How to Train Home HD Patients for Long-term Success

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on August 22nd, 2019.
How to Train Home HD Patients for Long-term Success

With the new Advancing American Kidney Disease Initiative, home dialysis—both peritoneal dialysis (PD) and home hemodialysis (HD)—will need to be dramatically expanded by 2025. Creating a space for home training and hiring staff with the required experience is costly. PD training is relatively fast, often taking a week. But, training for home HD takes longer—often 4-8 weeks, and sending a machine home requires a much larger clinic investment in both staff time and money. And, patient retention is an ongoing concern for providers and even machine manufacturers.

The reason for home HD dropout is often reduced to “care partner burden.” Yet, successful patients, care partners, and home HD programs suggest that the story is more complex. From my own long-term observation of patients and training approaches that did and did not succeed, here are several elements that seem to make a difference.

Teach In-Center Self-Cannulation and Self-Care

The most important factor in whether someone will succeed at home HD is confidence. And, the two biggest fear factors to getting someone home are:

  1. Needles

  2. Learning to use a machine that may seem as complex as an airplane

Aircraft, Fighter, Cockpit, Instrument, Panel, Gauges

Both concerns can be addressed by in-center training during HD treatment, with the side benefit of offering additional professional development and gratification for the nurses and technicians who help patients become more self-reliant by teaching vital skills. Once patients know they can place their needles and troubleshoot the machine, home HD training goes more quickly and the likelihood of success at home is much higher. (This would be a great research topic for those with in-center self-cannulation and/or self-care programs.) Sharing a video like this by a person doing solo home HD can help other patients see that doing these tasks is possible.

NOTE: Self-cannulation is a patient right under the Conditions for Coverage for Dialysis Facilities and can be taught with no special CMS certification. There is no separate certification if a clinic wants to offer in-center self-care. Only a clinic that wants to bill Medicare for self-care training—which includes much more than self-cannulation—must be certified for home training and support.

Normalize Patient and Care Partner Fears

As Dr. Chris Blagg has pointed out for decades, training for home HD is like learning to drive a car: driving requires hand/eye coordination, clear thinking, and awareness that we hold our own and others’ lives in our hands each time we get behind the wheel. It’s scary at first, and then becomes routine.

learning to drive

Even when someone has sorted out his or her values and knows why s/he wants to do home HD, it is still frightening and overwhelming to go through training and transition from the clinic to the home setting. Unless these emotions are addressed up front, each person who goes through these emotions believes that s/he is the only one.

Home HD training means learning a lot of complex, new information in a short time, perhaps for the first time since finishing high school or college. There will be times when they feel as if they will never get it. The temptation to give up and be taken care of is huge. In our Home Dialysis Central Facebook group, we tell people who are about to begin training to clear their calendars of anything that is not essential, and expect to feel overwhelmed at some point. Everyone does. It’s normal, they will get through it, and we are there to help. You can do the same if you teach people to do home HD.

Train Patients to Fit Dialysis into Their Lives—Not Their Lives into Dialysis

One of the biggest benefits of home treatment—PD or home HD—is the ability to regain control of a life that may have spun out of control with kidney failure. Yet, training too-often has a single-minded, mechanistic focus on how to run the machine, and not enough on how to make day to day life work. Patients who are not explicitly taught to take the flexibility to shift their treatment times to suit their priorities may ironically find home HD too rigid!

Or, some may not be using the right treatment. I see a lot of people trying to squeeze short daily HD in around a full-time work schedule and having no “me time.” Most end up back in-center or quit their jobs to solve the problem of having chosen (or been limited to) an option that was a poor fit for their priorities. Using a tool to find out what each patient values can help guide a treatment choice that can succeed over the long-term.

Empower the Patient During Training

The FDA approved solo home HD during the day in December of 2017, and it took another year or so for the large dialysis organizations to get policies and procedures in place to support this option. But, we’re more than halfway through 2019, and some clinics still do not offer patients the chance to do solo home HD, saying, “it’s dangerous.”

Bill Pechham

What is really dangerous? Having organs stunned by harsh in-center HD treatments is dangerous. A 2019 meta-analysis1 estimated that intradialytic hypotension (which could cause stunning) occurs in about 12% of treatments—so an in-center patient might expect to have a symptomatic blood pressure drop about every other week. Yet, recovery from each episode of myocardial stun can take months, if it occurs at all.2 NOTE: Use our free UFR calculator to help prevent blood pressure drops during HD treatments in-center or at home.

