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End of life medication

Violet Jane

Registered User
Aug 23, 2021
239
0
In my area there is currently an initiative to improve end of life care. I am part of a patient group at my surgery and I would like to contribute to the discussion. The aspect of EOL care that particularly interests me is that provided to people with dementia in care homes. I suspect that the care that they get might not be as good as that provided in other settings for a number of reasons:
1. the PWD cannot advocate for him/herself
2. the PWD's relatives may live some distance away
3. neither the PWD nor his/her relatives have much of a relationship (or any) with the treating GP if, as is common, the PWD changed GP when s/he moved into the care home

When my mother was dying no doctor contacted me. I was informed that EOL medication had been prescribed, but it was never actually given. One carer told me that EOL medication had almost never been given at the home. No-one ever explained why it was not felt to be appropriate to give it, and I found the, for want of a better expression, dying process over six days very distressing. I was actually about to threaten the surgery with a complaint when my mother finally died.

I have wondered whether people living in homes with nurses onsite receive more EOL medication. My friend's mother died from vascular dementia and she was given two medications when she was dying; her home had onsite nurses.

I'd be interested to hear people's views on the above. I have read some of the threads in the EOL section of the forum and have never heard of the medications mentioned, or a syringe driver being used for someone who was not dying from cancer.
 

canary

Registered User
Feb 25, 2014
15,702
0
South coast
I can only tell you about my own experience.
I found the dying process harrowing to watch, but I have no complaints about her care.
Mum lived in a dedicated dementia/EMI care home without on-site nurses, but they obviously had experience of this stage. Yes, mum had to change her GP when she moved there, but I had spoken to him on a couple of occasions and found him compassionate and wanting to do his best for his patients. He ordered the medication for EOL (the so called just in case box) which was kept at the care home and organized for the district nurses to attend. Initially the medication was given by injection but when this was not sufficient (the district nurses were on call and came through the night) they sorted out a syringe driver for her, increasing the flow when required. During this time the carers washed and turned mum every two hours to keep her comfortable.

Perhaps I was lucky, but I felt glad that mum had passed away in surroundings that she knew, tended by people who really cared for her.
 

Violet Jane

Registered User
Aug 23, 2021
239
0
Thank you, canary. I do wonder whether I was just not prepared for the grisly reality of the dying process.

May I ask what medication your mother was given and what it was for? Do you think that EOL medication is routinely given? I was told by the home that my mother was not showing symptoms of distress and the impression I got was that EOL medication is only given in extremis. I did wonder whether there was an issue of getting district nurses out.
 

canary

Registered User
Feb 25, 2014
15,702
0
South coast
Mum was given morphine injections and then when the syringe driver was used she had something to dry up the secretions added, which made her breathing easier. She was given these medications once she started showing symptoms of distress - they are not usually given until required. Fortunately the carers were on the ball and contacted the DNs promptly, so she was not in distress for long. This was precovid, though, and there may have been problems with DN cover more recently.

You are right, the reality of someone dying from dementia is pretty grizzly. When you see someone dying on TV it is all over within a few minutes, but the reality is not like that. I found all the physical changes harrowing and did not expect it to go on for days (17 in mums case). I now know that the gauntness, the skin motteling, the cold limbs,the gaps in the breathing and even the way mum couldnt bear anything touching her was normal, although it seemed awful at the time.

(((((((((((((((((((((((hugs))))))))))))))))))))
 

canary

Registered User
Feb 25, 2014
15,702
0
South coast
Please dont apologise, talking about it now doesn't upset me any more.
If anything I can say will help you,then I am happy to talk about it
xxx
 

lemonbalm

Registered User
May 21, 2018
1,731
0
Hello @Violet Jane

My mum died in a care home with no nursing on site. The care home were given a stock of end of life medications. During the last few weeks of mum’s life, a nurse was called out three times overnight to give her an injection of morphine when she was showing signs of distress. The rest of the time, carers gave Oramorph in the morning and early evening, which they syringed into her mouth once she could no longer swallow. I would have preferred mum to be asleep when she was close to death but the doctor had advised removing mum’s pain patch because she was so tiny by then, it was deemed “too much”.. It seems the medics and staff feel it is preferable for the person to be able to interact with carers and family. I’m not totally convinced, to be honest.
 

