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Hospital treatment under palliative care? - Page 3 - Carers UK Forum

Hospital treatment under palliative care?

Share information, support and advice on all aspects of caring.
If I had the same choice I'd go for hospice if it's offered. Hospices allow unlimited visiting (mostly) so you can be there as much as you want but there are professionals to do 'the necessary tasks' leaving you to do the hand holding, comforting and talking. EOL at home can be tiring, stressful and full of responsibility. It's easier if there's family to share it with and spread it over.
These days there's a third option in some areas called 'hospice at home ' that sounds interesting and might be worth exploring

(((Hugs))) at this difficult time

Xx
MrsA
Rosemary, sorry if I interpreted your post as 'bitter' (possibly imposing my own reaction to having my husband DNR'd!), but certainly not angry or bitter. Perhaps 'resigned' might have been a better term for me to use!
Definitely hospice over hospital. As for leaving your mother in pain, that is disgraceful! Surely pain management is THE priority at EOL. Hospices are excellent for pain management - they have shedloads of opiods....

Mrs A mentions hospice-at-home. I had that for my husband, and was very very gratefulf for it, but yes, it did mean more 'nursing' from me - the hospice nurses (and sometimes the district nurses) came I think about twice a day, and were oncall all through the night (and once did have to come out), but it isn't quite the same as 24x7 nursing care.

One thing if your mum is in a hospice, is that you should be prepared for her to 'slip away' when you are not there....it seems to be very, very common, especially with parents, and nurses report time and again that the patient stays in the world while the visiting relative is there, but when they leave, that's when they 'let go.' It happened to my SIL for both her parents in hospital, and was upset by it until the nurse told her that it was so very, very common for that to happen (sometimes within minutes of the visitor leaving their side.)

My own interpretation is this - no parent would ever want to 'abandon' their child, however grown up the child is, and I think for that reason they 'hang on' while the child is at their side....but when the child leaves, it's as if they've give tacit permission for the mum or dad to 'leave' too - the child no longer 'needs' the parent, and the parent can feel free to let go of the burden their life has become to them through age and infirmity, and find the peace they seek now....
Thanking you all for your support.

BB,. I've complained to CQC this morning:

Lack of air mattresses, health care assistant refusing to provide water jug and cup, nurse supporting HCA confirming it was not her job, lack of chair, lack of recliner (x4) inappropriate discharge, false discharge papers, no follow up from PALS, out of date (2014) cqc rating poster displayed in lobby, patients never turned in bed, consultant saying mum should not have been admitted the last four times. Oh, and development and worsening of bed sores. Incorrect hoist at home. District nurses and palliative care services not reinstated.

That should give them something to consider.
Rosemary_1706 wrote:
Fri Apr 27, 2018 11:46 am
Thanking you all for your support.

BB,. I've complained to CQC this morning:

Lack of air mattresses, health care assistant refusing to provide water jug and cup, nurse supporting HCA confirming it was not her job, lack of chair, lack of recliner (x4) inappropriate discharge, false discharge papers, no follow up from PALS, out of date (2014) cqc rating poster displayed in lobby, patients never turned in bed, consultant saying mum should not have been admitted the last four times. Oh, and development and worsening of bed sores.

That should give them something to consider.
Just a little something!!! Go for it :D
Fancy, a safeguarding case against the hospital!
Well done, not just for mum but all the others who have no relative to fight their corner.
Rosemary_1706 wrote:
Wed Apr 25, 2018 8:12 pm
My main question is , does having a palliative care nurse mean you should not be treated in hospital? You should only be seen by your general practitioner? Is this another way to free up those acute care hospital beds?
As covered in earlier post, no.

Palliative team's role is about symptom management (trying to allow the person to maintain their day to day life for as long as possible)
Planning for management of long term conditions where it is known a deterioration is highly likely (trying to stave it off)
And ultimately comfort/dignity when health worsens and begins to head towards end of life.

The environment this is done in is irrelevant because no two people are the same.
Some will be treated in the community (at home), some in hospital, some in residential/nursing care or respite venues.

It would be a different story if this were a case of the patient + family agreeing with the consultant in supporting the loved one outside of a hospital environment. For example with one of my caree's (under palliative team) this is actually the case, where I have widespread acknowledgement within the medical community that this person is high flight risk for neglect in hospital due to the highly complex nature of their needs (to where I have received some additional medical training to help maintain care at home because the circumstances are unique in many ways)

On that basis the hospital (at least the local one) knows at least by this point it is usually a matter of urgency if we show up and not to muck about.. although we do get massive problems with weekend admissions due to most of the specialists being off and those in their place (which is why after years of this back/forth having a somewhat broad skillset I also turn up "armed" legally, too)

If you don't feel you are adequately provided for in keeping your loved one comfortable/well at home then the consultant needs to stop passing you off and do their job. I would keep bringing them in because eventually they will get fed up and realize they need to get off their backside and follow the correct procedure instead of just hoping the worst happens which IMO is what they are aiming for with each discharge because I have seen it go on.

At the end of the day they are people too and will have family, many wouldn't for a second allow it to happen to their own, so what makes them think its acceptable it happen to anybody elses.
Linda, one hospital doctor, after I'd made my request for fast track CHC, described my mother as very frail. I never did get a formal denial - no response at all. I think that the hospital using the term 'Frail' justifies, in its mind, transfer from national health services to community social services.

Mum's severe abdominal pain is being ascribed by doctor to severe constipation, rather than uterine cancer. Of course the pain relief recommended by palliative care nurse is known to cause constipation! Doctor put mum on meds upon mum's request but mum can't actually get nurse's attention to request them. Neighboring patient said she'd pressed her buzzer to get nurse for mum during night. Mum now has a pain patch.

I can't help but feel the nurses ought to have monitored mum's bowel movements, or lack thereof, and dosed her up with laxatives before severe compaction set in. That's what The carers and I do at home.

The ward bay is directly across from a bag that has become a 'cohort' bay. This designation orders ward staff to supervise the patients and confine them to the bay. Thursday night one of those patients wandered into mum's bay and asked the neighboring patient to mum to go shopping. I already complained last year of people with dementia approaching my mother, assaulting a nurse and abusing another patient and touching mum's bedding and taking belongings. Seems like staff in this ward are not properly supervising their patients again.

The sooner mum is transferred the better.
Hi Rosemary, I think the idea of people dying at home sounds good in theory, but I'm worried in my Husband's case what he is expected to die of. If he is struggling to breathe it would be much kinder for us both for Husband to be in hospital, and I would call an ambulance if that happens, and also if he has chest infection that requires IV antibiotics. I just can't see in his case why he is considered frail and indeed why palliative care is being mentioned now, but GP said might be helpful to me?
I hope your Mum's pain is under control now, we keep being told pain should be able to be managed, that doesn't work in Husband's case and it seems not for your Mum.
Best wishes