End of life - drip or no drip?

jojo2018

Registered User
Mar 30, 2018
98
0
Hello,

After 6 years of battling a host of illnesses, my MIL has no more viable treatment options and we have been told she has weeks / months to live. She is in hospital, weakened by a virus and subsequent HAI, and because of her dementia does not understand where she is or why.

My OH is in the awful position of having to make all decisions for her, and there is a slight difference of opinion between two of her Drs. Dr A was extremely blunt - said treatment was no longer possible, it was a miracle she'd lived this long, she was confused and agitated - and we should withdraw all medical support and monitoring (including the drip) and give her the dignity of letting nature take its course as quickly as possible. Dr B agreed mostly, but wants to keep the drip in place and a minimum amount of monitoring, taking a slightly softer approach. Both were doubtful she'd leave the hospital, though said a hospice could be an option depending on what happened.

She still knows who we are and has occasional moments of clarity, but not enough to explain things to her or get her input (not by a long way).

Does anyone have any experience of this, or understand the benefits / risks of either Drs approach? My OH is devastated at the thought of being a decision maker in his mums death, worried about not fighting for her enough but also scared he will prolong her suffering.

And we also feel she's not always getting enough pain relief - despite having regular pain killers and periodic drops of morphine. Sometimes it seems she's in agony though she can't express it. If anyone has any guidance on this I'd appreciate it too.

Many thanks,
xxx
 

Jessbow

Registered User
Mar 1, 2013
5,678
0
Midlands
Is hospice an option? It does sounds though she is near to the end, a hospice might be a a better option.

They are the experts in pain control at the end of life.
 

Beate

Registered User
May 21, 2014
12,179
0
London
My OH was taken to hospital with acute sepsis, and it was pretty clear early on that he wouldn't survive it. Originally he was on oxygen, a drip for fluids and antibiotics, and painkillers, and when I said his son wanted to come to say goodbye, this was left in place for a further 24 hours, but then everything except the morphine was taken off, and I was fine with that. All these things just prolong the inevitable. Near the end, the organs close down and liquids are no longer needed anyway. We were given pink foam lollipop sticks to wet his lips now and then, and morphine was given whenever they deemed it necessary. I wasn't sure whether he was still in pain or not so I asked for a palliative nurse to come, and she was fantastic. She examined his arms and declared that they were relaxed and floppy and hence he wasn't in any pain. She also put a sign on the door that no staff should enter without having gained permission from the head nurse first, so we weren't disturbed constantly by cleaners or staff asking for his lunch options etc.

So maybe try and find a palliative nurse for some reassurance.
 

jojo2018

Registered User
Mar 30, 2018
98
0
Is hospice an option? It does sounds though she is near to the end, a hospice might be a a better option.

They are the experts in pain control at the end of life.

Thanks for replying. The Drs said that at the moment it was best not to move her. And they said they have a partnership with a local hospice and have their experts visiting when needed. I wasn't completely sure about the conditions that would lead to her moving to a hospice, as they seemed to give the idea that although it was an option they didn't think it would happen. They also told us not to worry as they would advise us if / when it would be an option. There are no Dr visits till Monday but I think I will ask again, especially as you've mentioned it could be better.
 

jojo2018

Registered User
Mar 30, 2018
98
0
My OH was taken to hospital with acute sepsis, and it was pretty clear early on that he wouldn't survive it. Originally he was on oxygen, a drip for fluids and antibiotics, and painkillers, and when I said his son wanted to come to say goodbye, this was left in place for a further 24 hours, but then everything except the morphine was taken off, and I was fine with that. All these things just prolong the inevitable. Near the end, the organs close down and liquids are no longer needed anyway. We were given pink foam lollipop sticks to wet his lips now and then, and morphine was given whenever they deemed it necessary. I wasn't sure whether he was still in pain or not so I asked for a palliative nurse to come, and she was fantastic. She examined his arms and declared that they were relaxed and floppy and hence he wasn't in any pain. She also put a sign on the door that no staff should enter without having gained permission from the head nurse first, so we weren't disturbed constantly by cleaners or staff asking for his lunch options etc.

So maybe try and find a palliative nurse for some reassurance.
Thanks so much for sharing, my MIL was also on antibiotics and occasional oxygen, which has stopped and it's just the drip remaining. I would prefer my OH not to have to directly ask for anything to stop, I'd rather the Drs were giving us a single recommendation - but I worry as you say that it could just be prolonging the inevitable and not in a nice way for her. Thanks for your help, I'm sorry to hear you went through this too x
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,001
0
72
Dundee
My experience was almost exactly the same as Beate's, My husband developed aspiration pneumonia. He was on drips and antibiotics for a few days but it was clear that nothing was making any difference. We were given a side room and I was given a fold down bed so that I could stay with him all the time. He had a few periods of lucidity but not many. I agreed to everything being stopped and he got oral care to ensure that his mouth was kept moist and clean. He died peacefully a few days later. There had been talk of him coming home for his last days but that never happened. If it had a would have had support from a hospice at home scheme.

