So, you want to grow your home program. How do you go about it? Several successful programs have shared their experiences growing home hemodialysis (HD) and peritoneal dialysis (PD) programs on Home Dialysis Central (www.homedialysis.org/pros/start/experiences/1). Here are some additional straightforward steps your clinic can take to increase the number of people who will consider home treatments—and succeed at them.
Step 1: Offer Hope
Take a moment to imagine yourself as a patient. Seemingly out of the blue (you feel ﬁne!) your doctor sends you to a nephrologist, who explains that you have end-stage kidney failure. You will die if it is not treated. You are terriﬁed, furious, disbelieving—maybe all at once. All you know of dialysis is what you've heard in the media (“A fate worse than death…”; “Saved by a kidney transplant!”) or perhaps you recall a loved one with kidney failure who passed away years ago after a brief, but terrible, stint on dialysis. You earn a good salary and support your family. Or, you enjoy an active retirement that involves travel. Will you still be able to work or travel? Will you lose your home? Will your children have to leave college? Will your partner leave you for someone healthy? Will life be worth living, tethered to a machine? Maybe it would be better to just die now and not burden your family?
Messages you give patients about the chance of having a meaningful and fulﬁlling life on dialysis can help them move forward and become active partners in their care, such as by trying home dialysis. A recent study looked at the role hope played in helping 103 people adapt to dialysis. Patients who felt more hopeful were less depressed and anxious, felt their kidney disease was less of a burden, and had better mental function than those who were less hopeful.1 It is common sense to suggest that giving patients hope may help prevent depression. Hope is the single most important thing for you to convey to your patients ﬁrst. Here's how:
Focus on patient priorities, needs, and lifestyle, and how to help patients achieve their goals.
- 1.Say that it is possible to have a good life on dialysis—if patients stay hopeful, learn all they can, and follow their treatment plan.
- 2.Share examples of other patients who have done well on dialysis for many years (maintaining privacy for HIPAA, of course).
- 3.Explain that there are lots of treatment options now (both dialysis and transplant) that can help them to feel well and have a good quality of life.
The takeaway: “Your life with dialysis will be different, but it can still be good.” Home dialysis and hope for a good life go hand-in-hand.
Step 2: Learn Patients' Priorities
What do your patients want out of life? What is most important to them? Knowing what really matters can help you tailor your messages to be sure they're heard. If you ask your patients about their lives and ﬁnd out what really matters to them, you have an important clue to their motivation, and a “hook” to hang information on so it is more likely to be heard.
Case Study 1:
Myron S., age 37, is a single father of two sons, ages 8 and 11. He has no family nearby and the boys' mother lives three states away. He works full-time at a delicatessen, and then picks up his sons from afterschool daycare. Kidney failure was a complete shock; he had no health insurance and did not realize his type 2 diabetes was “that bad.” His priority is keeping a roof over his sons' heads.
Frame your modality conversations with Mr. S. in terms of how he can keep his job and care for his boys. In-center hemodialysis would be a very poor ﬁt for his life: it would make work nearly impossible. Without a job, he would not be able to afford summer daycare, so his sons would spend three half-days per week in the waiting room during his treatments. Overnight in-center treatments would leave the boys home alone at night. If PD is medically appropriate, it could be a good choice. Or, perhaps he has a friend willing to be trained as partner for home HD, until the older son could take on that role. He could get listed for a transplant, and make plans for the boys while he is recuperating.
Case Study 2:
Lydia R., age 59, raises purebred spaniels and keeps the books for her husband's home remodeling business. Her kidney failure was due to hypertension, and she also has congestive heart failure (CHF). Mrs. R. and her husband enjoy taking one- to two-week vacations in their 40-foot RV to go to dog shows and visit their grandchildren. Her priority is to “keep traveling as long as I possibly can.”
With a willing partner, any form of home dialysis is open to Mrs. R. Portable PD or HD machines would facilitate RV travel. Her CHF might beneﬁt from nocturnal HD—and with the presence of multiple dogs in the home, this might pose less risk of infection as well.
