What should hospital end of life care look like

Pb98

New member
Oct 4, 2021
1
0
Hi,

My loved one has dementia and is very sadly at the end of their life. They have the pneumonia caused by swallowing food and fluids into the lungs and we’ve been told there’s nothing that can be done for his quality of life.

Their dementia is severe and I don’t want them to suffer anymore.
However I’m very concerned this is not the way any of us or they would want to go. They’ve been moved to a side room, is no long hooked up to any fluids or medication and I haven’t seen many checks being done. Im very concerned they are essentially being left to starve to death. They try to speak sometimes and can open their eyes.

Is there anything that should be done at these final stages? It feels very disturbing and very upsetting to watch. We just want them to go with dignity.
 

Felixcat1

Registered User
Feb 23, 2021
169
0
Unfortunately I experienced this with my mum. She didn’t have dementia of any kind, her death was the result of complications after surgery. Once the doctors decided there was nothing else they could do all care was withdrawn and she was pretty much left to die. My dad found it very distressing and her death was not very dignified. It’s called a pathway. It was very sad. I hope you are able to find a more dignified end for your grandad.
 

JHA

Registered User
Aug 7, 2021
727
0
I am really sorry that you are going through this. I do not have any experience on end of life care for a dementia patient but I did stay with my best friend last November when she was admitted to hospital after a lengthy course of radiotherapy which caused her to deteriorate rapidly.

She was admitted into the hospital on the Thursday night alone and on the Friday was transferred to a hospice ward and was then allowed two visitors who were allowed to come and go as they pleased. I stayed from the Friday night until the Wednesday when she sadly lost the fight. They kept her comfortable with medication through a pump driver, regularly came into ensure that she was clean/dry, repositioned her and washed her. I was given a little spray bottle to moisten her mouth but she kept pushing it away until they swapped it for pink gin and tonic on the Wednesday. Her son and I still joke that she was waiting for one last G&T.
 

Linbrusco

Registered User
Mar 4, 2013
1,694
0
Auckland...... New Zealand
@Pb98
So sorry to hear about your loved one.
Im not from the UK, and my Mum was in severe stage Alzheimers, passing away in March this year but she was in a care home.
I beleive the hospital staff should be doing more though to keep them comfortable.

My Mum also had pneumonia, more than likely aspiration pneumonia.
Her swallowing had become poorer in previous weeks and was coughing more and more.
She simply became in a semi comatose state, within a space of hours one day, refusing all drink and food.
We decided that if Mum could not swallow then oral anti biotics were not to be given.
Same with IV fluids. At Mums advanced state it was only prolonging her life.
Nursing staff, made Mum comfortable, washing her face, applying lip balm and an oral wet sponge. We asked for her not to be turned but just gently repositioned.
GP put Mum on a morphine syringe driver and another med to dry secretions as she was coughing and very crackly. To not give food or fluids goes against all odds, but to a body and organs that are shutting down and to stress the digestive system would be worse.
Mum was quite peaceful.
We would have accepted her death much easier if she had passed away within that weekend as GP and nursing staff predicted where we all said our goodbyes.
However Mum had other ideas and passed away 7 days later. That was the toughest part, as she held on, and ever so gradually deteriorated.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello @Pb98
a warm welcome to DTP
though such a sad reason for you joining us here

the staff should be taking care to ensure that your loved one is in no distress or pain .. if you have any concerns do speak to them and ask them to explain how they are treating your loved one
this may give you some idea of what to ask them

keep posting as there are members who have experienced what you are going through
 

