When Enough Becomes Enough for Home Dialysis
For decades, I have advocated for, supported, encouraged, and recommended home dialysis therapies - and in particular, have energised home haemodialysis (HHD) - as the optimum form of dialytic practice. I have been involved in providing HHD for 45 years now, and in driving nocturnal HHD for 20 years. And, I will continue to do so, as it is! But, while I believe, with every fibre, that home care offers the best outcomes, the best rehabilitation, and the best chance for lifestyle to dominate treatment rather than for treatment to override lifestyle, emphasized by the old saying “dialyse to live, don't live to dialyse” - there are dark corners in every human endeavour.
One such dark corner of HHD is what I have come to refer to as the “back end” of home care: how does a caring home team, supportive to the core with their home patients, tell a home patient that enough is enough at home ...it is time for your safety—and the safety of the entire HHD program—that you switch to facility care?
In our service, while we are careful, we are also expansive and inclusive in our HHD patient selection. How else could we have managed to sustain a constant 25 - 33% of our HD patient population on self-care and, almost exclusively, nocturnal HHD for almost two decades? But that extensive experience has also allowed us to identify some of the more difficult areas in home care, and one that is rarely—if ever—discussed, is “the back end.”
Home patients, in the main, quickly grow to treasure the freedoms, the lifestyle, the wellness, the “escape” from the limitations forced by facility care. In particular, these include the inconveniences (and cost) of travel and access, the frustration of rosters, the (sometimes) unfeeling curtness of staff, the production line mentality, the silence, the battles, and the angsts of clinic care. Home patients, by a vast majority, cling to home care! When they compare home care to the facility-based option, it is fully understandable that a fear of clinics, hospitals, and facility line-ups grows. I often hear thoughts expressed like... “I could NEVER go back to facility care”. This is an often-expressed view at the HDC FaceBook group for home patients.
But, years pass. We age. And as we age, frailties that were not there at in the earlier years creep in. Other stuff happens, like ‘”accrued co-morbidities” = medical speak for “the other ailments” that begin to pile up on us all as our years pass. Dexterity imperceptibly alters. Cognitive function declines. Memory develops annoying little gaps or pauses. Words can flit away just out of reach as we seek to find them. Reaction times slow down. These are the realities of aging. Thus, a home dialysis patient, assessed as competent and capable of self-care at inception, may slowly deteriorate in all these ways—and more—as the years pass. Often the only one who does not notice, who can't see it, or who refuses (or suppresses) their recognition of the changes wrought by time, is the patient. This failure to see/accept the influence of aging is subconsciously fed by a fear of a loss of independence.
We all fear that! It is true of us all, and not just the dialysis patient. But for a home dialysis patient, to lose the extra levels of independence that home care brings can be all the more threatening. So...how do we “extract” a failing patient from home? And, how do we explain why we see impending trouble but the patient vehemently argues the contrary; the patient who insists “I am fine” when we fear (or know) she or he is not? Such patients can become more than just a danger to themselves, but they can threaten the program that supports them, and—beyond that—can rock the foundations of the very notion of allowing/supporting a complex medical therapy to be delivered at home by a medically untrained person.
Deaths of home dialysis patients at home and on dialysis are, thankfully, extremely rare…but they do happen. Unlike deaths in dialysis facilities—deaths that are, sadly, all too common—a death at home inevitably attracts coronial examination. That is as it should be, and is not in question. However, patient competency to self-care, or carer competency to be a medico-nursing untrained operator is always a core issue in such examinations. And this can be hard enough to answer, without the added load of known cognitive or physical decline—yet without home withdrawal.
So, beyond careful initial patient selection, beyond good, slow and extended training, beyond meticulous home support by a highly trained, empathetic and 24/7 available home team who know and have trained the patient...all nonnegotiable absolutes for successful home care…must be the consent an bipartisan agreement, to relinquish home care if, in the passing of time, the home team deems a patient to be a threat to themselves or to the program as a whole**.
I still wrestle with the best way to ensure this agreement, this acceptance, and how to find a way by which it can be upheld and implemented. A consent document signed prior to home transfer at the start is one way. But, consent documents, when the pinch comes, can be hard (or impossible) to implement in a system (healthcare) that is not custodial but emphasizes “enabling” and “empowering.” How, then, do we ensure that both (or all) parties—the family included—agree to pull the home pin when the time comes? Experience dictates that agreement by all often fails to co-locate! I am afraid that I don't have a glib and satisfactory answer. Indeed, I am not sure anyone does, from either side of the dialysis membrane, user or giver. And…we, the treating team, can be wrong in our assessment, while the patient is often blinded to his/her changing circumstance.
This blog has not arisen out of any one specific circumstance but from a growing realisation that while we are very gung-ho about expanding and growing home haemodialysis, we must be mindful that all good things must end, sooner or later, and we must manage the ending as with as much rigour as we do the start. More thought, more discussion, and a more empathetic and compassionate light must be shone on this most complex of all aspects of home care in the months and years to come, for the safety of patients, for the survival of programs, and for the health of the home dialysis concept.