Can an Attorney ask a care home staff to not provide nutritional shakes/fluids for an end of life patient?

[zippyswife]

MIL is in a care home. She is on a gold framework end of life care plan put in place by her GP. She has been in hospital, come out, not regained movement in her legs and is bed ridden and incontinent. She has advanced vascular Dementia and often very confused and distressed, living an internal nightmare of having ‘lost her child’. She is unable to swallow food or take medication orally. We have been told that she has hours/days and this is the dying stage. My husband has power of attorney for health.

MIL before dementia was a very strong and proud woman. She would be appalled at her current situation and would want to be removed from it as quickly as possible. Having seen her family suffer dementia, she was clear and blunt on her wishes if in similar situation.

She is in a nursing care home, and has a ‘Respect Form’ that she should not be returned to hospital, receiving care in the home. The home and staff, however well intended, are regularly giving her liquid based nutritional shakes/additive, soup and porridge. She needs assistance to take in any fluids, sometime the shakes etc are delivered with persistence that she would not want, but is not able to communicate.

The use of the nutritional drinks is prolonging her physical ‘end of Life’ and causing her mental distress in a way she would never have ever wanted. The most dignified and respectful thing she would want is to be left for nature to take its course, whilst of course bieng hydrated (with water/juice) and loved.

Do others have experience of this. Can husband acting as attorney decline nutritional drinks and additives on her behalf?

Has your MiL left any expression of wish?
My mother had instructions in place to say that if she was at end of life she wanted DNR, she wanted no food or water, just pain relief. These instructions were also lodged with her GP.

@Hadalifeonce No- not that I’m aware of. Only verbally with DH. Nothing in writing to my knowledge sadly.

Sorry to hear about your MIL.

Has she had her swallow assessed by a Speech and Language Therapist?

If she's imminently end of life it's unusual that care staff would be giving her nutrition...but keeping her mouth moist and hydrated for comfort. If it's any reassurance with dementia and approaching end of life it's very unlikely she will be experiencing feelings of hunger or thirst.

Its definitely worth your husband discussing with GP and care home manager. I'm not 100% sure if he can request they stop.

Sorry to clarify - he can obviously request they stop but I'm not sure as POA if he has the overall authority but a discussion with GP and care home to discuss what is in her best interests would be appropriate.

Hope that helps x

Yes he can absolutely point out that knowing his Mum, she would not want her life prolonging at this stage and would not choose to take the supplements

The whole point of having LPA for Health/ Welfare is so he can advocate for her

I would suggest your DH phones his Mum's GP practice and asks to speak to whichever clinician tends to deal with the residents in this care home

How end of life is she? Is she on end of life medication?

My mother (advanced dementia) had an "end of life" period just over a year ago. She got a chest infection from aspirating food and was losing her swallow. We were told she was end of life. She had mouth care only. But, after a few days of us praying she would die (because her life was a living hell), she started trying to eat toothpaste when the carers were brushing her teeth etc, and was clearly hungry, so the care home staff started giving her nutritional drinks, Ready Brek etc which she wolfed down. It was a complete emotional rollercoaster and a total headfuck for us. We'd gone from trying to think about funeral arrangements to accepting she may just keep plodding on. The staff were sweet but explained they had to feed her.

Anyhow, thankfully, she died a few months later, quite suddenly.

One point to note - if she has been told she's end of life, she should receive Continuing Health Care immediately. No-one told us this, so my mother continued to pay out thousands for her care for another 4 months until she died. So do raise this and try and get CHC so that she doesn't have to pay anything to her care.

"sometime the shakes etc are delivered with persistence that she would not want"

His responsibility is to make decisions in his mum's best interests, and coercing her into eating when she is end of life and refusing food is surely not in her best interests at all. Is there no Respect form etc? What have the care home staff said about this? Has he spoken to the manager? At this stage surely it's all about her comfort and peace. If you can't get any sense out of the care home then speak to the home's GP.

