I lost my wife Dec. 2022. She had Lung Cancer & 5 months earlier was given 6-12 months.
Of course she is missed every second of every day. But what makes things worse is she was “takrn” from us under the End of Life protocol WITHOUT her or our permission? Given both Midazolam + Oxycodone she was refused liquids or nutrition? She died 3 days later. THIS is what makes a bad situation worse. Neither her nor us were able to say our goodbyes? Having tried every avenue open to me No-one appears to be bothered? Not only my late wife but Thousands if others are treated in this disgusting unlawful Euthanasia.
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I don’t know the details around your particular situation but I endured end of life with my partner from terminal cancer.
I nursed her at home and through end of life
End of life isn’t - or shouldn’t be - euthanasia - in fact completely the opposite and in my opinion inhumane - there was a thread on this called “Assisted dying”
End of life is when situation has reached critical mass - in my case, my partner ultimately went into liver failure from metastic cancer - and body is shutting down.
Food and fluids are stopped for a few reasons, but mainly because muscle function and ability to swallow is compromised and can lead to choking - this is also why oral medication is stopped and syringe driver used.
The other reason is internal organs are starting to shut down and fluids cannot be excreted causing edema, blood pressure spikes and respiratory distress. Food and fluids at that stage will make situation worse and cause pain and discomfort
Comfort and easing the transition is all that’s left at this stage - minimizing discomfort and pain 
My partners end of life also lasted 3 days - longest 3 days of my life - it’s a brutal experience that no one can fathom until they’ve been through it and will haunt me for rest of my days
My only concern and duty at that stage was to ensure she wasn’t in any pain and as comfortable as possible
Long post and don’t know specifics around your wife’s end of life - but end of life starts when body is shutting down and usually ability to move, talk and communicate are lost
Transparency around end of life is non existent and no one explains the situation or what is going to happen
I believe that palliative doctors and nurses purposely withhold this as it would result in far more people taking situation into own hands
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Same thing happened to my husband. He also died December 2022 with lung cancer and pulmonary fibrosis. When he was given his cancer diagnosis he was given 12 to 18 months. Went 12 months. He was admitted to hospital on 16 December - coincidentally 55 years since we met. Next morning when I visited him in hospital he was paralysed from the waist down, tumour had spread to his spine. Next seven days we were making arrangements for flat to be converted so he could come home. 23 December they were going to move him into a hospice whilst alterations were being done. Gave him a stronger painkiller as he was in so much pain and to make it easier to transport him. I was due to visit him that afternoon but as I hadn’t had confirmation that he had been moved, I went to the hospital. When I got there he was unconscious and I couldn’t rouse him. Nurse finally came in and tried everything to rouse him. No success. Eventually doctor and someonre from the hospice came in to see him. They were stood at the end of the bed whispering if they had given him an overdose. At that point, my husband came round - they only way I can describe it, is it felt as though he wasn’t ready to go. Moved him to a private room and told me he wouldn’t survive the night. He went for another four days with no food or water. I complained to the nurse that his lips were cracked so they put moisturiser on and let me wipe his mouth round with a wet swap. He was desperately trying to suck to get liquid in. He never spoke again after 22 December as was kept sedated. I sat with him day and night just talking or reading to him. Hearing is the last sense to go, so I knew he could hear me as every so often he would squeash my hand. The day he passed, I just popped home to get a change of clothes and he went whilst I was away from him. I was told to take comfort from that because it happens frequently. They do it to spare you the pain of seeing them take their last breath. Our two children want nothing to do with me, so had no support. I joined a group two weeks after his passing but must admit I don’t remember much about it. My body turned up but nothing else. 12 months on and I now go to 6 different clubs. Still not used to him not being around. His last words to me were to go out and make a life for myself. It’s hard because I could never leave the house unless he was with me. Each day is a challenge for me and I get days when I can’t leave the house. Apologies for such a long reply. Take care and look after yourself
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Whilst we all knew my wife was terminal she never wanted to go into a hospice. At the time Covid was at it’s high spot & getting an ambulance would have meant a
5 hr. wait. After nursing my wife for 2 years she had an end of life nurse visiting one week & a District nurse the other.
On the morning in question knowing my wife was not responding well to her treatment & as it was the end of life nurse who was next to visit I phoned her.
She attended & suggested my wife go into the Hospice for 2 days whilst they sorted her Meds.
My wife was reluctant to do so, but asked me what she should do? After considering the pro’s & cons & getting a DEFINATE 2 days only stay off the nurse i agreed she should go in.
I was told to bring all her meds & followed the ambulance up. I arrived just as the Nurses from the Hospice had settled my wife into a room & in bed.
Then began a 24hr. vigil at her bedside from myself & my sons plus their wives!
At no time was her meds i had brought used?
She was on a Syringe pump yet we were never told what it contained?
She was eating/sleeping & after 2 days a Dr came & introduced herself to all ;present. She explained that she was on antibiotics.
When she left the room my wife was laughing & joking with me & my 2 cousins. After 1/2 hr. she suddenly asked us all to go? which was totally unlike her? However, we complied as i knew my lad was due to visit anyway.
