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So, shitty situation.
I went back home to visit my Mum and Dad on the 22nd. Found my Dad in bed where had been for four days with 'Flu'.
I took him to the doctor who then sent him straight to the hospital where he's been ever since. Turns out he had bacterial pneumonia. He spent the first week on a general ward and then the second week was spent in an increased observation ward (I think that's what it's called). His lungs have also become inflamed while in hospital.
Got a call from my Mum this morning. The Doctor basically said that the current regime of antibiotics for the infection and steroids for the inflammation has been taken as far as it can be taken. If this doesn't work he will die.
The doctor also said they didn't want to put him in intensive care because if he was put on a ventilator he might never come off it.
My problem is that I travelled back home on the 29th and came down with Covid (so 2021, I know) on the trip home. I'm currently testing every day and as soon as I test negative I'm jumping on a plane.
My information is coming from my Mum and a conversation with a ward nurse who gave my Dad a 50/50 chance (my Mum hasn't spoken to a doctor since the conversation when she was told this is it for treatment).
I have some questions.
- My Dad seems to be unaware of his prognosis and intensive care hasn't been presented as an option. Is it normal to keep this kind of information from a patient?
- I understand that hospitals are absolutely slammed at the moment, particularly with respiratory illnesses. Is it possible that going into intensive care might be the best option for my Dad but the hospital are trying their best to avoid sending him there because it would mean an occupied bed, possibly for a long time?
I pity anyone who has to do the maths on this and I understand that my 71 year old dad with a history of asthma and other health problems might not seem like the best candidate for an IC spot. However, if I don't investigate whether IC might actually be the best for him rather than everyone else then I'll wonder about this for the rest of my life.
Like I said, it doesn't look like I'm going to be able to travel until Monday at the absolute earliest. Not being able to talk to the doctors directly (which doesn't even seem to be possible if your are actually in the hospital) means that I'm very much in the dark on this. My Mum is smart but at the same time I'm not sure how objectively she's able to look at all this.
Thanks in advance for any answers and advice.
Should probably add, my Dad is conscious and alert and very much capable of understanding his situation. He would be able to walk about a bit if he wasn't hooked up to all sorts of equipment. It's just his levels that don't seem to be improving.
This is why it seems so strange that we are being told this is it and his odds are 50/50.
My sister was in IC for flu for 8 weeks. Its incredibly traumatic and invasive. Obviously I am not a doctor so I dont know the medical details but I could see why they want to keep people out of there if they do not need to be there!
My Dad seems to be unaware of his prognosis and intensive care hasn’t been presented as an option. Is it normal to keep this kind of information from a patient?
No. I take it this hospital is in the UK? Unless he is at a point he cannot take in the info then its totally wrong to withhold this info. Against ethical guidelines and against best practice.
Is it possible that going into intensive care might be the best option for my Dad but the hospital are trying their best to avoid sending him there because it would mean an occupied bed, possibly for a long time?
Possible but unlikely. This brings back to me a traumatic case that led to me leaving acute medicine. A chap of similar age and illhealth to your dad who was ventilated in ICU. Because of his lung condition he was extremely difficult to wean off the ventilator it took 4 months. As soon as we got him off the vent he was rushed out of ITU died 3 days later.
Best for him is a really difficult equation to measure. Best to allow him to die in peace or best for him to spend months in ITU being poked and prodded suffering intrusive medical proceedures that will not alter the outcome? Or best for him in that ventilation may allow recovery? I cannot say. ITU is not a magic wand that cures folk
Its really really hard to know for sure in these sorts of situations with the info you can give me but I see it as highly unlikely they are saving a bed in ITU for someone else and not putting him in an ITU for those reasons.
Really difficult situation. Good luck
No. I take it this hospital is in the UK? Unless he is at a point he cannot take in the info then its totally wrong to withhold this info. Against ethical guidelines and against best practice.
Thanks for that, TJ. Yes, he's in the Southern General (or whatever it's called now). I'll speak to my Mum about this.
This is why it seems so strange that we are being told this is it and his odds are 50/50.
