Home Dialysis Patients Need Support…But First, They Need Enough Training

I am always glad to see attention paid to home dialysis. I mean that sincerely. As a home training nurse, I spent a good chunk of my life behind closed doors working directly with patients. I helped people bring dialysis home. I also helped keep people at home, when that is where they wanted to be.

I have acted as a cheerleader, life coach, safety net, and confidence-curator. Sure, a lot of home training is skills-based, but a lot of it is psychological, too. In my experience, people can and will learn home dialysis when they want to learn it, and when the training matches their needs.

An Overwhelming Time

It is important to remember that we each have different “stuff” going on in the background of their lives. I have watched patients push through fear, exhaustion, uremia, low stamina, anemia, anxiety, depression, family stress, economic stress, and overwhelm while trying to learn how to perform a complex medical treatment at home while the rest of the world keeps moving. That is a lot.

And I am a big fan of validating that and “seeing” the experience of others. I do not think the weight of home dialysis is appreciated enough by those who have not been dialysis patients—or worked intensely with them.

This is also personal for me. My grandmother, step-dad, and several of my close friends have all been on dialysis. I care deeply about options, choices, informed consent, resources, respite, back-up plans, genuine support, and mental health.

So, when I see a bill like H.R. 8875, the Improving Home Dialysis Act of 2026, introduced into Congress, I pay attention. I welcome any positive direction and any step toward improving lives for patients. But, I also have some pretty big questions.

I do not want my questions to come off as unsupportive, partisan, dismissive, or critical of any organization or person supporting the bill. A step in the right direction is still a step in the right direction, and I am completely okay with that. But, as I said, I have questions.

My questions are mostly about practicality. I have nursing questions, too. I have questions about workforce implementation, patient safety, staff safety, reimbursement, training, and scope of practice. I have questions that come from having a deep understanding of what home dialysis actually looks like in all of its stages.

Improving Home Dialysis Act of 2026 Details

The bill would add staff-assisted home dialysis respite care as a Medicare support service beginning in 2028. As written, the bill says respite care could be available to a patient who is temporarily unable to competently dialyze at home independently during the first 30 days at home.

It could also be available later if an established patient has a physical limitation that causes a temporary inability to dialyze independently at home.

The bill would also add limited renal mental health services during the first 60 days after a patient starts home dialysis.

These ideas point in a good direction. The bill acknowledges, at least in part, that home dialysis requires work from the patient and sustained effort from the care team. I absolutely agree that home dialysis patients need more support and more of a safety net. However, the way things are worded and designed really matters to me.

I worry about “support” being conflated with “respite.” And I worry about “respite” becoming a billing workaround for training, staffing, reimbursement, mental health access, or care coordination issues that already exist.

When we talk about home dialysis, we often describe it as flexible, empowering, and generally compatible with daily life. For many people, it really is. But one of my biggest pet peeves is when providers, or anyonpae really, make home dialysis sound easy simply because it happens at home. That is not how it works.

People come into home dialysis training with lives already in motion. Their lives are not paused. They do not arrive at the clinic with a blank slate and nothing else to manage. People who need dialysis are in the middle of living their lives—just like people who do not need dialysis.

Getting someone home successfully is not as simple as showing a person how to access blood and work a machine. Good home training includes abstract things, too, like figuring out how to work physiological treatments into the life a person already has. The best (and hardest) part about working with humans is that the variables are endless.

Clear the Decks

Our advice at Home Dialysis Central for decades has been to “clear the decks” as much as possible during the adjustment phase of going home with dialysis. This is a critical period where a patient and care partner if there is one needs time and space to smooth out their techniques. They need to practice. They need to make mistakes and be accountable for them to themselves. Newly graduated home patients need to ask questions, repeat things, read their notes and instructions, gain confidence, and build a routine that works with their lives.

New home patients need to learn how to fit dialysis around dinner, bedtime routines, work, family responsibilities, and everything else that does not magically pause because a machine went home with them.

Not everyone learns at the same pace. Not everyone adjusts in the same way. Not everyone has the same support at home. Health literacy varies wildly. Patients and care partners may be contending with energy depletion, low stamina, vision or hearing deficits, dexterity issues, anxiety, trauma, fear of making a mistake, and the actual brain fog of uremia.

Needing a slower training process or more help during adjustment does not mean a patient is failing home dialysis. It means that every person is different, and training and ongoing support have to match each person’s needs.

