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?

I don’t have time to reply properly but Midazolam and Haliperidol are used for sedation in EOL care as patients can become very distressed and restless, not for treating psychosis. Why do you think your mum isn’t at End of Life?

I think you need to speak to her team and get a very concise explanation of what these drugs are and why they are given.
Agitation and hallucination are EXTREMELY common at end of life- haloperidol and midazolam are usually used to control agitation.
The drugs that you’ve listed are a standard “As needed” prescription, meaning that they are often prescribed at the end of life, and only given as the patient needs them- given more regularly through a pump if the patient needs them
often.
Lorazepam is often prescribed for people with breathing difficulties, as anti-anxiety meds work very well when people are short of breath.
However, you must talk to your mum’s team - it’s important for everyone involved in her care to cooperate with each other- for her sake.

I’m sorry you’re mum is suffering like this. The end of life drugs will help her with the agitation she is clearly experiencing, and, gently, you need to realise that Manuka honey and herbs will not.

Let her have these medicines to ease her passing as prescribed by medical professionals. I can promise that they would want the same for their own relatives because it causes the patient to be relieved from a lot of pain and distress.

I used to work in a nursing home, and was horribly distressed hearing patients in their final days when families refused medication.

She's nearing the end, and deserves it to be as painless and peaceful as it can be. In the kindest way, this isn't about your needs - it's about hers.

More of a feeling that she is not at end of life and that the doctors are not correct and they are taking a best guestimate. I have worked with doctors before and know how they do sometimes make decisions often based on pure guesswork not facts.

Last time I was able to speak to her around 3 or 4 days ago she sounded strong. In the past she when fighting a chest infection has sounded much weaker.

Of most concern though is that since discharged 3 days ago she has refused a single meal, and has been experiencing some form of psychosis, screaming when awake, lashing out physically, and begging for help. She was not like this on the ward in hospital, nor was she like this 2/3 weeks prior to her being admitted or ever like this.

She is only like this since being put on all these new medications. She has also not spoken a word since being discharged apart from begging for help. Gut feeling, my intutition is telling me something about one or more of these new drugs is causing this.

My sister thinks that she is now withdrawing from one or some of them potentially causing this psychosis.

Manuka honey? Really? I've sat with my mother while she received EOL care, she was 57 years old. I was 28 and a baby really. The drugs for EOL care are to make the patient comfortable as they die. If you withdraw your mother from these drugs you will induce such withdrawal symptoms that you will almost certainly speed her death, not stave it off. Herbs and manuka honey cannot heal lungs that have given up. Please just be with your mother now as much as you can.

The symptoms that you are describing are exactly like my MIL had at the end of her life, personally I wouldnt be using my time trying to accuse the NHS of killing my mum but spend my time with her instead.

That's the thing. I am positive she is not nearing the end.

More of a feeling that she is not at end of life and that the doctors are not correct and they are taking a best guestimate.
I have worked with doctors before and know how they do sometimes make decisions often based on pure guesswork not facts.

Last time I was able to speak to her around 3 or 4 days ago she sounded strong.
In the past she when fighting a chest infection has sounded much weaker.

Of most concern though is that since discharged 3 days ago she has refused a single meal, and has been experiencing some form of psychosis, screaming when awake, lashing out physically, and begging for help.
She was not like this on the ward in hospital, nor was she like this 2/3 weeks prior to her being admitted or ever like this.

She is only like this since being put on all these new medications.
She has also not spoken a word since being discharged apart from begging for help.
Gut feeling, my intutition is telling me something about one or more of these new drugs is causing this.

My sister thinks that she is now withdrawing from one or some of them potentially causing this psychosis.

Agitation is a well documented thing that occurs at the end of life. My mum, who had been bedridden, literally jumped out of bed and started ranting and trying to ramble around the house, swearing at everyone. She died three days later.

With regards to my last post, I had read up on terminal restlessness and recognised it for what it was at the time. www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/symptom-control/agitation

I'm just saying here, but what if she has been placed on EOL meds incorrectly or mistakenly? She sounded so strong the other day. There are times when she has had chest infections in the past when she has sounded much worse. I have a strong intution that they have made the wrong decision or made it too quickly.

Also, why did they not tell my sister about this? Why did the nurse forcfully take patient notes from her when she discoveded this EOL plan?

Why did they feel the need to hide that EOL care had been made without anyones consent? Why did they not seek consent of anyone, even my mum?

Have you and your sister spoken to the doctors who prescribed the medication?

