Antibiotics and end of life

[piedwarbler]

Hi
I'd value any experiences or thoughts about antibiotics and end of life care, because Matron mentioned it to me last week. I've been reading a bit on the Internet, and there are some views that antibiotics used aggressively to treat pneumonia can prolong life but also prolong suffering.
I'm not sure how much say I'll have when it comes to it. The GP will probably decide - am I right?
I think Mum would want minimum treatment ( she always avoided doctors and medicine when she could ). My sister seems to want treatment as she feels it could alleviate pain.
And Mum has said no to going to hospital. Again, any views welcome. I wouldn't want to put her through the journey and I've read that treatment in a good NH is as good as hospital in terms of outcomes.
I feel guilty posting this, as though I'm wishing Mum's life away. I just want to be prepared. Don't know if that's realistic of me - maybe the GP will decide anyway - which is fine by me.
Thanks x

 

[Canadian Joanne]

I haven't the experience but my sister and I have discussed this. We want Mum to stay in the NH until the end and to be kept as comfortable as possible. To us, this means painkillers and oxygen but if Mum is at the end of her life, we do not want to do anything to extend it. Plus, I think moving Mum to hospital would be upsetting to her and not medically useful. I want to keep her where the staff all know her and have been taking care of her for years.

My mother was always very vocal about not wanting to be kept alive "on a machine" as she used to put it and we feel her opinion about her current situation would be much the same.

Here in Ontario, the PoA is the final decision-maker, not doctors so at least we will have the choice.

 

[grove]

Hello Pied , What a good question & untill i read what you had put had never thought about it to be honest ! ! The only thing i know about A B 's & Pneumoina is when my Great Aunt had Pneumoina ( She was in a N Home ......Non Dementia ......just very frail etc ) She was not quite at the End of Life & the N Home were very , very GOOD & let her stay there rather than move to Hospital & agree with what you said about that Pied

Sorry Pied not much help ! & think can understand or ( begining to ) see what you mean but not able to help you sorry !

Sending much Peace , Love & Prayer's to you & your Mum

Love & Hugs Love Grove x x

 

[Chemmy]

I go along with Joanne's view. In fact I submitted the following to my mother's CH and GP just last month, to be kept on file:

To whom it may concern

As next of kin to XXXX and after extensive deliberation and consultation with her GP and other members of the family, as well as consideration of her wishes freely expressed before the onset of dementia, I would like to record that I do not wish any medical intervention that would prolong her life beyond it’s natural term, other than to give her pain relief, dignity and comfort as required.

Please do not resuscitate.

I would prefer care to be given at XXXXX if possible rather than in hospital.

Signed

Name
Date

I was quite annoyed when I realised (after that the event) that the pneumonia jab she had when she first went into care lasted ten years. Pneumonia was called the 'old man's friend' and if, by catching it, she had been spared the indignities that she's going through now, I would have been sad, but pleased.

Similarly, when the staff discovered a lump in her armpit there was a sudden talk of 'hospital tests'. I put a quick stop to that after talking to the GP too. The tests would have been traumatic for her and it turns out, they wouldn't have treated her anyway. (The lump was clearly a cyst and went away by itself).

We all have to go sometime and much as I love my Mum dearly, I would be SO happy if she succumbed to natural causes tomorrow. She's at stage 7d (it only goes up to 7f) and her life isn't worth living.

I remember Dad and her asking me 'not to let them get like that' when they saw an old friend in the final stages of Parkinson's. There is nothing I can (or would) do to shorten her life, but by allowing her a quick, natural and peaceful death , I feeling I'm fulfilling those wishes.

 

[florence43]

Dear Pied,

I know exactly where you're coming from, as you know...

I had the exact same questions and worries. When mum's pressure sore became aggressively out of control, the GP asked how we felt about AB use. I'd considered the pros and cons in advance, discussed them with my sister etc. then when it came down to it, we instantly said yes. All our discussions and hypertheticals went out the window. Whether it's true or not, we felt for this type of wound, they would help with the pain. Looking back, it was probably neither here nor there because the pain relief would have taken care of that, but a larger part of me wanted to carry on as I would have for such an injury, had she not been at final stage. It just seemed kinder, I suppose. To mum, and to my conscience.

When it came to her infection, we weren't entirely sure what we were treating, but we agreed to give ABs and see what happened. Sadly nothing happened, because she was so weak, nothing could have saved her. The GP would probably have tried one or two types, had we had the time to do so, but I imagine (and have heard from a friend who went through similar) that a time would have come where she would have made it clear that they were not making a difference and to just let nature take care of mum with pain management and good care.

I am so glad we left mum at the NH, once we knew it was only a matter of time. Hospitals can administer ABs and fluids through a drip, but they wouldn't have sat by her bedside for a full night, they wouldn't have had the time or staffing to do regular checks in the way the NH did. They wouldn't have known her. Or cared as much for her as a person. They wouldn't have known us, or the relationship we had with our mum. The hospital would not have been at the end of the phone, and known to me by name...

It makes such a difference to the family to have that intimacy and care for mum and for themselves.

We had always said we wouldn't want to prolong her life when really it was just putting off death. The natural course was long enough and harrowing enough, but there was a feeling of "well, let's just try one course of ABs...". The GP was sympathetic and worked with us, so all in all, I suppose it's a joint decision, even if one side is emotionally led more than medically...

 

[BeckyJan]

Hi Pied:
This is near the bone for me too. I have made it clear via GPs and the Nurses in the NH that all I want for David is to be painfree and comfortable. I have insisted on a Rightcare Health Plan (a Derbyshire thing) which shows that David is not to go into hospital, DNR etc.

