hi All, our mum has really gone downhill recently after taking antibiotics for a suspected chest infection. We stopped them as she was becoming unresponsive, but are worried now about what happens if/when she does get an infection. We have discussed refusing future a/b’s in the advanced care plan and she agreed but we’re also not sure if she now has the capacity to make that decision so it’s up to myself and my sister (with Power of Attorney) to decide. Has anyone been in this position? Taking antibiotics will deplete her even more but not taking them means the infection will probably take hold. We have the Anticipatory meds at home so she would be made comfortable but we obviously don’t want her to suffer (more). And advice would be welcome.
chest infections: hi All, our mum has really... - PSP Association
chest infections
REOC HiSorry to learn of your mom's condition. I would like to know why did she get a chest infection? Due to choking or swallowing problems or any other reasons ? Antibiotics would have been prescribed only after suspecting the infection based on CT etc? And why aren't the antibiotics proving effective? Did you not complete the antibiotics course? Incomplete course of antibiotics is never effective and leads to antibiotics resistance. Further, there can not be any alternatives to antibiotics when required. Best wishes to you and your mom.
Dear REOC,
I am devastated to hear you are facing this dilemma for your mother.
My husband didn’t have many infections but when he did, he experienced both a wound infection and a chest infection at the same time. He faced sepsis and received IV antibiotics for four weeks. The infections and the immune system response added up to a huge strain on his body. The antibiotics may have been an additional strain but everything is connected and infections are always bad news. All aspects of his condition deteriorated and it became difficult to picture a meaningful recovery.
His Lasting Power of Attorney specified I wouldn’t have to make decisions about accepting or declining life saving treatment. His wishes in the LPOA said he didn’t want treatment if it was just adding time with no further benefit for him. The hospital doctors were quite considered in their guidance and they helped him fight, until the point where they said we had a limited time window to switch focus in order to keep him comfortable. At that point he had started refusing food and drink including medicine, so even if he couldn’t articulate the decision, it seemed that he was opting out of further treatment.
I still find it impossible to get my head around what happened but I am convinced it was right for him, at that time, to leave the hospital environment and have a respectful, peaceful death.
Our instinct is to keep our loved one alive, even when intellectually we recognise it would be cruel to pursue further treatment. I don’t believe there are absolutes or right answers. I can only suggest you are guided by the experts - and by kindness.
I’ll be thinking about you and wishing you the best 🫂💜
Dear Bergenser HiThank you for advising fellows here in trouble due to PSP despite having recently suffered a great loss yourself. I am hopeful that you shall continue that spirit in future unabated. You have mentioned.... infection and a chest infection at the same time. He faced sepsis......Could you please tell us what was that wound and why and how did your husband develop the chest infection, in particular? Was he at home or in hospital setting when these infections occurred? Why was his condition allowed to progress to life threatening Sepsis? Best wishes
Hello REOC,
I don't have an overall answer for you, but one thing we ran into with my husband is that with PSP, he lost the ability to process medications that use the CYP 3A4 pathway (to metabolize the medication in the liver). The most dramatic case was with an antibiotic combination of erythromycin and another one, and the medication reaction didn't hit immediately, but was dramatic when it did hit. He lost the ability to move or stand, and got hallucinations. A lot of medications use this pathway, and you can look up online which pathway each medication uses. Just passing this along in the hopes that it can help your mother. Watching this has made a dramatic difference for us.
Best,
Lost
That's really interesting re the pathways/liver, thank you. I'll do some research into it but feel it's maybe getting to late for it all. Mum has so declined and she's not pulling out of it again, from all indications.
Hello there
My husband had three chest infections in the last couple of months of his life.
They were probably caused by aspirating either food or liquids. He was treated with antibiotics but each time he didn't return to his previous level. After the last one, he stopped eating, I think he had had enough and by then was unable to take any oral medication!
