When we teach patients to treat their chronic disease at home, we give them the gifts of confidence, self-esteem, self-reliance—and treatments that can better fit their lives and boost their quality of life and survival. Training takes patient/care partner time and clinic and company resources. For those who can’t or choose not to go home after training, failure can be both costly and emotionally devastating. It may also take months to year or more of home HD to break even on the training costs, machine rental, and supplies, depending on the machine.
In a study of more than 2,840 people who started home HD at a large dialysis organization over a 3-year period, 24.9% had stopped it within a year (Seshasai RK et al., 2016). Of these, 7.6% had died and 7% got transplants. Of the rest, 9% stopped home HD within 3 months, 16% within 6 months, and 35% within 2 years. Unfortunately, switching from home to standard in-center HD can dramatically raise 90-day mortality. One study found a 26% increase in deaths (Tran E et al., 2023). For all of these reasons, reducing home HD dropout is essential.
Transplant and death are two reasons we lose patients from home HD we can’t control. There are also predictable reasons that we can identify and address as soon as possible to keep people on therapy. These fall into two main areas (Tran E et al., 2023):
1). Patient
2). Clinic
Let’s start with patient-level risk factors.
Baseline characteristics. Smoking or drug or alcohol use may reduce motivation to do home HD. On the other hand, patients listed for transplant were 27% less likely to drop out of home HD (Tran E et al., 2023)—which suggests transplant and home HD do not compete and we can encourage both. People of color are less likely to have the opportunity for home HD in the first place (Mehrotra R et al., 2016), which is unacceptable. Skin color does not determine home therapy success—motivation does.
Comorbidities. Likewise, poorly-controlled diabetes, cardiovascular disease, frailty, obesity, or other health conditions may reflect a lack of education about self-management or motivation to take on healthy behaviors, so patients who have them would need to find a new motivation to go home.
Mismatch of modality or prescription to patient lifestyle and values. This factor is a common-sense one. Research into patient reasons for stopping PD or home HD that include burnout and patient choice touch on this important concern.
As much as we may love home therapies and the positive impacts we’ve seen, patients may not agree. For them, the notion of bringing a complex medical treatment into their homes is jarring and intimidating and can intensify the anxieties and fears they already have about kidney failure. Patients worry that they won’t be able to learn enough to do their own treatments, or that something will go wrong. Some want their homes to be serene—not medicalized. They are afraid that their lives as they knew them are over and that they will die soon. This is the context you and your patients start with, and why reassurance is always a good first place to start when you start training someone for home HD.
Comorbidities. Likewise, poorly-controlled diabetes, cardiovascular disease, frailty, obesity, or other health conditions may reflect a lack of education about self-management or motivation to take on healthy behaviors, so patients who have them would need to find a new motivation to go home.
How do you reassure terrified patients? Communicate. Tell them all of their feelings are normal responses to crisis and to the unknown. They may be avoidant of all things dialysis, when learning more could make them less afraid. Hope is the flip side of fear (Hammer K et al., 2009) We can’t teach patients until we can help them see the light at the end of the tunnel.
To succeed in training—and at home—patients need to take an active role in their care. Ask your patients “What matters to you?” and show them how their choices can help them to keep those things. Then, guide them to envision their goals. Having a scary chronic illness instantly takes a lot of personal autonomy (control) away from patients. Restoring autonomy is healing. Help them to realize that they still have control: Explain that they are the only ones who can feed and exercise their bodies or take their meds as prescribed. With home therapies, they can choose:
Patients who are ready, willing, and able to manage their own health and care are activated Patient activation includes knowledge, skills, and confidence, and activated people tend to be healthier—with lower BMIs and blood pressure, fewer ER visits and hospital stays, and higher satisfaction with care.
One study found the highest activation levels in people with ESKD who had transplants, followed by non-dialysis CKD, PD, and finally in-center HD—which can lead to passivity and learned helplessness. (This study did not include home HD).
We can empower our patients to learn and become more confident: 182 people on dialysis (132 in-center and 43 home (unspecified) filled out a Patient Activation Measure (PAM) survey at the start of treatment and at 4 months. Home dialysis changed patient activation. At the end of 4 months, home patients had significantly higher PAM scores than in-center patients, even after adjusting for sociodemographics, comorbidities, and CKD nephrologist care.