Wildflowerlady

Registered User
Sep 30, 2019
1,103
0
Hello @Pb98 I lost my dad in January this year advanced dementia. I was allowed to visit dad both at hospital and in the CH. It was confirmed dad had reached his end of life so hospital returned dad to the CH nursing floor for palliative care. Dad hadn't been in the CH long at all and he passed 8 weeks after going into the CH from his own home. Dad became unwell so CH doctor arranged for admission to hospital. It was distressing as dad had not been eating or drinking whilst in the hospital for 15-16 days but this was one of the reasons doctor arranged for the admission. Dad went back to the CH for just under 2 weeks before he passed. The manageress of the CH said that although it seems terrible/stressful to family that the PWD is no longer eating or drinking it is a natural progression and they don't feel hunger or thirst as we would. My dad didn't communicate in the last days of his life but he appeared to raise his eyebrows when I put a cd on. Dad didn't have a syringe driver on as again manageress said that not everyone at end of life needs one but I know drugs were made available should he have needed them. My dad actually looked quite peaceful and cosy in the bed and I know they did reposition him regularly I think they said around four hourly. I know they did do this as I was visiting daily nurse was good with him and was gentle. It was all very sad and it was pretty distressing even knowing all this. My dad had been in his own home with carers going into his home in Novemberr 2020 and by January 2021 he was gone. It was a bit of a shock we lost him but were told his dementia was more advanced than was realise admitted by Social service to CH for assessment with a view to a permanent placement. I hope you will find some reassurance in my post as to what the end may be like but everyone will have their own experience so some things will be different especially as to what medication may or may not be needed. My thoughts are with you.
 

Moggymad

Registered User
May 12, 2017
1,314
0
My mum died in hospital following aspiration pneumonia which although successfully treated, accelerated the dementia to end stage whereby she refused all attempts to feed her & give her fluids. Intravenous fluids were initially given but decision was taken to withdraw all fluids & A/B as it was clear mum was coming to the end of her life.
The only meds given was pain meds, Oramorph, which changed to injections once she stopped swallowing. Moving her to different positions caused great distress so we asked that movements were kept to a minimum such as when checking or changing her. Even then further pain relief/sedation was required to prevent fitting brought on by stress of being moved. This eventually changed to a syringe driver plus midazolam when required. Thankfully she passed peacefully.
I think in your situation I would do as Shedrech suggests & ask how they plan to treat your loved one. The least they should do is ensure they are comfortable & pain free but this also requires staff observation for signs of discomfort or pain. I would also find it very distressing that all sustenance has been withdrawn but i think the risk of further aspiration would be the reason as well as being at the end of life.
I struggled very much with this myself but the Dr was very understanding & explained that mums body no longer required it as it was shutting down. We also had the added comfort of knowing mum was refusing everything so in a way she had made the decision herself.
You are the one who knows your loved one best of all so please speak up to the staff if you have any doubts or concerns. Their comfort & yours is paramount at this very difficult time.
 

Wildflowerlady

Registered User
Sep 30, 2019
1,103
0
I forgot to say in my post that like @Moggymad's mum my dad was also put on a intravenous drip for about 2 weeks when in the hospital. Dad also refused offers when the drip was removed although hospital were reluctant because of aspiration risk but I did query it with them. Hospital said they couldn't keep the drip in indefinitely but tbh dad clearly didn't want to eat or drink anyway. Dad either decided he didn't want to which is possible as Dr says he did say he didn't want to live or he had lost the ability to.
 

Violet Jane

Registered User
Aug 23, 2021
2,015
0
I’m afraid that it is disturbing to see your loved one dying over several days (six in my mother’s case) during which they take in little or no fluid and nutrition. I was unhappy with how the EOL stage was managed in my mother’s case. There was no communication by any doctor and, unlike practically everyone else on this forum, my mother was not given any EOL medication at all although it was prescribed. I was told that my mother was not showing any signs of distress but I certainly found it distressing watching her dying without any medication to soothe her passing. It seems to me that some medical staff / homes are much more interventionist than others, with morphine in particular being given on a precautionary basis in case the person is uncomfortable / experiencing pain.

I would ask questions and be persistent. Demand to speak to a doctor for an explanation of what is happening and why medication is and is not being given. After the sixth day of my mother dying I was about to complain to the surgery but she died in the early hours of that morning.

