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)

@Nc4post99 actually OP, he was terminal. He had terminal conditions, i.e. he was not going to be cured from. He had chronic kidney failure with one kidney left, copd, low BP which is normally a side effect of cardiac issues/failure. He was a terminally ill patient in the sense that he was never going to be cured of his conditions.

OP, you are asking for medical professions advice then are very rude with your responses. We are responding with what little information you have given us in regards to his co-morbidities so we aren’t “assuming” anything, we are using our medical knowledge to put 2 & 2 together.

Hi OP. I'm an NHS worker, have worked on HDU (high dependency unit so a step down from ITU) and have had the experience of my grandfather dying in ITU.

What you're going through with your mother sounds very similar to what I went through with my maternal uncle when we lost my grandad at 73 (his dad). It's long so feel free to skip ...

My grandad was a very unwell man- multiple co-morbidities, obesity, hypertension, osteoarthritis and a leaking aortic valve. He had all of his faculties though. My uncle had never really bothered with him after my nan died. Anyway, my grandad was offered an aortic valve replacement. BIG operation but he was really suffering with shortness of breath and chest pains that were impacting his daily living. He decided to go for the op and myself and my mum (a nurse with years of cardio-thoracic theatres experience) supported his wishes. I have to admit neither of us we're hopeful of the outcome but he'd made the decision to try and improve his quality of life. On the day of the op his platelets were borderline low but the consultant was happy to go ahead. We weren't too impressed but again respected grandads wishes.

It was pretty obvious within about 4-5 hours of the op start time that it wasn't going well. We couldn't get an update so we went to the hospital to wait it out. They finally managed to get him into ITU after 8 hours on the table but then had to rush him back in where he spent another 10 hours. It was an incredibly long and awful night. Eventually they stabilised him and got him back to ITU over 22 hours after his op start time. He'd been on bypass for at least 17 of those hours, had been resuscitated at least 3 times and had received 12 units of blood. He was on dialysis as his kidneys had completely shut down and the catastrophic coagulopathy that had started in theatre was still not fully under control. The cardiac consultant was admittedly useless. Terrible bedside manner, dismissed the low platelets as a mere trifle and told us that the reason it had gone badly was because of the cardiomyopathy (enlarged heart) that my grandad had. If we'd have known- or my grandad had have known about the cardiomyopathy we may well have told him the surgery was even riskier but we didn't. I mention this to show there are parallels in the care received at some points.

Anyway, the ITU staff frankly were the only staff members who were remotely honest with us in terms of prognosis (we knew it was dire) and treatment pathways they could take and affects those could have. We decided as next of kin to withdraw treatment. There was no way that any quality of life should he have survived would have been remotely acceptable. I called my uncle to tell him, offered to pay the £60 taxi fare to get him there, begged him to come. Instead he decided to call me and my mum murderers, contact the solicitors to tell them we were murdering my grandfather for financial gain and has spent the last 12 years poisoning whoever he can that we actively murdered my grandfather by withdrawing treatment when he could have survived....

It leads to madness. The path your mum is taking leads to madness- grief and regret do terrible things to people. Get tough with the hospital. If you don't get that call back from the clinical psychologist then escalate it through PALs. If your mum won't submit the SAR then type it for her and present her with your phone for her to press send if you think that information will help. The likelihood is that ITU did all they could for your dad who from your descriptions sounded gravely ill. Much like in labour with the "rest and be thankful" phase, there's a similar phase with dying. I've seen it with at least 3 close relatives and with patients I've cared for.

I hope you can find some peace and I hope your mum can too. X

I’m not being rude, I’m saying he didn’t have terminal cancer, and he wasn’t terminal when going into to ITU or prior to that admission. that’s not me saying ITU killed him but no one had ever said he was a terminal patient, on end of life care, , he obviously became terminal in ITU. I’m sure you can appreciate its super emotive, there’s no tone in messages so they can be read numerous ways, rude isn’t how I’m meaning it but your initial post even though you said you didn’t mean to be insensitive came across as such, in fact it was a bit dismissive, like what does it matter, he was terminal anyway? Sure that’s not how it was intended but rather how you can’t convey everything by post, esp when you’re not medical and your definition and mine of terminal might not align because I’m a layperson

im not asking for medical advice on his cause of death, although it’s actually helpful, so thank you but the aim of my post was just basically if ITU do bump people off or not bother because they are old

again sorry to come across rude not my intention

@Nc4post99 terminal doesn’t always mean cancer OP. Terminal means that they aren’t going to get better & they will eventually die from their condition. I wasn’t trying to be rude or insensitive, more that I was just meaning that the extra stress of contacting the hospital for medical records, having debrief sessions etc. can’t be good for your own mental health or grieving process. Unless you were hoping for a lawsuit, which sounds unlikely in this case, imo I couldn’t see this stress making you feel any better about your father’s death. I agree with other posters in looking into grief counselling.

