Poorly Nan (When to stop dialysis)

[system]

Hello
I dont know where to start…My Nan, who has suffered with CKD for sometime has been in hospital now for 11 weeks. Well over a year ago she had a fistula fitted in her arm and it didn’t sit right? (forgive me as my knowledge on this subject is not great). My Nan kept going for checks at the renal clinic however a few months back they said she wasn’t a suitable candidate for dialysis and that her only other option was palliative care. To explain a little about my Nan, she is 85 with a long history of chronic heart failure, a heart murmur, chronic kidney disease and diabetes - all of these combined with her current hospital admission have also left her completely immobile. 11 weeks ago my Nanna collapsed during the night and was rushed to hospital where nobody really seemed to know what was going on with her until one particular day almost 4 weeks later we got a call to say she was being urgently transferred to a different hospital for dialysis? Her creatinine was 538 (I dont understand what that means??) and there was something wrong with her potassium/calcium/urea levels? She was immediately started on what they said was a 2 week dialysis trial - haemodialysis - following this they would review everything. I’m not sure how this came about when they had said a few months back that she wasn’t suitable for dialysis. Initially my Nan was really poorly on the dialysis and then a couple of weeks into the treatment she seemed to perk up a bit however - (BIG) however - the last 2-3 weeks we have seen a dramatic change in her - she is in permanent pain, she is breathless, she sleeps lots, she barely eats and what is perhaps the most distressing symptom is that she appears to have completely lost her marbles. She has always been fully compus mentus and now, practically overnight, she doesn’t always know who we are, she hallucinates and she just seems to have totally lost her marbles - she sees people who arent there - she talks to people who aren’t there, she says the most bizarre things all the time (she asks me what I’m doing on the ceiling etc etc) - she was very distressed yesterday as she was convinced my Mum had been admitted to hospital with severe flu and that my Mum had been dragged away by Dr’s screaming. My Mum had only left my Nan from visiting about an hour earlier - I’m just giving you a brief description but I could tell you stories all day about what she has been saying and doing. The reason for my post is just that none of us understand what is happening at all - we’ve had a meeting with my Nan’s consultant on Thursday who said that she wont get better, the dialysis is not working as expected, although it is maintaining her existence, they will continue with dialysis (which really distresses me knowing how much my Nan hates it and knowing what it is doing to her), her quality of life will not improve any and her symptoms on the whole wont improve any. This is devastating. It breaks my heart to see my Nan the way that she is and it seems she can not now expect any better from her life - its as though she is here with us - but she isnt here with us - if that makes sense? The nan we knew several weeks ago has just disappeared. The consultant didnt give any indication of how long this will continue and we spend our lives on pins - waiting, wondering - could this awful existence my Nan now has (she is so unhappy/depressed/unwell) continue for years due to the dialysis maintenance? Is there anything we can do for her that would help improve her symptoms? Her doctor also said that she has signs of infection in the lower lobe of her lungs which potentially could have devastating consequences - what on earth does this mean? I’m sorry to go on and on and on, and I know you dont have my Nan’s full case history but any advice you could give to put us in a clearer picture would be gratefully received. I never know from one day to the next whether I can expect to see her alive again, I’m a bag of nerves who cant concentrate through the day and who sleeps with the phone next to my head in case the hospital call during the night.

Thanks
Emma

Oh…I forgot to mention that my Nanna is also in isolation as mrsa was found on her catheter site - I dont know if this is something to be concerned about or not but the hospital staff dont seem unduly concerned so I’m thinking not.

[John_Agar]

Dear Emma

The story you tell is so sad and personal and individual – to you and your family - yet so wrenchingly common to so many who have gone before you and to the many who, like your Nan, you and your family, will tread similar paths in the future.

The truth of it is that chronic kidney disease (CKD) can be life-destroying – especially for elderly patients. There is no disease I know of that affects each and every bodily system as does CKD.

Why? … well, as the kidneys fail and shut down, the body begins to be unable to remove excess wastes and fluid – the toxins, salts, excess water and metabolic by-products that the kidneys usually so easily ‘clear’ from the body but which, when the kidneys fail, build up and act as toxins to all the systems of the body, poisoning and deranging the functions of the brain, the lungs, the gut, the liver and the heart and circulation – every nook and cranny of the body is affected.

In the elderly, especially, the management of end-stage CKD is fraught with so many conflicts and indecisions – ones that I, along with all other renal health professionals, battle with every day. Many elderly patients are ambivalent about beginning dialysis in the first place – taking the attitude that they have lived their “three score years and ten’ … a saying derived from Psalms, I think, where it reads … The days of our years are threescore years and ten; and if by reason of strength they be fourscore years, yet is their strength a labor and a sorrow; for it is soon cut off, and we fly away.