When Baby Birds Fly the Nest

It is also hard on home training nurses to send patients out on their own. For me, it always felt like watching a baby bird leave the nest and take flight. You may know that bird has what it takes to fly, as long as they stay steady and confident. But, you also know there will be wind ahead. There will be weather. There will be alarms. There will be moments of doubt and “buyer’s remorse.”

It is hard to be on call and hear a new patient struggling at home. It is hard to talk someone down from panic and help them move back into clearer thinking when they are dialyzing at home and you are in your pajamas in yours.

Home training nurses I know often joke about how hard it is to “sit on our hands” in the early days after a new patient goes home. But ultimately, a lot of the best learning—the real learning—happens in those early days when the patient is doing the treatment slowly and methodically by themselves, solving problems using the tools they have been given, calling when needed, and proving to themselves that this really is going to be possible.

I used to say patients are ready to go home when they and the nurse agree they are about 90% there. The other 10% is reserved for humility and experience. I still think that is true. It takes time to get to that 90%, and even longer to fill in the rest. We cannot abandon patients as failures if it takes a while to get there. But that also means we have to be open to preparing patients to this standard even when it takes longer for them to graduate from training and requires more ongoing support at home.

I understand early drop-out is a concern, though I never experienced it myself. I understand that the first few weeks at home can be fragile. I have seen it. But that is exactly why I hesitate when “more training” and “respite” start to blur together.

Home Dialysis Training is Short

Medicare pays for a limited number of home dialysis training sessions. This should not matter to patients or to home training nurses trying to do the right thing. But it certainly matters to people looking at a bottom line. Currently, home HD patients are given up to 25 reimbursable training sessions. PD patients get up to 15. For some patients, that is enough. For others, it is not. I am going to focus mostly on home HD here because that is where some of the practical issues in my head become especially clear.

Learning home dialysis is not just about how to string and work the machine. It is about understanding the concepts behind the treatment so appropriate clinical decision-making can occur safely at home. New dialysis technicians are given full-time training and have over a year to become certified. Even then, technicians must work under RN supervision.

Patients who may be dealing with uremia, fear, fatigue, and catastrophic life disruption are expected to learn how to independently dialyze themselves and manage possible complications in just 25 treatments. That is a heavy ask.

Home HD patients are expected to become experts in their own access care, infection prevention, machine set-up, treatment settings, aseptic technique, alarms and troubleshooting, documentation, lab draw and processing, supply management, emergency procedures, symptoms, and when to call for help.

They also have to learn what “normal” feels like for their own bodies during treatment. They need to learn to listen to their bodies when something feels off. They need to understand blood pressure changes, cramping, access problems, bleeding, air, clotting, dizziness, and when a situation has moved beyond DIY intervention and into the realm of EMS.

Home Dialysis is NOT a Small Learning Curve

Some patients do beautifully in 25 training sessions. I have had patients intuitively understand a lot of the concepts and be good in fewer. I have had plenty of patients need more. Some need much more. Some patients have a hospitalization, health change, or access issue in the middle of training and need to be retrained almost from scratch when they come back. Others need a slower pace because they lack confidence.

It does not matter. The point I am trying to make is this: if a patient is not safe or confident enough to dialyze independently at home after the usual training period has ended, they need more training. Not respite care at home. There is nothing wrong with needing more training. The government should realize that.

The First Days at Home

This is the part of the language that really gives me pause. The first month at home is a vulnerable time for patients, and many need extra support. But if a brand-new home patient is unable to dialyze at home during those first 30 days due to incompetence, we really need to question why.

Were patients sent home before they were ready because additional training was not billable? Did a patient require more sessions? More practice? Has the patient demonstrated some competence but is still struggling with confidence? Are there physical issues or barriers that made learning more difficult? Did a care partner need more time?

In my opinion, sending a staff member into the home of a patient for one-on-one care during the same period the patient is supposed to be adjusting to independence may not be the best use of very scarce resources. It may even work against the goal of confidence and patient independence if the underlying problem is that the patient needed more time repeating steps in the clinic rather than being terrified of making mistakes at home.

I am not saying we should leave the patient at home without help. I am saying this might not be the best time for staff-assisted care. More training is not wasteful. It is safe.

It makes sense for Medicare to pay for more training to help a patient move toward independence rather than rushing a patient out of training and expecting independence to be attained through staff intervention.

