Calling all NHS workers!!

[Nc4post99]

I apologise that this isn’t an aibu.

but I really need some clarity from some ITU workers preferably consultants or anyone who has experience there.

its nearly a year since my dad died in ITU. It was harrowing. A rollercoaster of hope and despair. I’m struggling. This has been made worse by the fact my mother is insistent that they (drs)killed him, and did all in their power to make sure he died. She says they put that line into your arm and after that you’re a goner, apparently they did it to my grandmother too. I’ve told her this is nonsense. But it’s clearly psychologically impacting me as I’m having regular nightmares.

please, is this a thing? Do you have any clue what she’s talking about? I can go into detail with what happened, it’s massively outing but I don’t care, if that helps.

(im On a wait list for grief counselling btw)

Even with a grumbling appendix I had a discharge letter, printed out and emailed to my GP, but he didn’t have a discharge summary or letter on any prior hospital admissions

Do you mean nothing was sent to his GP on discharge from any of his hospital admissions ? because if true that really is odd, it can take a while for it to turn up but for nothing to be sent ever is weird !

OP I have today sat with a family for two hours whilst we tried to answer the questions they had about why their father died.

One member of the family in particular was, in the same way as your mother, convinced my staff had euthanised him.

All I can say to you is the same as I said to her, ITU do everything in their power to keep patients alive, comfortable and to give them back to their families. This is always possible, sometimes they are just too sick. In which case we make them as comfortable as possible.

*isn’t always possible.

sorry, horrible typo failure there

That’s what he’d tell me and might explain why the GP wouldn’t run tests to see his creatinine or take his BP on a regular basis. What kicked start it was a huge headache and him begging to see a dr and he was in hypertensive crisis his BP was so high due to his kidney being blocked and then he was said he needed to go to a and e and he was left for 17 hrs no food no water, no medical attention, not allowing my mum in because of covid, he collapsed in the corridor and that began the first hospitalisation

Its unusual not to be given a discharge summary on any admission, or for a gp not to be ever sent one. I dont think there would have been a dozen senior doctors working under the urologist, the urologist would be the consultant and there may have been one or two Registrars in his team. His kidney function wasnt his only medical problem if he had copd and had previously had a kidney removed for cancer.

That’s what my mum says and she’s made me promise that I’d fight tooth and nail to keep her on all life support and never stop treating her because they just look to euthanise to save budget.

typing that, was really traumatic

This is my grandmother OP - she's in her mid 90s and wants every intervention going. She's convinced that they didn't do everything they could to save my Dad and we should have kept care going longer. For me, having been in ICU as a relative and seen the reality, I've told my husband the opposite - please withdraw support as soon as it looks like chances of recovery are low and quality of life would be poor.

People's reactions to the trauma are so different and the narratives they use to help cope can be completely the opposite about the same patient and the same experience.

His lead consultant, was a v famous guy who worked across several hospitals and definitely had a large department (i can’t remember if he was an oncologist or urologist sorry) withseveral other clinicians under him as he got stuck abroad due to covid. My point was, that this department didn’t exactly fall on its arse because he was unavailable, there were other people my dad could have seen. Ultimately there were hideous delays, as that consultant letter with an appointment came through apologising for the delay and with an appointment for a few days after he died

it wasn’t his only medical problem, but it was his primary one. The others (whilst I wouldn’t wish them on anyone) were a more quality of life thing rather than end of life critical, although at EOL they can’t have helped.

Nephrostomys/stents are tricky things OP , I often have to send people to hospital from the community who have one in that isn't working, as in its completely blocked, is showing signs of infection or has fallen out completely. Essentially they are a foreign body placed to try and aid the function of a bit of the body that isn't functioning properly, but as a foreign body are at the mercy of the same vagaries as the normal biological part plus some extras due to being foreign to the body and providing a rather lovely portal for infection.

If you mum feels very strongly about any future treatment she wants or does not want if she becomes unable to make those decisions she needs to speak with her g.p and not put that responsibility onto your shoulders. The doctors will take decisions based on a patients condition, they will not keep someone artifically alive in ITU if there is no chance of survival and of no benefit to her.

Oh dear.
Your Mother has a lot to answer for here.

Think this is what happened @BirmaBrite !

Everyone medical who’s put forth their expertise, you might not know it but you’ve really helped me understand what most likely went wrong, without the hysteria of my mum crying murder. I’m in finance so medicine Is a world away from mortgages and investments, and I had no idea about a lot of these things until they’ve been mentioned by you all and them suddenly it clicks. What happened, why, why decisions were made and how common it actually is.

thank you! It’s actually sent a wave of calm over me, I was frazzled today thinking about it all, the anniversary is just around the corner and truthfully I’ve been drowning.

That’s effort though and she won’t. It’s easier to put it on me. But when I was there the drs actually said the family don’t get to make judgment calls on treatment plans, it’s actually the drs, so I don’t know what she expects me to do, probably take them to court

Your Dad had a catalogue of health conditions that affected all areas of his body. COPD puts immense strain on the whole cardiovascular system, having one poorly-functioning kidney meant his body couldn’t process its waste products effectively and his BP was sky-high; sometimes when patients are that sick, we cannot treat each isolated condition without exacerbating their other conditions. Sepsis on top of that would have wracked every organ in his body, making his already-compromised organs cease functioning entirely, which is what is meant by multiple organ failure.

