Wanting to put MIL on end of life care? Any drs/ nurses to advise?

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MIL ( eighties) is in hospital. Over the weekend she had a couple of falls. Then on Monday she became unresponsive. 999 said ambulance would be three hours. Then she was having trouble breathing so they came. Once in the hospital they did an x ray and said pneumonia. She was still unresponsive so they did two brain scans which they said didn’t show a stroke. Then yesterday they decided she has had a significant stroke. However last night she started opening her eyes, making sounds and squeezing hands in response to questions. This morning the consultant had told dh they want to move her to end of life care? She’s still passing urine so her organs aren’t shutting down as yet. Should we be resisting this? Ask for treatment to carry on to give her a chance to improve. Any advice very welcome.

Hmmm what was she like 10 days ago before this infection?

You absolutely can question and ask for more support for her.

I'm so sorry to read this, op. I think in your position I'd be following the advice of the consultant, they'll still look after her but focus on palliative care - comfort and ease - rather than active intervention. However, I'm not a medical professional so I can't advise if there is anything more they can do.

I would suggest you ask to speak to the consultant and/or the nurses and ask for more information and reasoning from them though.

Sorry to here OP, you really need to talk to the consultant.

Quality of life after a significant stroke is not likely to be good.
The consultant will be acting in your MIL best interests.
Tough times for you all.

What sort of treatment would be the alternative, and what might the outcome be? Do you have any idea of what MIL would want under these circumstances?

Palliative care is offered when they don't see an improvement allowing for a quality of life or any meaningful recovery.

Also when there is a really high risk of the same illness reoccurring when treatment is stopped.

Both my mum (cancer) and Nan (heart failure) has end of life care when treatments had become futile. It was very good and very dignified.

I agree with PP to ask what they think recovery will look like.

If it was me I’d be going with consultants advise. I’m afraid I come from a family where we are for quality not quantity of life. I’m so sorry you are facing this.

She’d had some stomach problems which although weren’t serious had stopped her going out much and she’d lost her appetite. Other that she was quite bright. I think it’s just a shock. I’m always a bit mistrustful of drs so that’s why I was asking.

I'm so sorry, this is a tough decision but you have to do what's right and kindest for your mil.
Families often ask for the patient to receive treatment or have more tests etc but to put an elderly , unwell person through more treatment can be cruel and not worth the discomfort it would cause them .

Talk to the doctor and I hope you can find some comfort in knowing you have done the best and kindest thing for her xx

Don't give up on her yet.

When my own nana went through similar situation. We opted at for for palliative care , no more tests as they wouldn't act.
She had an active life before she had a stroke and we knew as a family she wouldn't want this lack of dignity.
She finally had a chest infection, we said no to antibiotics.
She was then put on eol care plan. She died comfortably with her family.
She still had the same level of care and treated symptoms not the cause.

Great aunt was in similar situation this year. What we talked through was what her quality of life would be like if she got any better. It was obvious she would never be able to go home and would need significant care. She had been very independent until this fall and a broken hip. They said even if she pulled through she would struggle to walk again. We knew that she would not want to live like this, she would be devastated so we withdrew all medication and she died peacefully 24 hours later. It was very difficult.

That's not helpful.

People don't die because we give up on them.

People die because it's a natural end and the only thing we can guarantee in life will happen to us all.

The consultants will have their reasons. The OP needs to hear these.

If there isn't any chance of a good recovery and quality of life it's not giving up. It's accepting reality.

My elderly relatives have had palliative care, but that was at the end of very long illnesses so it wasn't at all unexpected, as it is in your case and in those circumstances it seemed like a relief for them.
However, you are being asked to make a decision quite quickly after hospital admission and after rapidly changing diagnosis, so I think you are well within your rights to seek further advice from consultant and/or doctor.
Could you speak to your own GP for advice? And ask them who else you could talk to? Hopefully someone on this thread will have had similar experience and may offer some suggestions.
No medical knowledge but sympathy for your situation.

@DuckbilledSplatterPuff this is it. I feel a bit like they’ve changed the story so many times I don’t feel confident in what they’re saying. I can’t get to the hospital as I’ve got the kids so I’m trying to push dh to ask questions but he’s so upset 😔

I'm sorry OP, it's a horrible shock and a sad situation, especially if your MIL was in generally good health prior to this.

I do think when the question of assisted dying crops up supporters often make claims about terrible, painful, undignified deaths that people are subjected to in order to justify their position. And yet when hospital consultants offer the option of a peaceful, pain free death some people (I'm not suggesting you are one of them) see it as killing off their loved one and demand all interventions possible.