Even if your clinic still requires a partner, CMS never says what a care partner “must” do. In-center staff do not stay chairside throughout a treatment! It is best for patients to be taught and expected to do as much as they can themselves. Unrealistic expectations for care partners do create a burden that can sabotage success at home:

“Today we started home HD training and, for the first time, I felt overwhelmed. I was surprised to learn that I am expected to be in the same room with him throughout the entire session. And, yes, I clarified, that is forever—not just during training. I don't expect to go out, but my husband works out with a personal trainer twice a week and is extremely competent. This really threw me. Am I over-reacting? Will I really be glad I signed on for this?

When first home, a dialyzor may need a lot of reassurance:

“In the beginning, my husband called me to his side 17 times in 3 hours! My gosh, I work all day, then would come home to do his dialysis, dinner, dishes, etc. There’s only so much I’ll put up with. He’s not helpless! Now, this time of year, I’m canning. Might as well make use of my time if I have to be here. Joyful opportunities show themselves.”

After that initial adjustment, care partners find that they are able to:

  • Stay within earshot, but be elsewhere in the house to cook, clean, sew, or work.

  • Give the patient a bell to ring if they were needed for any reason.

  • Set a basket of healthy snacks by the chair.

  • Use a baby monitor with a video screen to see the treatment from another room.

  • Cook, clean, and do other things around the home during treatment.

Adult, African American, African Descent, Beverage

Could something go wrong at home? Yes. But, as one solo dialyzer put it:

“Hypotensive episodes are less common doing home HD than in-center, at least with NxStage. I dialyze solo. I never had a hypotensive episode in-center, and I’ve never had one at home, but I recognize that it’s possible. If it happens that I lose consciousness during treatment and don’t come around, I’ll probably die. Can’t imagine a better way to go. I’m aware of the risks and I was when I started this adventure.”

Offer After-Hours Support

Few things are more terrifying for home HD patients than running into a problem, calling the clinic support line, and having no one answer. As we have pointed out before in KidneyViews, back up is a critical safety net. In fact, the interpretive guidance to the ESRD regulations states that dialysis clinics are supposed to “provide home dialysis patients access to resources and assistance 24 hours/day, 7 days/week.” A sure way to fail with a home program is to understaff it and not quickly replace home training and support staff who leave.

Conclusion

Successful home training requires far more than a focus on how to use a machine correctly. Ideally, training starts in-center with self-cannulation at least, and choice of an option that is a good fit. Once training begins, normalizing emotions and clearing away nonessential tasks can help patients and care partners (when present) to move beyond those tasks and learn the complex new home HD information. Empowering the patient as much as possible will help to reduce care partner burden. And, providing back-up is essential to boost confidence.


  1. Kuipers J, Verboom LM, Ipema KJR, Paans W, Krijnen WP, Gaillard CAJM, Westeruis R, Franssen CFM. The prevalence of intradialytic hypotension in patients on conventional hemodialysis: a systematic review with meta-analysis. Am J Nephrol. 2019;49:497-506. https://www.ncbi.nlm.nih.gov/pubmed/31129661

  2. Sone T, Ishida A, Sassa K, Okumura Y, Yasuda E, Endo T. Reversible ischemic myocardial damage: clinical observation using two-dimensional echocardiography. J Cardiogr. 1986, Sept;16(3):571-83. https://www.ncbi.nlm.nih.gov/pubmed/3655411

Comments

  • Dori

    Aug 27, 2019 12:12 PM

    I just want to add that this sad story is a PERFECT example of someone whose treatment option was the WRONG FIT--which ultimately turned out to be fatal. Who puts a working 22 year old on standard in-center HD?! What were they thinking?!! https://www.dailydot.com/irl/james-farmer-dead-starbucks-kidney-dialysis/

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  • David Rosenbloom

    Aug 23, 2019 4:14 PM

    Bravo Dori and Henning! You are both correct.

    The system needs to accommodate all types of patients if home hemodialysis is ever to become a significant portion of kidney treatment in the U.S. "Self-Help" treatment beginning in-center, where the patient sets up his/her own machine, cannulates, operates it during treatment, and does the breakdown and cleaning after treatment is the way to go to see that increase in HHD. It's how I did it over 14 years ago. Yes I was highly motivated, and wanted control back in my life. And it is no more difficult than driving a car; certainly less dangerous. And the benefits far outweigh the drawbacks for those who can and want to do HHD. It's all about attitude.

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  • Henning Sondergaard

    Aug 22, 2019 3:52 PM

    Dori,

    Thanks for another excellent blog post. I truly believe if we are going to get more home patients we need to change the paradigm so that home (PD and HHD) becomes the natural first choice for everyone, and so in-center becomes the fall-back option that we only resort to when all else fails. That would also mean that all (or at least most) units advance into some kind of transitional care methodology.

    Another revolution that has to happen is with care partnering. In my country you only get to go home if you are self-sufficient, i.e. the exact opposite of the "care partner requirement" that is still the norm in the US even if it is no longer so legally.

