Finding it hard to navigate the system for terminally ill DM and feel a bit panicky

[franke]

Long story as short as possible:
DM (89yo) has advanced esophegeal cancer. Has been living in a very nice care home with nursing care available for the last six weeks. She had a stent put in about three months ago but is now struggling to swallow or keep anything down. GP arranged for her to be admitted to hospital to have the stent looked at (actually sounds to me like the tumour has encroached on the stent but I'm no medic).

So we went to hospital and she was booked in through the A&E dept. We waited a relatively short time (about an hour) and lovely doctor came and talked through everything with her. He said he'd like to admit her firstly because she's dehydrated, and then to have the stent looked at but it would mean waiting 'literally hours' for a bed. He also said it could mean up to a week in hospital. Mum, by now feeling extremely weak and uncomfortable, declined to wait and I took her back to the care home. She said she'd try hard to drink more.

What can we do? The dehydration seems to be the most urgent concern. Obviously I need to talk to the care home but I'm under the impression they can't administer fluids intravenously. Do we have any other options? My mum's dying anyway, but in not getting the fluids she needs her death is being hastened in the most uncomfortable manner. Waiting around in a hospital for hours in her current condition simply isn't feasible. I don't live in the UK so I'm just not up to speed with the system here. Any advice before I talk to her carers would be great.

I’m so sorry for you and your Mum, it’s appalling they didn’t give her a drip in A&E.

Your Mum deserves the best palliative care she can have. I know my Dad ate less and less but until his last day he was still able to drink water.

My suggestions are to try your local MacMillan services www.macmillan.org.uk and ask about what help is available. Also look for local hospice’s as some provide hospice care at home. They should be able to help get your Mum the treatment she needs.

I did a very quick Google and I don’t want to raise your hopes but I found this leaflet which does imply a stay in hospital then IV at home is possible for some people - it may not be suitable for your Mum but at least you can ask about it www.hey.nhs.uk/patient-leaflet/home-intravenous-fluids-ivi/

I meant to add, you need to be very proactive and really chase/push the NHS and associated services to help your Mum. We found we had to be a strong advocate for our Dad. Many times we said how would someone elderly navigate this on their own.

As she is terminal, has she been transferred to the care of the local Macmillan / hospice team? Intravenous fluids and this type of care is exactly what a hospice can do. My parent (similar cancer and adventures with stents) was then given ‘hospice at home’ care where a syringe driver was fitted and they were kept very comfortable until the end. I don’t see why this ‘at home’ care can’t be provided in the care home by visiting hospice nurses. From when my Nan was in a care home, they should be able to manage basic hydration through sips of liquid, sponges on sticks etc.

I have to say with my parent this was one of the rare occasions where the GP was actually brilliant - they and the district nurses were at the centre of everything for us. That might be an avenue for you to explore.

You could ask her GP or consultant for a referral to the community palliative care team. Ours are excellent and have all sorts of suggestions that don't occur to/are not available from the GP or hospital.

Thanks for these very helpful replies.

To be fair they did offer her a drip in the A&E dept. but that would still have required a long wait - by then mum was fading and just wanted go back to her care home. The NHS seems to be full of good and dedicated people working within a system which is overwhelmed. I really can't fault anyone we met yesterday. A&E was full of people who all needed attention, and it just seemed crazy to me that this was dm's gateway to treatment.

This is all good information about the hospice - she has been referred to the local hospice but we haven't really needed them until now. The head nurse at the care home actually contacted them last night to get things moving so hopefully they'll be in touch soon.

You're right, I do need to advocate for mum and will do so now you've given me something to work with. Thank you all so much.

The system is really complex to navigate, not least because hospice care is often charitably funded and will vary in what they offer. Our local hospice does not provide IV fluids for example. It would provide a syringe driver to deliver medications to decrease pain though, but that isn’t the same.
Being practical, could she manage to suck ice chips or lollies? And when asleep, keeping her mouth moist with a baby’s toothbrush is important for comfort but the sponges aren’t used locally any more in case the end falls off.

In our area, we have something called “ Hospital at home” which provides nurses to visit and administer IV fluids among other things. It was offered to my mum to avoid a hospital admission but her dementia meant that she was not compliant so it was not a success.

Her care home had some gummy sweets that hold water which some residents are given, I’m not sure of the name but I think the care home manager would have heard of them.