I was shocked that there was no information or support in the hospital regarding end of life; what to expect, how to deal with it, someone to talk to about what was going on. Nothing.
The Nurses were very kind but incredibly busy. The Doctors conspicuous by their absence. You don’t feel like you can bother them as they are all rushed off their feet. So you stay with your loved one in a side room, watching and waiting for the inevitable. Nothing can prepare you for that.
If the passing is peaceful, it’s a blessing. If it isn’t, the images, sounds, smells stay in your head and play over and over like a stuck record.
When it’s over and you have to leave for the last time. A leaflet is shoved into your hand about what to do when someone dies, along with the bag of your loved one’s belongings and you are totally and utterly alone.
The hospital supposedly had a bereavement service, but it wasn’t advertised and I never saw anyone from it. If they can’t support relatives in the last hours of a loved one’s life, then what exactly are they there for?
Death is an everyday occurrence to the staff on the wards and business as usual. To me it was a traumatic event that will haunt me for the rest of my life.
I can definitely relate to that. I look back on my mums passing and there are so many things I would change. Stuff that I didn’t know at the time and I couldn’t think straight so made decisions that were maybe wrong. I suppose my mum died peacefully although still not pleasant it’s not like the films. I’ll never get over it or forget it. The whole thing was traumatic. And I get flashbacks every day. The nurses were lovely though. But I have no idea what meds they gave her towards the end. I think she was on a syringe driver with morphine. I remember reading mums medical notes just to try and figure out what was going on as were getting very limited information. No one really explaining anything in much details. Oh how I wish I had asked more questions. But at the time my world was imploding and I was all over the place mentally. My dad was the same.
Hi lost66,
I agree with you and it’s awful.
When we arrived at kings college hospital where my mum had been transferred from kent with a severe brain bleed we were told she would due imminently in a crowded room, with 5 members of the public including a blind man with his dog, a mum and her child who was suicidal and a man who was being sectioned under the mental health act.
Mum was moved to the critical care unit to die in a room with 6 other critically ill people receiving end of life care with numerous relatives sitting judge feet from my mum.
I couldn’t bear it. Then she passed and we were haven her overnight bag.we then went to the dark park where we were charged 25 pounds for overstating the maximum 8 hours even though we had been given permission to stay as long as we needed. It took me 4 months to fight with the hospital to get our car park charges refunded. Out of principle than financial need.
The whole experience was nothing less than horrendous.
Cheryl x
Sorry…loads of spelling mistakes.
Die not due
Just not judge
Ong…car park not dark park.
I’m not posting again today
Cheryl. Lol.
I totally agree. And prior to reading your post was a little nervous to express my feelings. My mum was fine and went in for a routine procedure. What happened happened. But because she was just on a “normal”. Ward we had to explain to people that. No she could not eat. She had a stroke in nhs care. No she could not drink. She had had a stroke. No she could not tell you she had soiled herself. She had had a stroke. We were not told that she was end of life. The death rattle scared us. We asked for palliative care but were told they would not be called out over the weekend. Luckily mum had us with her. We refused to leave. My heart breaks for anyone left there alone xx
Yes, one must fight a loved ones corner in hospital. This was something I regret not doing, but they were so busy and understaffed. I presumed all would work out well, but it turned into a horrifying nightmare. There was so much that went wrong that my brain can’t go there.
Of all the posts I have read and responded to (well over 600) this one post is a huge emotional trigger one for me and where as I am normally very articulate this one gets me straight in the heart and soul and my reply I am struggling with, not me at all but with every ounce of compassion and love in my body I could not bypass an acknowledgement.