This is something very close to home so apologies if I upset anyone.
My stepfather (DSF) who had Parkinson’s and Dementia was in a care home. He ended up in hospital 3 weeks ago with an infection. He was put on antibiotic drips and fluids via a cannula. He was very poorly and semi conscious so could not eat / drink / swallow. After 10 days his infection cleared up but it was determined by the consultant that it had impacted him so badly that he was put on an end of life pathway - in my area it’s called a statement of intent.
It meant that they believed he would die within hours / days so all active treatment was withdrawn. This included IV fluids. He returned to his care home where it was very clear that he was actively dying. It took 6 days, fortunately he was unconscious during this time. Giving him any food / fluids would have just prolonged the inevitable. Carers just kept him comfortable, they moistened his mouth hourly. Honestly it was pretty awful to witness.
I would ask your DH to ask to see the documentation the GP has completed - it should state if all nutrition is to be withdrawn. If it does, then the staff are making a huge error by trying to give her food and drink. However, having LPOA for health doesn’t override a decision that a doctor may make to give nutrition at end of life. he can advocate for any decisions she made on her LP application form but if she didn’t detail this then it doesn’t help.

@DappledOliveGroves my DSF had been a partial funder but the hospital discharge team told me all his care home fees would be paid from the day he was admitted to hospital. I didn’t have to complete anything.

Consult with her GP as LPA - with Health LPA it can be the PA that has the say or medical staff - if they are both recommending it can't be ignored. THe decision is usually made in consultation with family members etc.

For keeping the mouth clean and fresh we were advised pineapple juice - just apply with a cotton bud, keep the teeth and tongue clean with gentle motion - it can "plaque! up and be quite dreadful. Often patients get almost a kind of lockjaw so it can be tricky. It is normal to stop all by mouth when you are in that final care path as otherwise you can aspirate and liquid or food goes on the lungs and you end up dying of pneumonia. It ca still take a few weeks as well.

It is a truly difficult time, thoughts are with you all

I'm a care home manager, you need to speak to her GP about end of life care, the nursing home staff and manager will give her nutritional supplements. The end of life care will include medication and guidance to staff re mouth care.

Sorry to hear about your mil. My dm expressed her wishes for DNR a few years before she passed. She had a lot of health issues. There was no POA, but the drs had this on file and she used to have a letter that she was DNR. She’d had enough of her health issues and wanted join df.
if mil was done and didn’t want this prolonged I’d be looking at the POA and see what can be done.

She is on a clear pathway fur end if life. Do you know what’s included? I would have expected things like withdrawing food and water to be included in it (as in when to do that etc….).
As your dh has POA, he is speaking for her.
He needs to check with the care home

• they know he has POA
• they’re aware of the pathway agreed with the GP
• Theyre following said pathway (he needs to ask them what’s in the doc and how they are implementing it)

Then he needs to see her GP and have a chat with him about the next steps. That will then be relayed to the care home. He needs to check information is flowing between them. The care home might feel they have to feed her if they don’t have the right paperwork to stop doing that iyswim.

Thanks all so much for your responses- I know this is all a very emotive subject and I appreciate you sharing your personal stories. DH’s head is all over the place and struggling to think clearly about what he can do so reading this certainly will help him.

Forgive me if I'm speaking out of turn, but if she has hours/days, I'm wondering if your DH or a sibling is not sitting with her? If a close relative is, then they can "help" give throw away the nutritional drinks, and let the carers move on to their next patient.

We had a close relative die recently, and they had the nutri carton of drink next to them and water etc., and it was us that helped with the water (they didn't want the nutri shake), and there was always someone sat with them, the carers only changed their adult nappy.

It doesn't sound right at all that the nutri shakes are being forced, so can the person witnessing this not just say "it's ok, I'll help mum with that, you can go to your next patient now".

Yes you absolutely can.

However as a Palliative Medicine consultant I have found it very difficult to get care homes to do it.

