When Kirk Kelly switched from in-centre dialysis to home dialysis, he was having trouble. As a working father with two kids, he found it difficult to find 12 hours a week to have his dialysis done. His body was also having a hard time clearing the calcium out of his system, leaving him with calcifications on his hands and feet that were so large he could no longer wear shoes.
He moved to having hemodialysis at home, all night long, and the benefits soon became obvious. “Within six months, I actually played a round of golf and walked the course. My bloodwork improved, my energy levels went up — my wife coined the phrase, ‘Kirk returned to the man he used to be.’”
His dietary restrictions were loosened, and since he was doing dialysis at home and overnight, he could spend more time in his job as a sales manager and with his family and friends. “It was really a revelation,” he says. “I got better physically, I got better mentally, and it fit my lifestyle better.”
Kelly, who is now retired and working as a peer support volunteer for The Kidney Foundation of Canada, was an early adopter of home dialysis. But there’s an increasing push across Canada — and among developed countries in general — towards it.
Many patients prefer home dialysis, it’s much less expensive to the health care system, and medically, it’s just as good. A CADTH report released last week went so far as to say that for all patients who are deemed eligible for home therapies by their care provider, home-based dialysis should be recommended.
That doesn’t mean it’s the right fit for all patients — in fact, most will still need to be treated in hospitals or dialysis centres. “Around a third of people could be treated at home,” says Peter Blake, medical director of the Ontario Renal Network. The U.K.’s National Institute for Health and Care Excellence (NICE) has estimated that 30 percent of patients would be suitable for home dialysis, and Australia’s 2015 rates are around 33 percent — though that ranges widely depending on location. Closer to home, Ontario has seen a similar variation, with home dialysis rates ranging from as high as 42 percent to as low as 14 percent across regions. The provincial average is 26 percent.
Ontario and other provinces are pushing to increase that number and make sure that everyone who could benefit from home dialysis is on it — with varying success.
The benefits of home dialysis
From a medical perspective, home dialysis is just as good as in-centre dialysis. The CADTH review looked at six systematic reviews and 154 studies, and found no difference overall in quality of life between home dialysis and in-centre dialysis. “The evidence suggests they offer similar clinical benefits,” says Gino De Angelis, the clinical research manager who oversaw the report.
Many patients also prefer it. Home dialysis is typically done daily over six to eight hours, often at night, while in-centre dialysis is done three times a week, for four hours at a time. Because it’s slower and more frequent, people often feel better on home dialysis than they do on in-centre dialysis.
It’s also more convenient to do it at home, leaving patients with more time to themselves and freeing them from the costs of commuting. For younger, healthier patients, that might mean the key benefit of being able to continue to go to work. And it gives people back a sense of control, says Blake. “People with end stage kidney failure often report that it shatters them: your time is not your own, you’re on a special diet — it’s a very tough life. … Home therapy empowers those patients.”
But it’s not for everyone. People with limited income may not have suitable living arrangements. And those who are elderly, frail, or have other conditions, like heart disease or cognitive problems, may not be up to doing it themselves. Some of those just need help: About a third of Ontario patients get that from a personal support worker or a home care nurse, which others have informal caregivers. The CADTH review also found that some patients felt home dialysis could be a burden to their caregivers — while others found it much easier on the whole.
HOW DIALYSIS WORKS
Normally, your kidneys clean your blood, combining waste with extra fluid, which you pee out. When people’s kidneys fail — which commonly happens as a result of issues like diabetes — they can have nausea, fatigue, and a build-up of potassium, which causes heart attacks.
Hemodialysis (HD) replaces some of that work with a machine that circulates a person’s blood through it. Waste products are drawn out of the blood into a fluid called dialysate, through a membrane.
Peritoneal dialysis (PD) takes advantage of a natural membrane we have in our abdomen that wraps around our organs and against our abdominal wall, creating a pocket. In PD, dialysate fluid goes into that space and picks up impurities from the blood before being drained out.
The benefits to the system
Another important benefit is cost. Home dialysis costs significantly less than in-centre dialysis, and experts agree that moving more people to home dialysis could represent huge savings in an area that’s among the top costs for provinces.
“Dialysis costs are staggeringly high,” says Paul Komenda, an associate professor of nephrology at the University of Manitoba. Komenda and his colleagues are even floating the idea of consulting with the public about controlling costs by moving to a home-first policy. That would take the in-centre option away from able-bodied people who are capable of doing home dialysis.
“If there was a new cancer drug that offered equivalent efficacy, where one drug you had to come into the hospital for, and one you had to do at home, and there was a difference of [tens of thousands] a year, in most situations you wouldn’t give patients a choice,” he says. “We need to have a frank discussion in this areas with the public. Do we want unbridled choice in this area, or do we want to see this money spent on other things, like screening and prevention programs?”
