Dear ‘Worried about my Dad’
I was very moved to read your post … and it brings up one of the most difficult and vexing problems any of us face when those we love are hampered and dragged down by illness, regardless of whether this is renal disease or any other chronic, debilitating condition … the love we have for the family member (in this case, your father) and our wish to see them well and strong again, opposed to the ravages of the disease and the press of time.
It is such a common problem and I cannot presume to offer an answer that will make it easy for you … but I will try to help … and I hope in my attempt, I dont make things more difficult.
Several things need to be said about your dad and his illness. He is 77 and, as you have outlined, he has struggled for many years with diabetes, has had a past heart attack, is now hampered by arrhythmias, is undergoing EECP (Enhanced External Counterpulsation) to treat his angina (as, correctly, the use of contrast for an angiogram +/- an angioplasty would certainly wipe any remaining native renal function), has a pacemaker, is having problems with potassium and now has advanced chronic kidney disease with an eGFR of 13. All these suggest that his age and his disease have taken a terrible, terrible toll on him. Though he is77 in chronological time, his disease(s) will have added a number of weighted years and, as much as you love him, it really means he is (physiologically) now much older, in many ways, than his 77 life-years suggest.
He is, in your own words, struggling … both physically and mentally. It is natural to want to encourage him, to help him to be strong, to give him hope and help him on a path to feeling better – all of us who feel strongly for a parent – as you clearly do – would wish no less.
There seems little doubt that he is very close to the point where most would recommend starting dialysis … and here I am assuming his medications have all been adjusted to ensure there is nothing that might be aggravting or depressing his eGFR left on his ‘list’. Here, in Australia, we commonly commence dialysis somewhere around an eGFR of 10-12 (depending on symptoms and comorbidities) though some may be prepared to allow it to drift a little lower. Whatever the case, he is perilously close to that point.
Unfortunately, conventional dialysis does not hugely improve the effective eGFR. The best one can hope for from conventional dialysis is, maybe, an equivalent to a mean eGFR of 15-16 or so. The more intensive forms of dialysis at home will certainly far exceed this level but my sense is that he may struggle to manage home dialysis (in particular haemodialysis) where more intensive dialysis can be offered. In addition, I am not sure whether the other useful more intensive option of short daily dialysis in a nearby centre is available to you. Further, and importantly, I do not know whether he would be a candidate for peritoneal dialysis – only your team can advise on this – but if any dialysis is contemplated and especially is assisted dialysis at home is an option, peritoneal dialysis is certainly an option to discuss with your team.
Your dad has already put in many long hard yards. You say that he has strong feelings against the concept of ‘life support’ and, as you have also said, he sees dialysis very much in this light – as life-support. Many older patients do. It is neither unusual nor, dare I say it, inappropriate for older patients to strongly question life extension (and I would describe dialysis in this way rather than as life-support), and do not want to spend their last remaining days beholden to equipment and medical technology.
Older patients often see it differently to their families and, as you say, in the end it has to be his decision. All you (and we, as the medical team) can ensure is that all options (including the very real option of careful, compassionate, non-interventional conservative medical management) have been put to them. This, then empowers him – and this is so important to do – to make his own decision. In the end, however, we must allow (painful as this can be) our loved one to take his/her own decision if capable of doing so. Clearly, he is, and as a result, the final choice is and must be his.
Many older patients who undertake dialysis – at least in my own experience – do so half-heartedly and for the wrong reasons. They enter dialysis, not because they personally wish to (and indeed many really and truly do not) but to please their family. The fear they may disappoint those who wish so strongly for them to live by signaling that they are ready to face death, whenever it may come.
Patients pushed into dialysis by well-meaning family rarely do well. The desire to dialyse must come from within him and not from without. Unless this is the case, he will not thrive, you will be disappointed both by the technique and in the team – and worst of all (and this is true in some cases) you may become disappointed in him for ‘not trying hard enough’. I know that seems a terribly harsh thing to say but, sadly, it is often true.
Dialysis will not improve his kidney function – that is a misunderstanding held by many – but rather it replaces some of the kidney function he has lost by artificially removing waste and fluid that his own kidneys can no longer and will no more remove. Dialysis (assuming it is at a centre) will also take him away from his home every other day for many hours at a time, and again in the elderly, this is seen as a time they would much prefer to spend at home surrounded by those they love and the surroundings with which they are familiar. Peritoneal dialysis may be a way around this issue and again, if he is appropriate for this treatment, it may be the best dialytic option to explore. But, with his heart as it is, even peritoneal dialysis may add a range of problems to his already long list and, likewise, I fear haemodialysis may add as many difficulties as it may solve.
To your question ‘how long can he survive without dialysis?’ – that is beyond predictability. eGFR falls with age and, as we near our ninth decade, our mean eGFR is commonly at best 45 to 50 in the absence of any major or significant kidney disease. Many patients can live for years, comfortable and well, with no outward sign of clinical illness, with an eGFR less than 20 and with surprisingly little and often no progressive decline nor need for dialysis support.
Yes, 13 is pushing it, I agree, and with his heart troubles, his diabetes and his age, all are combining against him. I fear that dialysis will not offer your dad the improvements you so fervently wish for him. True, stranger things have happened, but on balance the dialysis road looks rocky, at best.
Here, in Australia, though we would certainly offer and provide dialysis as best as we could do for anyone – irrespective of chronological age --if it were sought, we would probably be saying quite strongly to your dad that the dialysis road will be tough and rough and has a strong chance of making things even worse for him instead of better. This is not to say we (or I) are entirely nihilistic – perhaps just realistic.
What I have tried to say in all of this is that none of us live forever. The best thing we can do for our elders is listen to them, gauge their views, hear their voice and if it is to ‘try everything’, okay – then go for it but, if there is reluctance, uncertainty or resistance against intervention, it is then kindest and wisest not to fight against their non-intervention decision but to be proud of the courage they have shown in electing that course.
As you say, he is your hero and, as such, whatever he decides … and it must be his decision… your hero he will always remain.
I am not sure whether I will have helped and comforted or upset and hindered you by what I have said – I can only hope it is the former.