Step 3: Explain the Lifestyle Advantages of Home Treatments
Dialysis is far more than just a medical treatment: it has an impact on every aspect of a patient's lifestyle, from what they can put in their mouths to how many pills they must take each day (the median number of daily pills is 19 for in-center HD),2 whether employment or travel are possible, sleep quality, sexual relations, fertility, hospital stays, and survival itself. Patients “preferred renal replacement therapies that enhanced their freedom and autonomy and were convenient, effective, and simple. Treatments that minimized conﬁnement and risk also were viewed positively,” found a new study.3 Yet treatment-option education tends to focus on describing what the options are, not explaining how they will affect lifestyle.
Detailed explanations of how each modality is structured can wait. Instead, keep the initial description brief and focus on the lifestyle implications ﬁrst. Once it becomes clear that a certain choice is a good ﬁt for the patient's life, then there's time to review any disadvantages (e.g., need for substantial storage or a partner). With the patient in problem-solving mode, he or she may be able to ﬁgure out ways to overcome potential problems, such as moving in with a friend, ﬁnding a storage unit for extra furniture to make room for dialysis supplies, or offering free rent in an extra room in exchange for help with dialysis.
Step 4: Find Patient Mentors
How much time does it really take to set up a NxStage machine or make a batch of dialysate with a PureFlow device? Is it really possible to sleep on a PD cycler? How do you organize your supplies so you can ﬁnd what you need? Some questions are best answered by the people who are doing home treatments: patients. Putting new patients in touch with other patients creates an opportunity for the new patients to feel more comfortable with the idea of home treatment—and for mentors to feel as if they are “giving back.”
It's important to train patient mentors; no one wants to see a scenario where people trade medications or change doses on the advice of another patient. Since each person's health history differs, medical treatment advice that works for one person may not be appropriate for another. The chance to share the real story with someone who is living it can help a new patient see that home dialysis is not only possible, but better than standard in-center HD for maintaining lifestyle.
Step 5: Support Care Partners
Conducting “exit interviews” with people who drop out of your home dialysis program can provide you with information that can help you strengthen your program. This may mean updating your training techniques. In particular, be sure to consider how your training program supports care partners.
At the Medical Education Institute (MEI), we use the phrase “care partner” on purpose, instead of the more common “caregiver.” In our view, partners are on equal footing, while “caregiver” implies:
A passive patient and an emphasis on the “sick role” that is counterproductive for a chronic illness;
Moving an in-center model into the home, with the partner becoming the nurse or technician, and taking on total responsibility for performing the treatment.
Anecdotally, we ﬁnd two groups of home dialyzors:
- 1.Group 1: Active in work and/or travel, and relatively healthy apart from kidney failure.
- 2.Group 2: Very ill, frail, multiple comorbidities, amputations, morbid obesity, tracheotomie, and their families feel more comfortable caring for them at home than transporting them to and from a center three times a week.
Care partner involvement in HD can range from 0% to 100%. Group 1 care partners may need to do nothing at all for PD, or very little other than be present during home HD treatments. Group 2 care partners, on the other hand, may be responsible for dialysis and the patient's other personal care needs.
What seems to be helpful, at least for patients and care partners doing daily home HD4 is for Group 1 patients to do as much of their own treatment as possible, especially cannulation, which can be highly stressful for a care partner. Automatically using a training model that turns partners into nurses or technicians—regardless of a patient's capabilities—may burden care partners enough that home dialysis fails and patients end up back in-center. Help patients and care partners establish clear expectations during training for who will do which tasks, and how to negotiate changes if the patient starts to feel better.
Supporting successful home dialysis is more easily done with a patient-centered framework of care. Focus on patient priorities, needs, and lifestyle, and how to help patients achieve their goals—and it is likely to pay off for your clinic in terms of program growth, larger numbers of working patients who keep their employer group health plans (improving clinic payer mix), and reduced dropout after training.