Urgent advice is needed for our elderly mum with COPD placed on end of life meds

[BatFinkRises]

Urgent advice is needed, especially independent medical advice, and legal regarding our elderly mum.

Our mum has just turned 80 and has had COPD around 10 years, as well as asthma breathing related issues since giving up smoking around 1993.
She also has mild glaucoma, diabetes and mild dementia caused by a series of mini strokes these last few years.
Her health has deteriorated imho possibly as a result of the covid vaccine and one boaster shot this last 18 months.
She very nearly died after the first covid vaccine.
I am very much well aware of the VARS and Yellow card statistics and follow UK Column, The Corbett Report, etc. and other independent media for many years.

Certainly she has lost a a lot of weight this last 18 months and has not been in great shape having being admitted into hospital for either low oxygen levels or respiratory infections quite a few times.
She has been on oxygen these last 2 years or so.
She is currently being looked after at home by various state carers and my sibling when home.

Around a week ago she was admitted again via ambulance to a HDU, high dependency unit.
I was constantly told via my sister that she is at deaths door. Turns out this is not the case, certainly a corrupt version of the truth.

Upon discharge my sister discovered that without permission from anyone including my mum, sister and other family, that my mum has been put on end of life treatment drugs, including morphine sulphate, haloperidol, midazolam, glycopyrronaium bromide, lorazapam.
My sister was shocked but even more shocked when I told her what all these drugs do and are intended for.
Bear in mind our mum has never suffered any form of psychosis ever.

When one of the nurses caught my sister reading my mums chart the day she was being discharged, the nurse literally angrily snatched it out of her hands and told her it was confidental.
My sister explained that now she understands every time they told her she was dying she realised our mum had simply been heavly sedated.
If there is nothing to hide why snatch away such information and with such anger?

My understanding from UK Column and other such independant media that there is something awry in the NHS regarding elderly persons.
It seems that upon being admitted to hospital this time, someone made the decision of a course of action that what amounts to a planned euthanasia of our mum.

She has only been home now for 2 and 1/2 days.
While there is a district nurse attending daily to adminster some of these end of life drugs it seems our mum has started to withdraw causing a state of hysteria, mass confusion, panic to the point of screaming, and screaming ‘please help me, ‘please help me, ‘please help me, ‘.

She has been grabbing onto things and lashing out with them such as her oxygen tube.
None of this has ever happened before and is clearly a result of the combination of all these very powerful drugs, or her withdrawing from them.
My sister said it is like a psychosis, albeit one caused by these drugs, or the withdrawel from them.
Apparently also since coming home she has refused to eat a single meal and is not talking, that is not communacatiing at all.
All of this is extermely distressing for everyone especially our mum.

I am of the mind that we need to safely, medically start a plan to withdraw her from these end of life drugs to give a her a fighting chance in her last few years or even months as well as seeking alternative treatments, such as manuka honey, herb based etc which we have already been doing.
My understanding that aside that they have already induced panic, screaming and some form of psychosis that she would be better off without some if not all if them.

I am no medical expert though, neither is my sister and we are kind of at a loss of what to do.
Certainly I feel the haloperidol and midazolam, are most definiviely unecessary as until 2 days ago she has never had any form of psychosis, and the lorazapam in itself is already a very strong anti anxity medication.
Also if we decide to withdraw her from some or all of these new medications she has been on for only about 2 and 1/2 weeks, where do we stand legally?

What is the best thing to do?
What is the best course of action?

Btw IF your mum is really end of life, then ensure she is transferred to hospice care asap.
my experience is that hospital are terrible for that. O spice are much better set up to actually care for the dying.

What is the best course of action?

OP, the best course of action is to let the medical professions make your mum's death as gentle and kind as possible.

It's awful losing your mum, I know. It's heartbreaking and difficult to accept. You seem to me to be looking for reasons the doctors have messed things up (understandably) rather than face that she is dying and you need to say your goodbyes.

