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