Too soon for palliative care? Massive stroke question

All about caring
1

Can I have some advice, please? Here’s a timeline to explain the situation we find ourselves in, regarding my mum and her recent stroke/s. She is 76, has never smoked or drunk much alcohol, and is otherwise in good health.


Dec 28 - mum visited the GP with a heart rate of 38, and a BP of 202/66 - sent home.

Jan 6 - visited A&E as felt confused and dizzy, heart rate of 36, and a BP again of over 200 + a chest infection for which she was given amoxycillin. An ECG was clear.

Jan 9 - called an ambulance as not feeling right. Paramedics discovered, via ECG, that she was in complete heart block. She was taken to hospital.

Jan 10 - sitting up in bed, alert, waiting for pacemaker op

Jan 11 - pacemaker op due in the morning, but mum had ‘an episode’ at about 7am which we now believe was a small stroke. A CT scan showed nothing, and she was too agitated for an MRI, unfortunately. Her pacemaker was put in later this day, under a general. She came round, and drank some tea. This was the last time we’ve heard her speak.

Jan 12 - she was unresponsive and very agitated in bed. She was sedated. The CCU thought she could have had a stroke (but still nothing on CT scan), and they began treating her for her chest infection, as well as sepsis, possible meningitis and encephalitis. She then became rigid with posturing at some point.

Jan 13 - 16 - in CCU, mum underwent IV antibiotic treatment for infections and seizures, along with CT scans. On 16 Jan, a CT scan finally showed a massive stroke - bilateral, caused by a clot in the fork of the basilar artery - likely as a result of the pacemaker. The stroke is mainly to the left side of her bran, but is in both.

Jan 16 - moved to general stroke ward, where she has remained since.

So - all this has happened over two weeks.

To us as a family, she has been deep, deep down in a coma, but has started to open her eyes, she can grip with both hands, seems to respond to certain sounds, and is making some groaning noises - possibly trying to speak. She also, unfortunately, is now pulling out her NG tube (feeding and antibiotics).

However, the medical staff say that they have seen no real improvement. She is about 6/7 on the Glasgow Coma Scale. They now want to discuss palliative care for mum, rather than rehabilitation.

My questions are:

  1. after just two weeks, given all she has been through, is it is too soon to be thinking about palliative care? What length of time could be considered reasonable?

  2. If you’ve had experience of this type of stroke, what was the outcome?

The message we’ve heard most is that strokes take TIME to recover from. We don’t, of course, want her to suffer, but we do want to give her time for a chance.

Thank you. Any experiences or advice gratefully received.

2

Hi V … welcome to the canteen.

Sorry to learn of your caree’s situation.

Others will be along … a holding reply of sorts … quiet on the forum as I type.

Three links.

NHS on Palliative Care :

What end of life care involves - NHS

NHS Contuning Healthcare :

Main thread :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-pointon-ruling-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-here-35998

Section :

FAST TRACK NHS CONTINUING HEALTHCARE ( NOT JUST FOR END OF LIFE ! )

( Follow the colour ! )

Leading support charity … British Heart Foundation … information page :

Information for those affected by heart and circulatory diseases | BHF - BHF

Not much but … at least some relevant information that will prove to be of assistance in the circumstances so described.

3

Hi - Whilst I don’t know about stroke specifically, I do have experience of something similar to what you are going through in respect of cancer. My husband had terminal cancer and went into ‘end stage’ quite ‘suddenly’ (traumatically). He ended up in hospital, unconscious (just about) and his consultant put a unilateral DNR (Do not Resuccitate) notice on him. (I was appalled).

he was taken off his therapeutic drugs, and placed into palliative care. The argument was that he was simply not strong enough at the time to cope with the ‘burden’ of therapeutic drugs (they had tough side effects etc).

Now, I say this because what I wanted to put to you was this - do remember that palliative care ALSO means ‘best supportive care’. It implies that the docs will ‘keep the patient alive’ but not actually try to ‘improve’ their condition - usually because the risks to a body under severe pressure (ie, very ill) may just not be able to cope with therapeutic treatment (which also carries a risk of its own).

I would suggest in your case that you get a clear understanding of WHAT they WOULD do for your mum, therapeutically, IF they were to make that decision - and what the risk and harms were (so odd, that plural word ‘harms’ but it’s med jargon!) for her. And, of course, what they think the benefit to her COULD be (at best, and at least) (ie, max/min).

Then ask them that if they think she is not ‘up to it’ yet, at what would, if she improves ‘naturally’ (ie, without medical intervention other than palliative/best supportive care), WOULD they consider therapeutic treatment?

