Train Dialyzors, Not Care Partners!

Back in 2018 (Nov. 29th for those interested) I wrote a blog post about why I prefer home hemodialysis over in-center. One of my strongest points was how patients are ushered into a state of learned helplessness when dialyzing at a dialysis center.

Care Partners are Being Trained

Recent threads in the Home Dialysis Central Facebook group have sent me back to the keyboard to talk further about this issue. This time the problem is not in-center vs. home, it is the issue of care partners that makes me pipe up. Not so much care partnering in itself, but the fact that care partners are the ones being trained. C’mon people, it’s 2024, not 1924. Patients shouldn’t be treated as if they were rotten eggs. We are not totally crippled by our kidney disease. As far as I know, kidney disease has never paralyzed neither arms nor legs of the person with the disease, so why is it that their loved ones have to act as arms and legs for them? Yes, we can be cognitively challenged sometimes, but not at all to a degree where we are not able to do everything needed to do our own treatment.

There once was a time in the good ol’ US of A where a care partner was required for someone to go home. Further back in time that was also required in other countries. Now I think only Germany has such an inane rule in place. Now that rule doesn’t exist, why is it that (primarily American) couples are taught in a way that completely cripples the patient and teaches only the care partner to do the work? It boggles my mind to no end that this is happening when ideas like “patient involvement” and “patient centered care” and “patient participation” abound in healthcare all around the Western world. I am still waiting to hear someone mention or see one article about “care partner centered care” but apparently it thrives in dialysis clinics all over.

Understanding Learned Helplessness

I started out by mentioning the term “learned helplessness.” Please, allow me to explain what that entails. I am a psychologist, so to me it is a very specific thing, namely: the mental state that occurs when an organism is forced into a situation that is painful or unpleasant. After a while that organism (or person if you will) stops fighting because they know there is no escape, so when they get into an escapable situation they will no longer have the stamina to flee because their experience tells them they no longer can control the situation.

That is what happens when we as patients are not playing an active role in our treatments. We are tethered to a machine for so many hours, which in itself gives us a feeling of helplessness, but that is not the issue; it is just a fact of the situation. What is at stake here is how we didn’t participate in the setting up, how we had someone else poke two needles, presumably the size of a medium sized drinking straw, into our arm, and do all of the other things that have to be done to get ready for a session. I don’t care if it’s techs, nurses, doctors, or our loved ones who do the preparations. The feeling of learned helplessness is the same.

Both Parties are Held Hostage

That is just the beginning of my professional concerns as someone who has studied the human psyche. The other one is how both parties become hostages to the situation. You are caught in a game of what I would call “care dependency,” where you are dependent on each other in an unhealthy way. Going back to the hostage terminology, you are in a situation that could easily be called “mutual Stockholm Syndrome.” Someone somewhere (usually the training staff at your center) told you that this is the way it has to be, and you internalize a thought whereby you hold yourselves and your partners in the bind of someone else’s words.

This could be stopped if the centers would do as they are supposed to do, which is train patients to become self-reliant and self-sufficient. The patient would also learn other skills like pride in what they have accomplished, and determination that this is a skill they are good at, dialysis is my treatment for my kidney disease. When clinics train carers, they inconvenience the carer—who no longer has the freedom to do chores, work, or many other things—while at the same time the patient learns to be docile and dependent.

If it was up to me to run a training facility, all family members would be welcome to come see and not touch. If they wished, they could learn along with the patient but nobody but the patient would learn the skills necessary.

Now I can hear all the care partners crying out all the excuses for why their loved ones are unable to do their own treatment; disability being the number one reason. So let me tell you, I have been disabled my whole life. I have one leg, and that one doesn’t work because of a spinal disorder. Despite being in a wheelchair, I have done my own treatment for nearly 13 years. I have traveled the world with my cycler (yes, I have had help with that) and everywhere I have had things set up so I could do my treatment. Is it because I don’t trust anyone else to do it? Perhaps. If I am hospitalized I also usually do as much of my treatment as possible—especially hooking up and getting off the machine.

Self-Cannulation is Key

As I have said so many times over the years, Everyone who can see and reach their access needs to learn to stick themselves. It’s like brushing your teeth: once you learn it you will never let Mom (or anyone else) do it for you. And I have yet to find a person who self-cannulates that disagrees with me on that. Having control of both ends of that needle makes it much easier and much more painless.

So, please, please, please! No more care partnering gripes on social media. Go back to those who trained you and demand that the person dialyzing is the person doing all the work that comes with it. Release yourselves to do other things. There are so many ways we can support each other that are so much more healthy than doing someone’s treatment for them.