Dialysis is NEVER just a clinical treatment for the people who need to do it. Plunking hours long treatments into people’s lives—plus set up, clean up, supply ordering and storage, and questions—takes hours out of days that may have been busy before kidney failure was part of the picture. Focusing training only on the instrumental steps to link parts, connect to tubing, draw blood for labs, and trouble shoot entirely misses the lifestyle impact of home HD.
Imagine your own life. How would you squeeze in dialysis four or five or six times a week? Your patients may be thinking:
“What will I do if I’m already exhausted from work and family life and I have a cold?”
“When am I going fit this in and still get the kids to their afterschool sports and stop by my mom’s to sort out her pills and cook her dinner?”
“How will my husband and I get to the gym and eat dinner and fit dialysis in before bedtime?”
When we look at Maslow’s Hierarchy of Needs, “other bodily necessities” is at the base—a most important thing that has to come first. And, we know as clinicians that replacing kidney function is a necessity, not a luxury. Without, nothing else happens. We are in a unique position in home dialysis to directly apply this theory to our practice. We generally have long-term relationships with our patients, which allows for meaningful and individualized plans of care. This is one of the most rewarding parts of our jobs! (Simple Nursing, 2022)
Physiological needs always come first. These are the most basic “things” required for survival and include the need for food, oxygen, and shelter. For our patients, dialysis treatment is necessary for life to continue and therefore nurses, a foremost priority. Any issue disrupting physiologic stability must be intervened upon immediately.
Safety needs include how physically and psychologically secure your patients are and feel. We are working at this level when we assess a patient’s home for adequate task lighting in their treatment area and when we educate about using moisture sensors. By taking action to ensure physical safety and making sure they are well understood, we are helping move patients to a place of feeling psychologically stable and safe at home. Having an on-call RN who answers the phone after-hours is a safety need—and a CMS requirement. Telehealth and remote monitoring can help keep patients feel safer.
Call them to check in. Ask specific questions about how treatment went, so they know you care and are thinking of them and won’t feel abandoned.
Debrief them after a stressful event or treatment. Others in their life may not understand what they are going through. Be a sounding board and a cheerleader. When you talk through an event calmly, it will help your patients relax again.
Emphasize the extra safety precautions for home. Remind patients that they can call or message you, another on-call nurse, or the equipment manufacturer. Home HD patients may use moisture alarms under the access arm and dialyzer. Or, they may feel safer at first with remote home monitoring.
Teach HD patients who use the Buttonhole technique to use sharps. Rather than becoming frustrated if a Buttonhole site doesn’t cooperate and missing a treatment, a confident patient can start a new set or switch to the Rope Ladder technique for a treatment or two. Some patients have one Buttonhole and rotate sites for the other needle. That’s the beauty of home HD.
Encourage your home patients to connect with other home patients. Offer a sign-up form to connect with patients in your program, or suggest online groups, like the Home Dialysis Central Facebook discussion group.
Love and belonging needs fall into the middle of the pyramid and includes your relationship with your patients. When we build rapport and trust, set realistic expectations, and communicate well with our patients, they feel comfortable talking about their higher goals—which are necessary to support motivation forward. Support systems are important to build and maintain. Encourage patients to meet other patients and reach out to their friends. Peer mentoring and support groups can offer emotional support to patients and care partners, as can the social worker. Work with patients and care partners on task management to avoid burn-out and shore up this level.
Self-esteem needs are being met when patients feel accomplished, and like their hard work is paying off. This is where patients are learning to feel confident in their skills and are meeting goals and making new ones. This is achieved only after the majority of the bigger needs are already met
Self-actualization occurs when a patient is fully independent and self-motivating. This can take time. Setbacks are normal and you may need to start at a different level when trying again.
We all know patients who skip in-center treatments or come late or leave early because their lives interfere. While it makes sense to us always put dialysis first, it’s a difficult adjustment for patients. We can’t live at the base of the Maslow pyramid; our goal as humans is to climb it. So, at the start of training, if we first brainstorm with patients and help them envision how their lives will work with dialysis in it, they should be more likely to:
You are the link between your patients and their nephrologists and with your knowledge of their values and lifestyle, you can advocate for treatment options, durations, and frequencies that improve your patients’ quality of life. Nephrologists may not realize how a dialysis prescription affects getting dinner on the table, bedtime for youngsters, or the energy to keep up with a pet.