Other provinces aren’t going that far, but are trying to promote home dialysis by taking a quality-improvement approach. Over the past decade, there has been “a significant philosophical shift towards considering anyone and everyone a potential candidate [for home dialysis],” says Gihad Nesrallah, chief of the nephrology program at Humber River Hospital and an assistant professor at the University of Toronto. Yet there are barriers at every stage, from wait times for inserting catheters to physicians or front-line staff believing that in-centre dialysis is better.
The Ontario Renal Network is supporting home dialysis by promoting access to personal support workers and nurses, ensuring faster access to catheters, and ranking regions against each other on their home dialysis rates. That work has increased the home rates from 23 percent a few years ago to the current 26 percent.
And Alberta just launched a province-wide system called START. It collects detailed data around home therapy usage that’s coded consistently and reviewed to ensure accuracy; uses that data to score programs on detailed steps related to home dialysis; and then helps implement change. “We’re trying to show that if you clean up process, you can move the needle without having to restrict patient choice,” says Rob Quinn, a nephrologist and associate professor in Medicine and Community Health Sciences at the University of Calgary.
But B.C. has been the most successful. After a decade of promoting home-based dialysis, 35 percent of its patients are now on home therapies. Like Ontario and Alberta, B.C. also compares its regions and health authorities against each other, drilling down to issues like having the ability to put in catheters, or not having enough nurses to train patients and caregivers. They also educate people who “crash onto dialysis” after an emergency about their long-term options, in an attempt to avoid what currently happens, when those patients often continue with in-centre dialysis by default.
And they provide standardized educational materials that push the idea of home dialysis as a preferred option to doctors, nurses and patients. “It’s a culture shift, and it has to be among the whole team, as well as the patients,” says Adeera Levin, head of the University of British Columbia’s nephrology division and the B.C. provincial renal agency. “Most people don’t get up in the morning trying not to do the right thing. But if you don’t have the hard data to say that not everybody who could be on home therapies is on them, you don’t change anything.”
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The main disadvantage of home hemodialysis is that it brings the horror which has destroyed your life right into your own home, rather than keeping it somewhat contained in a distant clinic. Suddenly dialysis is everywhere, in your daily ritual, in your treatment room, and in your room for storing dialysis supplies. Not only do you have to have treatments every day to take advantage of the option for better fluid removal in home dialysis, but you also have to function as your own quartermaster general, keeping track of all the supplies you need, ordering supplies, making sure they arrive on time, and storing them in one room of your house. Two whole rooms of your house are lost because of this treatment, since you have to keep the treatment room as sterile as possible, so it is not available for alternative uses, and the supplies take up an entire room. To make matters worse, you have to keep returning to the dialysis clinic for routine blood tests and medical appointments, so when you add up all these interruptions, you find you are going to the dialysis center about a third as often as you had to on in-center hemodialysis. Finally, instead of having someone else do the very real work of performing dialysis to someone else, the nurse or the technician in-center, you have to do it yourself, becoming as intimately involved in your own doom as a prisoner forced to dig his or her own grave before execution. I speak from personal experience, and those behind this article obviously do not.
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Does the patient pay for the dialysis machine at home.
I want to switch to home dialysis (PD), but the Fresenius clinic doctor will not let me!!
Home dialysis adds a huge burden to the patient, analogous to preparing a meal at home rather than having the staff at a restaurant do that work for you, since you and your partner have to be your own dialysis staff. There is also a lot of work to do in ordering supplies, storing, and keeping records of them, so you have to become your own quartermaster, in addition to losing an entire room of your house to contain all the supplies. There is also the stress of having to do the procedure yourself, plus the risk of various accidents that can occur at home without the benefit of the emergency skills of a dialysis nurse or nephrologist on the scene. Home dialysis also brings the greatest tragedy of your life, your renal failure, directly into your ultimate refuge, your home, rather than confining it to a hospital or clinic which is removed from the scene of your everyday life. The horror of dialysis simply won’t go away by minor tinkering such as having home dialysis versus clinic-based dialysis, and what is really needed is a miniaturized, implantable, artificial kidney, or a more efficient renal transplant system, such as presumed consent. Thinking that home dialysis is a good solution just shows the gulf of understanding that exists between those who suffer from dialysis and those who profit from it, whether as nephrologists, managers, or researchers.
do you still feel this way today?
My husband wanted to do home dialysis and we went for training but with no success as the two litres of fluid went on only one litre came off leaving the other litre sitting in his stomach ..he had to sit up and move back and forth to get all the fluid off ..going to hospital 3 nights a week his legs and feet swell and he is in so much pain .. we are going to check to see if he might try again and be successful
As a person that probably will require dialysis in the future as my Dad did in his later years I would be extremely interested in going the home route.