Have you spoken to her GP ?

Have you told any medical professional that you are planning to give her herbs and honey instead of the medication?

Have you actually spoken to any of her doctors and nurses or are you hearing things second hand though your sister?

So ask them. Rather than speculating online that your mother is being euthanised, ask.

From your description of your mum, she does sound very very unwell, even before the hospital admission.

Are you clear that she was discharged for end of life care expecting her to die in the next few days, or did she just come home with these meds which she might need in the next few weeks/months? Both are possible.

The drugs you describe are often prescribed 'Just in Case' so that people have the drugs they need ready at home if they develop pain, agitation, nausea or secretions in their last days. Many people never need them, or only need one or two.

So, are you clear what the district nurses are giving her and why? It's unlikely to be all of them, or that often (as they simply don't visit that often).

There are 2 possibilities here:
Very sadly your mum is dying and she is having appropriate treatment for terminal agitation
Or she should be back in hospital - where you should be prepared that they may assess her as too unwell to recover and at end of life.

Whatever the situation it isn't fair to your mum to leave her this distressed - and so she would be given medication to help her feel calm whatever the outcome.

All of this. Your mum is being treated by the experts. You aren't medically trained and unless you have a health and welfare lasting power of attorney you don't get to decide what treatment she does or doesn't get. Focus on spending time with her now, rather than trying to fight for things which won't work.

Yes I read that a few hours ago, thank you.

Of course I don't want to add to her suffering. But on the same hand I have to question EOL when she sounded as strong as an ox the other day. And that since discharge she has not eaten, is screaming, lashing out etc. It's extremely distressing for all, especially her. Cannot help but feel this would not be happening if these EOL drugs had not been administeered this last 2/3 weeks.

If EOL was working, and needed, why would the above be happening? Do you all know how powerful and disorientatiing these drugs are? Anyhow, am not here for debate or agrument. Just trying to work out what the best course of action is for our mum.

To be fair, you don't know this lady or her health either, so I don't think you can categorically say anything and patronise people about the covid vaccines when people HAVE died as a direct result from them. What an utterly dismissive, rude and patronising post

Well that's helpful. Thank you. :( Post reported.

No-one can answer that, and again that really is something you need to discuss with her team.
Patient notes are confidential, even if you are a family member. That is a blanket rule to protect the confidentiality between doctors and patients. You can apply to read them, but that takes time.
Could it be that a breakdown in communication has led to you and your sister feeling out of the loop with your mum’s condition?
Refusing to eat and crying out for help (sometimes called Terminal Agitation) are again more likely to be caused by the dying process than those medications.
With all gentleness, OP, even reading your version of events it doesn’t seem that there has been any obvious wrongdoing, apart from poor communication from her team. That is a big misstep on their part if that’s the case, however.
Doctors can only ever make a good guess, but do so on the basis of the patient’s condition. Please, please talk to her team.

@nellytheelephant1980 sure, and you have completely disregarded OPs description of her mothers long standing medical history, which would likely put her exactly where she is now, Covid vax or no Covid vax.

Thank you so much Nelly. This reply of hers has me in tears. Just trying to do my best.

My gran was like this and was sent home to remain there for EOL. Respectfully doctors do not have a crystal ball. EOL care might take days or weeks. If you believe something is amiss I would contact your mums GP. To suggest the NHS is simply killing her is wrong. It took my gran 3 weeks to pass once EOL care was started. My grandad swore on more than one occasion she was getting better. As for the medical records I’m not sure that anyone should just be able to pick them up to have a look…it would be reasonable for them to be removed by someone caring for her. Just because she is your mum it doesn’t give family a right to pick them up and look through. You need to speak to the GP, I fear you won’t get the answer you want because I think you have made your mind up.

Your mum is a very poorly, quite elderly lady with several severe and incurable conditions (diabetes and COPD) as well as mild dementia and glaucoma. From what you write it seems as though she has been slowly deteriorating for the past two years, her dependence on oxygen, her weight loss, her admissions to hospital and recently being taken into a HDU. Her confusion might be because of the dementia, or because of a known symptom of glaucoma which involves patients having hallucinations which can be very frightening. She might not be eating because it is very common for a persons body to start to shut down towards the end of their life.

You might be perfectly correct in your feelings, but you might also not be accepting that sadly your mum needs to be allowed to come to the end of her life with dignity and understanding. Yes the hospital should have made more effort to speak to you and your sister, and I think you need to contact them and the GP asap to discuss how you can work together.