View from the Chair: Why Some People Don’t Choose Home Therapies
MEI would not have started Home Dialysis Central nearly 21 years ago if we didn’t absolutely believe and see among thousands of people that PD and home HD can dramatically improve lives vs. the standard in-center HD 85% of U.S. patients receive. But, sadly, not everyone shares our enthusiasm for better dialysis. A social media group asked its members the question, “If you do not want to do a home option, can you share your reasons?” I’ve categorized the answers and responded to them in blue.
The Pervasive Impact of Fear
Never underestimate the power of fear, y’all. Most people who do in-center HD are context bound. They know what happens to them and what they see and hear around them in the clinic—and it’s a tough sell to help them imagine their lives could be vastly better if only they would do at home what it takes an entire clinic, water treatment room, and clinical team to do in-center. Fear of losing that support arose often in this conversation:
“In center people are trained to fix the situation.”
“I wanted a pro around in case something went wrong.”
“He has many issues with his treatment and I am thrilled that the nurse and/or tech is there to take care of it. I don’t think I could handle any problems.”
“I like having a nurse there. The guy next to me had a heart attack and they brought him back 5 times. Thank goodness he made it.”
“No partner and my BP drops sometimes, so I’d have problems.”
“Dramatic BP spikes and drops we’re not prepared for…”
“It frightens me to be alone with all of it. Alarms go off often in center. I would be a wreck.”
God forbid something came up and I needed help, I just might die right there or be in crisis. So never happening for me, thank you very much!”
“I’ve had my blood pressure dip too many times in center. Fortunately there was techs to fix the problem…imagine being home alone and that happens.”
Here is something in-center patients don’t tend to know—and you can help them learn:
Heart attacks and plummeting blood pressure are both more likely when in-center HD treatments remove water aggressively. Among the key benefits of PD and home HD are the ability to dialyze gently, more frequently than the roller-coaster of 3 days a week, and on schedules that fit patients’ lives. So, the alarms, crashes, and crises are far less likely—and patients are trained to handle them. Having home patients talk to in-center patients can be a great strategy.
Needless to say (sorry, couldn’t resist), needle fear is also a logical concern for some who might otherwise contemplate home HD:
“I’m afraid of needles and there is no way I could stick myself.”
“I am thinking about it, but my absolute biggest fear is the sticking. ”
“My second reason is I think I’d have a hard time sticking myself.”
“I'm afraid to cannulate myself. I am a hard stick. In center, the staff had a horrible time sticking me, with multiple infiltration and misses. Now I am in the experts section, and one tech sticks me every time and always gets it now. My Venous line is deep. My expert tech says you have to go in at about a 45 degree angle and most techs are uncomfortable going that deep. My veins are small, deep, and roll. They don't pop up much under a tourniquet.”
“It scares me. But if I were to get good at sticking myself, then I would be quite interested in learning more about doing home hemo.”
A word to the wise: confront fear head-on. Of course people are afraid to place needles the size of roofing nails into their arms. Who wouldn’t be? Rather than gloss over needle fear, bring up the elephant in the room to patients who are capable but unwilling: “A lot of people I talk to about treatment options are really afraid of needles. It’s very common—and it’s possible to get over it. Once people get up the nerve to try, they never want to let anyone else touch their needles. They say it would be like having someone else brush your teeth. It hurts less when you put the needles in, since our brains can only focus on one thing at a time. And, you are the only person on earth who can feel both ends of the needle. So, you can do this better than anyone! Plus, we can get you numbing cream, so you may not even feel the poke.”
Pro tip: train the patient, not a care partner. A patient who can see and has fine motor control can succeed. Can’t see well? Put a Sharpie dot on the arm for a patient to practice aiming at. Reading glasses can help, too. Some patients want to learn to self-cannulate if they can get over their fear, and those who do are glad they did:
“I would like to learn how to stick myself so I am not at the mercy of others when my tech isn't there. My house is small, and I'm not tidy, but I could overcome those obstacles.”