Respite Care Makes Great Sense

I do wholeheartedly support respite care when an established home dialysis patient has a temporary setback. A patient may be doing well at home and then have surgery, a broken arm, a severe arthritis flare, a vision change, weakness, a fall, or some other physical limitation. There is no need to bring a patient in-center for these things if support at home is safe and possible. I also do not think underdialyzing a recovering home patient with in-center dialysis is conducive to healing; nor is it comfortable.

I think perhaps there should also be a clause in this bill that covers a care partner emergency or temporary unavailability. Anyone can become physically unable to do parts of a treatment for a period of time, even when patients are well trained and independent. This should not automatically necessitate a modality change, and I have seen such changes not go well for patients because of the unphysiology of in-center dialysis.

It is a good goal to offer staff-assisted respite to keep patients home long enough to recover. That is powerful and could keep patients home longer.

But, being the critic that I am, I wonder if “physical limitation” needs to be defined more clearly. Does that include surgery? Tremor? Weakness? Fatigue? Mobility changes? What documentation is needed? What supporting evidence? Who decides what is and is not an appropriate need for home dialysis respite?

These things matter because vague language can lead to uneven access. That worries me. One clinic may interpret “physical limitation” very broadly and give patients full access to the proposed respite treatments. Another might interpret “physical limitation” more narrowly and not provide this support. The goal is to help all patients through a temporary setback.

Thoughts on Mental Support

I also seriously appreciate that the bill recognizes renal mental health services. That matters. Chronic illness can bring fear, grief, depression, anxiety, trauma, loss of control, body changes, financial stress, relationship stress, sleep disruption, care partner strain, and the daily burden of life-sustaining treatment into the lives of patients. Mental health care belongs in kidney care. Mental health belongs everywhere, frankly.

Home dialysis can help some people feel more in control. It can offer flexibility, privacy, and a sense of ownership over treatment. But, it can also bring new stress. Supplies are in the home. The machine is in the home. The treatment is in the home. The fear of making a mistake is in the home.

At the same time, four sessions during the first 60 days at home should not be mistaken for enough support. Four sessions may help some people. Four sessions may be more than many patients receive now. I do not want to dismiss that, because I agree patients with chronic illness on abject life support need mental health support. But, adjustment to kidney failure, and the burden of dialysis regardless of location, does not end after 2 months.

In fact, those first 2 months may be one of the most overloaded times in a patient’s life. It might actually add stress to pile on more appointments, even if their purpose is mental wellness. Patients are still learning how to fly. They’re trying to rebuild their lives.

Some people might welcome counseling right away if the counselor is well versed in dialysis and the patient is not put into the exhausting position of having to explain everything, including treatment, from the ground-up. Others may find it intrusive, one more thing to schedule, process and manage. Patients need and deserve access to mental health care whenever they need it, not just during a narrow start-up window. Patients need professionals who understand chronic disease, medical trauma, treatment routines, burden, care partner stress, transplant uncertainty, and the emotional heaviness that comes from living life on life support.

I’m not saying four sessions aren’t a step in the right direction. They are. But they’re not nearly enough to address the mental health needs of home dialysis patients.

First Steps Lead to Greater Journeys

I welcome the direction of the Improving Home Dialysis Act of 2026. Home dialysis patients need more support and back-up. Patients need respite and mental health care. Patients need to exist within systems that recognize how much work it takes to live well with kidney failure and do dialysis at home. Support also needs to be practical and designed around real life.

If clinics are expected to provide staff-assisted respite, reimbursement and staffing need to reflect the actual work involved. Before staff are sent into homes, their role, scope, safety protections, emergency responsibilities, and liability need to be clear.

When patients need non-dialysis support, home dialysis teams should be able to coordinate with home health and other clinicians—not absorb every unmet need because they are the people who showed up. And if mental health support is included, it should be flexible, long-term, and kidney-informed.

Home dialysis can be life-changing. It can help people reclaim time, control, privacy, and flexibility. But, it is still dialysis. It is still life support. It still asks a lot of patients and families. If we want more people to choose home dialysis and stay with it, we need enough training, realistic support, coordinated care, and mental health resources that do not disappear after four visits. A step in the right direction is welcome.

Now we need to make sure the next steps are safe, practical, adequately funded, and built for the lives patients are actually living.