Generally they are very scared of CQC criticising them for not meeting nutritional needs and families accusing them of starving patients, sometimes even as in your case, the families are just asking for personalised decisions.

YES you can. It is very comforting to read @AnnaMagnani's post tbh. I'm a speech therapist who used to work in palliative care and the daughter of a woman who had a brain bleed three very long years ago. She had an Ensure opened and put on her table every day for two weeks. Luckily my mother was still feeding herself at that time and wouldn't touch the things, and it was a hospital so I was able to persuade the doctors it was nothing but waste, and they got taken off her prescription before she ever left hospital.

I'd try the GP. It wasnt until we were 'those relatives' and were so unpleasant and awful that the GP had a best interests meeting with us and the nurse in charge to shut us up, that we got something real put down. That was when we finally got antibiotics crossed off the PRN list. Make trouble if you have to. If only the obvious and sensible decisions to reduce years of misery could be done without a revolting fight.

There are no easy answers.
My elderly relative is on an oncology ward. He's bedbound. Can't speak much. Isn't eating. Isn't drinking.

But.
He's on a drip. With antibiotics.
On oxygen.
The latest - they're feeding him via an NG tube.

Now, he's not in any pain afaik.

But here's the thing. He is still in there. He has capacity. As does his wife, who has health LPA. I have health LPA too.

I might see if I can buttonhole one of his doctors (easier said than done) and say, "He was a big Dignity In Dying proponent, see what he wrote in his LPA, have you sat down with him and honestly asked him what he wants?"

Trouble is - we all know there's a chance - a tiny one maybe, but still - he might have some sort of recovery. So maybe he reckons, as long as I'm not in pain, I'll go with this and see ... And if so, fair enough.

Thanks all for your messages of support and advice. On the back of this DH spoke with the care home manager last night and they were very understanding, in agreement and they will cease giving her nutritional shakes etc. He sounded so relieved when I spoke to him.

@DappledOliveGroves that is interesting re the CHC- can he speak to the care home to initiate that? Or is that the GP? I don’t think he has the energy right now but if this was easy to initiate I think he should. She has been on end of life pathway for a month now and it was over a week ago they said she had final hours. She is immobile, not eating, distressed, incontinent etc.

I think this is unusual, the person may drink and not eat, so nutritional shakes feel like force feeding. Usually homes recognise the futility and cruelty of this. The person is not dying because they’ve stopped eating, they’ve stopped eating because they’re dying. It’s a normal part of end of life and wrong to prolong it. I don’t know where you stand legally but I would be very distressed if someone was doing this to my loved one. I am sorry.

The care home have done a u-turn over night and just phoned DH to say they need to always offer her the thickened drinks/shakes but she doesn’t need to accept. He is out of energy and battling this is something I know he doesn’t have the capacity for. It’s so wrong. Yesterday he witnessed a career ask her 3 times and she refused and said no each time but they continued to cajoule her.
Im not actually there as we live several hours away so I have the Dcs here while he is there with her.

I doubt very much a tiny amount of nutritional shake is keeping her alive OP.

I think it depends on what you mean by needing assistance to drink. If they are holding the drink to her lips and she is sipping and swallowing, even with encouragement, then to me that is correct. If she is distressed and they are forcing her that would be different.

My experience of end of life care where the patient's mouth is being moistened hourly is that this not only keeps their mouth comfortable but if they are well enough to swallow when they taste water, it is not witheld. It is not totally clear to me from your description that your MIL is at that stage, as much as we can all agree her mental state makes prolonging life feel cruel.

Glad I read this thread. I must speak to my mum about this, about her wishes.

Hope you can get this sorted op.

@zippyswife - I'm so sorry. It's such a horrible situation. If you can raise the CHC point with the GP and the care home (and potentially Local Authority if they are involved in any way in the funding too?). I don't know what happens, but it's supposed to be straightforward. I'm still so angry no-one told me and that my poor mother burned through another £16k in care home fees that she needn't have done.