Learned Helplessness, the Mirage of Safety, and Home Dialysis

This blog post was made by Dr. John Agar on June 5th, 2019.
Learned Helplessness, the Mirage of Safety, and Home Dialysis

Learned helplessness (LH), a term first used by two psychologists in 1967 studying learned behaviour in dogs, soon translated into human behavioural psychology. Wikipedia defines LH as:

“Behaviour exhibited by a subject after enduring repeated aversive stimuli beyond their control. It is characterized by the subject's acceptance of their powerlessness: attempts to escape or avoid the aversive stimulus discontinue, even when alternatives are unambiguously presented.”

[A totally tangential thought came to me as I pondered the LH concept… What if Darwin’s brilliant theory of evolution—survival of the fittest—has been amplified and “driven” from the back end by those least fit individuals who—through LH—failed to make the cut and fell by Darwin’s wayside, as much as by those at the front end seizing an evolutionary edge?]

Back to reality: LH is a pathway for the “beaten,” the “downtrodden,” and there are few niches, if any, within the chronic illness pathosphere where LH is of greater risk, is more rife, and is more pervasive than in chronic maintenance dialysis. This is especially so in the (commonly) impersonal, (often) production-line, and (inevitably) dehumanising chair lines that so many dialysis centres devolve to.

It is not that those who design these centres, nor those who work in them, intend them to be so. Rather, the daily “get them in, get them on, get them done, and get them out” repetition of regular maintenance treatments spirally auto-spins them to the lowest denominator of care—much like those coin-eating wishing well funnels that dot so many shopping centres.

coin swirl

While centres must continue to guard against the torpor of LH overtaking their patients on maintenance dialysis, a clear and better solution is found in home dialysis. Home dialysis empowers. It restores self-esteem. This is true whether peritoneal dialysis (PD) or home haemodialysis (HHD) is chosen. Yet, even though both of the two main home options offer autonomy to chronic dialysis patients, it is still possible to let the seductive LH genie squeeze out of its grotty bottle.

Magic lamp in the desert from the story of Aladdin with Genie appearing in blue smoke concept for wishing, luck and magic

Some jurisdictions are better at preventing any acceptance of LH than are others. In Australia and New Zealand, for example, the home training “ethic” is fairly and squarely directed at patient self-care, and not to carer-care. In ANZ, the attitude is: the kidney disease, and, by extension, its treatment, is the patients’ problem, not the carers’. The

patient is trained—not a carer. In the US, the opposite view has held sway – to the point where carer training has been mandated and/or demanded, an approach that has led to the transfer of LH to the home patient, particularly for home HD where the power-sapping “hold out your arm and have it stuck with needles” attitude, rife in centres is, perhaps unwittingly, transferred via the “carer concept” directly into the home.

PD is less at risk than HHD for, while some PD patients may need some assistance—e.g., with hanging bags (especially on manual CAPD)—the beauty of PD is its relative simplicity. PD is simple to learn, and simple to self-manage. If using the now far more common option of automated PD (APD), the set-up remains simple to master, with the PD machine commonly pre-set to deliver a pre-determined fluid regimen, overnight, during sleep. While some users may disagree, in our experience of more than 40 years of teaching, sustaining, and encouraging PD, significant “caring” is rarely required. A significant other is nice to have around for moral support, this is undoubtedly so, but the help of another is not commonly required for direct technique care.

On the other hand, HHD is without question a more complex process. HHD systems—whether the US-favoured NxStage, or the ANZ-ubiquitous Fresenius 4008S or Gambro AK 95 single pass options, or other home options like the Belco, B Braun, or Nikkiso systems—always appear more “threatening” at first sight. And, the HHD learning process is undeniably longer: 6-8 weeks or more for HHD, compared with 7-10 training days for CAPD/APD. Add this to the challenge of learning to needle an AV fistula (or graft), surmounting the fear of “something going wrong,” and dealing with the uncertainties of isolation…and home HD does present greater hurdles, at least on the surface, though all can be overcome by empathetic, patient, compassionate, and expert training staff.

But, scratch the surfaces, and different challenges emerge for PD and HHD. This, then, draws me back to my introduction…LH, the “mirage of safety” in centre-based care, and the sense that home dialysis can seem too hard—a bridge too far. LH is difficult to avoid in any format of facility-based dialysis, except, perhaps, in enlightened services that offer and encourage in-facility self-managed care. These clinics are around, perhaps especially in the UK, but, sadly, they remain few and far between in most jurisdictions. But, to those who provide this facility-based option, more strength to your arm!

