Home Dialysis – An Antidote to Learned Helplessness

This blog post was made by Henning Sondergaard on November 29th, 2018.
Home Dialysis – An Antidote to Learned Helplessness

I have had chronic illnesses for more than 50 years. I have been a wheelchair user since I was 10 years old. So, I have used assistive technology my entire life. I have always relied on medical devices to live a good and fulfilling life.

But I have never felt so disabled as I did the first time I set foot in a dialysis ward seven years ago. Not because my kidney disease or the need for treatment, but because of the way I was met by clinic staff. There was no way I could have expected the conditions I experienced. I had feared death because I knew most dialysis patients died within a decade of starting treatment. But after having seen how people are treated, I think death is a merciful option for many. The staff were not cut out to deal with real live people. They treated us as objects to be worked on, not as sick people going in for our treatments.

After my initial brush with in-center dialysis, I started joking that all centers should be placed at least ten stories up—so people had the opportunity to jump out the window any time they had had enough. As the years have passed I have realized how there in more truth to my morbid joke than even I wanted to admit when I first came up with it.

Thank God I knew I wanted to do home hemodialysis long before dialysis became imminent for me. I have seen enough of the inside of hospitals and clinics to know it would never work for me spending hours several times a week in such a place. It wouldn't be good for me and it certainly wouldn't be good for those around me.

To help me to explain why I think in-center is so bad from a mental health perspective I will turn to the last remaining grand old man of home dialysis that I know of, Dr. Chris Blagg. He has explained my point of view more aptly than even I have been able to:

"Patients dialysing in a centre easily become dependent on their doctor, nursing staff and the machine, and when patients lose control of factors that can gratify or hurt them they are eventually reduced to a state of `learned helplessness'." Involvement in their own care is important for all patients with a chronic disease, and particularly for those with chronic renal failure, wherever they dialyse."1

In psychology, “learned helplessness” is a mental state in which an organism is forced to endure stimuli that are painful or otherwise unpleasant. Thereby the organism becomes unable or unwilling to avoid subsequent encounters with those stimuli, even if they later become 'escapable,'—presumably because it has learned that it cannot control the situation.2

Does this sound familiar? I know when I first read the article in which Dr. Blagg makes the above statement, I had a light bulb moment. I have studied learned helplessness at university so I knew about it theoretically. Upon seeing his explanation of in-center dialysis I realized what I had felt while being in-center for a few weeks before I went home. It was learned helplessness. Why hadn't I realized that before? I had been so steeped in the dread of it I had not been able to relate my theoretical knowledge to my lived experience.

The act of being tethered to the machine renders me physically bound and somewhat helpless. But it isn't so much the tethering. I can mentally connect that to my physical survival. It was the circumstances surrounding the tethering that made me go crazy. The strict rules and regulations. The fact that I had to be in a certain place at a certain time. I had to sit in a certain spot next to certain people I might have nothing in common with except for the fact that we are all tethered. The arbitrary ways in which particular staff members treats you while you are there. The way you are rendered dependent on other people's supposedly merciful acts of kindness.

In in-center dialysis learned helplessness is formulated and institutionalized by a culture where healthcare workers end up potentially doing an incredible amount of harm to the minds of patients while they work on saving the bodies and lives of said patients.

I refuse to believe the harm is intentional. It is simply is the result of the situation where we are not able to escape because of the physical situation of the treatment. So, we have to endure whatever they dish out. And most people just sit there and take it all in. What else can they do?

The worst thing might be the utter lack of control people are subject to. Not being allowed to control anything about your treatment baffles me to no end. How can this ever be to anyone's advantage? I can only see it as an ugly power game.

I theoretically understand the fear people feel when they are offered to self-cannulate. But I also know that once someone learns to do it they are extremely reluctant to ever having anyone else do it. It is now an established medical fact that pain is a mental more than a physical thing. We also know that pain is much easier to control once we feel in control of our own situation. I am not always able to explain this to my fellow patients but when I am, they usually learn to self-cannulate in no time flat. But I also have to admit the fear can be so overwhelming that it takes more effort than I am able to extend while sitting by their side in a clinic that in itself instills all kinds of other fear inducing stimuli.