A gentle, peaceful death was the last thing I could do for my mum, sitting by her side as she passed and letting the medications take away distress and panic. It broke my heart but I knew it was the right thing for her.

Be kind to your mum and spend time with her. One day, some years from now, that memory will comfort you.

my view is the people who had reactions to the covid vaccine are the ones who would have dies sadly with covid, there will be a genetic mutation showing some of us are susceptible to covid in the future and the vaccines.

with respect I think you should keep those views to yourself. Because they do not reflect the reality of possible side effects due to vaccinations - any vaccination.

OP I am not a doctor
I had the opposite problem with my dad - they refused to admit he was end of life. I suspect they might have been trying to avoid the situation you now find yourself in.

So I have some understanding as I spent months with him on the ward.

I agree with your sister that her current responses are likely be withdrawal.

Have all these drugs been withdrawn suddenly? It might be best for her to be on a low dose of one sedative, but just one. The cocktails they give are strange, often the doctors can't agree on the mix.

Is there any one doctor who you found most approachable who might be able to give you advice?

they really tried their best for dad but sometimes there's a bit of input missing if the patient can't communicate.

Would hospice at home be better? I am sorry if you included that info and I missed it.

I am so sorry you are all going through this.

PS don't worry about the not eating. Even if you're ill at a young age, you often can't do food because your body has so much stuff to do.

if you can get her to have a yogurt drink or something, that might be as much as she can manage. Gently ask if she wants food and accept her answer.

I am no medical expert though, neither is my sister

OP, kindly, this is the most important thing you have written. You need to trust the real medical professionals, they do know what they are doing. This isn't a case of the NHS trying to euthanise your mother. She just needs you to be with her, be calm and reassure her in her final days.

You are behaving irrationally and slightly hysterically. Maybe you could do with speaking with your GP about this as well.

You need to talk to her doctor and get her/him to explain the reason for the meds and the dying pathway. Say that you feel she isn’t at that stage yet, and ask for an explanation. When my mother was dying I found being frank and straightforward with medics and caters was helpful in that they then responded in kind, and I was able to make decisions based on that plus my own feelings about what my mother would want.

@BatFinkRises I’m sorry for everything you’re going through. You won’t get the response you need from MN as most people won’t understand what you’re going through. As @spidersenses says, occasionally the NHS or medical professionals gets it wrong.

I’m not sure why everyone keeps saying your sister didn’t have a right to look at your mum’s notes. As she has POA, from the gov.uk website: An attorney holding a Lasting Power of Attorney (either Property and Affairs or Health and Welfare) (LPA) or a court-appointed deputy should be able to access relevant medical records of the vulnerable adult.

Having lost my own parents, I would just say, continue fighting if that helps you cope but do try to spend as much time with your mum as possible.

My thoughts are with you and your family.

give a her a fighting chance in her last few years or even months as well as seeking alternative treatments, such as manuka honey, herb based etc which we have already been doing.

They didn't work, not how you probably hoped. You've been doing all that already, I imagine for years. May have bought her a little time but nothing can buy her forever.

There's a lady on Instagram called Hospice Nurse Julie. She uses her account to explain the end of life process. Try messaging her. She seems very responsive and she should be able to tell you whether your mum is experiencing end of life symptoms as she's a specialist. Her posts are really useful too, try watching them (they are all about a minute long). I'm sorry you are going through this. It sounds awful X

@Anewuser the key word is relevant. Patients are not allowed to access their own notes without an application process. However the POA can access discharge letters, shared care plans etc as if they were the patient.

Fwiw we’ve been going through something similar when my FIL died this year.

We’ve found that, with the nhs stretched to its limits, decisions were not always done to his best interest. The situation was different - they kept trying to propose protocols to treat X, Y and Z when he should have been on EOL pathway (think a physio coming to make him walk so he could go back home when he was less than a week away from dying…).
There was no communication with my MIL (let alone his dcs!). Which made everything much much harder for everyone, incl the fact no one was ‘ready’ for him to go.

