Removal of fluids after stroke

[NinjaOfEnnui]

My DM (82) had a stroke on Saturday. She has lost all mobility on one side, is unable to speak or swallow, and the medical prognosis looks pretty grim. She is currently on oxygen and IV fluids. They thought she may also have a chest infection which they were not going to treat with ABs but that seems to have cleared and she does not seem to have substantial breathing difficulties.

She has a list of medical ailments as long as her arm and substantial personal care needs as a result (which her and DF were masking pretty well and only became apparent when DF went to hospital and passed away over Christmas). But despite that she was doing really well at home, mobile and perfectly able to express herself and her frustrations at her mental and physical decline. Her mental capacity definitely has got noticeably worse since the autumn and she was referred to the memory clinic (mmse of 17 etc)

Basically the doctors have said she is unlikely to survive beyond 6 months if she survives this episode (relatives have been advised to visit sooner rather than later...). And her quality of life would be, to put it bluntly, shit (not a medical term ..) There is pretty much zero potential for her to regain any form of independent mobility. It is unclear if she will be able to communicate at all, or regain any type of safe swallow - she could, potentially.

The consultant today indicated we could consider removing IV fluids, but, on top of everything else, it just seems too much for me to contemplate at the moment. It seems like we are giving up on her. My head understands the arguments, and I know basically dying of starvation without any other nutrition over an obscenely long period of time is unbelievably unpleasant. There could be some kind of tube feeding, but overall that sounds quite nasty and not very effective, and if she can't swallow anything safely there is no other way of her getting a decent amount of nutrition. But how can we just decide "yes, that's it...take her off the drip"? When? What if she recovered enough she could enjoy things again? No she wouldn't be "the same" but I don't know what level of life would be intolerable for her (no, we aren't the kind of family who talks about that kind of thing in advance which is pretty stupid I know).

I know this is not something randomers on the internet can answer for me, but would really appreciate some thoughts and/or sympathy.

I'm not sure I can cope with this so soon after losing DF.

And yes, this is all horribly outing, hence the NC.

I’m sorry you’re in this awful situation.

If she is only expected to last 6 months then I imagine she is only going to be declining not improving.

In my experience staff are more likely to suggest continuing treatment even if there is little choice of improvement or up until it been clear that there will be no improvement/point.

Think of all your questions (for each option - B.R.A.I.N = Benefits, Risks, Alternatives, Intuition, Nothing) and speak to the consultant again and if you’re not sure talk it through with the nurse in charge in few days.

Gosh, what a difficult few weeks, has the doctor explained what sort of stroke she has had, has she had scans., do the stroke team feel she has any potential to improve? Nasal tube feeding can carry a risk depending on the type of stroke, there is a feeding tube that goes in the stomach which is safer and longer lasting., is there a stroke team you can talk to.

Thank you so much.

The 6 months was based on general predictions for people of a similar age, with a similar size stroke (ischaemic and "big" according to the CT scan on admission though I didn't ask for more details) resulting in the same kind of disabilities. So yes, very much based on an assumption of decline. Presumably being at greater risk of aspiration pneumonia or general infections, or another stroke.

It totally makes sense that the default would be to continue treatment unless of no benefit - even if the chance of benefit is tiny. They are obviously better judges of when that point is than me, but it does seem so soon after less than a week. The BRAIN thing is really useful though - thank you. I'll have a think through that and go prepared with a spreadsheet for the follow-up (I like a good spreadsheet).

I'm not even sure if there is a stroke team. Presumably there must be. At the moment all discussion has been quite ad hoc depending on who happens to be around at the time. The pros/cons of different types of tube feeding haven't been discussed - I thought it would be something that would automatically be considered after a few days, but if there is limited benefit overall there may be no point. Something else for the BRAIN.

All of my sympathy as well...,

This is a really tough decision, particularly as a family member, but it is also really tough for the medical teams as well. I tread a fairly pragmatic line - if she has a drip in at the minute, to me it makes sense to carry on the fluids until the drip stops working, then you have to make an active decision whether the discomfort of re-siting it outweighs the perceived benefits - its more of a 'how far do we go ?' question, whereas withdrawing treatment you're currently giving feels a bit more like you might actively be causing harm.

They're very fine lines, and it needs a good line of communication with one key family member, and one key clinician in order to focus thinking and make unambiguous plans....

Absolutely dreadful-I went through it with my mum, and it is looking increasingly likely there will be a similar pathway with my dad.

The best advice I can give is not to look at withdrawing fluids (or similar measures) as you (or the medical team) giving up on her. Her body is giving up on her and you are prolonging life artificially to the extent that you think she has some quality of life.

What do you honestly think you would want in her situation? What would she want? What has she said in the past when similar situations have arisen for other people? Is she religious? Would that affect her decisions? Just remember that you love your mum and know her best. Listen to the medics especially if there are any you feel are particularly sensitive.

Don’t feel pressured into making a decision and try to be kind to yourself while making it.

Edited to add that in my experience withdrawing food and fluids at the stage where the body cannot process it is not awful and not prolonged. The likelihood is that if your mum is not conscious and receiving appropriate pain relief the body shuts down and it can be a relief for the body. Again, ask the medics, or ask to speak to someone who specialises in palliative care.

Sending love to you all.

I'll give you my experience.

my mum had a massive stroke, very similar situation to yours. Dad dithered over whether to turn life support off for days. doctors said she wouldn't survive. They are the leading stroke team in our area so you couldn't say they had no experience. Mum was already in hospital for UTI and the ward she was on wasn't happy with her presentation on the day it happened and called them up. The stroke happened while she was with thr stroke team and she got the best possible treatment she could have done, in the swiftest time possible from experienced stroke consultant. He couldn't predict the future though.

four years later we are in a very unenviable position with mum at home, immobile and unable to speak. Dad is miserable, mum is miserable and I am miserable. As painful as it would have been to have lost her 4 years ago it would have been infinitely preferable to what has transpired.

i know it's heartbreaking but in your position, with the benefit of hindsight, I wouldn't hesitate to withdraw treatment and just make her comfortable. She is now a prisoner in her own body and my dad is a prisoner in their home looking after her as she is extremely demanding.

our society rejects the idea of death and while i understand how you feel you would be "giving up", in the kindest possible way of saying this, your mum is 82 with existing health conditions. Continuing medical intervention is likely to just result in making the end longer and harder for you all. It's been heartbreaking over the last 4 years, I just wish that my wonderful, Talkative, cheerful, immaculately dressed, elegant and kind Mum had died then and that I would not be left with the very sad memories I will be left with.

Thank you so much all for your thoughts and sympathy. And 💐for @trockodile and especially @StiffyByngsDogBartholomew going through the experience as well. Your experience sounds atrocious. Unfortunately (or possibly/ probably fortunately) I never had to make the decision after all, as mum passed away this morning, still dripped up. She was peaceful and not in any pain, and I was there to hold her hand and tell her she is loved. Honestly, devastated though I am, I am glad she is at peace now and not struggling to make her body do anything 😢

My condolences @NinjaOfEnnui and also for the loss of you dad just a few short weeks ago. What an awful few weeks you've had, but I hope your DM's swift release on her own timescale and without you needing to make any decisions brings you some small measure of comfort. In the end, her suffering was short, and for that I'm sure you will be grateful

Sending you so much love @NinjaOfEnnui

Sending much love to you all ❤️

I'm so sorry for your loss @NinjaOfEnnui. I'm glad your DMs passing was peaceful and hopefully that will help you in your grief. Much love xx

Thank you so much all ❤

@NinjaOfEnnui so heartbreaking, thinking of you.