I wish you mum peace and you and your family strength.
 

jojo2018

Registered User
Mar 30, 2018
98
0
My experience was almost exactly the same as Beate's, My husband developed aspiration pneumonia. He was on drips and antibiotics for a few days but it was clear that nothing was making any difference. We were given a side room and I was given a fold down bed so that I could stay with him all the time. He had a few periods of lucidity but not many. I agreed to everything being stopped and he got oral care to ensure that his mouth was kept moist and clean. He died peacefully a few days later. There had been talk of him coming home for his last days but that never happened. If it had a would have had support from a hospice at home scheme.

I wish you mum peace and you and your family strength.
Thank you, and thank you for sharing. It seems the withdrawal of the drip perhaps comes later than where she is now, even though the outcome will be the same. I'm sorry you experienced this loss x
 

Lzanne

New member
Jan 5, 2019
4
0
Dad went onto palliative are on nye. Everything has been withdrawn, just mouth care. We are in hospital as we wanted the reassurance of help when needed, and given a side room. He is never left alone someone is always with him. Dad got aspiration pneumonia and was unable to swollow, they tried a feed tube but didn’t work and I was glad when they removed it. He is comfortable and the palliative nurse who sees him daily has been excellent. Everyone is different and this is dads own journey. Can’t quite believe how he is holding on x
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,001
0
72
Dundee
Dad went onto palliative are on nye. Everything has been withdrawn, just mouth care. We are in hospital as we wanted the reassurance of help when needed, and given a side room. He is never left alone someone is always with him. Dad got aspiration pneumonia and was unable to swollow, they tried a feed tube but didn’t work and I was glad when they removed it. He is comfortable and the palliative nurse who sees him daily has been excellent. Everyone is different and this is dads own journey. Can’t quite believe how he is holding on x


A hard time for you. Thinking of you and wishing you strength.
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
On my husband’s last visit to hospital he was put on oxygen and monitored for most of the day. In the afternoon the Doctor who had been with us all the time sat with us and asked where did we want K to be. I said back in his nursing home and he said he believed that to be the right place for him and he would move heaven and earth to get him back. It took some time, it was Good Friday and the hospital pharmacy was closed. He made a dozen phone calls to find a pharmacy that had both end of life medications he wanted him to go back with should he need them. He also arranged for a nurse from our local hospice to come first thing next morning to stay with us until she was no longer needed.

I collected the medication and along with our daughter headed back to the care home to wait his arrival. Our son and granddaughter stayed with him and our granddaughter who is a Carer travelled in the ambulance with him. He came back with oxygen. The home did not carry oxygen and because of the high level he was given the tank would only last 45 minutes. No chance at 11pm to get another so he would have to go back. I rang the hospital and spoke to a doctor and asked what would happen without the oxygen. He said the inevitable and the high level was to make sure he reached the carehome in time To continue the oxygen was not in his best interest, the point of no return had been reached.

So the oxygen was removed and he was put into his bed and daughter and granddaughter bathed his face and put his clean pyjamas on. His Carers came to say their goodbyes and then we were left alone. The Carers were hovering around close by and the nurse had set up her room for the night just across the corridor. The end of life medication was not needed and two and a half hours later he quietly passed away with us around him and his music playing in the background.

I’m so glad we had a doctor that spoke honestly to us, did not sugar coat anything but was full of compassion. If you can say such a thing, he made the end perfect for my husband and for us as a family.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,001
0
72
Dundee
So heart wrenching to re-visit these days @jaymor. Having sáid that we know it was the best thing for our boys.
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
Very true @Izzy but I think as I think you do, that the pain felt on revisiting will be worth it if we can only give some comfort to someone else who is faced with withdrawing everything.
 

AliceA

Registered User
May 27, 2016
2,911
0
Thank you both so much for revisiting your extreme pain to help the rest of us on here.
It is my birthday and my biggest present is that we are still together after a lifetime even if somewhat battered.
My cards from friends brought home once again how fortunate we still are, I do admire how you are managing your lives. I know it is far from easy. So I doubly thank you for your bravery. XX
 

AliceA

Registered User
May 27, 2016
2,911
0
On my husband’s last visit to hospital he was put on oxygen and monitored for most of the day. In the afternoon the Doctor who had been with us all the time sat with us and asked where did we want K to be. I said back in his nursing home and he said he believed that to be the right place for him and he would move heaven and earth to get him back. It took some time, it was Good Friday and the hospital pharmacy was closed. He made a dozen phone calls to find a pharmacy that had both end of life medications he wanted him to go back with should he need them. He also arranged for a nurse from our local hospice to come first thing next morning to stay with us until she was no longer needed.

