how long does a patient have if they stop doing dialysis? my mom says she is done and want no more dialysis.

Oh Steve … I am sorry to hear that.

Firstly, has she talked things over with her doctor, with her team? It is important she do this before she takes any decision to stop but, that said, it is very common for dialysis patients to tire of their treatments – the endless nature of them and – sooner or later – to begin the question the worth of it all.

It is important she has talked this through with her team, though. Sometimes, the problem that seems to be the ‘straw that breaks the camels back’ is a problem that can be fixed. Sometimes acute depression – a state that is treatable and usually fixable – can so overcome us (and this goes for people in all situations, not just dialysis) that there seems no way through, no way out.

If, however, she has reached her decision to withdraw after all these issues have been discussed … then, yes, it is a valid and common decision which countless dialysis patients have made before her (and will make after her) but one for which she will need all the support and care and love and courage that you and her other friends and family can muster to help her with.

In Australia – and I do not know US data for this – approaching 1/3rd of patients now make a reasoned, a conscious and – with the steps I mentioned above about discussion with the doctor and the dialysis team having been taken – a supported decision to withdraw from dialysis. It is approaching the commonest cause of death in dialysis patients here.

Do I personally think that a bad or a terrible thing? … No, I don’t.

A decision to withdraw from dialysis can be take early after only a short time on treatment … this is especially so in elderly patients who, after trying for often only brief time, decide that dialysis-dependence is not the way in they wish to leave their loved ones and their lives. Others may come to the same decision only after years or decades on dialysis but where mounting problems, especially of pain and loss of mobility and loss of self-care and independence become too much to continue to struggle against.

Early or late, and for whatever reason – and each patient is different – I respect the decision once it is made and we, here, actively encourage our patients to say when ‘enough is enough’. Indeed, our unit has run an active program by that name since the early 1990s for our patients. We try as best as we can to eduacte them and help them onto dialysis … yes … but, at the other end, we also try to educated them and help them to say when its all becoming too much and it is time for them, as an individual, to let go. To make that decision is courageous and to permit and help in its ‘happening’ can be a true last act of kindness from the family

How long will it take? … Steve – I wish I could be more specific for you but it very much depends on a host of factors your team will be better able to ‘predict’ for you than I can … but … it will depend on things like:

… whether she is on PD or HD … and for how long she has been on dialysis all-told. If she has been on HD, she will likely have lost her native kidney original renal function faster than if she has been on PD … and this would result in a quicker death. But, if she has been on either for more than a couple of years (and that’s a very ball-park figure in itself), she will likely have lost most if not all her residual renal function (read my answer to ‘Crobake12’ … “What factors influence residual function on dialysis” for an understanding of this) … and this will make things easier (and faster) for her.

If she has lost residual function, that means she is totally dependant on dialysis for the clearance of fluid and wastes. If so, and provided she is careful about fluid over-load (it isn’t pleasant for her to be struggling for air if she gets overloaded with fluid), then the blood potassium will gently rise, unknown to her, and, quietly, without fanfare, her heart will just eventually stop.

Her age, her underlying disease and any comorbidities (of which there are usually several in those who make the decision to stop) … these and other factors can also influence the likely time she might have left with you after she ceases her treatments. Again, your team is best placed to help you here. Please … talk with them. Be open with them. This wil encourage them to be open with you.

Steve … I often say to my patients (and I mean it, from the experience of many years of dealing with just this situation) that if I had the option to choose for myself how I would die, it would be in renal failure – as happens at the withdrawal of dialysis.

It usually doesn’t take long … maybe 5-7 days in most patients - especially those with absent residual function - though it can take longer and your team are best placed to be more certain for your mum.

It is usually a gentle death … with more and more periods of sleep or semi-coma interspersed with lessening periods where she may be more able to talk and be more ‘with it’.

If fluid excess can be avoided, then it is rarely a distressing way to die - for her or for you and her family - and, unless accompanied or provoked by painful conditions (like blood flow problems to the legs) where pain relief is paramount, it is usually peaceful and gentle … or can be made so by her medical team.

Often when patients actually make the decision to stop, it is like a huge weight has been lifted from them. It can often be – after a long period of struggle and pain – the few days where, the decision made and taken, the family can just be with her, support her courage … even send her on her way. We have had patients who, decision made, have set about organising their own living wake! They know what will happen but they want to be there with their family and friends for the send-off … eating stuff they like but that they haven’t for years (bananas come to mind). In the case of one brave and courageous Irish lady, Edna, whom I remember so very well … she self-organised an Irish whisky and chocolate party in her room with all her nearest about her. She had a ball.

My message here is that it doesn’t have to be grim … … well thought through, it can be uplifting and releasing – for patient and family alike.

So, Steve … how long will she live after withdrawal from dialysis? I cannot say with any certainty but, for most, the answer is commonly inside week – but then, it is not always so. It does not usually take much more than 10 days. Ask your team – they will help. The main things to be sure of are:

  1. It isn’t a decision taken on the spur of the moment for issues that are treatable but, at the moment, seem overwhelming.

  2. If it is a decision taken with thought, after discussion and for a mounting list of insurmountable problems that then:
    a. Any pain is controlled
    b. The family accept that it is her decision to make and support her through it
    c. The family avoid – even if privately they have misgivings with her decision or have internal family disagreement(s) over her choice and her decision – any outward show of this … that only makes her journey more difficult for her.
    d. So … add your courage to hers … and live the good times in your shared lives as she closes hers,
    John Agar