Doing home hemo alone in the US

Dr Agar, I am 99% certain this question has been asked before, but I have done numerous searches of this site and have come up with nothing. If you or a fellow member can merely direct me to a previous thread on this subject, I’d be grateful.

There is a bit of a dustup going on over on IHD about whether or not it is “permissable”/“doable” to do home hemo without a care partner. One member has said that to try to do so is just nuts and would undercut the opportunity for other clinics to offer home hemo should a lone dialyzor die or have some catastrophic accident. Other members have said they’ve been doing home hemo alone for years and feel they shouldn’t be denied optimal dialysis simply because they have no care partner who is willing to go through the training process.

Do Australian patients without care partners train by themselves to do home hemo? Or is there some law or clinic rule that prohibits this? Can you or other American members of this forum tell me catagorically whether or not any clinic at all in the US will train you without a partner?

Thank you.

‘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.

As I recall, we are supposed to be “the home of the brave”, right? “Get over it”…we have the same saying, too. The Brits say, “Get on with it.”

I have a good idea of how often this question must surface and felt it just HAD to have been asked on this forum, so thank you for answering yet again. Your reply was exactly what I suspected it would be.

I don’t know why clinics here have to instill these anxieties in their patients. It would be nice if more clinics would work to encourage their patients to be more empowered, educated and confident. I guess we have become not only a litigious society but also a punitive one…“if you don’t follow our rules, you will be at fault and will pay the price.”

I will post a link to this conversation over on IHD.

PS: That was quite a, uh, diplomatic reply. Ha!

Thank you!

As you point out, Australia isn’t the US.

So for those in the US that’s the end of the discussion.

I hope its not the end of your discussion …

But it IS a battle you must fight in the US, while here, the battle (was there ever one?) is over. If there is no partner, lone dialysis is accepted here, not shelved as ‘unacceptable’. I am also aware that there are many home patients in the US who, ‘off label’ so-to-speak, do dialyse unattended at home. However, there is no institutionalized acceptance of this as there is here - and elsewhere.

Is it ideal? … perhaps - in an ideal world - not … but it does offer home care to those who wish it but who have no certain partner. The acceptance of lone dialysis at home expands the dialysis options to the single, the male or female widowed, the divorced …

Is it safe? … in my (our) view - yes. We do not monitor - we never have - but we teach simple fail-safe techniques to avoid trouble, we have strong, immediate help for those who have a problem and we have not come unstuck with this practice.

Will some one, some day, run into trouble … possibly - even probably … though not as yet. But again, so, too, do patients run into misadventure and trouble in facilities - every day!

Is our program robust enough to survive home on-dialysis deaths? Yes … I believe so. Sadly, it will happen - sooner or later - but it does not mean that the program or the principle is at fault.

Our patients simply prefer to be at home. If this is their preference, then we do all we can to ensure that they are safe in their home environment. It’s as simple as that. We understand that there is risk in all we do - people slip in showers, get mown down crossing roads - but that is no reason not to take a shower or cross a road. It just suggests awareness of the pitfalls, and taking care to follow safe practice.

No … I don’t think it should be the end of the discussion in the US. But it is a discussion Australia has had and has resolved. It is one that you, in the US still have to work through.