Home Dialysis Training and Back Up: Patients Need a Safety Net!

A few years ago, we had a call from a woman who’d had just 3 days of PD training, and within a matter of weeks, was hospitalized with pneumonia. Her strictly technical, how-to-wash-hands-and-do-exchanges training left out the troubleshooting part of the treatment. She had not learned, for example, how to recognize fluid overload based on her blood pressure and symptoms. This should never have happened. And, it occurred before the bundle created an incentive for clinics to push PD. (Beth Witten blogged about CMS expectations for PD training here.)

Successful home dialysis requires patients and families to find space for a machine and supplies, decide who will do which tasks, and fit new, complex, life-saving treatments into already-busy lives. Starting dialysis is a bit like bringing home a new baby. You don’t know the baby yet: it may be easy—or may not be. A baby will throw a wrench into your schedule, require time-consuming doctor’s appointments, and will permanently change your life and your perspective. But, when people have babies, we know they need emotional and instrumental support. We may bring over a meal, offer to run errands, keep the new parents company while they get to know their newest member. We don’t tend to think about the emotional support needed to even contemplate a home treatment. The unknown is terrifying. People have to want home dialysis (or anything else) more than they are afraid of it. It’s a tremendous challenge to get people to consider a home treatment. When they make that leap and then drop out during training or in the first few months at home, it is often because we have failed to support them effectively, and that is a heartbreaking waste of opportunity—as well as a costly use of limited training resources.

Many patients worry about burdening their care partners if they choose a home treatment. Please notice that I purposely did not say “caregivers,” a word that carries the connotation of a heavy load for a home treatment helper. In fact, I believe that using the word “caregiver” may scare away some patients and partners before they even consider home dialysis. Let’s reserve this term for people who have multiple, severe comorbidities and truly are debilitated enough that they require something close to total care. Care partners do not need to feel burdened by a partner’s PD or home HD when the dialyzor does as much as possible by him- or herself. Please avoid turning care partners into dialysis technicians unnecessarily. PD can be done without a partner, and some safely do home HD without one as well.

Before an individual and partner start home training, download our free PATH-D tools and use them to help people decide who will do which tasks. Do a skills assessment to ensure that the dialyzor can perform all of the tasks that s/he would like to perform, and then determine a schedule and when the partner would need to be present. The fewer tasks a partner needs to do, the less his or her schedule should be disrupted by home training. Every partner should learn how to stop the blood pump and dial 911. Beyond that, individualize training to meet each person’s needs. CMS does not list specific task requirements for care partners. Being reachable in the home during treatment may be enough. The PATH-D can be used again any time circumstances change.

Recognize that the transition from training to home is a uniquely stressful time. Practicing tasks in a training room with a nurse within voice range is not the same as being at home. The chair is different. The machine may be at another height. Supplies are not in the same places. While in time the home location can become a source of comfort, in the short range, the home has been medicalized, which can be very upsetting, and the routine is not yet set. This is the point where people have the most questions, and where back up is the most crucial to prevent dropout. This is the time when being proactive and calling patients at home can have the best payoff in terms of long-term success on PD or home HD. We advise people to clear their calendars of anything that is not essential, ask friends or church family for casseroles or cook ahead and freeze meals, and expect to feel overwhelmed at first—and that, like driving a car, home dialysis will get easier when they are used to it. Online discussion groups like our Home Dialysis Central Facebook group can help people succeed at home by offering support and information. In fact, I asked our group about their experiences of support at home.

Here are some examples of how back up support should work:

• “We have our nurse’s personal cell. She always answers or calls back soon.”
• “I have nurses home, cell, text, and email. I also have backup nurses, nurse supervisor, clinic manager, and regional director. The one time I used my on call nurse, who was in another state, she was very responsive, and by next am I had 3 nurses in my home to address the issue.”
• “After hours we have a main number to call. They get our name and info and within minutes we are connected with the on call PD nurse.”
• “I have a great nurse with an on call number I can get her at or text her. I try not to bug her after 9pm but occasionally I needed to and she always texts me back or calls.”

And here are some things that should never happen—but did despite the requirement in the ESRD Conditions of Coverage for dialysis clinics to inform those doing home dialysis and their care partners (if applicable) how to contact someone 24 hours a day, 7 days a week for medical and non-medical emergencies¹:

• “We had the 24 hour on call phone number but no one ever answered it. One time the on-call nurse answered in a VERY irritated voice. I nearly hung up because I got so upset that she would answer like that. I don't call it any more.”
• “We called the on call nurse a few times after business hours and left voice messages but did not get a phone call back.”
• “In the beginning I had nurses' cell/home numbers. Those nurses ALL left. The new director & new nurses never give it...even when asked. I only called the original nurses once in beginning (after forgetting to hook up drain line so saline bag was blowing up!!). I would hesitate to EVER call “off hours,” but my frustration is not having an option. They often don't answer during business hours! I have resorted to calling a tech who worked on me 9 years in-center. He obviously is careful not to give medical advice. The NxStage technical support is very helpful...but again not medical advice.”
• “There were a few times where I had to leave a message and never received a return call despite calling numerous times.”
• “I don’t have any numbers to call. The nurse who trained us has retired. The ones that have taken over never gave us contact info. The on call nurse, I talked to her once, she said she had no clue what I was talking about with HHD. I never called the back up again. I think I know more about HHD than the current nurses we have.”

Back-up is an integral part of home dialysis: the safety net. Patients need to know that someone will answer their questions patiently and accurately and advise them in a way that relates to their medical situation. During training, you can help them differentiate when to call the machine manufacturer and when to call the back up nurse. Failing to provide safe and timely back up can contribute to drop-out rates for your home program, and could lead to a patient injury or death that you and your clinic may be held responsible for. Making an effort to improve your home training and support can pay off in terms of increased patient satisfaction, better home dialysis retention, and successful patients who make you feel good about what you do.