That might be manageable in a very limited number of cases where the patient was ordinarily well, but in a man who was already very poorly, it was sadly unsurvivable. I can assure you that he wouldn’t have been transferred to ITU if they didn’t think there was a glimmer of hope. As HCPs, we also don’t just withdraw treatment because it’s ‘too difficult’, we only withdraw it when we are certain the patient is not going to survive as such intensive treatment is so traumatic.

It’s difficult to understand what your mum means as it’s not clear from your posts what was or wasn’t done for your Dad, or what the exact circumstances of his death were. Your Mum sounds like she is very angry and searching for someone to blame, which is quite a normal response to grief. Please seek counselling for yourself and encourage her to do the same as neither of you sound like you are coping well

I’m sorry for your loss.

My dear relative died of copd in ITU, it can be critical and can have a knock on effect on other organs like kidneys and the heart.

OP, it is a known thing that sick people may have a very good day just before the final relapse. It's like a flickering candle that burns strongly just before it goes out.

I am so sorry for your loss and how much this is torturing you. You say your mum likes drama and it sounds to me like she is now revelling in the drama and conspiracy that maybe his care wasn't right. If she thought there was something in it, presumably she would sign a SAR that you could type out for her.
Can you mentally separate yourself from your mum's thoughts? Focus on your own health, sleep, and peace of mind plus your DC.
Then in say 3 months time decide if you still want to pursue getting the records.

When you say your mum didn't call the doctors /999 over the weekend for your dad, I assume he was also able to speak and use the phone himself? Maybe he didn't want her to call anyone and didn't want to call 999 if he could wait till Monday and see GP?

I don’t mean to be insensitive but would investigating this really make any difference? Your father was a terminally ill man with multiple co-morbidities that would eventually kill him sooner rather than later. A hospital would not take up an ICU bed to ultimately kill the patient off in the end, with your father’s prognosis I’m actually surprised they admitted him to ICU in the first place. You say your father had a great day 3 days before his death? I’m a nurse & this is a very common thing to happen amongst people that are dying, we call it rallying round where I work & it’s like they get this small time frame where they seem better & use up all the energy their body has left & they usually pass away within the week. What’s happened to your family is very sad & I can’t imagine it’s easy to lose a parent or spouse but looking for blame on a hospital isn’t going to make this easier for you.

It’s difficult to understand what your mum means as it’s not clear from your posts what was or wasn’t done for your Dad, or what the exact circumstances of his death were.

admitted and they called relatives saying come down not much time. The next 24 hrs are critical. He was on BP medication because it was so low and then he was on the 24 hr dialysis and some nose oxygen And some anti bitotics

they added some anti fungal anti biotics and put another nephrostemy in and then he perked up,

then it was a fine line and then they trialled removing the dialysis to see if he could pass urine and only a tiny amount came out so they put him back on, then tried again and a bit more came and his bp was stable with no meds and his oxygen was good, then they put it in again and it fell out, and then that was the start of the end

I think most people have covered the hows and whys. Albeit generically, but no one here has his notes and your mum obviously prefers her own narrative (whether that be through grief of personal vendetta).

Regarding your mum wanting all treatment. While that shouldn't be a decision for you and like others said she should speak to her GP. Ultimately the decision to medically treat is the decision for the doctor treating. They always take into consideration a patients requests. But it always comes down to that doctor.

I had a patient in multi organ failure, who wanted to be resuscitated and ALL attempts made. They went into cardiac arrest, we started compressions, the doctor looked at the patients history, and yes aware the patient wanted CPR, however the chance of success was next to none. Even if it had worked the patient would have had NO quality of life.

There are lots of charities that offer counselling in a 'pay what you can afford' situation. They look at your salary and make a suggestion etc but it's down to you. May be worth looking in to.

He wasn’t terminal, he didn’t have a terminal diagnosis. I understand he has several grave conditions but he wasn’t terminal you can’t make comments about ‘given his prognosis’ when you Never met him as a patient.

One thing to add OP, I quite often go to patients to change the outer tubing/bag/dressing on their nephrostomy and there clearly is an issue and it isn't new, but they haven't contacted anyone, even though they can ring us 24/7. Quite often they hope the issue will resolve spontaneously, without any intervention. These are people who have usually spent quite a bit of time in hospital and really don't want to go back there, understandably, it doesn't mean they are wrong to hope.

Unfortunately when organs start to fail at that stage, theres so much you can do.

My brother was 38 yrs old, fit and healthy and we stayed positive for 5 months hoping he'd get better. He had days where he'd start improving which would get out hopes up and then he'd deteriorate again. At the end the team did everything they could and once he started getting multiple organ failure, they just didn't haven't anything left to give him.

When we were told he was dying, we of course were completely devastated but he put up such a strong fight and it would have been wrong to keep pushing for more treatment to prolong the suffering. The main thing was that he was comfortable, pain free and had all of us around him when he finally passed.

This will take a long time to sink in and to accept, like others have said the counselling route may be best for all to talk it through with someone not connected with everything going on. I've just started the process as we went through so much the last 6 months, it needs to be let out.

i don’t think he had one at the time of going in on his last admission

I wasn’t there when he passed, my mother had dithered talking to neighbours and on the phone that morning and then the traffic jam meant we got a call to say he was gone stuck in traffic…I don’t know if that’s a good or bad thing. When my grandmother died, I saw her after and for months anytime I’d close my eyes after it would be all I saw, my mum wanted me to stay with her until they took her away (nearly 8 hrs after death) and rigour mortise had truly set in and it was horrible