    I used to think neither requirement was better. But I am beginning to think that we got it right. The patient should always be able to take care of him/herself. Having someone there should be a perk and never a requirement. That is what 7½ years of solo flight while looking at all the trouble that comes with care partnering has done to me.

    I squirmed the first time I read the post by a care partner quoted above. I squirmed even more reading it now. Care partnering is an antiquated idea based on antiquated treatment regimes. And whoever told her to be at her husband's side at all times has no business being in health care at all unless they make her scrub toilet bowls for the rest of her career.

    Every patient should always learn to cannulate themselves. Nobody should be allowed even close to that needle before the patient has learned to do it themselves. How hard can it be to understand such a simple concept? No fistula should ever be places where the patients can't handle needling themselves. Then there are a few - and extremely rare - instances where some sort of disability prevents them from doing it. But it is nowhere near what I see in the FB group from American care partners. For some odd reason it is always the care partner telling us that they are invaluable - it is never their partners who say so (just some food for thought)

    So I would say all your well meaning advice about care partnering is superfluous. People need to take care of themselves. Period. Even having to stay within earshot or being slave to a bell like some Pavlov dog is plain wrong. You are not disabled because you are a dialysis patient. It has to do with preparedness more than anything. Why should your life partner become a servant instead of your lover/spouse/significant other?

    The entire relationship changes to the worse when you enter into a master-slave relationship like this. Hence the extremely many instances of care partner burn-out.

    I could go on about nearly every aspect you touch upon and write a whole dissertation about it. But I will stop here with what I think are the two most important issues.

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    • Dori

      Aug 22, 2019 5:15 PM

      Henning, I am a pragmatist at heart. Do I believe that anyone who wants to and is capable should be able to dialyze solo? Absolutely! Do I think that clinics are ready to go full-tilt into that when many have spent decades infantilizing patients (often with the best of "caring" intentions)? Sadly, no. So, I purposely posed a compromise: use the ambiguity in the CMS regulations as wiggle room to empower dialyzers first and foremost, vs. turning the home into a clinic with the "patient" in the chair and the "caregiver" (you know how I hate that word!) as the unpaid tech with ALL of the responsibility. Training nurses and techs to respect people's knowledge of their own bodies and to focus on how to make the treatment work FOR each person is paramount as well. Of COURSE it is vital to know how to safely operate medical equipment and place needles or connect PD catheters. But, without the knowledge of how to fit the treatment INTO an already busy life, it won't matter if folks can do that or not--because they will drop out and end up in-center or stop dialysis altogether...

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      • Henning Sondergaard

        Aug 22, 2019 6:14 PM

        Dori, I hope you know I was not out to criticize your post as such. I was just trying to point out where we really need to work hard to change things. And I do think fighting infantilizing patients should be the #1 priority in modern dialysis care.

        You know I like your pragmatism. You have to embrace a lot more folks than I do. You also have a business to run without being ostracized by different groups - and there are many who would like to try. So let's just maintain our roles here. You as the pragmatist and me as the idealist. I also think I as a patient can be a outspoken than you will ever be able to only because I am a patient and I know what it is like sitting in that proverbial chair day in and day out - proverbial because I always dialyze in bed while sleeping. Whether in the comfort of my own home, in a hotel room, or as I do right now - in a cabin on a small island with the ocean 300 feet away.

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  • Linda McKenney

    Aug 22, 2019 1:07 PM

    I've often said that self care should be the expectation from the first in center dialysis treatment. Given a mature access during the first treatment staff should say "next treatment we'll start teaching you to place your own needles". From day one the machine set up should be explained. When an alarm goes off patients should be taught to resolve it instead of waiting for the staff. The machine should be turned towards the patient as a matter of course.

    During training the why of procedures should be stressed as much or more as the how. Understanding the why makes it easier to do the critical thinking required to troubleshoot issues. It also makes it easier to safely make changes in routine when life happens.

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    • Dori

      Aug 22, 2019 5:17 PM

      Linda, if more clinics did what you are describing, we would see a LOT more folks successfully doing home HD!

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    • Beth Witten

      Aug 22, 2019 1:46 PM

      Thank you so much for your comment! I agree with you 100%. In my last clinic staff didn't like patients touching their machine. A patient who had been a home HD patient for over a decade--longer than any of our staff had been doing dialysis. She was at our clinic doing backup dialysis to give her spouse respite when an RN turned her machine so she couldn't see or touch it. The patient got understandably upset. What I learned from this and other power struggles between patients and staff is that it's best to encourage patients to take as much control over their dialysis as possible. The more patients do for themselves, the more staff can spend time getting to know their patients instead of doing the tasks they can do for themselves. It's important to treat people as we'd want to be treated. Home dialysis works well for patients who like to be in control.

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