients, they help provide the careful, face-to-face patient education up front that experts say is crucial to successful home dialysis.
The hardest part, Luher says, is teaching patients how to keep their catheter connections sterile. Once that's done, the new machines have video screens showing patients what to do. Luher says that's a big improvement.
“I had a long drawn out list,” Luhr says, “you know, step 1, you do this, step 2, you do this, step 3....So I had a piece of paper they'd have to follow through. With this (machine), each one of the steps is shown to you, so it's pretty difficult to miss out.”
But even with the technological improvements in recent years, patient education still requires time with a skilled professional, and somebody has to monitor all that data that comes streaming in over the internet.
Also, patients have to be willing to do some of the work themselves that nurses or technicians typically do at dialysis centers – like hooking up tubes properly and keeping everything clean.
The crew at St. Peter's says it's crucial that patients have people available on call 24 hours day in case something goes wrong.
“Home therapy is just a lot of work,” Dr. LaClair says. “It's a lot more effort to invest in that initial training, which you may lose money on, because you're training them, and maybe they won't want to do it, and the machine you just leased has to go back to the lender. It's just a lot of work.”
The federal government has recognized that, and is proposing to increase the amount of money it offers hospitals and other dialysis providers to do patient education aimed at getting more people to dialyze at home.
That's important, because the federal government pays for nearly all kidney dialysis done in America. Almost none is paid for by private insurance.
“I think the increased training payments is a good thing,” says Dr. Frank Maddux, chief medical officer at Fresenius, the biggest private dialysis company in the world.
“I can't tell you the answer about whether the increased payment that's proposed is in fact adequate to cover all the costs for the home training,” Maddux says. “I don't know that it will create all the fundamental changes that need to occur, but I think it sets a good, clear direction.”
Maddux doesn't think that everywhere in the country is going to start looking like Helena. He says Fresenius, with its nearly 300,000 patients, is working to grow the percentage who dialyze at home, but he thinks it would be difficult for bigger organizations to ever match the 40 percent mark at St. Peter's in Helena, where 40 percent represents about 25 patients.
“I think it's much easier for an organization that is located in a single, small geography where they can concentrate those resources,” Maddux says, “It's just a different scale.”
For his part, St. Peters' Dr. LaClair thinks there's lots of room for improvement in dialysis care in America. He calls it a “sad stepchild” that no one wants to talk about.
“We have the opportunity here at St. Pete's, which is unlike any other place I've ever been, where we could model dialysis the way think we would want dialysis if we were sick, and that's what we do,” LaClair says.
“Could we do the rest of the country? Yes. But - ” he says, pausing, “no one cares.
“Do you really want to be recording this?” LaClair asks, laughing.
“It's true!" he says, "and we're doing the best we can for these poor people who are on dialysis. But you don’t have to do that,” he says. “We could just go back to what we were doing before and no one would ever come after us and say - why aren’t you doing these things?
“So there’s no obvious financial incentive for you guys to be doing what you’re doing,” I asked.
“No,” he said.
“It sounds like you’re able to do it because you’re in a relatively small place and you have the freedom to do the things you want?” I asked.
“Yes,” he said.
“You're lucky,” I said.
“I know,” he said.
For their part, the big dialysis company, Fresenius, says they basically get paid the same either way - whether people do dialysis at home, or at one of their more than 2,200 centers across the country. Their chief medical officer says what proportion do it at home really depends on a lot of different factors that can be different in each individual market, like having a critical mass of trained support staff and being able to work with patients in the months before they get sick enough to need dialysis.
Helena retiree Ward Shanahan, though, is grateful he's in a place that emphasizes home dialysis. It means he can go to his cabin on the lake whenever he wants, and more easily visit his son in California.
“I don't like to be just cooped up in a hospital room,” Shanhan says, agreeing that his little dialysis rig gives him a lot of freedom.