Violet Jane

Registered User
Aug 23, 2021
239
0
Thank you, lemon balm. I agree with your last two sentences. I’m afraid that I don’t understand the medics’ and staff’s point of view. My mother was unresponsive the last few days of her life. I rather suspect that since the Harold Shipman scandal doctors are worried about being accused of hastening death / euthanasia and, as a result, are over sparing with EOL medication with the result that people may take longer to die and show distressing symptoms which are unnecessarily upsetting to their relatives.
 

Wildflowerlady

Registered User
Sep 30, 2019
528
0
Hello @Violet Jane I am happy to tell you of my experience with the loss of my parents. My mum died in the summer of 2016 in her own home it all happened in a short space of time a week from my calling well insisting that her surgery send a GP out. Mum had district nurses coming in to administer drugs to relieve her of any pain day or night in fact I had called them at around 2.30am and they were there within 30 mins. A hospital style bed had been delivered within a couple of days and the local hospice sent their nurses out to attend to mum the whole service was fantastic and my mums wish to die in her own home was achieved she died of liver cancer but had also a few complications from long term diabetes. I stayed on her sofa overnight as the bed was installed in the lounge but they did send in a sitter for three nights so I could go home late evening until morning. Mum was put on a driver for last 3 days from memory and she didn't wake up for last 36 hours. It was a peaceful end incredibly mum was still eating a bit that last week. My dad passed in January this year it is a bit fuzzy and I feel some guilt as I do not know what drugs he may or may not have been given other than I think it was mentioned he had something for secretions. I know when the hospital sent dad back to the Care Home they both said that an arrangement had been made for drugs should they be needed. Dad went onto the nursing floor separated from the other residents and they did have a GP in attendance when needed he had been into the home to see dad the day before dad passed. I had spoken to the Manager and she said that drugs were not always needed but the only thing I can be sure of is dad did not have a syringe driver. From my daily visits dad did look clean and very peaceful in fact very cozy. The staff were nice and they were turning dad regularly I know this as I did see them do this. In fact after dad passed the nurse still changed dads position and spoke as if he was still alive, he was treated kindly even after he passed when I saw him very briefly. I wish I had asked more about what he may have been given but with covid in the home the contact with staff was very minimal. The whole process of seeing him was awful really as @canary says and his gauntness and watching his breathing was all I could think about he was so very thin. The process of dad dying took around a month from 16 days in the hospital where they deemed him EOL to just under a fortnight in the CH or thereabouts. The other thing I remember was dad was unshaven but I can understand that and he looked a bit strange but as I say he did look as peaceful as I could really have hoped for him to be whether any drugs were used or not. I think dad only mumbled once to me when back at the CH and the staff didn't get much out of him either.
 

canary

Registered User
Feb 25, 2014
15,702
0
South coast
I rather suspect that since the Harold Shipman scandal doctors are worried about being accused of hastening death / euthanasia and, as a result, are over sparing with EOL medication with the result that people may take longer to die and show distressing symptoms which are unnecessarily upsetting to their relatives.
This is a thorny issue and there are people on both sides who hold passionate views.
I suspect that a lot of the problem is that we as a society have little experience of people dying. Most of mums symptoms did not distress her, although I found them difficult to witness, because I was not expecting them. How much should mum have been medicated to save my feelings?

I was grateful for the staff there who could reassure me, but if if there is no one, or that trust is not there it must be awful.
 

