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:
Learning to use a machine that may seem as complex as an airplane
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.
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.”
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.
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.
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.
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↩
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↩