Many elderly patients would – were it not for a sense that they may ‘disappoint their family’ by not ‘trying’ – eschew dialysis and take the conservative path. This may be less so in the US where, it seems, there is a greater ‘push’ to embrace dialysis and steps to prolong life at all costs than is perhaps the way here in Australia, or in the UK and Europe. But, this is a dilemma we face day in, day out … how far, how hard, how long to push. There is no right answer.

We take the attitude here that, in the elderly patients especially, quality is what matters – not quantity. And, when that quality is so severely curtailed and recovery is so unlikely that everything seems to be collapsing (and sometimes quickly) … compassionate withdrawal of extended effort is the right course.

What am I saying here … well, perhaps your Nan has fought hard but, from what you say, it is a fight she is losing. At the start, she was being prepared to give dialysis a go … she went so far as to have a fistula put in but it didn’t develop (mature) well … and the failure of a fistula to 'mature’ (common in the elderly) may have proved to be both a major disappointment to her and a sign that, after all, things were not going to be as easy for her as they first seemed.

Diabetes and heart failure are poor bedfellows with CKD – these 3, when taken together, compound the risks and exponentially accelerate the complications of dialysis and the other treatment needs of end-stage CKD. Add to this her 85 years, and I can see her beginning, back then, to weigh up her chances – and seeing them as limited indeed.

At this point, her doctors clearly began to question the wisdom of putting her through dialysis … and it seems that they came to the conclusion that dialysis would be more of a burden to her, an additional and negative quality burden rather than a solution and a quality positive. They advised that dialysis was not in her best interests.

This apparent indecision is common – both for patients and for us, as renal specialists: will ‘benefit’ or ‘burden’ result from adding dialysis?

Sometimes simple, small things change our minds – converting ‘benefit’ into ‘burden’ and ‘dialysis is best’ into a recommendation for ‘conservative care’.

Conservative (non-interventional) care is a real and often advisable course. By intervention here, I mean machine and equipment intervention. Good studies - really sensibly and well done - have come from the UK and elsewhere, showing that CKD patients >80 years of age with more than one comorbidity - your Nan has several - do as well - or better - and certainly maintain an better quality of life if treated conservatively without dialysis. Their survival is a little less than 3 months shorter (on the average) than matched patients who chose dialysis … but their quality of life, their hospitalisation rates, their last remaining time, is better.

I wish I got it right all the time – but I don’t. No-one does. And, in retrospect from what you have said, they may well have got the conservative care decision right, for your Nan. The problem arose when she had an acute ‘collapse’ which forced the decision back to ‘should we’ or ‘shouldn’t we’ dialyse.

This highlights one of the clear advantages for Advanced Care Planning – a process we strongly support in my own unit – and one which we encourage ahead of time such that when an acute issue arises, the patient’s wishes are clearly known and can be honoured.

Often younger staff can be less certain about ‘should we’ or ‘shouldn’t we’ decisions – especially when something acute occurs to force the decision upon them – and in this circumstance, commonly take the interventional approach. Emergency departments commonly face this dilemma when a patient arrives, acutely unwell - and a sharp, hard, fast decision is needed.

Intervention may look good to begin with … but it can (and often does) go sequentially wrong, one thing leading to the next, as a chain reaction passes through the systems of the body and bits of us begin to fail.

Nan had a creatinine of 538. As I am thinking Nan may be small and have little muscle mass (the source of creatinine) as is the case with most elderly women, then her effective kidney function was well below 10% at this stage … perhaps more like 5-7%.

At this point, unless dialysis is undertaken, she is not likely to survive long. However, the dialysis treatment itself, in the elderly in this situation, is commonly an additional intrusion, an additional trauma.

True, some make it through … some do! To be fair, though, most do not. The dialysis only adds to the misery, rather then relieving it.

We have all regretted, later, a decision to dialyse, sometimes made in the heat of the moment when there is such pressure to ‘save’ and so little time to weigh the likely outcome and bring anxious relatives to understand the likely futility, when there is so little time to really weigh the pro’s and con’s – as it seems had been done in the months leading up to the acute illness … that ‘should we’ or ‘shouldn’t we’ moment.

Then, once dialysis has been added, and it is seen NOT to be the rescuer but the tormentor … how to then withdraw? How to change hope to acceptance – especially for distraught relatives?