Being the rebel I am, I did very badly with this sort of thing. But that's a story for another time.

What is it in home treatment that makes it so different?

Well, first of all you are home. This might seem trivial. But, I have yet to see a clinic that remotely resembles a home setting. The mere fact that of it being a clinic renders it sterile and by proxy hostile to human wellbeing. It is full of reminders that we are mere mortals. In my home I am surrounded by my own things. I can watch my own TV, listen to my own radio as loud as I wish. I can also have peace and quiet—a total impossibility in any clinic I have been to.

I can run my treatment whenever I want. I can even do it at night while sleeping. And not only that, I can achieve much better results than is obtainable in a clinic setting. This in turn leads to me feeling much better in between treatments because my overall health status is so much better.

I don't have to adhere to random “house rules.” It's my own house and therefore my own rules. I know some of my fellow patients (particularly in the US) struggle with stupid requirements, like certain single pool Kt/V measurements. I am fortunate enough to have a relationship with my clinic based on trust. If I feel and look well and my labs are not too far off there is no need to do anything. Granted, I have earned this level of trust by making sure my levels are excellent. I know patients in my ward that live with much stricter limits because of their behavior and their lab results.

I am in control of every aspect of my treatment. Of course, this is only possible because I have been educated by knowledgeable professionals. But why shouldn't the majority of patients have this opportunity? I refuse to believe that 95% or more hemodialysis patients are too dumb to understand the mechanisms of how to take care of their own treatment.

Research has shown that 90% of dialysis staff members would prefer a home option3. I am sure the number would be considerably smaller in the dialysis population, considering things like the age difference and co-morbidities rendering people physically unable to perform the treatment. But there is a long way from 5% to 90%. And we know countries like New Zealand have a much higher home HD population.

The same research paper, however, might give us an answer to why we are not able to send more people home. In answer to the question, "Who do you think makes the decision about modality?" 57% of nephrologists answered: “The patient decides,” while only 18% think it's the physician. When the nurses in the study are asked, 47% indicated it's the physician's decision, and only 19% think it's up to the patient.

I have no way of knowing what other patients think. But I think I am on safe ground when I say they are much more in line with the nurses than the nephrologists.

So, it looks like we have to educate our doctors so they become much better at trusting the mental faculties of their patients. We have to tell them we are people—not sheeple4.


  1. Blagg, C.: Home haemodialysis: 'home, home, sweet home!' Nephrology, 2005

  2. Encyclopedia Britannica, 2003

  3. Schiller, Neitzer and Doss: Perceptions about renal replacement therapy amongst nephrology professionals.

  4. https://www.urbandictionary.com/define.php?term=Sheeple

Comments

  • Shirley O’Neal

    Dec 2, 5:17 PM

    This article is really slanted toward “home dialysis is best”, when it is not the best choice for all patients. I have been doing in-Center hemodialysis for almost 17 years. The staff at my center do their best to educate patients on options, and encourage anyone who wants to try home treatment to go for it. I finally tried PD after 3 years. It was great while it lasted, but it does not remove fluid from me. So back to the center. Later, I started training for home hemo. I had a catheter, so I didn’t have to deal with needles up front. However, I did realize I would need to have someone with me at all times. My husband was working full-time then, so evenings would have been spent concentrating my treatments. That is not how I wanted to live my life. I am still mobile at 65. I drive myself to and from treatments. I’ve gotten a handle on fluid consumption and diet restrictions. Travel is the biggest negative. For me, personally, it is more trouble than it is worth. I limit myself to quick weekend trips.