I’m afraid that my mother’s death has only made me very cynical about the effectiveness of palliative / EOL care and confirmed my belief that people with dementia are very poorly treated by the medical profession. Since Harold Shipman and the controversial Liverpool Care Pathway it seems to me that medical staff are unnecessarily cautious about prescribing medication that could hasten death even though the person is EOL and it would ease his/her passing.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
My mum died from dementia and I would like to explain that the stopping eating and drinking is a natural part of the process. - they do not starve to death. Their bodies shut down slowly over days or even weeks and so their body can no longer process food or fluid. In fact, if you try and force them to eat or drink it can actually cause pain.

They do not die because they are not eating or drinking - they stop eating and drinking because they are already dying.

This process can be harrowing to watch. My mum did not eat or drink for 17 days before she finally passed away and it seemed impossible that she was still alive by the end. There are lots of physical changes that happen - the limbs become cold, there is skin mottling and the breathing changes so that there are gaps between breaths. All this is normal, although horrible to witness. The main thing is to make sure that they are kept pain-free and comfortable. This means having pain killers in either a patch, injections or a syringe driver. Sometimes they are also given something to dry up the secretions and saliva. Mum was cleaned and turned (very gently) every few hours to prevent pressure sores. She was also given mouth care of some liquid on little sponges/brushes to keep her mouth moist.

It is a difficult time and I wish you strength to get through it
(((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))
 

Violet Jane

Registered User
Aug 23, 2021
2,015
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Canary, I agree with what you say about the person not eating and drinking because s/he is dying. My point is that not everyone is given EOL medication as people on this forum imply. I was actually told by one carer at my mother’s home that she could only recollect a couple of residents being given EOL medication. It seems to me that some homes / doctors will assume that the person might experience pain / discomfort as s/he is dying and give morphine readily whereas others don’t and need to observe clear evidence of pain / discomfort before morphine is given.

It is very difficult watching someone dying over a period of days and it’s even more difficult if you are not convinced that s/he is getting everything s/he needs to make him/her as comfortable as possible.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
others don’t and need to observe clear evidence of pain / discomfort before morphine is given.
That was my experience too, but mum was showing clear evidence of pain (grimacing and crying out when she was moved) when she was started on firstly injections and then a few days later, on a syringe driver, which she had for the last three days. The first 10 days of her not eating or drinking she had no pain killers at all, but did not seem to be in any pain.

I can only say what it was like for my mum. I am sorry you felt your mum was in pain and wasnt given anything.
 

Violet Jane

Registered User
Aug 23, 2021
2,015
0
I can’t say for sure that my mother was in pain. She might or might not have been. It’s difficult to tell what a person with advanced dementia whose body is shutting down is feeling. I just feel that the doctors / care home staff are unnecessarily stingy / cautious with things like morphine these days because it could hasten death. And why not when someone is right at the end of their life? I say. But the powers that be in this country (government, medical profession, hospices churches etc) have an almost uniquely peculiar opposition to voluntary euthanasia among supposedly civilised countries and that probably colours the approach to EOL care. I have been told that 30 years it was routine to help people at EOL on their way and that this was regarded as the humane thing to do. Since Shipman and the controversy over the LCP there is much greater scrutiny and, I suspect, much less use of morphine. Personally, I don’t see this as progress.

Anyway, back to the original post. It can be very distressing witnessing someone dying over several days, and you can feel helpless, not knowing what to do or whether you should be doing something more for your loved one. Not everyone is able to stay with his/her loved one the whole time or visit every day, and that is difficult as well. It’s also difficult not knowing how long this final stage will last. As canary’s posts have recorded, this stage can go on for days, sometimes many days. I wish the original poster strength and courage at this final, difficult stage.
 

Mandy61

New member
Jan 7, 2022
1
0
My mum died from dementia and I would like to explain that the stopping eating and drinking is a natural part of the process. - they do not starve to death. Their bodies shut down slowly over days or even weeks and so their body can no longer process food or fluid. In fact, if you try and force them to eat or drink it can actually cause pain.