In most facilities, however, the repetitive drudgery for both patients and staff alike breeds disengagement and chore, and actively erodes compassion. This is not necessarily anyone’s fault, it is just the inescapable fact that, in dialysis units, familiarity breeds contempt, from both sides of the dialysis membrane unless it is (1) recognised as an issue and (2) aggressively resisted.

While HHD also offers the torch of self-determination, it is a torch easily snuffed out. A carer—for all the good intent—can smother patient involvement far too easily. While the benefits of dialysis at home are many, the hidden risks are of carer burn-out, ill health, or absence. An HHD patient who is wholly or even partially dependent on carer support for the dialysis process is then stranded and helpless if, for some reason, the carer is unavailable.

More insidious are the added stresses on a loving carer who must not only bear the usual burdens of home, family, business, chores—the stuff of “life-maintenance”—but also all of the responsibilities attached to doing dialysis as well. And, it is not their illness. And, they don’t get paid!

Within this maelstrom are the seeds of failure: for the patient and for the carer. The cared-for patient can too easily slump back into the same torpor of LH that s/he and a carer chose “home” to avoid. In the US, “failure” of home dialysis, the so-called “drop-out rate,” is alarming, with some studies placing the first-year drop-out rate as high as 20-25%. Conversely, drop-out in ANZ is rare. (1)

These are some of the reasons why I am vehemently opposed to carer-dependent home programs:

  • When we train patients, they become self-sufficient and self-confident. They develop pride in their skills. They self-determine. They shine.

  • When we train carers, patients are encouraged to slip back into dependency and docility.

Learned helplessness, that (tacit) acceptance of powerlessness, is the very thing that home dialysis should empower patients to avoid. Yet, carer-led dialysis at home provides an easy pathway back into that trap.

It is pleasing to see that FDA rulings were altered in August, 2017 to allow US patients to perform solo home HD care (2)—although the rest of the world has allowed and encouraged this for decades. By definition, solo care means training the patient, not a carer, and this, in turn, will mean changing training attitudes and practices.

Let us hope these attitudinal changes will now occur.

References

  1. Kerr PG, Agar JWM. Discontinuation Rates in US Home Hemodialysis. (Editorial). Am J Kid Dis. April 2016. 67(4). 542-544.

  2. https://www.healio.com/nephrology/home-dialysis/news/online/%7Bd76654f7-e08f-409d-b446-af2b78ec25a7%7D/flying-solo-hemodialysis-at-home-by-yourself-is-safe-and-now-legal

Comments

  • Carmen M Critchlow

    Jun 15, 2019 9:57 PM

    Hi, I was doing in clinic dialysis for 25 years when I switched to PD. I really loved that because I could be in charge of my own treatments. But I had peritonites and lost my catheter, so I had no choice but to go back on hemodialysis.

    When I found out that Home Hemo was available I signed up with my husband as my caregiver. In the beginning I was terrified. My husband did everything for me and I became dependent upon him. Til one day my eyes opened and I thought, Hey why are you not doing this yourself?

    Ever since then I have done my own dialysis and it's been 11 years and I wouldn't change it for anything in the world. My husband checks on me, but it's not necessary that he sit by me though out the treatment. If I need him he is close by. My nephrologiest does not approve of doing it solo.

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    • John Agar

      Jun 16, 2019 1:39 AM

      Carmen ... it is stories just like yours that need to be seen, and understood. Well done. Thanks for taking the time to put your success out there.

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  • Chelsea Roman

    Jun 8, 2019 1:33 PM

    I loved this piece. It’s so true on so many levels as a Solo HHD patient myself.

    Chelsea Roman
    Nx Stage Patient Advocate
    www.facebook.com/findchelsearomanakidney

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    • John Agar

      Jun 8, 2019 5:44 PM

      Thanks, Chelsea.

      But, while I just write about it, you and so many others live it ... so, please, share the self-care message with others, as often and as best you can. Directing people to this blog - especially ‘newbies’ at the HDC Facebook page who may be uncertain - would be a good eay to start.

      If a ground-swell call of ‘you can do it for yourself’ can be created by those of you who have broken free [or as free as it is possible to be within the burden that is dialysis]. Only reassurance from those with lived experience will move the self-care goalposts for those still shackled by the beast of learned helplessness’ whether they still be in-centre, or worse, already at home.

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  • Peter Laird

    Jun 7, 2019 2:45 PM

    John, thank you for this blog. Self care us the only way to maintain your independence and health.