A free, evidence-based online decision aid like My Kidney Life Plan can help you to help your patients find their best matches within a modality. For example, a patient who cannot fit a full-time job, household duties, and daily HD into her life might thrive on nocturnal home HD.
Gentle, physiologic treatment is the true benefit of PD or home HD, compared to standard in-center HD. This is much more than just moving an in-center treatment to a different setting. Flexibility is a tremendous asset to home patients and can make the difference between success and dropout. Having the freedom to choose which days and hours to spend doing treatment in a given week, for example, can mean being able to keep a job with a good health plan—or not.
As patients near completion of home training, they need to know what to expect at home. They may feel overwhelmed. To be able to adjust to the inevitable upheaval, they need to know where they can find emotional and instrumental support and from whom. Life stress on top of new home hemodialysis stress can be too much for patients, care partners, and families to take. Even with home dialysis, people still need to eat dinner. They still need to pay the bills, mow the lawn, do the laundry, vacuum the floors, clean the bathrooms—on top of perhaps working full- or part-time, taking kids to their afterschool activities, or caring for mom or dad (or both). It’s a LOT!
Medicare requires that home dialysis patients receive the same services—including a dietitian and social worker—as in-center patients. The Social Worker can suggest resources for home-related tasks—perhaps church groups, non-profits such as Habitat for Humanity, Veteran’s resources, economic opportunity councils, neighborhood associations, meal delivery services, etc. Patients can Google these as well.
“Relatedness,” or feeling connected to others, is a core human need (Ryan RM, Deci EL, 2000). Support through empathy from a champion home patient can help patients understand that they are not alone, that their experiences are not unique, and that there is a path forward where they can have good lives.
Chronic illness can strain relationships and reduce social opportunities. Patients who have been in-center for a long time before going home may feel isolated and need to rebuild relationships with their friends and families. Even one email or phone call a week can help get this process started.
The Home Dialysis Central Discussion Group on Facebook is moderated by a team of professionals and patients, has more than 7,900 members, and is active around the clock.
A Google search for “stress self-assessment” will turn up any number of free options.
“mental health care (outpatient)”—with no limit on the number of sessions. This coverage includes one-on-one, group therapy, marital therapy, family therapy, and crisis therapy. A part B deductible applies. (https://www.medicare.gov/medicare-and-you)
In-center HD tends to have a trained staff member (nurse or technician) delivering a complex treatment to a passive patient. Moving that model into the home is not a recipe for success. Overburdening a care partner with medical tasks a capable patient can manage unassisted can encourage learned helplessness, damage a relationship, and lead to home HD dropout.
“I have been doing my husband’s hemo dialysis at home for 6 years. Four hours of my life 4 days a week. We both work 40 hours a week still. We can’t afford for either of us to quit working. One of his buttonholes gives me problems at least every other week. Just enough to drive to the edge of my sanity. I am so damn tired of this lifestyle. Along with all the other issues in life, I’m just freaking burnt the hell out. I feel like I’m drowning, and there’s no end in sight.
“I was the patient, my ex husband was the care giver, he got burnt out too. Dialysis at home was the end of my marriage.
There are reasons why some patients cannot assist with their own treatments, such as brain damage, severe short-term memory issues, paralysis, frailty, mental disability, blindness, or being a small child. In general, however, the more patients “own” the responsibility for doing as much of their care as possible, the less burden there is on a care partner. Solo home HD patients do not have care partners at all. Use the free Partner Agreement tools (PATH-D-HHD) in English or Spanish to help patients and care partners sort out who will do which of the home HD tasks.
“I was told that HHD was easy and I would love it. It was a lot of work! And, I didn’t feel better.”
It’s unwise to oversell home HD as being “easy!,” “great!”, “shorter!,” or something a patient will “love.” All of these things may eventually be true—but not at the beginning. We don’t want to create additional fear, but it’s our job to acknowledge the challenges of learning a complex new life-sustaining skill and the extra workload, and to normalize feeling overwhelmed.
