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Hospital treatment under palliative care? - Carers UK Forum

Hospital treatment under palliative care?

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My 95year old Mum has recently been in and out of hospital with chest and bladder infections .She was sent home prematurely and was readmitted the next day. In fact her doctor called for the ambulance. Mum has a palliative care nurse but she hasn't played an active role so far. The latest hospital consultant spoke to me about mum's four admissions in the last month. He has put in a formal complaint about the latest discharge. He said because mum has palliative care, she should be treated at home by her general practitioner and the palliative care nurse. I told the consultant that mum was resistant to most antibiotics and she normally was given IV antibiotics (and fluids) and I understood the district nurses didn't administer those at home. (The district nurses do catheter care and care of The hospital acquired bedsores.)

The consultant has said I ought not call for an ambulance for mum to go to hospital again! So when mum does come home she will inevitably come down with another infection that will require intravenous antibiotics, who cares for her?. Does being on palliative care disqualify you from hospital care? The general practitioner arranged for the palliative care nurse and also for the ambulance ride to a&e.

I'm confused. Comments welcomed!
Tell the consultant that it's HIS job to sort out NHS Continuing Healthcare, not yours!
Hi Rosemary
It is very difficult at that sort of stage, I had similar issues with Dad in his last year. He had Antibiotics for nearly 6 months none stop and then 5 weeks in hospital on IV ABs. The hospital said when they discharged him they would not be giving any more fluids or ABs by IV and was discharged with an AND - Allow Natural death form. Later in the year I think he was readmitted twice more and thrown out again asap. The third and last time he was admitted he was discharged with the comment "Inadequate care" so I was hopping mad, he passed away a couple of months or so later. At the same time,no one would comit themselves to telling me that dad was EOL even though I knew he was. I think that is just so no one has to pay CHC. The only people who accepted what I was saying in the end was the care home where he spent his last 3 weeks and I had to sign to say no further intervention .
It is an apalling maze to work through , and very much a case of pass the buck, not at my expense.
yes bb. This is the consultant who told me mum should have CHC but now says mum has mostly social needs.

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?

Any thoughts Chris ftg?
Oh Henrietta, so sorry you had that experience. It sounds like it's happening to me now.The consultant indicated mum had about 3 months. The occupational therapist today said the hospital would send mum home with palliative care package. Other times it's been with a 'discharge to access' or continuation of her existing care arrangements. I've never heard of the 'natural death' note you spoke of. I suppose one wouldn't normally hear of such things. You have been so helpful, as have others here. Where else can you find out the methods the national health service uses? It is not going to tell you!I
My understanding, from the time when my husband was sent home for hospice-at-home end stage care was that IF anything at all is administered IV, there HAS to be a nurse present while the drip is going in. They can't set it up and then scarper!

My husband had sub-cutaneous meds, via a needle left under his skin on his arm, taped on, going back to a small box, the syringe driver, that held the vial of meds. From time to time the nurse coming in each day would replace the empty vial with a full one,

I'm wondering whether something like a syringe driver to administer AB (but it can't do mass fluids, ie, to keep them hydrated) might be possible for your mum?

Rosemary, reading between the lines it sounds like they are 'expecting' your mum to reach the end of her life without going back into hospital. I know this is 'grim' (to say the least....), but, since the end MUST come at some point, would you not want it to happen AT HOME, so your mum is with you, and not in a hospital ward.....?

Is it not 'plaguing' her to be admitting her, and re-admitting her endlessly?

I do feel for you - how can we, their children, ever say, or even admit 'the end is coming'.....especially if we have fought valiantly to get them all the treatment they've needed, for so long.

But sometimes, perhaps, we need to be 'given permission' (or, in the case of her hospital consultant, almost an 'order') to 'let them go in Nature's own time'.......

Sometimes, that decision has to come from 'someone else' - WE are not emotionally capable of doing so, nor should we.

For many months after my husband's death from cancer in middle age I railed and railed (mentally) against the doctors who had 'let him die' - felt they should have done more than they did, that they 'gave up on him'.....it took me a LONG time to accept that there was actually nothing they could have done that they did not......

I did finally make my peace with what happened, and I wonder whether that might be so with you in respect of your mother, if that should be the situation.....

I do wish you all the strength you need now, and hope you find the comfort and consolation that will make this time just a little, little less grievous for you....