    Even though we did get the solo indication for home dialysis, unfortunately the LDO’s and nephrologists are not widely embracing this practice here in the US.

    Even with an MD after my name, years of writing on various dialysis issues, no adverse occurrences with 9 years of home dialysis, my medical team made a huge issue about my wife ever leaving even for a few minutes.

    This even though my training certificate for the Baby K states I am certified for dialysis by HIMSELF with no carer trained.

    John, even the solo indication remains a huge obstacle to home dialysis in the US.

    The learned helplessness is encouraged by labeling patients noncompliant and retaliate for any complaints.

    The American dialysis unit is a totally dysfunctional circus of death.

    We are in desperate need of immediate change.

    I greatly enjoyed my nearly 20 years of internal medicine practice. I was never ashamed of what we offered our patients. I am greatly ashamed of what my nephrology colleagues have delivered as standard of care for the majority of ESRD patients. In fact I am outraged that our government not only allows the LDO’s free reign over us, but appears to be in active collusion with them.

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    • John Agar

      Jun 8, 2019 12:49 AM

      Somehow, the question must be reversed to: “why can’t you?” from “how can you?” ... to find reasons ‘why not’, rather than erect barriers that add up to ‘you can’t’.

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  • John Agar

    Jun 7, 2019 7:33 AM

    Henning ...

    Invoking the Stockholm Syndrome, and applying - as you have done - to ALL involved in-centre-based care (patients and staff alike) is brilliant ... it is BRILLIANT. I am spitting chips that you thought of that, not me .... grrrrr!

    But, it is so true.

    For those unfamiliar with the Stockholm Syndrome ... it is defined as ‘a condition which causes ‘hostages’ to develop a psychological alliance with their ‘captors’ as a survival strategy during captivity’.

    How apt that this epithet be the core descriptor of centre-centred dialysis. I think you have coined an absolute ‘cracker’ of a phrase ...

    To be honest, I can’t go beyond it tonight ... despite that so much more in your response deserves attention. Suffice to say, you are right - that while the Stockholm Syndrome is rife in centres, the carer emphasis in US home dialysis simply transfers the same control/dependency psychology to the home.

    What a cracker of an analogy!

    John

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  • Henning Sondergaard

    Jun 7, 2019 6:09 AM

    John,

    Thank you for a great blog post (once again) I only have one objection to it - that is the fact that I didn't write it myself.

    As you know, I have been talking and writing about learned helplessness in facility dialysis for quite a while. But I never thought of using it as a starting point for a blog.

    I really like the idea of care partnering being equally debilitating for those of us who do dialysis at home. I am all for empowerment and self-sustainability in dealing with chronic illness. So demanding a care partner for patients is just another way of making people more sick. On top of that, it puts a strain on what might be an otherwise healthy relationship.

    In the last year or so I have been toying with a rather provocative idea. There is no doubt learned helplessness is a key factor in in-center dialysis. But I am actually willing to dig deeper in the 'psychology bag' and go a little further.

    I find that patients who have done facility based HD for a while become resistant to even consider HHD. They have all sorts of arguments (like safety) for why center-based dialysis is better, arguments that mirror what healthcare professionals might come up with.

    It is as if they suffer from Stockholm Syndrom, using all the reasons the system throws at them for why they are better off staying in-center. Please, note I say 'the system' and not nurses or docs who of course are the representatives of said system - but they are also often trapped by the unhealthy culture in their workplace that leads to these ideas. I truly believe that all healthcare professionals want the best for their patients. So in a sense they also suffer from Stockholm Syndrom.

    Patients' lives, however, are dependent on the system so in order to 'survive' psychologically they adopt a mindset where they are so dependent on the way their treatment is done that they dare not think it can be different - and if it is, it must be extremely difficult and dangerous.

    The American for-profit model does absolutely nothing to counter that. But even in my country I see it very strongly.

    The fear is only exacerbated by the fact that most dialysis clinics are treating very sick (often old) people who are at the end of their life. So other patients, who might be good candidates for home, see all the horror that goes with dialysis in folks who might have been better off with conservative care; the panic when their hearts goes crazy, resuscitation, etc.

    In-center dialysis is probably one of the most psychologically straining environments one can imagine. No wonder the prevalence of anxiety and depression is so high with people on dialysis. And that is on top of us having to deal with serious physical illness.

    Once again, the conclusion is rather simple. We need to send as many people home as we possibly can - or we need to create environments where they participate in their own treatment as much as they are able to if they stay in-center.

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