The idea is to get some sort of ‘linear scale’ as to where she is now, and where she might be.

I do understand where you are coming from - the terror I felt, and the rage, that the doctors were simply ‘washing their hands’ of my poor brave husband, just appalled me! I felt abandoned and betrayed (I actually raged at the consultant - must have given the nurses a real treat to see him berated like that!)(he took me off for a cup of tea and ‘talked me through it’ and I did come round to ‘accept’ what he was saying)(my husband actually did get discharged, having rallied a bit, and we ended up with hospice at home …dreadful, but could have been worse…).

May I say one more thing, and it is something, I know, that at the moment you will be emotionally ‘blind’ to - that is inevitable given your fears now…but it is this. You only have to read a few of the posts on this forum to see that ‘long life’ is not necessarily a gift…sometimes it can be an ordeal. IF your mum does NOT ‘rally’ in some way, then the quality of her life might be absolutely appalling for years…and the toll that takes not just on her, but on you her family, is grim, grim grim.

Sometimes, you see, dreadful though it is, it is kinder to ‘let them go’ than ‘cling to them’ however ill they are. I dont’ say this lightly, and 76 is definitely ‘no age at all’, and yes, she ‘should’ not be dying now. But all the same, it could be that the doctors ‘are right’ in that they have seen other patients in this condition, and know the outcome is ‘not good’.

That said, keep fighting for her, and I would most definitely press the 'OK, so what COULD you do for her IF she rallies, and WHEN would you do it '…and emphasise that you are NOT prepared to ‘write her off’.

You have my sympathy - the toll this time takes on you is appalling, I can remember it only too vividly myself. But stay with your mum, hold her hand, tell her you’re there, and you don’t want to lose her yet. The human spirit is strong, and it may help her pull through this crisis…you will have done your best for her, and that will be a comfort to you, I promise you, whatever the outcome.

4

PS - all patients have a right to a second opinion. I’m wondering whether if she were moved to a hospital with a ‘better professional reputation’ for stroke would have a better outcome for her? Just a thought. Your best bet to discover where, and what consultant, would be to consult stroke support organisatoins - presumably they have forums specially// I do hope so.

5

__

would be to consult stroke support organisatoins -

Yep … British Heart Foundation … link posted earlier.

6

Thank you so much for your replies, it’s given us a template for questions to ask when we see a stroke consultant tomorrow. Much to think on.

It’s a very difficult time - not knowing what best to do, but you’re right about gaining some comfort from trying as hard as we can.

It’s very difficult for my 83 year old dad (married for 50+ years), as he wants her to be treated for as long as possible, as he believes she might come round, and he’s currently not tolerating any comments that suggest that simply might not happen due to the severity of the stroke.

Thanks so much again.

7

Your welcome , V.

I hope all goes as well as can be expected tomorrow … for both of you.

Repeat after me …

" CHC / NHS Continuing Healthcare … is that a real possibility ? If not , why not ? And , the Veyron please , not the mini ! "
( FAST TRACK … in green above ! )

In today’s Sad New World , if one does not ask , one does not get ?

8

All the best with the meeting with the consultant tomorrow. Will your dad be there as well? He sounds like he’s (very understandably, and I sympathise from my own experience) in denial. I wonder whether you can have a ‘quiet word’ apart from him with the consultant. The consultant will probably be glad he doesn’t have to ‘pussyfoot’ with you - as in, you can ‘take it on the chin’ more than your dad is able.

Remember you will have a limited amount of time with the consultant, so you need to (a) ‘stop your dad rambling or emoting’ in a ‘wasteful’ fashion (sounds harsh, but there it is) and (b) ruthlessly prioritise your own questions.

Speaking of which - I would strongly advocate writing down everything you want to know, in the order of priority. Tick them off as he answers them.

Ask the hard questions - remember, the general medical ‘code’ is that doctors don’t tell bad news to families if families don’t ask for it. So if you don’t ask ‘Is my mum dying?’ they may not tell you ‘outright’.

I would ask about timeframes - both for dying, and for improving. how long can they give her to rally…and at what point COULD they start giving treatments (are their choices on which treatments might be possible were she to rally?) (pros and cons of each)

Your original post showed you are pretty clued up as to what stroke does to people, and I would use what you wrote to indicate to the consultant you don’t have to be ‘spoon fed’ in an ‘amateur’ way - you may well get more out of them if you use the jargon (eg, GCS etc)

One ‘cynical’ thought - as we know, the primary aim of hospitals is to get their beds back! So it could be that the hospital’s need for your mum’s bed COULD play in your favour. IF you/your dad are willling to ‘take a risk’ on ‘early treatment’ for your mum, she may get it…because if she improves, she can be discharged earlier and they get the bed back, and if it is the opposite, they also get their bed back…

Are they talking about nursing homes at all, or moving her to another specialist stroke unit elsewhere?

if you are not happy with what they say. try not to ‘agree’ but to pursue a second opinion etc etc.