I wonder if its an "underpromise over deliver" situation? IME not uncommon to give the family worst case scenario and hope for good news rather than making light of it and then having to give bad news
Also without intending offense your mother may well be struggling to take in the info given her emotions will be a whirl and thus info you get from your mother may not be entirely accurate
You should be able to get a chat with a doctor yourself. Phone the ward ( get the direct number from switchboard so you don't have to keep on going thru switchboard) and ask if the doctor can phone you or speak to you to get direct info.
I wonder if its an “underpromise over deliver” situation? IME not uncommon to give the family worst case scenario and hope for good news rather than making light of it and then having to give bad news
Also without intending offense your mother may well be struggling to take in the info given her emotions will be a whirl and thus info you get from your mother may not be entirely accurate
Yeah, I'm thinking all that as well.
The worst thing is that I was considering just sending the family home and staying in Glasgow. My Mum said no. As a 41 year old man you'd think I'd have learned to tell my mum to piss of by now but apparently not.
Mate I'm 20 years older than you and still can't 🙂
You should be able to get a chat with a doctor yourself. Phone the ward ( get the direct number from switchboard so you don’t have to keep on going thru switchboard) and ask if the doctor can phone you or speak to you to get direct info.
Aye, I've got the number so I can call anytime.
Like I said though, it seems it's really difficult to actually nail down a doctor. My dad has been seen by loads of different ones and last time I spoke to him he didn't even know whose care he was actually under.
I'll call tomorrow and try to get a name.
Like I said, it looks like they are slammed at the moment.
Obviously it must be double difficult for you as you aren't in the country, can't travel due to Covid, can't talk directly to the doctors, and you are relying on your mother for her interpretation of what the doctors have told her.
But are you sure that due to very understandable worry and negative feelings that your mum isn't focusing on the worse case scenario that has been suggested?
It's only 14 days since the 22sd of December, is that really long enough to have a realistic idea of the response from a couple of different antibiotics? I obviously have no idea but I hope that you get the opportunity to be there as soon as possible, being far away in a situation like that is very frustrating. Good luck.
Sounds horrible and I really feel for you, my mum was in a similar position a year or so back albeit with a different infection (perforated bowel, not pneumonia), on an IV AB drip and being told the next 12 hours would either get on top of it or not. Have they tried 'all' the different types of AB that are useful in this sort of infection?
IANAD but reading what you posted and from my very limited understanding / experience with Mum, it sounds like if they can't control and kill the bacterial infection either by the drugs or innate immunity then it will continue to spread. The steroids are to treat the inflammation caused by the infection but unless that is cleared it'll be constantly fighting a fire that'll never go out. Maybe then IC might enable him to be artificially sustained but unless there's a clear path and likelihood to eventually fight off the infection, is that the best course or delaying the inevitable.
Seems really off if he's not being involved in that decision process; Mum was absolutely - happy to continue the IV through the drip to see if the bowel would self heal, but unwilling to have a colostomy and would then have refused further treatment beyond palliative care (thanks TJ for advice at the time)
But are you sure that due to very understandable worry and negative feelings that your mum isn’t focusing on the worse case scenario that has been suggested?
If anything I think my mum is being too optimistic. She was very positive this afternoon since she reckoned my dad looked better but I spoke to a nurse on the ward who said she hadn't seen any improvement. The same nurse was the one who told me my dad's chances were 50/50.
But yeah, I'm working with partial information, at best.
Very sorry to hear this, it's an awful situation, and fingers crossed the antibiotics and steroids will kick in soon.
There's nothing wrong with asking for a quick phone call with a team member to get a rundown of their thoughts on his condition and asking them directly as part of this if venting is an option if his condition declines further. There may be some other factor physically which makes them think that his outcome would be likely to be poor if he got to the stage where venting was required. I think the last couple of years has taught them a great deal about the price to be paid in terms of recovery time and ongoing quality of life from putting him on a ventilator, measured against the chances of it making a difference. The sedation levels required also would immediately put him beyond communication, which can add to the trauma for close relatives.
It is always possible that this is subconsciously weighed against them expecting demand from much younger patients who may be likely to have more positive outcomes, but I am sure that the overriding concern is his best interests.
As I say though, once they recognise that you are down to have a thorough but polite conversation, you may get a bit more insight based on what will be extensive experience of their patients over the past couple of years.
Good luck and best wishes.