It’s absolutely vital to tell patients before the end of training that it will take some time to feel comfortable applying their new knowledge and getting into a routine. How long this takes varies, but a range of several weeks to several months is realistic. Once patients get into a routine, everything IS easier. Patients and care partners (when present) gain self-esteem by successfully cannulating, setting up machines, doing treatments, and troubleshooting. The more treatments go smoothly, the faster this process can go. Machine glitches and vascular access problems can slow it substantially—sometimes enough that people will give up and go back in-center feeling like failures. Our aim is to avoid that.
Along with flexibility, we need to encourage patients to keep the big picture in mind: kidney replacement occurs only when blood is in the dialyzer. As soon as the needles are removed, wastes and water start to build up until the next treatment. Good dialysis takes time. Healthy kidneys worked 24/7. We have known since 1999 that the 2-day, no-treatment gap in standard in-center HD predicts a 45% increase in the risk of death on Mondays and Tuesdays vs. any other day of the week (Bleyer AJ, 1999). Keep an eye on your patients’ treatment flow sheets for access or cannulation problems and changes in status, and be alert to fewer than seven treatments in 14 days or more than one day off between treatments.
A home HD prescription that worked in theory may not work in practice when a patient goes home. If a patient does not feel better after investing all of the training time and space and dialysis time, it is very disheartening. Ask about symptoms; exactly how does someone “feel bad”?
Is the patient’s pulse different? How has it changed?
How is blood pressure trending? Rising BP can suggest fluid overload. Or, patients can become dehydrated—and their BP will drop. If they did not have a dose reduction or have their antihypertensive(s) discontinued during training, it may be time. Always ask yourself, “Could this be sepsis?” Symptomatic hypotension should not be tolerated in any setting. At home, it is safest to catch blood pressure before it drops. Blood pressure crashes at home are aversive to patients and terrifying to care partners—and may contribute to dropout from home HD.
Has body weight changed? At home, patients will use their bathroom scale—and may not wear clothes to weigh themselves, which tends to reduce their scale weight a bit. Depending on the symptoms, dry weight may need to be adjusted up or down.
How is the patient breathing? Rapid breathing or dyspnea may suggest acidosis. Slower breaths might mean heart failure. A virus can change a patient’s breathing.
Does a patient have more urea? A BUN that is trending upward can mean a patient who is getting less treatment than during training: cutting treatments short, skipping treatments. Or, recirculation could be reducing the dose of HD.
Is anemia well-managed? Aim for a steady-state; roller-coaster ups and downs are extremely hard on patients (Schatell D, Witten B, 2004). Losing blood circuits or prolonged bleeding can contribute to anemia. GI bleeding in any patient or heavy periods or uterine fibroids in women can as well.
Does the patient feel weak? Look at electrolytes and CO2. Are potassium, calcium, or phosphorus out of range? Could the patient be acidotic?
Is the patient short of breath? A patient who has gained weight and complains of shortness of breath may have gained fluid weight, which would dilute lab values.
How long do set-up or cannulation take? Consider ways to reduce treatment burden, such as making up supply packs once every week or two, so each supply does not have to be gathered every day.
Does the patient feel rushed or stressed to get on or off treatment? We don’t want treatments to be cut short to allow patients to get on or off more quickly.
How many days a week does the patient NOT do treatment? Look at the treatment sheets with a calendar in front of you and highlight the 2-day gaps to alert the nephrologist. The ability to set a dialysis schedule is one of the pluses of home HD. However, skipping 2 days between treatments dramatically increases the risk of death. In a study of 375,482 deaths of PD and in-center HD patients, the chance of dying was almost 50% higher on a Monday or Tuesday after a 2-day treatment gap than any other day of the week (Bleyer et al., 1999). We heard of a patient who dialyzed Monday, Tuesday, Wednesday, Thursday—and then took 3-days off each week.
Dialysis is both an art and a science. Individualizing the prescription to an individual’s physiology is an art that is critical to ensure that a patient feels the benefits—and stays on the therapy. Small changes can make big differences for patients. These might mean that you:
Myocardial stunning—the heart muscle repairs damage with useless fibers (left ventricular hypertrophy; LVH)that cannot pump blood and that occupy space inside the left ventricle—reducing the ejection fraction.