They do not die because they are not eating or drinking - they stop eating and drinking because they are already dying.

This process can be harrowing to watch. My mum did not eat or drink for 17 days before she finally passed away and it seemed impossible that she was still alive by the end. There are lots of physical changes that happen - the limbs become cold, there is skin mottling and the breathing changes so that there are gaps between breaths. All this is normal, although horrible to witness. The main thing is to make sure that they are kept pain-free and comfortable. This means having pain killers in either a patch, injections or a syringe driver. Sometimes they are also given something to dry up the secretions and saliva. Mum was cleaned and turned (very gently) every few hours to prevent pressure sores. She was also given mouth care of some liquid on little sponges/brushes to keep her mouth moist.

It is a difficult time and I wish you strength to get through it
(((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))
I would like to say that my grandma went into hospital with a mild chest infection, she suffered from moderate dementia and was physically very active. She had to be prompted to eat and drink or she would leave it. After seven days in hospital I was informed that my brother had agreed to 'allow' her to pass away peacefully. W;hen I first visited her she was active, she knew who my daughter and grandson were and played happily with him. Within a few days she was unconscious in bed. I visited her every day for over a week, she received no fluids and very little care. She wasn't given any mouth care and her lips were black and cracked, her tongue was also black. I had to give her the mouth care myself. She wasn't turned in bed for hours and not once did a nurse come and see how she was. It was obvious she was going to pass away as it was too late to do anything. I was told by the night sister to collect my grans things and gave me a plastic carrier bag, she also told me to take off my grans wedding ring. I did neither, I was disgusted, she was still alive. When she did pass away I tried to find a nurse, when I found one and told her that my gran had passed away she didn't understand me, I had to repeat it three times before loudly having to say that my gran was dead! This was just one case of the Liverpool care pathway being abused by staff. My gran should never have been receiving this care, when I complained about her care I was told that my complaint couldn't be processed as it was my brother who was next of kin and he hadn't complained. (he also didn't see her suffer). End of life care should be a dignified passage and I'm sure most are.
 

Wildflowerlady

Registered User
Sep 30, 2019
1,103
0
Hello @Mandy61 condolences for the loss of your gran. I can relate to your post for a few reasons. Many many years ago my nan was in hospital (no dementia) and the nurse asked me to persuade her to take off her rings reason being they were actually concerned they would slip off. I did ask her but she didn't want to so I never asked again. It did feel very wrong to ask and made me feel very uncomfortable. My nan passed away a couple of days later and we actually left all the rings on and asked that she was buried with them. The rings weren't of great monetary value but obviously to her were very important. Nan had never taken them off and were her wedding, eternity and engagement rings my grandad her husband had passed maybe 15 years earlier. I lost my dad January 2021 first anniversary is quite soon. It was distressing as he was sent back to the CH from a two week hospital stay but he hung on for several days. Dad had walked into the CH just 8 weeks earlier but his dementia was accelerating and carers were struggling so notice was given by the care company. Dad became even more unwell and admitted to hospital they discovered a stomach ulcer and he had had a small stroke but not sure when other than was recently. Dad went further downhill was not eating not drinking as couldn't swallow safely and was sent back EOL. I can only say he did look peaceful and staff on the nursing floor seemed very kind. I know that dad was being turned/repositioned to make him comfortable in fact the nurse even did it not long after he passed and whilst awaiting for the undertaker to arrive. Unfortunately I wasn't there when my dad actually passed but the CH did call me straight away. I had seen dad that day but because of Covid it had to be a very short 10 minute visit. My dad passed about four hours later. I know it seems shocking how quickly things change and I understand how you feel. Its still hard for me to accept my dad passed so soon after going into the CH. Take care you did your best for your gran and I'm so sorry it was so hard for both of you and not as you would have wished for her.
 

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