I collected the medication and along with our daughter headed back to the care home to wait his arrival. Our son and granddaughter stayed with him and our granddaughter who is a Carer travelled in the ambulance with him. He came back with oxygen. The home did not carry oxygen and because of the high level he was given the tank would only last 45 minutes. No chance at 11pm to get another so he would have to go back. I rang the hospital and spoke to a doctor and asked what would happen without the oxygen. He said the inevitable and the high level was to make sure he reached the carehome in time To continue the oxygen was not in his best interest, the point of no return had been reached.

So the oxygen was removed and he was put into his bed and daughter and granddaughter bathed his face and put his clean pyjamas on. His Carers came to say their goodbyes and then we were left alone. The Carers were hovering around close by and the nurse had set up her room for the night just across the corridor. The end of life medication was not needed and two and a half hours later he quietly passed away with us around him and his music playing in the background.

I’m so glad we had a doctor that spoke honestly to us, did not sugar coat anything but was full of compassion. If you can say such a thing, he made the end perfect for my husband and for us as a family.

Thank you so much for your clarity, we really do need clearer understanding and you have helped. X
 

AliceA

Registered User
May 27, 2016
2,911
0
My OH was taken to hospital with acute sepsis, and it was pretty clear early on that he wouldn't survive it. Originally he was on oxygen, a drip for fluids and antibiotics, and painkillers, and when I said his son wanted to come to say goodbye, this was left in place for a further 24 hours, but then everything except the morphine was taken off, and I was fine with that. All these things just prolong the inevitable. Near the end, the organs close down and liquids are no longer needed anyway. We were given pink foam lollipop sticks to wet his lips now and then, and morphine was given whenever they deemed it necessary. I wasn't sure whether he was still in pain or not so I asked for a palliative nurse to come, and she was fantastic. She examined his arms and declared that they were relaxed and floppy and hence he wasn't in any pain. She also put a sign on the door that no staff should enter without having gained permission from the head nurse first, so we weren't disturbed constantly by cleaners or staff asking for his lunch options etc.

So maybe try and find a palliative nurse for some reassurance.

Thank you for explaining that relaxed arms indicated no pain, it is a useful thing to know. X
 

jojo2018

Registered User
Mar 30, 2018
98
0
Dad went onto palliative are on nye. Everything has been withdrawn, just mouth care. We are in hospital as we wanted the reassurance of help when needed, and given a side room. He is never left alone someone is always with him. Dad got aspiration pneumonia and was unable to swollow, they tried a feed tube but didn’t work and I was glad when they removed it. He is comfortable and the palliative nurse who sees him daily has been excellent. Everyone is different and this is dads own journey. Can’t quite believe how he is holding on x
I'm so sorry you are going through this, but it sounds like he is being incredibly well cared for and supported. Sending virtual hugs x
 

jojo2018

Registered User
Mar 30, 2018
98
0
Thank you both so much for revisiting your extreme pain to help the rest of us on here.
It is my birthday and my biggest present is that we are still together after a lifetime even if somewhat battered.
My cards from friends brought home once again how fortunate we still are, I do admire how you are managing your lives. I know it is far from easy. So I doubly thank you for your bravery. XX
I agree, these experiences must be so hard to relive but studying this forum and sharing them with my OH has kept us both more aware of what to expect and how to cope, so thank you again x
 

jojo2018

Registered User
Mar 30, 2018
98
0
On my husband’s last visit to hospital he was put on oxygen and monitored for most of the day. In the afternoon the Doctor who had been with us all the time sat with us and asked where did we want K to be. I said back in his nursing home and he said he believed that to be the right place for him and he would move heaven and earth to get him back. It took some time, it was Good Friday and the hospital pharmacy was closed. He made a dozen phone calls to find a pharmacy that had both end of life medications he wanted him to go back with should he need them. He also arranged for a nurse from our local hospice to come first thing next morning to stay with us until she was no longer needed.

I collected the medication and along with our daughter headed back to the care home to wait his arrival. Our son and granddaughter stayed with him and our granddaughter who is a Carer travelled in the ambulance with him. He came back with oxygen. The home did not carry oxygen and because of the high level he was given the tank would only last 45 minutes. No chance at 11pm to get another so he would have to go back. I rang the hospital and spoke to a doctor and asked what would happen without the oxygen. He said the inevitable and the high level was to make sure he reached the carehome in time To continue the oxygen was not in his best interest, the point of no return had been reached.

So the oxygen was removed and he was put into his bed and daughter and granddaughter bathed his face and put his clean pyjamas on. His Carers came to say their goodbyes and then we were left alone. The Carers were hovering around close by and the nurse had set up her room for the night just across the corridor. The end of life medication was not needed and two and a half hours later he quietly passed away with us around him and his music playing in the background.

I’m so glad we had a doctor that spoke honestly to us, did not sugar coat anything but was full of compassion. If you can say such a thing, he made the end perfect for my husband and for us as a family.
My heart goes out to you and I agree, though it was hard to hear, the straight-talking was important. I'm glad you were able to give a goodbye like that. I hope my OH can too. Thank you for sharing x
 

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