When someone on this Earth has lived their life and is facing death and their final departure from this world they 
deserve to die with dignity, care and respect and their loved one’s should not be battling for every scrap of information and in many cases not even knowing their loved one’s are actually facing end of life and being wary of asking or bothering anybody when they are emotionally in a frightening place. Let alone not have a clue what is happening and what end of life looks like. The NHS falls way short of providing this care in many, many hospitals. Agency staff chatting about their holidays. Dr’s never available and patients left alone unless they are lucky enough to have visitors and the total coldness of approach is totally and morally unnaceptable. Handing over the last belongings of someone who lived on this Earth should not be treated like it is a Tesco shopping bag. Any nurse who cannot deliver care or compassion should not be in the job. This is the most traumatic event any person has to go through whether that be the person dying or their loved one’s. I suffered severe PTSD that I had a complete emotional nervous breakdown. Not my dad dying as everyone dies, it’s natural and will happen to all of us but due to the treatment and lack of dignity and care he and others I witnessed receiving. At the time of my breakdown I was not in a place or had the strength to go through a formal complaint process but that is now undergoing. I want the whole end of life process changed. I asked the consultant in one of many many meetings why I had to Google terminal agitation and hospital delerium to which he had no answer. I asked him why when my dad died they gave me his false teeth back…“hospital administration error” the only time they took this more serious is when my solicitor turned up
It took a nervous hospitalised breakdown, a world cruise, a strong spiritual faith and copious amounts of wine to take the NHS on to deliver the right end of life for ALL patients
Hi
I am so very sorry to be reaching out to you over such a sad event
I am totally baffled as to what occurred in the hospital. I was told by staff. I was interfering ?? I was told by staff to leave mums side whilst they rolled her then paralysed body around to change her. I was told that inserting a catheter may give her an infection. She was dying an infection as the last of our worries. Her dignity meant everything. At one point they were asking us ( while they were moving her ) why she wasn’t listening to them ?? She had had a stroke during a routine procedure. I asked them for a pillow so my grown up son could sleep on the floor next to her bed. Their answer was no. Nothing was explained nothing. Different responses from different staff. And then after 48 hours a certain doctor realised mum had not had her meds for 48 hours. After we had fought for them. I am angry because I a grieving. I know that. But my anger boils within me
I asked the ward Sister,do you get used to losing a patient and she said never.Each patient is an individual and as they worked on a surgical assessment ward,a lot of patients are there for at least 2 weeks they build up a relationship with patients.They loved Rob.He was always making them laugh.They sat with me for an hour after he died,just talking about him and they more or less had our history.I was given a really good information pack,telling me everything I would need to know.They were brilliant.
Hi Justine
It’s ok to reach out, I hope everyone that witnessed end of life reaches out. Hospitals need to be held accountable for duty of care. It’s too overwhelming for many loves one’s to complain, understandably so when you have no strength or comprehension of what just happened that devastated your heart and world. Even worse is that our loved one’s had to endure this treatment when they had nothing to fight back with.
I too was told I was interfering, they also forgot to give my dad basic medication, i.e. eye drops as he had glaucoma despite me being on their case hourly and daily. They tried to discharge my dad to respite despite the fact he was incoherent and bed bound. My dad when he went into hospital was as sharp as a button, at 80 he had been painting and decorating 2 days before he was admitted but yet they kept asking me if he had dementia. I demanded they read his file. He was sharper than me with his memory and humour. No one was listening. They were all too busy ticking the boxes and shuffling their paperwork. The consultant when you could get to see him was actually spot on with dad’s medical issues (which I was fully conversant with) as I made it my duty of care to know everything about my dad when he had a medical problem. It is the ward and it’s staff I had huge concerns about. My anger boils too Justine but I will not let them rob me of my happy memories of dad . I am extremely strong but not everyone is so I will take the fight on because I can and I don’t want any other families of loved one’s going through this failure and lack of care and compassion. It’s far too common. Elderly dying people are neglected and that is a fact amongst the NHS statistics. You need to focus on your mum’s life and the happy memories and loved you shared together. She is at peace now where no harm can come to her and don’t let the hospital and those last memories of her rob you of her of the happiness of her life x
Also Justine
Not everyone wants to die in an institution which a hospital is as they may not feel at peace with it, even if their death appears peaceful to others, so all options should be discussed and explored before it’s too late to make any other informed decision. The hospital have a duty to have those conversations with both patient and family.
I have said it before on other threads, why don’t staff speak and more importantly listen to their patients nearest, for 48 hours I asked as per the posters could it be sepsis, no I was told just a bad infection, I had to ask them to insert a catheter as he wasn’t passing urine only dribbles, which they eventually did he went into septic shock and died of kidney failure. It took me 10 months to complain about his care, as a retired nurse I never thought I would complain about the NHS and I am finding the whole process distressing but I owe it to my husband and myself, I saw the sepsis markers why didn’t they, yes he was on IV antibiotics but after 12 hours of not responding to them, and detiorating they still didn’t take him to ICU even though I begged them to, this didn’t happen till he went into septic shock. It will be 12 months on the 18th and I am constantly reliving those last days take care
Jan x
Hi Jan
A close friend lost her husband at 42 to sepsis and all markers were initially ignored and then it was too late. She is now left bringing up a 4 year old son without his dad. It’s heartbreaking and although everyone appreciates the NHS in some way or other when it involves someone dying the hospital have no right to ignore the family and not listen to them and answer their questions. It’s truly heartbreaking. If hospitals were reassuring and caring and honest and open we would not need to keeping reliving those final last days. We do that because we have doubt and that’s inexcusable
They asked if I wanted a post Mortem, but I said no as it would not bring her back. I will be asking to see her Medical notes at one point.
Daffy123
So, so sorry. I feel all of what you have said from my heart to yours and to everyone who has gone through this. Your mum is at peace and no more pain and suffering. Hold her heart tightly as she left it with you x
My dad died of heart failure but I am comforted knowing that heart that once beat was full of love and although a piece of my own heart went with him I am glad because when I feel pain in my heart I know he is holding it
Thank you.