Loss of residual kidney function (RKF)—any remaining kidney function is stunned. In a study of 1,524 people, (Lee YJ et al., 2020):
Ultrafiltration Rate (UFR) | Risk of All-cause Mortality | Risk of Loss of Residual Kidney Function |
---|---|---|
6 to <10 mL/h/kg | 43% higher | 73% higher |
10 to <13 | 51% higher | 89% higher |
>13 | 76% higher | 275% higher |
White matter brain damage—Aggressive ultrafiltration reduces the blood and oxygen supply to the brain.Cognitive impairment in seniors on standard in-center HD is three to seven times higher than the rate in the general population (Assimon MM et al., 2019). Stunning seems to be one reason for the discrepancy. Among 31,055 patients who started standard in-center HD in an 8-year period, those who had intradialytic hypotension during at least 30% of their treatments were at the highest risk for dementia (Assimon MM et al., 2019).
Help your patients connect the dots between their UFR and how they feel after each treatment. A free UFR calculator can make it easy for patients to learn what their max UFR should be to feel their best.
Wipeable vinyl stickers that adhere to the machine can keep the calculator front and center for patients as they set up their treatments.
The truth is, even urea—the easiest-to-remove (and least clinically important) solute—is barely affected by a change in blood flow rate from 350 to 450 (Golper TA et al., 2014). Creatinine, Vitamin B12, and beta-2 Microglobulin barely change, either. So, faster speeds don’t make much difference in HD clearance. But what they can do is damage fistulas and grafts. Why? Turbulence. The higher the blood flow rate, the more turbulence is created inside the access vessel. Turbulence causes endothelial cells to proliferate, grow into the lumen of the vessel, and cause stenosis that can lead to thrombosis and access loss (Agar J, 2020 webinar).
Anecdotally, some patients also report feeling anxiety or chest pain when the blood pump moves too quickly for their physiology. Turning the pump speed down eases their symptoms. In the home HD setting, there is no reason to “flog” fistulas by running at pump speeds faster than 350 mL/mi.
With more time and frequency available, we can help patients preserve their accesses, feel better, and remove more of the “middle” and larger wastes that need time. How do you persuade patients to do more of what they don’t want at all? Explain the physiology. Healthy kidneys work 24/7, very gently. The best way for patients to feel as good as they did when they had working kidneys is either to get a transplant or do a LOT more HD than the minimum.
At home, we have no reason to subject patients’ accesses to high blood pump speeds (or aggressive UF), because we have liberal use of time as a variable. It’s important not to overpromise “short treatments” as a benefit. More dialysis is more like having healthy kidneys.
Talk to your patient about exactly where things are stressful or difficult.
Kt/V is a minimal and very flawed measure:
Urea is a tiny molecule that diffuses between the fluid compartments and is not especially toxic. Urea is a low-cost, easy-to-obtain measure that unfortunately does not tell us anything about the status of any other middle or large or protein-bound solutes that are toxic and can accumulate to crippling or lethal levels when they are not removed.
A patient’s weight does not necessarily equate to fluid volume.
A patient’s weight does not necessarily equate to fluid volume.
As a nurse, you have a responsibility to not abandon your patients. You have to monitor them and do care plans, follow up, look at labs, document, etc. Your employer has to bill for services and pass audits and maintain good documentation. Your patients do not have any of these constraints. They are not thinking about your company’s business, nor should they. But, YOU must still ensure that they run their treatments—safely.
In the midst of many clinic-related responsibilities, you need to be able to recognize struggling patients. How do you do this? Watch for:
NOTE: You are likely to have more than one struggling patient at a time. Many first-year PD or home HD patients will have periods of struggle as they perfect their skills, adjust to a new normal, and get into a routine. Whom do you help first—and how? Review treatment flowsheets for your patients daily. Know who ran a treatment yesterday and who did not. If someone is not running today—and didn’t treat yesterday—you may have a phone call to make. Know your patients’ lab trends so you can watch for major changes and find out why. A patient who has skipped treatments may need a backup treatment to restore relative homeostasis (this is different than a respite treatment for a tired-out patient.)
Remember that the patient’s motivation impacts success at home. For example, we need patients to fill out treatment sheets—which many hate to do. Explain what’s in it for them. You might share that you look at these to see if they are having frequent alarms or interruptions you can address so their treatments run more smoothly. Home HD patients may resist the need to take monthly water samples and check chloramines. Show them what happens when blood comes into contact with chlorine. Use a syringe to drop a bleach mixture on top of blood, so they can see the hemolysis. Involve and teach patients to help them own the treatments they do.
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