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?

Hospice nursing assistant here. Your mum very much sounds like she is at the end of her life.

morphine sulphate, - will ensure she is not in pain, particularly pains that she is unable to verbalise.
haloperidol, - can be used as an anti-sickness, and also to prevent or ease agitation.
midazolam, - this will also help calm her down and help her to feel settled and less agitated.
glycopyrronaium bromide, - for build up of secretions
lorazapam.- again another medication to ease her agitation.

From what you've written she sounds like she is at the end of her life, and from the level of agitation you've described it sounds like the doctors are making the decisions for what's in her best interest.
Whether you agree with them or not.

I'd also say that we wouldn't normally allow relatives to just thumb through medical charts as things can be easily misconstrued by someone who doesn't fully understand the chart. For example, the amounts of each medication being administered or what the meds are for.

I'd strongly recommend actually speaking to the medical professionals involved in your mum's care so that you can understand properly what's happening. Also do you have hospice team involvement? I think you as a family would benefit from emotional and bereavement support.

1. Contact PALS if you seriously think a mistake has been made by putting her on EOL care, and/or you want to complain about the communication.
2. Your sister did not have the write to review your mums notes and the nurse was right to remove them.
3. The covid job had nothing to do with this.
4. Herbs won't helps
5. I'm sorry for this distressing situation but it really sounds like your DM is at the EOL and removing her meds would be unforgivable, and I don't know where you stand legally.

The right*

Thank you for all your replies. <3

There is a heck of alot to consider.

We are all exhausted so I will re read this tomorrow and reply if needed. I am also going to give my sister access as she is the one whom has power of attorney. Ultimately we just want what is best for our mum but just need to make sure the correct decisions have been made.

No one is infallible and the NHS does have a history of making huge mistakes particularly when it comes to elderly care. Watch / read UK column for a more independant outlook on the current state of the UK and the NHS if interested. Mass media will not tell you the full truth especially these days.

TY

Where have you got the diagnosis Physcosis from?? That's a serious condition and it's not easy to diagnose my nana has it and its very complex. I can have full conversation with my nan.... some things are fine and then other things are wayyyy off but I float along as I know her little ways.

I don't think MN can comment on EOL it's unclear. Can you visit your mum and ask the district nurse what's going on?

All I have to add is that EOL is an unknown time line some people go rather quickly and others fight it. I have also seen EOL been reversed but only once!

Your mum is 80 , with multiple health issues and on long term oxygen yet still requires frequent admissions to hospital - most people reading that will say that she is coming to the end of her life and the medications prescribed will certainly make that easier for her . I appreciate its very hard to think you are losing a loved one but you do sound a bit like a conspiracy theorist and I think you need to speak to your mums GP about the best course of action for her .

You or your sister (whoever is your mum's next of kin) need to speak to the healthcare professionals looking after your mum and get them to explain her medications and why they have been prescribed.

Gently, what makes you think your mum is not at the end of her life? She is elderly and in poor health - sounds like she has end stage COPD and the people looking after her are trying to make her more comfortable. The nurse was right - patient notes are confidential, not for family members to read through. Particularly if your mum can't consent.

TY

I think it would be best if you phoned the GP and asked for a home visit to assess Mum and explain the interventions and decisions that were made in hospital and how this led to her being deemed to be at the end of her life. Once this has been explained, you could then clarify the plan moving forwards to ensure your mum is comfortable.
From her past medical history I would gently suggest that it is more than likely that your mum is reaching the end of her life, and some of the symptoms you describe as being side effects from the medication are commonly seen as someone approaches the end of their life such as lack of appetite and the agitation you are witnessing. The medications you describe as being used for psychosis are in fact used to reduce any distressing hallucinations or agitation.
Do you have a hospice team in your area that you can ask the GP to refer to for support? They are usually very good at supporting holistic care and will be able to answer many of your questions.

OP, you need to speak yourself with those who are caring for your mum honestly about this. It sounds like she needs those drugs- have you not thought that when she withdraws off and screams that's because she IS agitated or hallucinating, which are things that happen at this stage? I have seen two people in the past two years go down this path, and the type of things that happen in the terminal stages (which can take a long time) are agitation, restlessness, hallucinations or delusions (esp if the person has dementia or brain injury) and increased pain. People can still have good moments, though, I've seen people in hospice eat well and be laughing and joking, then die the next day, it's the ups and downs of terminality which can take months, not necessarily days.

I cannot tell you anything really, you need to speak to the dr or nurse in charge, I don't think the NHS will be wasting a district nurse once or twice a day at home for your mum if she didn't need it as this is extremely expensive. All I can say is I've told my children I want ALL the drugs, honey is powerless against the pain and agitation of this stage.

If she is not at that stage, then she will carry on living! This is very distressing for you, and clearly you are not perhaps imagining your mum to be as ill as she really is- dementia patients often go downhill rather quickly at one point having jogged along for a good while. I have a friend whose mum was quite well at the start of covid and had died by the end of covid of her dementia- this is not to say your mum wasn't worsened by the vaccines, who knows, perhaps she was, but nothing you are stating sounds atypical or weird given your mums pre-existing health conditions.

