Too soon for palliative care? Massive stroke question

[rubybambini]

Hello - the last time I posted here was about my daughter, and now it's on behalf of my mum.

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. 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

Friday 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. Her pacemaker was put in late 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, 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.

Wednesday 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, we have seen her deep, deep down in a coma with no movement at all, 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, particularly in the light of her tube pulling, and current condition.

My questions are:

1. after just two weeks, given all she has been through (pacemaker, infections...), is it is too soon to be thinking about palliative care? What length of time could be considered reasonable for a massive stroke of this type?

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 so much for reading.

Firstly, hugs and strength to you, what a shock for you.

I am not a health care professional, I'm a social worker with extensive stroke ward experience. I'll help all I can.

Have the staff organised a family meeting? So that you have an opportunity to speak with all the professionals who are supporting your mum?
So the consultant, nursing staff, occupational and physio therapists and speech and language.

It does seem early days to be talking about palliative care, although it sounds as though the stroke is extensive.
Remember, palliative doesn't mean actively end of life, it means that the medical staff have assessed and it is their professional opinion that further active treatment is not in the patients best interest.

Is there a social worker attached to the ward? If not, there should be a social work team at the hospital. Speak with ward staff, ask them to request your mum is assessed, start this process early as it can take time to figure out a good discharge plan. Also, request for a continuing health care assessment be completed, especially if staff feel your mum will need nursing care.

Please do post again, or message me if you need to. 

Hello there

Thank you so much for your response.

We've had meetings with various people, mainly combinations of doctors, doctors and ward sister, and last week (and today) with a stroke consultant (two different ones).

I'm not sure if there is a social worker attached to the ward, but will aim to find out. I did ask about NHS continuing healthcare last Monday, but got a fairly dismissive reply about 'that being for something else'. I'll press on that.

The situation today is that she hasn't really regained any higher consciousness - she's not recognised anyone or asked where she is. She's able to make some movements and make some noises. She seems to respond to certain voices and music, but it's very hard to say.

And it's even harder to assess if THIS IS IT, or if she could possibly improve, and HOW MUCH she could improve.

I'll ask how her care will change if/when she moves to a palliative 'option' and where that could / should take place.

Any other questions / areas we should be thinking of - gratefully received. That's half the problem, not knowing what's available, or what to ask!

It's good the medical team are keeping you informed.
So it is now three weeks post stroke. I don't want to upset you, but I really think that you need be asking the medical staff what sort of a prognosis your mum has.
Have they spoken about her nutrition? They should have considered inserting a PEG by now, especially if she is not happy with the NG tube.
I can advise you further, but I really think you need some answers from the doctors first. Also, please do push for the referral to the social work team.

Sorry just thought, until the nutrition aspect is addressed, she can't be discharged. Nursing homes won't manage NG tubes as a rule. Patients are almost always discharged with a PEG in place. All of these decisions will need to be made via the Mental Capacity Act process. This is why you need to have the social work team on board. The doctors will make Best Interest decisions re health matters, but you need to know how to challenge those decisions if you feel
they are not in your mums best interest.

It is usual to have speech and language support with mental capacity assessments, they have all sorts of communication aids including pictures.

So there is some work to be done before discussions around discharge planning can happen.

It actually takes time to get out of stroke and it's not easy at all. What the first commenter said is everything you need to know. It happened to my grandmom a few years before she died.

I know how it feels but you've already gone one step up by sharing your feelings here with us.