No we don’t bump people off because they are old. That is really insulting to those of us who work in intensive care and work incredibly hard to care for our patients, that care includes recognising when someone is dying and caring for them at the end of their life. That will always be one of the greatest privileges of my career.

OP, COPD is a terminal diagnosis in that there is no cure and it gets progressively worse over time until the point of death. I look after people who are described as Palliative and many have been for a couple of years, they can be absolutely fine, just a phone call required to check in and then suddenly their disease progresses and their physical health drops off a cliff and we are talking last weeks/days of life. It isn't an exact science, I suppose it could be more exact but it would entail a lot more medicalisation and intrusion into peoples lives, which those with that sort of prognosis often don't actually want.

to be clear that’s not my opinion it’s what my mother has said to me, from the moment my dad was admitted that they were trying to kill him, so sorry you feel offended by that but unfortunately it’s what she thinks and to make it worse, when he was in and out of consciousness she’d be called her friends saying they were trying to kill him and euthanise him. He was out of it but still with it enough to remember conversations the next day he knew what was happening around him and he must have been so scared hearing that. I mean, I’m a rational person and after a while hearing it has affected me

I know it’s not great and it’s basically your lungs giving out on you, obviously it contributed to his death but the kidney issue was the #1, but as you can see from the thread, there were many

Appreciate that but a lot of blame is being put on my shoulders for not advocating hard enough and not asking the right questions, so I almost need that knowledge, just from the itu to know it’s not my fault. I’m awaiting some counselling too, but I do need facts to stop my mother blaming me and saying it was murder

Is the blame coming from your mum?

Your mum's behaviour is seriously affecting your mental health.

@Nc4post99 honestly, it sounds like your mother needs counselling & therapy. The fact she was phoning friends & saying this when your father was still alive is worrying & very paranoid. I don’t think you should blame yourself at all & you should try to seek help for you mum more than anything.

OP - your issue here is not with the hospital, it is with your mother.

Your mother is blaming you for your father's 'murder' - you must see that that is wrong? This is emotional abuse!

She isn't cooperating with your wish to see your dad's records, because if she does cooperate then it will remove the metaphorical stick she is beating you with.

OP - please seek counselling, and please distance yourself from your mother as far as you are able.

I’m a hospice nurse and this is a common misconception, especially if the dying process isn’t properly explained. It sounds as if the line was a syringe driver. Syringe drivers are set up in these circumstances because someone is at the very end of their lives and it is better to have medication constantly over 24 hrs . Patients have it because they are dying it doesn’t expedite the process. All medication is carefully documented and checked.

I found a lot of the staff sweet so whilst there might have been mistakes in his care prior to admission, he was treated with so much respect. On the first night, his nurse (a bank nurse) held and stroked his hand and face all night, talking to him, tellin him it would be ok. He told me when he woke up. My mum took issue with the fact he was a bank nurse and kicked off and we never saw him again unfortunately but I do think it was due to him that he survived that first 24 hrs. I know my issue isn’t the hospital but I would like a debrief now and I think it will help me put my mums comments to the back of my mind

pretty much!

i know I’ve begged her not to say these things anymore but she won’t stop. At the time the ITU consultants even took her to one side and told her that how she had to be more reasonable with me and they could see she was hurting but she was causing a great deal of distress to a heavily pregnant woman and that could have some pretty negative consequences, she refused to accept that. They offered her a grief counsellor but she refused

You need to go low/no contact with your mum. I know you think that getting some form of answer from the hospital about your dad's care will make her stop, but it won't. She doesn't want answers - she just wants to scapegoat you and this is a convenient tool to use.

She abused your dad (by not seeking medical help when he urgently needed it) and now she's abusing you. Placating her will not stop her.