This is a very hard time, hugs to you and I hope you can find some answers and some peace.

She's 80.
Has had mini strokes
Has lost lots of weight
Has been oxygen dependent for 2 years.
Is distressed
Not eating
Not talking.

She has been prescribed these medications to help her, not harm her.

I have just said a final goodbye to a loved one and was grateful when we finally got these medications prescribed.

My mum was 72, no health conditions except dementia. She was fine, and then she got a chest infection
That didn't respond to meds and she got sepsis and she died 2 days later on EOL care drugs

What I'm saying is it happens - it was 5 days from my mum being "ok" to dying. We withdrew treatment and she had EOL drugs and it was very peaceful

Gently, is it in her best interests to aggressively treat all her health conditions to extend her life for weeks, maybe months? Quality of life, not quantity

TY

From what you have written your mum has been having a lot of care to deal with a variety of illnesses for a number of years , both from hospital doctors and careers coming to her at home. Why do you think they have suddenly started making the wrong decisions for her?

Also UK Column is not a source of genuine information.

Having looked it up, it's described as a source of anti-Brexit, anti-climate change conspiracies. The first hit I had related to health showed it had been publishing false claims about Do Not Resuscitate decisions.

Having a look at it's health page, the claims it makes about healthcare are jawdroppingly inaccurate.

Please speak to the real life professionals looking after your mum, not a conspiracy website.

The nurse was correct not to let your sister read the notes - just because your mother is elderly and has mild dementia, patient confidentiality and dignity are still important. Your sister can apply through the correct channels if she wants to read her medical notes or arrange a meeting with staff but can’t just read them on the ward.
From what you’ve written the most likely explanation from her medical history and behaviour is that she is approaching the end of life. It’s notoriously difficult for doctors to predict an accurate time frame, but the signs are often quite apparent. The medications are usually prescribed ‘as needed’ initially - it’s not clear how much of which she has actually been needing. Any drugs can have side effects but the ones you mention are invaluable in end of life care, especially with respiratory problems.
You really need to speak with the GP or palliative team about your Mums particular case. In the kindest way possible no type of honey is going to make her lungs work better, or ease her passing when the time comes.

Your mum sounds very much like she is EOL and you sound in denial and paranoid tbh, I would focus on spending time with your mum rather than going on a witch hunt and accusing the NHS of trying to murder her.

You're still not listening, and to be honest, tomorrow might be too late. You sound deep in denial and are clutching at straws. It reminds me slightly of the Archie Battersbee case. People are trying to help her, let them.

I feel like you are looking for a conspiricy that really isn't there.

Please listen to all the good advice you have been given and accept that your mum needs help towards the end of her life.

When my mum was admitted to hospital for the last time she literally begged them to put her on end of life care instead of trying in vain to keep her going with zero quality of life. She was completely well mentally but physically in a dreadful way. She was very lucky to see a palliative care consultant who listened to her and made her last days comfortable.

Your mum's quality of life sounds awful. Speak to the doctors and trust their professionalism.

With regards to the pulling at the mask and the restlessness, unfortunately dying isn't always peaceful. That's just how it's always portrayed in the media you say you don't trust.

My best advice would be to question everything. I'm currently fighting for my father's care. Don't presume the doctors and nurses know best EVER. Yes listen to their medical knowledge, but push and push and push for what you think is right. There is too much passivity around with the "doctors and nurses know best" attitude. My dad is currently dying due to NHS negligence, but this is where we are now. Now that we are here his pain is also being managed badly. It's horrific to witness and I'm coming up against brick walls of medically trained robots in an attempt to try to get him the relief he needs. His screaming when he's moved can be heard 2 large hospital rooms away with the doors closed. It's barbaric. Sometimes only PALS can help. It's a shame it has to come to this, but if you feel something is wrong and your instincts are telling you so, speak to them. Also, even if your mother is coming towards the end of her life, communication is really poor. Speak to them direct - you need more information direct from them. It's hard to get joined up into out of hospitals - you tend to get bits of info each time - but push.

Does anyone has a power of attorney?
and has anyone ever talked about end of life care with your mum? Is it possible that she has but hasn’t told you?

i get the nurse reaction. Whatever your mum’s health situation, she has the right to confidentiality, unless she as agreed to share that info with you/your sister.

id start with having a chat with her gp and take it from there.

In the nicest possible way, it does not sound like your mother has years left and that the diagnosis is right. People can’t diagnose on the internet, so ask to speak to her GP or the palliative care team.
the nurse was right in the ward ti stop your sister reading your mothers chart, it is private medical information even if only drugs and blood pressure reading, they would have to confirm through documents on the power of attorney. And also power of attorney only kicks in if someone no longer has medical capacity and is judged to be so, so if you think your mothers condition is so advanced yous sister has to take over medical decisions then also she is honestly bearing end of life and I am very sorry for that.
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. Also people getting other respiratory diseases from sitting in a waiting room with others etc.