When “Home” Isn’t Simple

Just like “home” looks different for different people, the implementation of any home-based medical care (dialysis included) changes entirely depending on the circumstances. There is a wide subjective spectrum of what can be considered “acceptable” or “realistic” and that spectrum is often misunderstood.

One reason home dialysis uptake remains lower that we would like it to be is, in my opinion, due in part to the assumption that only people who fit into an idealized vision of what a “home patient” looks like can manage the responsibility. The rest can’t be offered it at all. This is simply not true. And, it’s unfair.

I’ve had many patients from the Haves group do home dialysis. Some transformed entire rooms in their homes into luxurious looking treatment suites. They installed water rooms, and built closets to house machines and supplies. I have seen people design both man-caves and beautiful spa-like retreats complete with recliners that power-recline, heat, and perform deep tissue massage. One of my former patients could have had a reality show on HGTV called Home Dialysis Couture because that was her way of making the best of a difficult situation.

These folks might own their own homes, or they may rent. They usually have jobs (or sources of stable income) and can manage okay through a few short disruptions, but a major life-threatening illness or job loss could destabilize their entire lives. These patients have resources, but they’re finite. A big car repair, trip to the emergency veterinarian, or any other unanticipated expense can cause shockwaves to their budget for months. An increase in rent might risk blowing the budget completely.

A choice of home dialysis and the subsequent planning here can take negotiation and compromise. Sometimes, the patient needs to work with their landlord and clinic to oversee and approve plumbing modifications. Other times, patients may have to budget to purchase heavy plastic storage bins to store their supplies. There is often limited space for supply deliveries, so shipping and storage considerations need to be addressed prior to patients completing training. I’ve seen clinics cover the fees for twice-monthly orders, patients store boxes under the dining table covered with an oversized tablecloth, and patient’s domiciles resemble warehouses because a delivery was made without functional understanding of the space.

The upper portion of the Middles spectrum looks a lot like the lower portion of the Haves’, but the margin for error is much thinner. One lost paycheck, one hospitalization, one new crisis, and the line between stability and deep struggle dissolves.

The Have-Nots are also part of a spectrum. Some have housing but live on the brink of losing it. Others face daily choices between rent and electricity, between food and transportation, or between making rent for the month or eating for the week. Some have homes that are physically unsafe—I’ve had patients live in homes with unstable flooring, unreliable heat or no air-conditioning. I’ve had patients with COPD live up several flights of stairs in subsidized apartments with no working elevator, patients who heat their homes in the winter by baking bread, and rural patients who chose home dialysis in part because transportation to a center was too expensive or burdensome. Some patients have no residence, some live in cars, and some live in shelters.

Some live full-time in RVs, do daily home HD, and travel the country documenting their experience (Shoutout to Dawn and Jimmie Bates!) Others travel by cars or planes and do treatments in hotels using NxStage machines. Some patients schedule “transient” treatments at nearby clinics when they are out of town. There are campers who have taken dialysis into the wilderness, and let’s never forget everyone’s favorite story about how Bill Peckham did solo home HD on a raft in the Colorado river. To get the US government to pay for dialysis in the first place, Shep Glazer did a treatment on the floor or Congress in 1971. So, I want to point out that none of these ideas are “new,” and that doing dialysis in non-medical settings has always been a thing.

On this website, we celebrate these adaptations often and use them as pinnacle examples to prove that dialysis doesn’t have to be as life-limiting as it so often is. Dialysis can be integrated into adventure, travel, freedom, and many different lives.

But I think it’s worth asking: if something can be done temporarily and safely (i.e., a person on vacation doing dialysis in a hotel) could it also be done long-term and safely for another person whose “outlying” situation isn’t by choice (i.e., a person who is unhoused doing dialysis in a hotel)?

If not, why? What are the true differences?

So, what is it that defines “home” in home dialysis?

Is it the presence of physical structure: a roof, four walls, and a mailing address? Or, is it any environment that can safety support safe treatment? Could it be a mix of both?

Some people live in hotels long-term because they have nowhere else to go. Is there a meaningful difference between dialyzing in a hotel while on vacation and dialyzing in a hotel because it’s your only option for somewhat stable housing?

Home dialysis, with the exception of CAPD, requires electricity. Also, all patients need potable water, plumbing, a clean environment, safety, and consistent storage. If any of those components are missing, safety and reliability become compromised. These barriers aren’t ever all-or-nothing—many of them can be addressed creatively if the patient has a genuine desire to do so and a strong support structure.

I am not advocating for the lowering of standards, but I am suggesting that we rethink standards with empathy. “Adequate” housing in reality might not look like it does in a magazine or in our imaginations. Adequacy of a space should be determined by whether treatment can be done there safely, consistently, and with appropriate follow-up rather than whether the surroundings match a biased expectation.

Sometimes, what we label as “non-compliance” is actually a reflection of limited finances or logistical barriers to treatment. It’s difficult to follow medical advice when you’re making choices between electricity and rent, or when donated food is shelf-stable and extremely high in sodium but the only option available to you. Until we recognize the reality each person lives in, we risk placing blame on patients and causing guilt and shame for circumstances that are beyond their control.

Patients were offered rooms in secure, non-medicalized, and un-staffed homes that were already set up for home treatments. In the first decade, 113 patients had been trained for home HD and lived in the community houses. The patients’ mortality risks and quality of life scores were on par with patients who dialyzed in their own homes. Most of the patients, were receiving 20 or more hours of dialysis per week and/or doing nocturnal treatments. These programs still exist! Here is a YouTube video about it: https://youtu.be/GE_2kzoGhe0?si=SDHWEbyLGGIoGC2L

I am curious to hear stories about what others have experienced at the intersection between housing and home dialysis. Do you have any (deidentified) stories to share? Have you had to re-think your view of “home” for certain patients? How have you used creativity and empathy to problem-solve for challenges like these?