Your Nan now sounds as if, to add distress to your understandable anxiety, she has an ‘acute brain syndrome’ – perhaps fed by the sepsis (infection) in her lungs – which has led to her mental state. You used the word ‘bizarre’ – and it is a good word for this state (if how she is behaving is due to an acute brain syndrome – as I suspect). Though it, too, is ‘potentially recoverable’, my emphasis is on ‘potentially’ as it is compounding the rest of her issues.

I hate to have to say this – but, on the face of it, I think your Nan is likely dying, Emma. Continuing dialysis may simply be prolonging her misery and her pain. To do that is, in my view, the wrong way – though seek a clear message from the most senior of her doctors. Ask them to be realistic. If they are clearly pessimistic – and I suspect they will be – then sometimes, it is best to permit death – and to permit that to be a death with dignity – and with you by her side. I personally believe we would all want that for ourselves. If we want that for ourselves, if behooves us to ensure it for our nearest and dearest.

I may be wrong - indeed I hope I am – but I suspect I am not as, reading between the lines, I think this is what her doctors are saying to you. If so, then the kindest gift you may now be able to give her is to allow dialysis to be withdrawn and for nature to take her as gently as we can help it to do.

I hope I don’t sound heartless or unkind – I don’t mean to be – but being strong for her when she can no longer decide (or be strong) for herself may be the best gift you, as her granddaughter , can give her.

[MooseMom]

Emma, I am guessing you are in the UK (maybe Australia) but not in the US, so I don’t know how such things work over there, but I went through this same sort of thing with my own mother this past summer. My mom had been on dialysis for 5 years; she lost her renal function after an aortic repair, so it was a great shock. She gradually developed congestive heart failure and was fitted with a pacemaker. Her health gradually declined over the five years, and dialysis became less and less effective. I never got the whole story, but I think she contracted a UTI that lead to septicemia; she was in ICU for 16 days during which time they continued to dialyze her and put her on a respirator. She went through a short period of bizarre behaviour. It all sounds so much like what your Nan is experiencing.

I live on the other side of the country, so I was not there to make decisions, but if I knew then what I know now, and if I had been by her side for her entire illness, I would have considered hospice and would have stopped dialysis. Dialysis was always such a burden, and in her last weeks, I do believe it was torture. So much was done TO her rather than done FOR her, and I regret letting the docs just pull out all the stops, as it were. The manner of her death was brutal and entirely devoid of peace and dignity. Prolonging life just because it is technically possible is seldom kind or loving.

I wish you and your Nan all the best and hope that whatever decisions you both make will leave you with no regrets, only peace. I am so sorry you are having to experience this. It is beyond horrible.

[emmaLa31]

Thank you for your response! I know its taken an awful long time for me to acknowledge what you have said, I can assure you I have read through and taken in what you’ve said a million times - I just didn’t know what to say next. You’ve really helped me to understand my Nan’s situation and how we’ve reached the stage we are at. What seems miraculous to say, is that at this moment in time, my Nan is with us but for anyone who is reading this who is considering whether dialysis is appropriate for somebody so late in life and for somebody who has so many other ailments, the past 6-7 months have brought nothing but sadness, pain, suffering, trauma and frustration. Its been a real roller coaster of events since I last posted on here - I’ve lost count of the times we’ve dashed to the hospital in preparation to say our goodbyes - and then my Nan has come through it - but she hasn’t come through it well. My nan spends her days alternately between a home with 24hr nursing care and the hospital where she goes as a daypatient for haemodialysis - she used to live independantly but hasn’t been home since she initially collapsed (see previous post) - and she wont be going home. My nan now appears to have dementia, she can’t sit up, she can’t feed herself or go to the toilet and she can barely see anymore - she hates dialysis but until recently the thought of dying scares her too much to stop - she still thinks she will get better and go home sooner or later. Now, my Nan has not had a full dialysis session since 25th May because her fistula is too hard?? They managed to do a little bit on Monday (enough to take her out of immediate danger) but were unable to do any at all on Wednesday - I’m not sure what plan b will be!?!?! This week, my Nan has come to the decision that she doesn’t want dialysis any more and has discussed it with a doctor however my auntie got really upset about this and made her promise to continue - though I dont know how she will when the fistula is blocked! I honestly, in my 31 years, have never ever witnessed anything like kidney disease and its effects on the body, it really is trully awful and if I never saw anyone suffer with it again it would be too soon! Again, I know its taken me too long to acknowledge this post but I have sat here time after time not knowing what to write, what to say - just feel numb and shocked at what the past few months have brought! But Thank you so much for the time you took in explaining what was happening, I appreciate it more than you could know, thank you!