All the people involved agree with me and although I find it exceptionally sad I know it is the right course. At his end of life stage I will be there day and night with the nurses. If he is aware at all he will know he is with folk who love him dearly.

Re antibiotics I am not too sure. There will be a stage when they are no longer effective and at that point I am sure the GP, nurses and I will agree whether we withhold them.

Best wishes

To me the most important thing is comfort and peace at the end in preference to prolonging life with suffering.

 

[piedwarbler]

I knew I'd get good advice, thanks to one and all, especially to Annie for posting so much helpful stuff at such a sad time. I am going to reflect on it all. I did sign a DNR form and I told my sister I had done that. It did cross my mind that no matter what I think now, when Mum actually has that infection and feels poorly, I might change my mind. I am hoping to be guided by the home who I think are good at palliative care xxxx

 

[Soobee]

This is something we are currently discussing as a family. I hadn't thought about witholding antibiotics though. Our family decision is currently "give whatever it is a try, and if it doesn't work, then is the time to let go". So intervene whilst it makes a difference, but do not resucitate. I think that my family would like her to go to hospital if necessary but I can see how much she deteriorates on being moved.

Mum has had another year with us because antibiotics worked on her chest infection. She is currently more aware and "with it" than she has been for three months - I thought those times were gone but she has gradually recovered awareness and has some quality of life despite being immobile and in pain. I do hope that she doesn't suffer for years though, I hope when the time comes it is quick and painless.

 

[bunnies]

I think it's very brave and sensible of you to face this issue. I would just add that it came as rather a shock to me that the real issue with antibiotics was that at a level of illness if the person won't swallow they can only be given intravenously, and I hadn't realised that a nursing home wouldn't do this. So in the end the decision about antibiotics was also a decision about going into hospital. I decided against it, and my aunt died of pneuomonia, and I do now feel it was the right decision given her circumstances, but at the time I found it rather traumatic because I hadn't realised I would have to make that decision. Thanks for raising this.

 

[Margaret W]

If it were my mum (who died 3 years ago) I would agree with you all. I would have wanted her to pass away in the NH that she had just about got used to, with the lovely manager Janice holding her hand, or me of course, and not be subjected to any horrid procedures.

Really, when our loved ones get to the end of their tether, there is no real point in hanging on. Death comes to us all. If it can be quiet and dignified and in good surroundings, that is the best.

Much love

Margaret

 

[muriel.elliott]

Hi,
I dont know if this will help you but a couple of weeks before Bryan passed away his cellulitus flared up big time also he developed a chest infection and his G.P put him on 3 lots of anti-biotics to try to sap it. It really upset his tummy and he just could not fight it. Whether it had anything to do with passing i will never know but as the G.P said the only other alternative was being admittedto hospital and we had already agreed that was not an option. As with re-succitation there was no point.
I do feel for you.
Love and hugs Muriel xx

 

[CYN]

My husband was in a nursing home and had reached the stage where there was no quality of life, being fed, looking at the ceiling, being turned and changed, , suffering with a bad sore on his buttock. I had already agreed to a d,n,r on his notes so when he developed pneumonia i requested he remain in the home and no intervention, which meant no A B , I think he would have wanted this ending as he had often said about suffering " We would not let an animal suffer like that."and so he passed away with his family around him ,and i was relieved . hope this helps with some sad decisions.

Cynthia

 

[larivy]

Hi pied we got a preferred choice of care that the gp signed on mums behalf after talking to her because we want mum to stay at home this has now been recorded with the ambulance service and out of hours gps so that if we call them they will only make mum comfortable and not take her to hospital she has a chest infection now and I have got ab for her but that is because she can choke so easy because of MND and it is frightening for her and to be honest me so they make her more comfortable it is hard though part of me does not want her to go but then I don't want her to suffer and I know she don't want to live like this I am lucky that my two brothers agree and we have made the decision as a family to keep her at home and the DNR has been put in place
I think what ever decision we make we will question it at some point I went through this with my dad and I still say if only I
Thinking of you love larivy

 

[Mo_N]

Thank you for raising this Pied

The same questions have been revolving round my head for a while now & your thread has enabled me to sort out my own thoughts.

The decisions we are forced into making for our loved are never easy are they

Love
Mo
x

 

[nicoise]

Dear Pied,

Your many answers here probably have answered your question already.

This was the situation we faced with my mum's end of life care. The downward spiral came when she was pretty good with her faculties, but hospital acquired pneumonia started her final decline.

She was treated with antibiotics twice in hospital, but as with all infections the damage in her brain and thus exacerbating her dementia was very marked. I was also warned that further antibiotic treatment would make her very vulnerable to C Diff because of the effects on gut flora. So she was likely to be much worse off than before.

When faced with difficult decisions or situations I ask myself a few questions like: "What am I trying to achieve here?" and "Who am I doing this for?" amongst others, and that helps to clarify what areas I am struggling with.

But the responsibility of making these decisions on behalf of someone vulnerable is enormous. I would much rather not have been the one to do that, but it actually became just about the last thing I could do to support my mum - and I knew from chats in better times that there was no way she wanted to live as she had become.

Best wishes xxx

 

[sistermillicent]

Hallo Pied, this is a hard thing to think about and I see others have said it all pretty much. I know that I would say now, in the cold light of day that I would not want my mum to be treated but my dad would say different and I would have to go along with him because I just would.

However, I also know even better than that, that I would go with whatever my gut feeling and heart said when the time came, logic and sense probably wouldn't play any part.

hugs
Pippa x

 

[WittsEnd]

Pneumonia Jab

Chemmy

The probability that the jab won't work anyway is high, and as far as lasting for ten years, well possibly not.

http://www.dailymail.co.uk/health/article-1392594/Pneumonia-jabs-pensioners-scrapped-dont-work.html