Wildflowerlady

Registered User
Sep 30, 2019
528
0
Hello @Violet Jane

My mum died in a care home with no nursing on site. The care home were given a stock of end of life medications. During the last few weeks of mum’s life, a nurse was called out three times overnight to give her an injection of morphine when she was showing signs of distress. The rest of the time, carers gave Oramorph in the morning and early evening, which they syringed into her mouth once she could no longer swallow. I would have preferred mum to be asleep when she was close to death but the doctor had advised removing mum’s pain patch because she was so tiny by then, it was deemed “too much”.. It seems the medics and staff feel it is preferable for the person to be able to interact with carers and family. I’m not totally convinced, to be honest.
Hello @lemonbalm my mum was also prescribed Oramorph and a pain patch but they had to be removed quickly as mum started being sick and the doctor said were probably too stong or didn't suit her. Poor mum was dying and then throwing up as well because of the drugs she also got very delirious for a few hours . No one at that time was sent in to administer either of those and doctor spoke to me on the phone telling me how to put the patch on so I had to put the patch on her tummy and give mum the Oramorph when she was in pain. My dad couldn't give it to her as wasn't sure how to and really could have made a mistake so I said I would. Dad called me out at 3.30am saying she had gone mad she was actually dellirious and kept saying she wanted to go home she was like it for hours. I called the doctor I was really careful with the dose and she only actually had two doses so doctor said to remove the patch and not give her any more of the oramorph as they clearly didn't suit her. I confess I checked the bottle incase my dad had given her some but he hadn't. The diamorphine I had to collect daily for the district nurse to administer from wherever had some in and then eventually they put the driver on. I knew at that point mum didn't have long left and the district nurse said mum would start to sleep more and eventually drift away. On the day mum passed late morning the nurses from the hospice had literally just asked about putting a catheter in as mum was getting very sore but before they got chance mum passed they said she didn't want that did she. Mum wasn't actually awake but I suppose we can think she had actually had enough. Mum had said to me one day that last week why can't they just knock me out, she said I want to go then well I don't want to but I know its my time she was tired of being unwell and the pain she had been hiding she could no longer hide it had become unbearable for her. I told mum I wanted her to stay but that was really selfish of me so it was ok for her to go now and not be in pain any longer and that I loved her. Makes me cry every time I think of it but glad I told her was ok for her to go.
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
In my area there is currently an initiative to improve end of life care. I am part of a patient group at my surgery and I would like to contribute to the discussion. The aspect of EOL care that particularly interests me is that provided to people with dementia in care homes. I suspect that the care that they get might not be as good as that provided in other settings for a number of reasons:
1. the PWD cannot advocate for him/herself
2. the PWD's relatives may live some distance away
3. neither the PWD nor his/her relatives have much of a relationship (or any) with the treating GP if, as is common, the PWD changed GP when s/he moved into the care home

When my mother was dying no doctor contacted me. I was informed that EOL medication had been prescribed, but it was never actually given. One carer told me that EOL medication had almost never been given at the home. No-one ever explained why it was not felt to be appropriate to give it, and I found the, for want of a better expression, dying process over six days very distressing. I was actually about to threaten the surgery with a complaint when my mother finally died.

I have wondered whether people living in homes with nurses onsite receive more EOL medication. My friend's mother died from vascular dementia and she was given two medications when she was dying; her home had onsite nurses.

I'd be interested to hear people's views on the above. I have read some of the threads in the EOL section of the forum and have never heard of the medications mentioned, or a syringe driver being used for someone who was not dying from cancer.
Hi @Violet Jane

You raise an inetresting and contentious topic as @canary has said.

I have different experiences of EOL with my dad and my sister versus what I do in my work and I have to say there is a huge disparity in practices.
My dads EOL was well planned and delivered, however my sisters was more of a battle with a palliative care nurse who didn't seem confident in the decision to start EOL meds even though the evidence of imminent death was overwhelming -it became a fight to get my sister out of the hospital and to the hospice, a day later she passed.