The good thing is that you are now involved so you can go back to whoever is responsible for his care just now. Is it his GP (I assume) or the hospice? Someone else? Talk to the doctor involved in her care. Ask questions, as many as necessary so you can get a much clearer idea of what’s going on. Do it with your sister and someone else (your DH maybe) that can be there to just listen and take notes. It can be very hard to remember everything in this circumstances. So having someone you can go through the info afterwards is essential.

Last thing. Because if my experience, I tend to think you are probably right something is amiss. But whatever the situation, it’s worth remembering that the first thing that should happen is to make your mum confortable.

((hugs)). It’s a very hard lace to be in.

Errr…. Patients have the right to access to all of their notes!!
there is no relevant bit. Why should there be?

and it has no relevance with looking at your notes at the end of the bed. I certainly would loom at mine and would strongly query why it is an issue!

Does this only apply when the parient has lost capacity. This lady would have gone home with a discharge letter and hopefully referred to the community palliative team, the district nurse is giving her medication so it might be a good idea to speak to her g.p and the palliative team to discuss her plan of care.

As far as I know, and while I’m not an expert I’ve worked in healthcare for over a decade, any patient can apply for access to their medical notes, but nobody can just walk into their GP surgery and ask for a quick look. In theory, they belong to the NHS, and again I think it applies as a blanket rule so medical professionals can communicate their intentions clearly to each other without fear of reproach, even if there is differences of opinion with patient etc. I actually know somebody who was demoted for looking up their own blood results. I don’t make up the rules, but looking up the Caldecott principles might be able to explain more clearly.

What do you mean about 'giving your sister access'?

Speak to your GP/palliative care team. That would be your best course of action.

IMO it's much more likely to be delirium than psychosis....

Your mum sounds like she's dying but I can understand why that's difficult to accept. The meds your mum is being given are to help with pain, nausea and agitation. They're generally given at quite low doses to avoid over medicating.

I have had relatives before refuse these meds for their loved ones and insist on natural remedies and it always ends badly for the patient 😢

Speak to the nurses and Drs and try to really listen to what they're telling you.

Can you speak to the medical staff who looked after her in hospital? Or to her GP?

Things like haloperidol are used for delirium (which can present with confusion, hallucinations, paranoid ideas of being in danger). Delirium has many causes ( low oxygen levels are one) and is common in HDU patients and can take some time to settle.

It would probably be helpful to discuss your concerns with medical staff who know her case as that may allay some of your worries.

I'm sorry you are going through this

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Have you considered the possibility that the reason your mum wasn't behaving like this in hospital is because she was then receiving the appropriate medication?

Do you have a health power of attorney to make decisions for her? If so, the doctors need to listen to you but if not you cannot enforce any change.

I'm sorry you are going through this.

As a paramedic (we are trained in EoLC), I will echo other posters in saying that it is far more of a problem getting patients who desperetly need to be on an EoLC pathway started on it, than patients being put on it inappropiratly (can't think of a single case).

Patients who should be EoLC but are not started on that pathway soon enough are to ones that receive substandard care, long unnecessary waits on ambulances (when they should be tucked up in bed at home) and a less peaceful and dignified death.

Your Mum is 80 with a Chronic condition and a gradual deterioation in her condition with increasingly frequent hospital visits and weight loss, she is dying, this is a Normal thing. I think you need to let the medical staff do their jobs without putting barriers in their way, and seek help for yourself in handling your Mothers passing.

my mum died last year and I think she was badly let down by the hospital. The discharge was badly organised and no one seemed to talk to each other or know what was going on. What we did, which really helped, was insist on a home visit from her GP. It took persistence to get the visit but once the GP was engaged we then had calmness and clarity as she was very caring and explained things to us. So my advice OP, if you haven’t already, is to get your mum’s GP to visit. Hopefully it will help you as it helped us understand and come to terms with what was happening. It should be part of discharge but wasn’t for us and sounds like it hasn’t been for you either.