Safety First! How to Prevent Dangerous Home Hemodialysis Errors

If you gathered together people with intimate knowledge of home dialysis, and asked for their stories, you would surely hear a lot of really great things. We all like the good stories—of triumph, travel, and perseverance. Patients really do report a better quality of life at home. The overall mortality of home patients is lower than for patients in clinics, especially for those patients who run excellent and gentle treatments. The good stories are so abundant!

…But what about the bad stories? Are we glossing over those? Painting a pretty picture while ignoring honest and legitimate concerns?

Eventually, the not-so-great stories start getting told, too. It’s inevitable. For those of us who advocate for home dialysis, we are quick to point out that adverse occurrences are pretty rare. They are. However, critics seem to be quick to point out all of the “what-if’s” in play, and I personally feel safety concerns should always be addressed.

I follow several dialysis-related Facebook groups and have absolutely read things that were unsafe and alarming per my own standards. I have wondered about the extent of nationwide training standards due to learning deficits I’ve identified in a single post. I don’t mean to make anyone feel called out, but no clinic should ever be discharging a patient to home HD who does not know how to administer a saline bolus to themselves, for example. Not unless that clinic wants a patient to fail, or potentially die.

I have heard countless stories like this from patients that I’ve wished I could share further into the home dialysis discussion communities, because there’s good chance that knowing these anecdotes could make others safer, but hasn’t…yet.

Maybe now is a good time to start having this conversation.

For those of us that have seen, read, and overheard accounts by those who have done some home dialysis but transferred back to full-care due to a complication or preventable event, have we taken their grievances seriously? What can we do about things we know to be occurring so patients feel safer going forward? Are we adequately addressing the scary things? Are we recognizing that all humans capable of blunders, and therefore, all people require reminders?

Some of the most powerful learning takes place in the midst of errors, and we would likely be doing a much better job of educating staff and patients if we took a more honest approach in accounting for occurrences and were able to share our experiences in a more widespread manner, without fear. I wonder if there is a need for an anonymous way in which to do so…

I direct these questions to patients and staff alike to address in the comments at the end of this blog:

• What some real things you have learned in dialysis by error or accident?

• What are things everyone needs to be warned about so we can be safer as a community?

• What preventable mistakes have you have made, or witnessed, that would serve as good teaching moments for the benefit of others?

I have a few of my very own I’d like to start the conversation with:

Verify Functionality of Blood Leak Detection Alarms

If you read the forums enough, you will inevitably come across several stories from patients that involve running treatments without blood detection alarms on the exterior of their machines and experiencing an undetected catastrophic loss of blood because of it.

A loose connection, missed heparin-line-clamp, or slow leak over a long treatment can cause a person on dialysis to lose a lot of blood very, very, quickly. Everyone should have simple battery-operated devices that can save lives by emitting a loud, annoying, ear-piercing, screech when they become wet if running hemodialysis at home. If it were up to me, patients would have no less than three of these, one for the machine, one for the chair, and one for the floor. I have admittedly been called “extra” by patients. I don’t care. I much prefer an annoyance to a tragedy. The clinic is required to provide these alarms to patients.

I have no idea how many people are currently out there running treatments without a functioning alarm, but I really wish no one would ignore this small safety precaution. Batteries die. The devices eventually wear out and the connections rust. When they do not work, they cannot save lives. Are patients really checking these packs for functionality regularly? Are clinics reenforcing this? Do patients know that they can touch a damp paper towel to their moisture sensor to make sure it works? I am not so sure.

I once decided to check my theory by surveying about 50 people on home HD and asking them to check their sensors over the phone. I found 14 who had non-operational alarms. Advise patients to check sensors and replace the batteries. If this advice saves one person from the horrifying realization that their blood is all over the floor, it is a win.

Resist Alarm Fatigue and Button-mashing

I have also heard many stories about patients ignoring or resetting alarms automatically, without doing any precautionary status checks on themselves or their systems. Alarm fatigue is a thing in clinical care, and everyone should be aware of it.

Those who are regularly exposed to the beeps and alarms of medical devices can very easily become desensitized to the sound (“tune it out”) and can fail to respond appropriately if used to repeated false-alarms. This is a dangerous way to lose control over a situation, and clinicians are warned about it. Are patients?

Even when alarms are annoying or redundant, they are built into machines to prevent potentially harmful human errors. If a machine is detecting a change or an unsafe condition, it’s reckless to not follow-up by checking the situation and ensuring that nothing is abnormal. I have witnessed several patients in the forums who had partially dislodged needles and ignored pressure alarms—not realizing that the alert was indicating blood loss. Preventing alarm-blindness and reminding others that this is critically important to be aware of is the responsible thing to do.