The one thing we can do is ensure that a person does not suffer at the end of their life, and this philosophy is now widely adopted but still badly practiced in some areas. The Harold Shipman case resulted in tighter regulation of controlled meds making it less likely they could be abused, but this should not prevent someone from receiving the medication needed at EOL. Where the use of meds is justified there is no actual upper limit set, what is important is that doses are titrated up to achieve the right level, no more no less. EOL meds don't always require an opiate, sometimes a sedative and anti-sickness is enough for distress but not pain.

Last year my mum took a turn for the worse and we all thought she was on her last legs. I had a conversation with the GP at the care home and it was agreed that mum should have EOL meds if she declared herself as being EOL. EOL meds were prescribed and made available if needed, but mum rallied and has been up and down ever since. It can be difficult to tell sometimes at what stage someone is at, but that shouldn't stop getting things reviewed by a doctor or palliative nurse and coming to a decision. The other thing I have experienced is that often staff are frightened of EOL meds and feel uneasy about their use, especially when they are not sure or have doubt about what they are observing -I think that at that point its always best to get a medical professional to attend and re-assess and come up with a plan rather than just sit on their hands.

I would certainly complain to the GP about your mums final days -if anything to change practice

If in doubt ask and get help
 

Violet Jane

Registered User
Aug 23, 2021
239
0
Thank you, Wildflowerlady, for your detailed response.

Canary, I completely agree with you that, as a society, we are not used to seeing the reality of death. In an era of smaller and more geographically scattered families many of us only hear that a relative has died rather than see the person when s/he is dying. My mother was the first dying person I spent any time with. My father had died suddenly, in hospital, and although my uncle died over the course of a few days I was only able to visit him for a short time to say goodbye as I lived a couple of hours away, had very young children and was still grieving for my father who had only died four months earlier (I was not close to my uncle either). You make a very fair point about the distress to the relatives.
 

lemonbalm

Registered User
May 21, 2018
1,731
0
Hello @lemonbalm my mum was also prescribed Oramorph and a pain patch but they had to be removed quickly as mum started being sick and the doctor said were probably too stong or didn't suit her. Poor mum was dying and then throwing up as well because of the drugs she also got very delirious for a few hours . No one at that time was sent in to administer either of those and doctor spoke to me on the phone telling me how to put the patch on so I had to put the patch on her tummy and give mum the Oramorph when she was in pain. My dad couldn't give it to her as wasn't sure how to and really could have made a mistake so I said I would. Dad called me out at 3.30am saying she had gone mad she was actually dellirious and kept saying she wanted to go home she was like it for hours. I called the doctor I was really careful with the dose and she only actually had two doses so doctor said to remove the patch and not give her any more of the oramorph as they clearly didn't suit her. I confess I checked the bottle incase my dad had given her some but he hadn't. The diamorphine I had to collect daily for the district nurse to administer from wherever had some in and then eventually they put the driver on. I knew at that point mum didn't have long left and the district nurse said mum would start to sleep more and eventually drift away. On the day mum passed late morning the nurses from the hospice had literally just asked about putting a catheter in as mum was getting very sore but before they got chance mum passed they said she didn't want that did she. Mum wasn't actually awake but I suppose we can think she had actually had enough. Mum had said to me one day that last week why can't they just knock me out, she said I want to go then well I don't want to but I know its my time she was tired of being unwell and the pain she had been hiding she could no longer hide it had become unbearable for her. I told mum I wanted her to stay but that was really selfish of me so it was ok for her to go now and not be in pain any longer and that I loved her. Makes me cry every time I think of it but glad I told her was ok for her to go.

Goodness, of course it makes you cry. It’s such a very hard thing to go through. I also told my mum it was ok to go, I sang to her, said that Dad would be waiting for her, her mum and dad too, that everything would be alright and so on. All things I hadn’t really planned to say but felt right at the time.

In the end I decided she was waiting for me to leave, so drew the curtains, saw that she had her evening Oramorph and said you go to sleep now mum, ‘bye for now. She died soon afterwards.

We did our best.