Why did she take issue with a bank nurse looming after your dad? That's bizarre unless she had concerns about his care, and doesn't sound like there were at that point. .

Your mother sounds like hard work. It doesn't sound like she wants a debrief from the hospital. If you feel that it would be helpful, then I would push for a debrief yourself.

I’m sorry to hear about your dad OP, I hope you get some answers and manage to get counselling soon. The NHS isn’t in the business of euthanising their patients, so please rest assured this wouldn't have been the case but do ask for a de-brief and a copy of his notes.

As a community nurse I deal with syringe drivers on a fairly regular basis, so just wanted to address some points (haven’t read all the comments, so if these have already been addressed apologies). A syringe driver, as has been mentioned, is essentially a syringe filled with medications to assist in controlling pain, secretions, agitation and nausea/sickness. Sometimes a very small dose of steroid can be added if needed for site reactions. It’s essentially a little plastic tube that goes into the subcutaneous tissue (needle is removed after it’s inserted) and delivers the medication over a 24 hour period. Usually it’s the district nurses who replenish this daily.

Some people have mentioned that it delivers doses at a certain time, or is controlled by the patient. This isn’t the case, and maybe these posters are thinking of the medication that you can press a button and it is delivered to you. With syringe drivers the doses for the required medications are added to the syringe and diluted with either water for injection or saline for injection, so the meds are essentially all mixed together. This medication is then delivered over 24 hours continuously until it’s replenished. The syringe driver is kept in a locked box which the DNS have the key for and the key pad lock is kept on. If the patient (and/or the family) find they’re experiencing more pain/agitation/sickness/secretions, then the DNs are on the other end of the phone and can come out to administer stat doses of the medication needed to control the symptoms. The doses given are guided by the prescription. If patients have stat doses then these can be incorporated into the syringe driver at the next replenishment. The aim is to get the patient to a level where their symptoms are controlled, they’re comfortable and they’re not needing stat doses.

I've seen people mentioning that people pass quicker. This is really individual. Yes, once symptoms are controlled the patient can be more relaxed, so maybe in that way it can allow for a patient to pass quicker but this isn’t exactly true. I’ve seen patients be on syringe drivers for weeks, they’re alert and still eating/drinking etc. Just because someone is started on a syringe driver doesn’t mean that they will pass quickly or that they’re at the very end of life. Sometimes the best way to deliver the medication is via the syringe driver and it allows the patient to stay comfortable. Of course we get patients who are at the end of life who can no longer swallow, which is a progression of their illness, and therefore the syringe driver is best to deliver the medications to avoid aspiration. At this stage we would recommend the patient not eat or drink due to this risk, but promote good oral hygiene to keep the mouth hydrated. Syringe drivers aren’t there to “knock the patient out” either. The aim is to keep the patient comfortable at all times and manage their symptoms. It’s more a progression of the illness and a shutting down of the systems that cause the patient to sleep more etc.

Sorry that was long, I just wanted to address the comments around syringe drivers as some people have the assumption that once they or a loved one are started on it that they’re written off/it’s the very end. Yes they’re used for our palliative patients, but dying is a process and it’s an individual one at that. I wouldn’t like to think people are reluctant to the use of the syringe driver/attach negative connotations to it, because it’s something that can really help a patient on their journey, so hopefully people can take this info forward with them.

Because they ‘rape’ the system

@Nc4post99 wtf does that even mean? Rape the system?

I agree with everybody here saying the issue is not the hospital, it is your Dad. I would also question whether you need therapy for managing the grief or whether actually the primary need is in unpicking your mothers behaviour and the feelings of blame and guilt she is putting on you.

is going low contact with her and trying to step away from her to get some space an option?

Awful isn’t it, and not my opinion. i think basically that they go bank to get more money and it’s greedy and cost the nhs too much.

like a few bank staff are why the nhs is on its knees (eye roll)

Your mum is vile. Referring to bank staff as "raping" when they cared for your dad is absolutely disgusting.

That bank nurse works at that hospital and possibly in that itu and would have been paid his normal measly wage for an extra shift. Your dad was not murdered. If there was anything untoward then it would have come up at the inquest if there actually was one. It sounds like he had a chronic lung and kidney disease which could not be cured .

Yes I know, I’m not bemoaning his salary, given his care that night he deserved triple his salary. He was a lovely lovely man