I told her i would be back at -7.am.
When i did return she was (i thought) asleep? But NO. she was comatose?
The Dr. constantly visited & repeated to me to talk to her?
My wife NEVER came round.
After 2 full days of this my wife passed at 3.15 am on 5th Dec.2022.
Totally confused I asked the Dr, as to why she was comatose?
After a lot of pressing by me it was revealed my wife was given Midazolam + Oxycodone which had sedated her & comatose her?
No explanation as to why she was given these was forthcoming. Following this & trying to get my head around things I delved into it all.
In 2013 the Liverpool Pathway was abolished & the Gold Standard Framework took it’s place. This was done by a parliamentary Committee after a Public outcry.
Baroness Neuberger was Chairperson & Prof. Ahmedazai was also on the committee. (he later wrote a report to the H.O.Lords citing over 30 patients had been wrongfully treated under End of Life guidelines).
When Gold S Framework was introduced it was very similar to the L/Pool pathway BUT with 5 recommendations. The 1st by Baroness Neuberger was that ALL End of Life/ Palliative Care patients will be given Fluids & Nutrition. Further the Patient & immediate family be told of the Care plan etc.
NONE of this was done!
I demanded to know why my wife had not been given liquids/ nutrition etc. & was told “WE are a hospice NOT a hospital , my job is to see patients pass without pain”? this by the said Dr.
I blew my top at her and she admitted that she had failed to notify anyone of her care plan etc.?
For the first 12 mths. since my wife’s death I contacted every dept. I could think of including my M.P., The health Sec, Baroness Neuberger who was sympatric & aghast that Liquids/ nutrition had no been given? The parliamentary Ombudsman in fact EVERY dept. i could think of.
The end result ----- Nothing! I was told on the Q,T, that it would cause such a scandal for the NHS that No-one would commit or comment on the matter?
Not only me but there are plenty Thousands even that have had loved one’s treated in this way.
In Dec. 2023 very quietly the Health Secretary banned the use of Midazolam & Morphine (oxycodone) used on terminally ill patients! So Yes memories of us i do know in detail about what the end of Life protocol is about & to be honest it stinks!
I
Hi what does this mean? Do you have any articles? “In Dec. 2023 very quietly the Health Secretary banned the use of Midazolam & Morphine”
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@Stes im sorry for your situation and from the sounds of it, if your wife was laughing and talkative, a syringe driver should not have been used, as this is reserved for when the use of oral medication is no longer viable.
The doctor was obliged to acquire consent for use of the syringe driver and discuss your wife’s wishes with regards to treatment.
Your information is incorrect - Baroness Neuberger is not, nor ever has been the health secretary - Steve Barclay was Health secretary until Nov 2023 and was then replaced by Victoria Atkins in Nov 2023
The GSF aims to ensure that everyone involved in a patient’s care is aware of their wishes and prepared to fulfill them. This could include decisions around providing fluids and nutrition, but it would be based on the patient’s individual needs and preferences, and in line with best medical practice. There is no specific mention in the GSF documentation that suggests a mandatory requirement for the provision of fluids and nutrition to terminally ill patients until death. Instead, the approach is more centered on respecting the patient’s wishes and providing personalized care.
Once a patient has entered the final stages of end of life (unresponsive), cessation of fluid and nutrition is part of best medical practice to ensure comfort of the patient - this is a worldwide standard and is done for specific medical reasons .
The timing of this cessation may be under question in many circumstances, and sounds like it was in your wife’s case - a syringe driver should not have been used if she was responsive and talkative, to start with, and cessation of fluids and nutrition is reserved for when swallow function has been lost and fluids will go straight to lungs, causing distress and choking
I can find no source on this and this is impossible - someone can be terminally ill for months and in severe pain - as was my partner - she was on opioids for 11 months and would have been in unbearable pain without. The pain escalated as time went on due to tumour burden in her liver and was moved to oxycodone from morphine as latter was no longer strong enough
There is no way opioids will be banned for terminally ill patients in severe pain undergoing palliative care - that is beyond inhumane
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I lost my husband to lymphoma cancer coming up to 3 years ago. His last 3 weeks were in hospice. Yes he was on a syringe driver but I was consulted about this. Three months earlier, after over a year of treatment, he had had a brain seizure and in the last month his seizures became uncontollable by medication with his short term memory affected.
He had been eating in hospice and we chose his meals together. Then there came a point when he could not chew or swallow. He had been liking soft Belvitas and he struggled. I took him pancakes on pancake day and chocolate on Valentines. Within days he had deteriorated and presented like someone much older than 61. He could never recover. Patients with similar last 4 weeks to 4 months. He lasted 3 months to the day after the massive seizure. In situations like this I believe you have to let them go without pain hopefully.
I have difficulty sleeping still, even having bought a new bed, because I am still in the room where the first earthquake of a seizure woke me up.
I keep busy with friends, family, hobbies and volunteering.
I want to remember the good times but the memory of those last 3 months is what I keep remembering.
We met later in life so only had 22 and a bit years together. We have a daughter who is currently a student. She was doing A levels when her Dad died.
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