“I do home dialysis now 3 years and love it, the hardest part was sticking myself, now I'm a pro at it and the freedom I have is great!”
Storage Space Limits
A first supply delivery can be a tremendous shock for those who do PD or home HD, and disposing of the sturdy boxes and plastic medical waste can also be overwhelming, especially when patients or partners have mobility limitations:
“My biggest reason is lack of space in my already crowded home. I tried PD and the amount of supplies they drop off is insane!”
“So many supplies. They took up my entire front atrium, then into my living room, plus what’s in my bedroom. Liquid boxes are extra sturdy and really tough to break down. It looked like I moved in every other week.”
“My husband now does center HD, after 2.5 years of PD. I would need to do everything. I have bad arthritis and don’t think I could lift the boxes, etc.”
“I'm alone and have no space for the equipment, etc.”
“I live alone in a small apartment, 2nd floor, and I don’t want all the those boxes or supplies in my home.”
PD supplies do take up a lot of space in a home, but most patients are not aware that the bags can be delivered twice a month and stored in space-saving under-bed or drawer bins instead of boxes—and hopefully PD fluid on demand will come in our lifetimes…. Some HD supplies need far less room. NxStage supplies use about 1/3 of the volume of PD, and Tablo home HD needs about 1/3 the space as NxStage. Sharing this may help patients consider whether there might be ways to overcome their objections.
PD and home HD supplies don’t just take up physical space, they occupy emotional space as well, medicalizing a home, so patients can’t avoid dialysis. This is a separate-but-related issue for some:
“I wanted to keep my dialysis life separate from my home life.”Bottom of Form
“I want my home to be a place of peace and rest, away from dialysis.”
“I need to keep my home as my sanctuary....putting medical equipment and supplies in my home will not feel good. My dialysis stays on the unit. I’m free from it at home. I need that absolute separation.”
People want what they want, and adults have the right to make choices about their medical care. But, I always wonder whether those who want sanctuary realize what they may be giving up: things like feeling well from day-to-day, sleeping better, regaining libido, getting off the roller-coaster of aggressive in-center treatments, perhaps avoiding or even healing left ventricular hypertrophy that could prevent a transplant. My money’s on no. Using our free My Kidney Life Plan decision aid can help patients see how each option can affect what matters to them, so they can make informed decisions.
Time Constraints
To be worth the effort, PD or home HD need to make patients’ lives noticeably better. If this promise is not kept, the return on investment is simply not there:
“I still work, so I’d have to get up earlier to clean up in the morning.”
I can’t do PD because of my autoimmune disease. I would have to quit my job. Can’t do home hemo at the moment because my clinic can’t work with my schedule to do the 6 weeks of training. I can’t take 6 weeks off from work.
I don’t want a part time job.
Training was going to be Mon, Wed, Fri. 8am to 1pm, for 10 weeks. No afternoon training available. Far too much time off work.
I already have no time between full time work and dialysis.
Flexibility on the part of home training programs could increase success rates for PD or home HD. Time is at a premium in the lives of busy people, especially those who’ve managed to keep the full-time jobs they need to pay their bills, send their kids to school, etc. The fit of a treatment option to lifestyle is a key ingredient in the time recipe, and one that is all too often forgotten. Keeping a job with a health plan has benefits for patients and the clinics that care for them. Patients who work daytime hours can’t just vanish for 6 to 10 weeks and expect to stay employed, and the Americans with Disabilities Act protects only those at companies with more than 15 employees. Consider late afternoon or evening training. Please.
Conclusion
I’ll leave you with a few comments from happy home dialyzors. Think about these when you encounter patients who are afraid or think they won’t succeed. Be a cheerleader for them. You can make a difference in their lives if you help them see the big picture.
“I do home dialysis on PD because I’m a private person. I can’t imagine sitting in center with other people hook up to they machine with all negative comments and complaints trying keep positive mindset at all times threw every treatment.”
“I am using a CVC line to connect to my dialysis machine at home. I feel safer in my apartment than anywhere else. Love it!”
“I love doing it at home—more freedom!”
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