As far as I know, every machine manufacturer recommends that patients have a partner. This is because how the FDA approved the machines. None of the machine manufacturers – Aksys, NxStage, B Braun, Fresenius, etc. recommend that patients dialyze at home alone. However, the decision about whether a patient can safely do dialysis at home should be one that occurs between the patient, the nephrologist, and the home training nurse.
Machine manufacturers do not train patients. They provide manuals for operation of their machines that clinic staff who were trained by the companies that make the different machines use to train patients. For a clinic to train patients to do any kind of home dialysis, including home hemo, the clinic must obtain certification from Medicare. This requires that a Medicare surveyor visit the clinic to be sure that the clinic has the proper policies and procedures, has access to equipment and maintenance, has the appropriately educated and trained personnel, has training materials, etc. The clinic must assure that care for the home patient is comparable to care provided in-center dialysis.
I feel strongly that unless it is impossible for one reason or another, the patient should always be trained to have primary responsibility for home dialysis. This requires that the patient feel competent and confident in his/her ability to handle the treatment and any situation that may arise. At the same time, the patient should know when, how, and who to call for help. Although some partners take on a more significant role, for many home hemo patients, their partner is merely an extra pair of hands when needed and someone to converse with during dialysis. The competent well-trained patient should be capable of setting up/tearing down the machine, doing his/her own needle sticks and securing the needles, making adjustments to the machine as needed, checking blood pressure and giving fluid as needed, recording vital signs during treatment, drawing blood (if done in the home), doing minor machine and water system (if needed) maintenance or calling for maintenance, etc.
During home hemo training, the experienced home training nurse goes through the training manual with the patient (the same manual the patient takes home). The nurse teaches the patient how to do all aspects of dialysis. Included in training is how to troubleshoot emergencies that may happen. I’ve seen nurses while training patients create emergencies (unplugging a machine, turning off water, etc.) to make sure that patients can handle these problems before they were allowed to go home. Like patients who do dialysis in a clinic, all home patients should be trained how to do a “clamp and go” disconnect from hemodialysis in the case of fire or other disaster. In the case of a power or water outage, a patient would learn how to hand crank his/her blood back. Keep in mind that some of the newer machines have battery backups to allow patients to take themselves off dialysis in the case of a power outage. Water outage during dialysis is not a problem for the Aksys or NxStage and new machines make it faster and easier for patients to give themselves replacement fluid rather than wait on someone else to do it in the event of symptoms of low blood pressure.
After a patient is home trained, Medicare mandates that clinics provide ongoing support to them. Before a patient is selected for home dialysis, his/her home is assessed to be sure that it will work for home hemodialysis. After training is completed, home training nurses and sometimes other personnel do a home visit when the patient does his/her first home treatment. I suspect most clinics do at least an annual home visit to be sure that the patient is doing dialysis as trained. The home dialysis patient has access to the nephrologist, nurse, dietitian, and social worker in-person during clinic visits and by phone as needed. Clinics require patients to provide logs of their treatments and some patients have been brought back in-center if they do not comply with this requirement. Seeing the documentation, the labs, and observing the patient in clinic should be good signs of whether the patient is doing his/her treatments as trained.
Multiple research studies on the effects of daily treatments (short daily and long nocturnal dialysis) have shown that patients on daily treatments report fewer symptoms during and between dialysis treatments than patients on conventional 3 times a week dialysis who have up to 2 days off between treatments. In fact, patients almost never have low blood pressure, rarely have cramps, rarely have access problems with one person cannulating their access, generally tolerate dialysis better and report significant quality of life benefits with these treatments, including reduction in dietary restrictions, less thirst, itching, fatigue, depression and improvement in energy, sleep, sexual functining, mental clarity and overall well-being. They take fewer medicines, have fewer problems with their dialysis access, have better nutrition, need less EPO to control their anemia. Plus, they have improved cardiovascular health. As you can see, many of the problems that have traditionally required someone to be present during dialysis rarely happen on the daily therapies and if they do, patients are given the skills to handle them.
In my opinion, it is cruel and inhumane treatment to require a patient to keep his/her access arm perfectly still for the entire dialysis treatment. Patients should be trained how to secure their needles so they won’t come out during normal movements on dialysis so it should be unnecessary for the sake of the access that a helper do all machine adjustments. In fact, machines now have screens that are at the patient’s height when sitting in a chair to make it easier for them to handle alarms and make machine adjustments without having to reach too far or stand up. Although in-center dialysis staff may require people to hold their arms still out of fear and misconceptions, some clinics allow patients on hemodialysis to exercise with their arms and legs during dialysis and none have reported lost needles or damaged accesses when needles were secured appropriately.
Finally, having worked with dialysis patients for over 25 years, I have known some that dialyzed alone in the “old days” and a few that dialyze at home alone today. Those who I’ve spoken with about this say that the risk of dialyzing alone is worth the rewards of having control over their dialysis and having a more normal life. In the past, some patients dialyzed at home alone after losing their trained partner. Often they did not tell their healthcare team because they did not want to be faced with having to return in-center and live with the disruptions that in-center dialysis often has on one’s life. As the machine makers say, it is best to have a partner when you do home hemodialysis. However, with our changing society, more and more people with kidney failure live alone and do not have someone they can depend on regularly to be present during home hemodialysis. Should these patients be forced to do in-center hemo if they can’t do PD? If a patient doesn’t have a partner, isn’t it better for that person to be honest about what he/she wants to do so the patient, the doctor, and the home training nurse can make the decision about whether in this particular patient’s case doing dialysis at home alone is safe and, if so, how to best prepare the patient for successful home dialysis? I’ll be interested in hearing patients’ responses to the concerns that you raised.