I know this is brutal, but in the end, your mum, to them, is ‘just one more patient’ - to you she is your mum, and your dad’s beloved wife. her survival and well being mean infinitely more to you, than to the hospital…

PS if you have researched what treatments MIGHT be possible, ask the doctor about each one and challenge him to say why each is NOT suitable (either now or ‘later if she rallies’ etc)

PPS - grim though this is, my understanding is that doctors DO have the power to DNR a patient against the wishes of family. You could ask if there could be some modified form of DNR. My husband’s consultant (reluctantly) agreed that he would be allowed a certain amount of resucc, but that after a limited time it would be halted, and he would be allowed to die. (Thankfully this was never put to the test)

9

pPPS! Just to warn you that not to be upset if the consultant has ZERO inter-personal skills, and talks to you horribly bluntly! All consultants are supposed to go on a patient-communication course, but many try and opt out (usually the ones who think it’s a waste of time in the first place - ie, the very ones who need it most!). Many brilliant doctors do tend to be heading towards the Aspie end of the scale, so a good ‘bedside manner’ is often not associated with medical brilliance. In the end, though, you want a good doctor, not a good communicator…

10

Hello, and thanks again. One of the major issues is that my dad doesn’t want me to ask ‘awkward’ questions, as I ‘might put ideas into their heads’.

For example, my first question: in other people who have had strokes similar to this, what has their recovery been like? My dad doesn’t want to ask, in case we don’t like the answer.

I should mention that my brother will also be there (he’s in his 40s too), and like me, is keen to ask the hard questions. We can’t make any kind of informed decision without knowing the facts - as they stand today / tomorrow.

For some reason, they are now giving her morphine - we’ve asked why, and the answer was for ‘general aches and pains’. It’s hardly a paracetamol tho. It’s all very concerning.

To complicate things further, I’m also 200 miles away, with my own family, travelling to the hospital and back again tomorrow - it’s really not easy. But, we’ll cope.

We’ll certainly ask about the NHS Continuing Care option, too.

Thanks so much again, for sharing experiences - it must’ve been such a hard time for you.

11

Your welcome.

When are times not hard in CarerLand ?

Even after being released , they press gang some of us back to man / woman the barricades … this forum is truly in the front line !

Once in , always in ?

12

Hi V
Of course Dad is in denial. He just wants Mum back as she was, and probably still sees her as the young girl she was when they first met.
I’d suggest letting the Consultant lead the session. Dad is more likely to believe him if he hears it direct as he will have a certain respect for his position. Then you can ask the questions from your list if they haven’t already been answered.
Remember that whatever happens with Mum is likely to have major impact in Dads life too, and he won’t be able to see that yet, he’s still in shock. This sounds like the first time that Dad is going to have to admit handing over control of his life to either doctors, or his children… which he still sees you as. It’s hard for any parent to hand over the Parent role to the Child.
Give him lots of hugs and just keep repeating that everyone is doing their best to look after Mum and him.
Is there anyway that Dad won’t be left on his own after the meeting? It might take time to sink in and he might have questions after? Could he perhaps come back with you ‘for a few days break’?

Kr

13

That’s a good point about the consultant leading, MrsAverage. And yes, he’s already said that he still sees us as children.

My brother has moved out of his flat, and back to the family home already, so dad will have someone with him a lot, apart from the day when my brother will be working. We feel the knowledge that someone is coming home each night will be of comfort to dad.

He’s already trying to do small things, eg, cook own breakfast, learn how to use the local community cars (he can’t see to drive) to visit mum, when we or relatives can’t give him a lift. Im not surprised he’s in denial, I think we all are to some degree. I still can’t believe it’s actually happening.

Thanks again for your thoughtful, and speedy, responses.

14

Hello and welcome
My husband is in a nursing home because of strokes and vascular dementia. He hasn’t lived with me for over 3 years now. I can still go into shock about it all, and almost feel it’s a bad dream. Sadly it isn’t. So it’s perfectly natural for you all to feel the way you do. My daughter’s and family sometimes feel deprived of him. Then we pick up, get on with care managing his needs etc.
((( Hugs to you)))