We were supported throughout by our wonderful GP, who was available either on the phone or in person and our marvellous senior district nurses, who had got to know Chris over the course of his illness. We never wanted for anything and when the time came they were there to manage the last ten days of his life. He died peacefully, at home on 27tg December, give years ago.
I think my message is to get the professionals involved, they will steer you through this difficult time and will know when to let nature takes its course.
Take care, keep on keeping on.
Hugs
Anne
Thank you for that. We do have some excellent carers and the gp/palliative team have been great. I think we just hit a bit of a block over Christmas and couldn't speak to people when we really needed to. We are assuming will develop an infection due to aspiration and her lungs are already pretty bubbly. She is no longer speaking so my sister and I will just have to make the eventual decision re her medication. Our feeling is to try first line antibiotics but discontinue if they don't work/help and refuse anything really heavy duty as they just push mum further down the line.
my partner was faced with this decision for his mum many years ago ago when she was near the end of her illness with psp . We decided to ask the doctors to make the decision based in their experience . We thought it best not to upset ourselves with thinking we’d made the wrong decision even though we knew we’d have done everything to have her around longer .
That's good to bear in mind, thank you. We have a good relationship with her gp so we can ask him to be back up if needed.
Could it have been the infection making your mum unresponsive rather than antibiotics? The body has to work hard to fight infection.
If the situation arises again, perhaps consider whether the infection is causing her too much distress and would she be more comfortable taking antibiotics? You could discuss it with her medical team, they will have her best interests at heart. You don’t have to follow their advice. Knowing the pros and cons might help you to make an informed decision.
Whatever you decide, it’ll be with the best intentions. Kind wishes
Thank you. She didn't actually have an infection ... her breathing became quite rapid so a gp came out. She was on two weeks of antibiotics were prescribed (the first two she was allergic to, which was in her notes but not registered by the medics) eventually we called 111 and the doctor who came out called and ambulance to get a chest x-ray, which came out clear. The consultants at the hospital then prescribed some more hardcore antibiotics, as a preventative measure (he was worried about bacteria getting into her lungs from her stomach) plus carbocisteine for loosening mucus. We stopped the antibiotics after a day as mum was almost catatonic and also her body went stiff and the carers could not move her. We carried on the carbocisteine but have also stopped that as it seemed to be making her lungs worse. The phlegm is loose but she doesn't have the strength to cough it up. That's why we are expecting future chest infections, because the phlegm is just sitting in her lungs now.
Oh dear, your Mum sounds very poorly. So distressing for you both to cope with, especially if her breathing is affected. Do you have a palliative care nurse you can turn to for advise/support? If not and you wanted their help, perhaps you could ask the surgery for an urgent referral? They may be able to relieve her distress and make your Mum more comfortable plus give you some support.
Thinking of you
Yes, we had a palliative care nurse out but she wasn't much use to be honest. There's another one who is better so we'll hopefully ask for her in future. Really, there isn't anything much they can do at the moment, except keep mum as comfortable as possible.
I tend to agree with Beachut100, in our experience it was the cold/infection that was affecting him and the antibiotic helped him out of it.
He also had problems with the CYP3A4 pathway not with antibiotics but another medication that tripled the effect of it and he lost ability to move his limbs. It was meant to help relax his tight neck and shoulders!
Making all these decisions on behalf of another person is difficult.
It is always easier to reflect on these things than to make in-the-moment decisions. But my experience with my husband's late stage PSP taught me that the instinct to do whatever it took to stave off infection and prolong life was possibly not the most compassionate thing to do. Bergenser speaks a truth I recognize profoundly, a truth that cannot be rushed or forced on loved ones, but is wise and laden with experience: "Our instinct is to keep our loved one alive, even when intellectually we recognise it would be cruel to pursue further treatment. I don’t believe there are absolutes or right answers. I can only suggest you are guided by the experts - and by kindness."
Good luck to all and be kind to yourselves. This is the hardest job.
At last a Syringe Driver
Chest infections 
Heartbroken
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