My husband have been in HD at home for 3 years, we received an excellent training from the home dialysis department at the clinic, but haven said that i am telling you, not everyone can do this, it is a big responsibility and as a patient you need to be the proper fit(ex: bp needed to be stable,graft/or fistula in good condition, have at home support,etc)
I think at home nocturnal dialysis is the best and longer benefits for the patient but definitely it is not for everyone.
When at home you are on your own, i know that you have 24/7 nurses and technical support but belief me, when it is 3:00am it takes time to contact some one, and time is crucial when you are dealing with an alarm.
Is there a healthcare company that provides homecare for patients with home dialysis? If so, whats the cost for this type provider?
Excellent article showing the various perspectives on home-based-dialysis. Join us when we discuss this topic – evidence, clinical practice, patient experiences + more Nov 9, 2017
https://www.cadth.ca/events/special-event-home-based-dialysis-canada-evidence-practice
My father was on dialysis for the last 5 years of his life. The restriction on his time, his diet and simply the monotony of having to be in the dialysis centre 3x times a week was hard on him, and of course the blood pressure issues, dizziness and physical symptoms too, as one of the commentators mentioned below. But dialysis allowed him to live, and he and all of our family was grateful for this. Public health measures to educate and decrease the numbers of people who need dialysis are crucial, but once someone needs it, dialysis is non-negotiable! Home-based dialysis would be a fantastic option for anyone who is able to manage it and has the support needed to do it safely. Education and culture change to make this a reality across Canada would have huge social and economic benefits and should be a priority.
Sure compared to In-centre, PD is the better choice.
How about prevention? So many who comes via DM2 need not be on dialysis if only their diabetes was managed better.
Many of them don’t even have an FMD. The numbers are so great they easily fall of the radar from the Diabetes clinics etc. etc….
Excellent informative article for everyone.
My daughter was on peritoneal dialysis for six months before her transplant. It allowed her a more normal existence. Wondering why this form of dialysis was not mentioned as well. We encountered people who couldn’t tolerate the machine and then there is the issue of space, spouses, and travel (much easier on peritoneal).
I am also a little surprised because my wife is now on hemo d. in a hospital and is supposed to go home. They recommend only PD.
Is PD better than hemo. D. for her? Thank You.
I’m not sure what’s best for her exactly – that’s a conversation to have with your doctor. But most people who do home dialysis are on PD.
I had my catheters installed 2 yrs before I actually went on P D I stayed off with a very strict Kidney diet I went on when. My creatinine was at 6 instead of 15 I was on dialysis for1 1/2yrs and last Friday got a Kidney Yeansplant But through it al I found P D to be excellent I have no regrets from home dialysis it is the way to go I am now extremely happy with my wonderful gift of life have faith all will work out xoxo
You lost me when you said “Ask the public their opinion”. Most people don’t have a clue about what dialysis entails. That includes many healthcare workers, including myself. So if you ask the public and say it would cost them less, they will all jump on the bandwagon. I have been on dialysis for 3&1/2 yrs. My BP bottoms out at every dialysis. I have had 2 strokes during dialysis. I have broken 4 bones at home due to dizziness and varying blood pressure. Yet when you look at me you would never know. Which is one reason my family doesn’t even understand. A lot of patients do not have a caregiver at home. So even though home dialysis sounds good, great caution should be given before a blanket indorsment is given.
This reads like dialysis is the norm. We should be preventing dialysis or kidney disease and not normalizing dialysis.
For someone with chronic renal failure since I was a little kid.. dialysis is the norm for me.. it’s the norm so I can live my life the way I want too…dialysis isn’t an barrier to me it’s the answer to me living my life!
Hi Jessica, I have been on dialysis for 12 years. It bothers me when people that have no clue about the huge range of reasons why people need dialysis, weigh in and assume we could have prevented our disease and need for dialysis. It’s a life saver for so many of us and I’m grateful for dialysis everyday!
ESRF This isn’t something we actually ask for. This is a condition that occurs, like cancer or heart failure, so to suggest that we are promoting kidney failure so we can do home dialysis is absurd. This is the best solution for a tragic condition.
Obviously no one wants kidney disease, some are born with one kidney or lose one to cancer, have diabetis which affects the kidney or other kidney problems. This article is giving people who need dialysis hope to live.
My husband been doing hemo dialysis for 3 years. We drive 1 hour away . Three times a week in rural Alberta.I am hoping that we could get a unit in our small community. As there are other people who would benefit too.
Wonderful news! Great article! Thank you. I am a loyal fan.