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    • Henning Sondergaard

      Dec 3, 8:07 AM

      Shirley,
      I have just replied to Oskar right under here. My reply to him also applies to you.
      However, I want to add this. My blog post is deliberately “slanted “ towards home dialysis. This is a home dialysis site so I like to share why I think this is the best option. There are many doctors and nurses who focus on the medical benefits of home options. But we are precious few who talk about the quality of life issues that come with this option.
      I am delighted you have found the option that suits you best. And I am also relly happy you read what people are saying on this site. But mostly I want to thank you for sharing your opinion with us. I think we can all learn from each other

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  • Oskar

    Dec 1, 1:07 PM

    I realize patients often praise home hemodialysis, but I found it a burden. In-center dialysis is like having a personal butler do the work of dialysis for you while you just sit there, but home hemodialysis makes the patient do the work so it is more burdensome. The treatment, which is itself the source of the patient's dependency and crippled lifestyle, now invades the final sanctuary, the home, and takes it over. Now the patient not only has to run his or her own treatments, but also has to serve as quartermaster-general, supervising the ordering and arrival of all the dialysis paraphernalia, which takes up an entire room of the house. So the net result is that what cripples you and creates your dependence now owns your very home, what should be your ultimate sanctuary, rather than being hidden from view at the clinic.

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    • Henning Sondergaard

      Dec 3, 7:58 AM

      Oskar,
      Thank you for your comment. It is always nice to hear opposing views here on this site. We tend to agree on many things because most of us are home patients, carers, or professionals.
      Theoretically I understand how you find the treatment itself the biggest burden. I think there are many like you. Personally I can’t stand the time restrictions of center. Just like I feel dehumanized by the staff - regardless of how nice they seem.
      But I am glad you took the time to read my piece. I wish you all the best with your life and your treatment.

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  • David Rosenbloom

    Nov 30, 12:53 PM

    I couldn't agree more with Henning when he says," The worst thing might be the utter lack of control people are subject to. How can this ever be to anyone's advantage? I can only see it as an ugly power game."

    The dialysis system of primarily in-center clinics, as it has operated in the U.S. since the 1980s, reduces patients to victim status, and engenders feelings of hopelessness and depression. It has been designed for compliance, not good health outcomes. It runs for the convenience of the medical team and not the patient. It ensures passivity.

    I know most dialysis professionals sincerely feel that they are doing their utmost to keep ESRD patients alive. But that is not enough. Treating the body with out including the mind or spirit is a recipe for failure, one we have been repeating for decades.

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  • Linda McKenney

    Nov 29, 10:49 PM

    Instead of expecting patients to passively accept treatment they should be met with the expectation that they will run their own treatment. From day one they should be encouraged to self cannulate. They should be taught how to set the machine up, and how to handle alarms. The expectation should be that patients will advance to self care either at home or in center.

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    • Dolores Williams

      Nov 30, 8:21 AM

      I am a great advocate of starting where patients are and encouraging them from the beginning to become a more educated and active patient in their own care. Some of our patients are more than capable of doing more.

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  • Doug Deluhery

    Nov 29, 3:12 PM

    Had Kidney Transplant for 29 years. Then on PD for 3&1/2 years. Now on HHD for 3 years and 11 months. Before Transplant did CAPD for 13 months was only 21. No machines just manual and exchanged every 4 hrs and Big bag at night.

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  • Richard Gash

    Nov 29, 2:29 PM

    This article best sums up my feelings on HHD. I live in the USA and have read numerous articles on HHD and continually wonder why this should not be an automatic choice if the patient wants it. I've heard that it's just done for convenience. Well, what if it is? If I'm willing and able to complete the training why can't I be the one to make the decision? After all, it is my life, my health and therefore my choice.

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    • Dolores Williams

      Nov 30, 8:28 AM

      At our clinic, it is not convenience that it is done for; unless it is the convenience of the patient. Once our patients are educated which happens immediately and continual through the dialysis process; we are guided by our patients desires but sometimes we are limited by the patients' own issues (i.e. housing, comprehension, safety and etc). Although, I do wonder how different it would be if some of our patients never entered incenter and were started @ home. I wonder.....

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