Hi all,
This is my first post. I lost my mum last Sunday it was unexpected, she had suspected cancer (not officially diagnosed) she went into hospital with severe cellulitis and just didn’t get the correct care but that’s something I’m now challenging with hospital.
What I can’t get over is the last day of her life, we was called over around 10am and I was astonished on how my mother had deteriorated (Saturday morning she was eating breakfast and drinking a Costa) we was told her organs was shutting down due to sepsis, she was clearly in pain and distressed, she was on a bog standard ward with 3 other patients, I asked for her to be moved into a side room or even the hospice, as this was not nice for other patients to witness as well as the family wanted some privacy and was coldly told we don’t have any, all the while the visitors was coming and going for other patients, dinner was being served, and nurses laughing and joking about omelettes while we just had a fabric curtain to separate us from the outside noise and clutter .. I think we begged around 5/6 times to be moved, we as a family sat round her bed with my mum for 10 hours while this was happening, after my mum did pass all 3 nurses was standing by their station and as we walked out 1 by 1 ( there was 7 of us) clearly upset they coldly turned their backs and didn’t even acknowledge us.
Is this “normal” in situations like end of life? I’m really struggling to understand this lack of care and understanding.
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What a horrid experience for you and your family but sadly it resonates with me. My husband had a bilateral lung transplant in May 2023 and after 7 weeks in ITU we had to a) beg for a side room and b) beg for the machines to be turned off. My youngest daughter is a nurse and had worked at Guy’s in a lung surgery dept so understood what was happening but it was only at the very end that the multi-disciplinary team admitted that they had run out of ideas, after been refused multiple time for a side room, my daughter had a quiet word with the nurse in charge and suddenly the nurses went into over-drive and we got our way. It was only for one day but it meant that my three daughters and my sister in law were able to give my husband the dignity he deserved. Getting the life support machines turned off was another drama despite it being obvious that he was séptic, his kidneys had failed, his digestive system had failed and his organs were shutting down. He was conscious of what was happening and because we had both written a forward planning care document we all knew he did not want any more interventions.
My advice to anyone in a similar situation is go straight to the Matron, insist on being involved in the multidisciplinary meeting and insist on speaking to a doctor on duty. It might not be what you want to hear but at least you know what is happening. Also everyone at whatever age should write an advance care plan just in case they are not able to make decisions for themselves and their advocates can be guided. Also a Power of Attorney for health.
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Hi there
Sadly it is and worse. Moving to a side room actually made me feel worse with my mum. It was like she was being left out to die.
I know full well she wasn’t looked in on every hour. They reckoned she had died ‘10 mins’ before I got there on the last night. The reality is it was probably several hours.
It was a horrible room with cracked walls. Really degrading.
I can relate to what you experienced. My mum was the most ill on the ward whilst others around her were laughing about cups of tea. I would leave seething with rage.
As much as it was harrowing for you, dont think that moving to a side room would have been any better.
The reality is both are bad. Its just a job to the hospital and people die there everyday. Patients seems to get a bit more attention on the ward than side rooms. The other sad reality is other patients are only in there for a short time and then leave. I suppose humour is used to get by, but I dont think it is handled well by the staff.
Given my time again I think being on the ward right at the end might have been better. Even just to not have that feeling of isolation.
Hopefully that perspective gives you some comfort.
Daniel
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Hi, firstly I am so sorry for your loss. It’s not until it happens we realise how awful it is.
What you describe is not only very familiar given what my partner went through when she died. It also seemed to be very much the norm given what I could see from others on the ward who went through similar whilst my partner was in hospital.
Spending time on a ward is a real eye opener. If I had to describe my partners last hours and moment’s. Inhumane, cruel and lacking dignity.
Not sure what the answer is, and realise it’s no help to you.
Take care.
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Dear Mumof1 I am so sorry you went through such a terrible experience which by the looks of some of the replies is nothing unusual. It seems impossible to believe that people wouldn’t have a little more sense of humanity in such heartbreaking moments. My wife and I were treated well in the oncology hospital in Guipúzcoa Spain. When a patient is nearing end life they move the other patient out of the room. Allowing the family use of the bed and bathroom. Although I was alone for many hours with my wife it was what I wanted a nurse would pop in every hour or so to make sure my wife wasn’t suffering but otherwise we were left in peace to be together for her final hours. When she finally died I was left with her again for as long as I wanted without interruptions. It seems to me that this is something everyone deserves. A little dignity and respect doesn’t cost money.
Wishing you all the best
Tom
I’m so sorry for your loss I lost my partner almost nine months ago. As someone who worked in healthcare for 45 years this should not have happened. The lack of empathy by the nursing staff seems appalling. Sometimes it’s just not possible to move someone to a single room as the rooms are often occupied by patients on strict infection control protocol or for other reasons. It really depends on the availability of the rooms. You should have been given an explanation why your mum couldn’t be moved. It really saddens me hearing about the lack of care in some areas of the NHS.
All of this will have compounded your grief. I hope your family will be able to provide you with emotional support. It’s an old cliché but take one day at a time. You’re on a difficult journey now.
Perhaps when you’re feeling stronger you could complain to the ward manager about your mum’s care. They have to address issues and you can escalate to the hospital complaints dept if you still are unhappy with the response. Take care.
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