I am health service, not ward based. I do see some long term survivors of strokes as my department is involved in managing gastric feeding tubes. Once people get over the initial insult they can survive for quite a long time (age and other health issues depending). But with very limited quality of life. Invariably in a home as not many families can manage 24/7 nursing care. Loss of speech. No mobility. Maybe some awareness of their situation maybe not. A friend's mil had a major stroke and was in a home for years, she used to be such a smart, sociable lady, it was very sad for all the family to see and for her as I believe she did have some insight of her situation.

I'd welcome the consultants advice, I really would.

Also did she have any advance directive or particular views that you are aware of? You might want to think about what her wishes would likely be.

I can see the difficulty here - you were told the scans did not show a stroke so you believed that; and then you are told she has had a significant stroke, but you are observing improvements in her responsiveness. This must make it all feel very unclear in your minds.

I think that you need to ask for a conversation with the consultant to resolve what must feel like uncertainties to you. If you have that clarity you will be better able to make sound decisions on her behalf. Does your OH have power of attorney for her health and welfare?

My OH had Parkinsons and his quality of life was zilch in every possible way. When he got pneumonia they were planning to send him into hospital (which he had previously asked never to happen again) - I had PofA and, after talking with my children, I asked for them to put him on end of life care. He died a peaceful death.

If the consultant is able to reassure you that your MIL has no hope of a normal quality of life then the end of life care route is the kindest. I have never regretted the decision we made on behalf of my OH.

The doctors will have "changed the story" over time as test results come in and they observe. End of life means not doing invasive treatments, it doesn't mean they are giving up. If she rallies they can change tactics too. They are preparing you for the fact there isn't really a treatment option

I would echo previous posters & maybe ask for a phone call between you, your husband & your MILs consultant.
This May help you understand why what you are being told has changed; from the info you’ve given I would guess the following has happened(I may read this wrong, if so I apologise):
Your MIL is fairly frail, she may have an underlying condition (stomach pains/weight loss), she developed a pneumonia, this caused her to become unsteady on her feet, hence the falls; it also increased her risk of stroke. She had a stroke on Monday. Ischaemic strokes don’t always show up on CT scans that are done soon after the stroke, this is why the doctor initially may have thought it wasn’t a stroke. An MRI has later been done, which is more sensitive for the brain & this has shown the stroke. Over the past few days the antibiotics have improved her pneumonia & the brain swelling caused by the stroke has settled a bit which is why she has shown some signs of improvement.
Predicting recovery from stroke can be difficult, but recommending palliative/end of life care is never taken lightly.

You need to understand the reasoning for this option and make sure you personally understand the dying process. I would start by asking how the decision was made that eol care is an option.
Make sure you understand EOL care, like withdrawing treatment such as feeding is not an attempt to starve to death but to provide maximum comfort in the dying process as dying bodies do not need nutrition. You can Google end of life care pathway and explore it yourselves to help you.

It can be difficult to ask questions and process the answers when you are still very upset and dealing with what can be sudden and earth-shattering news. I know a relative who was barely able to drive after a similar event as they were in shock.. not the hit over the head kind of shock, but emotional shock.
DH may well need your help in meetings/conversations as two heads are better than one.
Some very good advice on this thread
It does sound like you need to talk to the Consultant as soon as you can. But I don't think they should expect you to make the decision there and then. You can still ask for time to consider it, although other pps may know more about this than me.
Can only add write down all your questions as its easy to forget them in the heat of the moment.
It sounds like everything is happening quite quickly and perhaps you should think about finding someone to be on standby to help out with looking after the children, whilst you both deal with this.
Also occurred to me that perhaps you could ask organisations like Age Concern for advice about hospice care? So sorry for what you are both going through.

One thing if you do go the EOL route is ensure even if not fed she has water. I understand not feeding people whose bodies are giving way, but depriving them of water (even if it takes marginally longer for them to die) seems cruel.

OP it seems sensible to set up a meeting (possibly by phone if you can't ask anyone to take the kids for a bit) with the people involved in DMiL's care.

The purpose would be to make sure

a) you both understand

• what state MiL is in, now,
• how they found that out (what tests, evaluations, observations they made)
• what the range of outcomes is ("what became of the last ten people you saw in a similar state?")
• what treatment plans are possible
• Which plan they recommend, and WHY

and

b) that the consultant and colleagues are fully informed about DMiL - that they know what you know.

Be honest about the bad as well as the good: if she actually is on the way out, it's counterproductive to put her through futile procedures.

Take a notebook. Don't be afraid to ask for a minute (or ask them to repeat something so you can record it) if you feel so overwhelmingly stressed you're not taking stuff in. (There are solid neurological reasons why memory formation is interfered with when you're very stressed).

Thank you everyone. I’ve called a stroke charity this afternoon snd they talked me through a lot of things so I feel a bit more informed now. Waiting for DH to call

@Fenella123 thank you for your really thoughtful post. I’m going to suggest all this to dh