‘Lone’ Home Haemodialysis
Yes, I have answered this question many times - here and elsewhere. Part of the problem lies in the fact that I (or MEI) have not had the habit of changing the title of a question … and sometimes (often) questions are submitted with titles that no not ideally represent the content of the question, or, later, during the thread that develops, the topic may change to a different issue but this is not signaled in the title of the original post.
At least your question clearly lists the topic - thank you - and will be a marker for my answer for subsequent searchers.
The sentiment that follows this is not meant as criticism of the US - but it is a societal difference between the US and other societies that I find many in the US, who are largely unaware of the world beyond the borders of the US except where it pertains to war or to imagined/perceived threats to US ‘soil’, seem unaware of: the focus in the US on blame and retribution, and on litigation as the solution to all blame.
We, the rest of the world, view society as a whole and dialysis as an instance, less as a blame/retribution cycle … as someone else’s fault, as someone else’s responsibility … and more view personal responsibility as a core value and concept to protect, and not one to release into the hands of any third party.
That said, we treasure and accept personal responsibility (at least we seem to) better than you do … there, it is ‘call the lawyer’! … here, it is ‘where did I go wrong’ and ‘how can I prevent the same happening again?’
You will now understand where this answer is going.
Of course we accept lone dialysis. I have said, over and over here, that we do not train a carer … again, we do not train a carer.
The renal disease is, sadly though that may be, the patients’ illness. It affects, impacts (hugely), changes the life of the spouse, significant others, loved ones, family, friends - and, might I say, the staff of the renal service too - immeasurably so. But, at the end of the day, it is the patients’ illness.
The patient should, where ever possible take responsibility - personal responsibility - for their care, their treatment, their outcomes.
That’s how we view it - the Australian way. And, to a large extent … though Hollywood and others have tried their best to warp our resolve … we stick to it.
We do not train carers. We train the patients.
Our ‘suitability for home’ assessment is core-based on this concept.
If a ‘significant other’ wishes to watch, or take part - in some way - they can … of course they can … but, we do not train carers to ‘do’ the dialysis. That of the job of the patient.
Up to 1/3rd of the 30% of our haemodialysis patients who dialyse at home have been self-dialysis patients … no carer, no spouse, no significant other, no-one, sleeps or sits or hovers beside them.
I sound like a broken record when I say that dialysis at home, done by a patient, to him/herself - and after all, who has more vested interest in a good outcome than the patient him/herself - is safer, better and less complication-ridden than any dialysis done in any facility, anywhere - despite the best intentions of the facility and its’ staff.
Trouble, sometimes tragedy, occurs on dialysis - it has, does and always will. That is a sad but inescapable fact. But trouble and tragedy happen in our facilities, every day. Just look about you at the facility risk rate before being frightened by the far lesser home risk rate.
Seriously, misadventure may happen at home. Of course it might … might. But, that’s what the training is for! We train, and train, and retrain, and review, and watch, and re-evaluate technique … our home training staff are just the best at this.
Do we have deaths in our home patients? yes … but, in 12 years, none (yet) during dialysis. And, even if we had (or do) … would any one of our home patients trade their home (and often lone) dialysis for a spot in a factory facility? … NOT ONE!
Do our lone home patients feel isolated - you betcha … and yes, it can be scarey for them (I know that) … but they (and we) manage their fear - as best we can - and as the days at home turn to weeks, months and years, they grow in stature and self belief, they become more resilient, braver and stronger people for the doing … and, again, would any trade that occasional sense of isolation for a ‘chummy’ seat in a facility? … NOT ONE!
Lone dialysis is fine. Train well, teach fail-safe ‘troubleshooting’ (of course we do), make sure their skills to deal with power and water loss are sustained (we do things during training like turn the water or power off without them being aware this is to happen to see how they deal with it … stuff like that) … and have a strong, 24hr a day, 7 day a week, experienced home dialysis nurse at the other end of the phone to talk a patient through an issue … and, it works.
We have been doing lone dialysis in Australia since the 1960s.
Many of our patients do it every night.
So, too, elsewhere.
It is a shame that litigiousness, the seeking of another to blame, dependence on others rather than self, has seemed to colour care in the US where, now, defensive medicine is the norm. I find that very sad indeed,
This has been something of a diatribe! But, you have no idea how this same question, this same fear, this same anxiety, expressed over and over when I talk to US dialysis patients and staff, surfaces and resurfaces.
There is an Australian saying … 'get over it". And, MooseMum, that ‘saying’ is not aimed at you, but at a collective American dialysis community.
It just rots my socks!
And … by all means, direct the IHD doubters here to read this.