Whenever there is an alarm, there should be a corresponding checklist of actions to ensure safety. These things can’t be ignored without being unsafe, and complacency is very dangerous when dealing with an entire blood supply. Never forget what you are doing and why. It’s okay to go slow and be meticulous, better than the alternative for certain.

Be Mindful of Rinseback Direction

This is a story that I’ve heard personally, read in literature, and seen out there in the online world several times as well. I have a terrible suspicion it is a more common occurrence than anyone realizes or readily admits. When we return blood in dialysis, the arterial (red) patient blood supply is replaced by saline, which is pulled to the filter and then pushed back to the patient through the venous line.

It is possible (on almost all machines) to accidentally get the circuitry wrong and connect the venous (blue) bloodline to the saline source instead. If this happens and goes unchecked, blood will be directed from the patient’s access directly to the saline bag. It is exsanguination (“bleeding out”) within a closed system.

I once had it happen to a very experienced patient of mine who thankfully caught it when they began to feel dizzy and saw the saline bag full of blood and on the brink of rupture. There was no horrible outcome, as the patient knew to reinfuse everything back slowly, and call for help immediately, but there have been documented deaths from this.

If more people were aware of how easily this type careless error can be fatal, perhaps the excitement of treatment being completed would lead to a less-rushed return, a more careful disconnection of bloodlines, and a life saved. One can hope we are showing patients, in training, exactly how this error can occur so that it is prevented.

Keep Blankets and Absorbent Surfaces Away from an Access

Every person who has ever worked in dialysis has likely been warned of the dangers of allowing an access to be covered during treatments. Blood leaks happen completely non-dramatically most of the time and that is what is terrifying—how silently and peacefully they can occur.

Patients in centers dialyze on non-porous chairs. I have personally seen a slow leak from an arm roll under and behind a patient’s arm in such a chair and go unnoticed for a long time even without blankets, and even with tons of excellent staff present. It can take quite a while for blood to roll down to the floor and be noticed. We think of “bleeds” as big dramatic arterial events. They aren’t always. Sometimes it’s a drop at a time, very slowly.

At home, the chances of a blood leak from a needle going unnoticed exist, especially without the constant pressure from technicians and nurses in the clinics to not cover-up an access. Patients and their partners have to be keen on self-policing for safety on this one. Patients are generally pretty chronically cold from anemia and illness. It’s easy to understand the temptation. It's also easy to understand how a fatal bleed can occur into a blanket or mattress without anyone noticing a single drop of blood fall. Towels and absorbent surfaces can make an already difficult thing to identify, impossible.

Are we showing patients in training how much fluid a blanket can hold? Are we explaining in terms of blood-pump-speed how quickly it could happen? Are we giving reminders frequently to reduce complacency? We owe it to patients to be doing this. The whole community needs to be able to see the danger and prevent it. One patient loss at home could jeopardize the autonomy of thousands.

Avoid Careless Errors

A nurse told me a lively story once at a conference about an elderly couple who had gotten themselves into a very embarrassing situation. As some of us might know, a lot of men on dialysis struggle with erectile dysfunction but many have also noticed that obtaining a natural erection is sometimes more possible during dialysis. The story I was told was that this couple, decided to take advantage of the opportunity and tried to have intercourse in the middle of treatment.

Somehow, the female partner’s leg ended up tangled up in the male partner’s venous blood line. The needle remained, but the connection between the needle and lines came undone. Blood sprayed the room like a fire-hose for a split second, and then the line fell to the bed. This was noticed instantaneously and the blood pump immediately stopped itself. Some precious blood was lost, the system was lost, and the sterility of the needle-end was questionable at absolute best.

Even though the patient survived this event relatively unscathed, with only a funny story to tell the grandkids, it’s very important to remind people that vigorous activity (God bless them, truly) really ought to be avoided during treatment to prevent line separation or needle dislodgement or blood pressure drops! This story is a really good example of why this advice is given. It isn’t actually funny, it would be if it were not also very dangerous.

I’d love to hear the stories and situations others out there have experienced that are scary, but would make home dialysis safer. Please comment below, anonymously! With time and skill can come complacency. I used to ask patients of mine to tell on themselves when they made mistakes so that I could communicate the lessons to other patients of mine for the sake of safety. Stories are how a lot of people learn best. If we can understand the bad stories more completely, hopefully we can make the good stories more frequent, and keep people happy and safe at home longer.