My Nan has made a decision to stop dialysis treatment. Are you able to explain what can be expected now? Its all very scary - my auntie who had RF died a few years ago but she was still undergoing dialysis treatment when she passed away - not sure what will happen whilst withdrawing from dialysis and if there’s anything we, as my Nan’s family can do to help her - will she be in pain?
At least to an extent, the duration between discontinuation of dialysis and death depends upon the amount of residual function remaining in her own native kidneys. Some who discontinue dialysis shortly after starting may have quite a bit of residual function which can lead to a longer period of time before death supervenes. Those who have been on dialysis for a longer (or long) time will have little (if any) remaining native kidney function and will have thus been depending on the dialysis process for all fluid and waste clearance. In this circumstance, death will come earlier.
Your Nan’s managing team will best be able to answer the expected or likely time … though even trained and wise professionals can ‘get it a bit wrong’ now and then … I certainly have had some surprises in my long career in renal medicine … so it can still be a bit difficult to tell with complete accuracy.
Usually, if managed compassionately and with gentleness, end stage kidney disease is a rather nice way to go … indeed, I always say to my patients who are withdrawing that ‘if I had a way to choose to die, it would likely be in and from renal failure’. It is most commonly painless - a deepening, lengthening twilight where more time is spent in sleep (some might call this coma) and with less and less time spent in the ‘awake’ state. It is most often a drifting away …
As dialysis is no longer being delivered, wastes (especially potassium) build up … and, in the case of potassium, this occurs until the point where the heart will just stop beating - without pain, and without any indication of when. It just stops. Commonly, it does so during a sleep (or coma) period. She will not be aware. She will not know. Just make sure that the ward teams know not to call a code and to disturb a gentle ending with ill-conceived resuscitation efforts - nothing is more awful than that. And it happens. So, make sure that if Nan is in hospital for this final journey, that it is clearly understood … no resuscitation!
Sometimes, some patients can accumulate excess fluid, making breathing difficult. I always think that if this happens, it is most commonly our mistake for not managing the patients’ fluid intake more carefully - rather than calling it ‘the patients’ fault’. However, if fluid overload does occur, this can be easily managed with an unobtrusive, gentle run of ultra-filtration only (not dialysis, just fluid removal) to restore comfort. In our experience, this has been a rare need indeed.
We have had patients, so relieved by the decision to stop, who - if hospitalised - have thrown ‘a wake’ in their hospital room. One or two have even been taken out for it to a local pub. I remember one patient vividly, a wild Irish lady with a wicked sense of humour and a wonderful life-approach, who, after 15 years, decided enough was enough. The ward party was a corker! All her friends and relatives came. There was reminiscing, laughter and stories. She has her whiskey, her bananas, the lot. And, she died happy and unaware, a few hours after the last guests had staggered home. It was her way, and she held to it to the end.
Where possible, we encourage patients to die at home with support from our hospice and/or palliative care teams … especially if the family are able to manage at home. In my view, it is the best way, if it can be arranged and your Nan and your family supported. Knowingly, these patients often enjoy eating all the yummy potassium-banned foods they have gone without for so long - conscious that by doing so, they may hasten - and embrace - death. I have no issue with that … how could it be an issue!
Some, however, just aren’t up to this and prefer to drift into ever longer periods of sleep interspersed with shorter and shorter waking lucidity … though it is important that, wherever possible, someone near and dear is there, sitting by their side, to comfort and accompany them through their waking hours … for those waking hours can, for all the reassurances and love, be a scary time. Talk in positives, reminiscence … raising the ‘do you remember when’s …’
And, pain? … no, she should not feel or experience pain. If she is in pain, it should be expertly managed by the pain team or the palliative care team - they are always better at this than the renal team - for they are skilled at helping the dying while we are more used to focusing on survival. We use our specialist pain team, our specialist palliative care group and our home hospice nurses - all three - to help us in territory unfamiliar to us. Yet, as the renal team has managed her for so long, it is unwise to just ‘disappear’ off the scene. We must be there to the end for her, but using the expertise of others to guide us all along the right paths.
The time from discontinuation to death - and it is death of the physical body, so don’t be afraid to use the word - is a drifting time. It is a time where intense family strengths can be gained, a time when you can give back to your Nan - through strength and love - some of the strength and love she has clearly shown to you all these years.
It is not an easy time, but it can yet be a beautiful few days - and it is usually only a few days. They are days through which you can gain yet more from your Nan (especially an understanding that everything is finite and has its time and place, and of how we can peacefully pass from the world) … yet, at the same time, you can be of great comfort to her through your positive strengths as she takes her final journey.
Thank you - your advice and knowledge is much appreciated. The medical team who look after my Nan are very good at treating her but not so good at communication. Thank you!