Kindest wishes, Jny
Jenny, Thank you. Yes, I wish she would die. I would prefer that it be at home. We've been talking death since last May. The issue to me has been that infections are treatable. I haven't thought that the hospital would send mum home to die of an infection without treating it. The treatments that have relieved the condition have been intravenous antibiotics and fluids because when mum gets sick she normally doesn't drink and becomes dehydrated. If I would not have called for an ambulance and mum would have become more dehydrated then the district nurses, or hospital staff when she would have been admitted to hospital, could have easily accused me of not properly caring for her and initiated a safeguarding case against me!! I have sensed from nurses comments that they may attribute blame to me that mum has become a little dehydrated. Some nurses are quick to point the finger at anyone but themselves.

I've thought it in mum's best interest to go to hospital for stronger antibiotics and fluids. This is what I've done and nobody has ever said it was the wrong thing for me to be doing until last Friday, after mum's own doctor volunteered to call the ambulance after I had described mum's condition to him over the phone!

I'm being realistic in my expectations whilst wanting to make sure I don't get accused of not properly caring for mum.

It seems like the general practitioner, the palliative care nurse or the hospital should explain the ramifications of palliative care and not 'pussyfoot' around the issue and then accuse me of not doing mum any good by having her admitted when her health declines.

If mum does get discharged with an allow natural death form, as Henrietta described happened with her dad then good. Of course then I'll want to discuss exactly what a 'natural death's is because I doubt if any medic will have explained that in plain English!!

Enough caring for today. I'm off to find out from you tube what damage Trump has been causing today!!!!
Hello Rosemary, the same thing is happening with my 84 year Husband, he is in a wheelchair and has copd among other things and gets many chest/urine infections that have required IV antibiotics in hospital. When we last saw GP she said can't really do much more for him in hospital, was really end of life care now, so try and keep him out of hospital. I can see that would be best for all as nobody wants to be in hospital. So now seeing GP every two weeks and have referral for palliative care nurse. This though puts more pressure on me as carer, especially as my Husbands breathing is rapidly declining. I think it is about money really, and also not tying up the hospital beds. My Husband is classed as extremely frail, he weighs 14.5 stone and has very good appetite?, not frail as I would imagine. It's a strange situation to be in.
Best Wishes
Back again. Perhaps this might be better as a separate post but I'll start my question here. On searching for 'allow natural death' I came across comparisons between AND and DNR. As I understand a do not resuscitate form is something the individual requests be drafted. It sounds as if it is the hospital that initiates an AND form without explicit consent from the patient. That is, the hospital declares a patient be discharged and be effectively ordered to die naturally without life extending treatment. Is this correct? So who actually makes the decision and what input does the patient have?

Mum wishes she would die but this is the first time I've ever heard about the national health service ordering natural deaths!
Rosemary_1706 wrote:
Wed Apr 25, 2018 4:14 pm
Does being on palliative care disqualify you from hospital care?
Palliative care is about symptom management (pain etc), making the patient as comfortable as possible allowing them to maintain their dignity and generally allowing you to live as normal life as possible until you die.
The prognosis is irrelevant, it can be days, weeks, months, years, etc as it covers people with long term degenerative illness as well as those with short term conditions.

Its not one shoe size fits all, some people can be treated at home, some at hospital, some in a nursing environment, some at a respite venue etc.. the consultant should know better than he is letting on about this and the attitude shown to you is not only disgusting but could actually potentially leave you at a liability of neglect if you actually did as they instructed.

He or she feels that strongly about it they should put their money where their mouth is and put it in writing When that consultant screws up the hospital will stand by them legally, but who will stand by you?

As for the palliative team the nurse (and overseeing doctor) should be involved, there should be a review with various professionals involved and clear planning for which directions to take in the case of certain events.

If you've not already covered this things like DNACPR, care plans, advanced treatment in the event of EOL (significant deterioration signalling imminent end of life) should all be sorted out as soon as possible.

I understand how stressful a time this must be having experienced similar myself and wish you the best in these difficult times.

Just thought I'd mention, a DNACPR (do not resuscitate order) means just that, to not attempt cardio pulmonary resuscitation on that person, it generally does not tend to mean do nothing else besides (unless specified through advanced treatment plans), even the medical community often appear to need a reminder of the fact.