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)

Please, try to distance your thinking from your mum's conspiracy claims - they aren't helping you. Don't focus on what she thinks might be true, focus on what you know is true.

Your gp can refer for grief counselling.

@Nc4post99

Your dad was seriously ill to he point he needed intensive care and dialysis

I think you need to be asking yourself why you find it easier to believe that medical staff killed him rather than the obvious truth that he died of his life limiting illnesses

This is what happened to my mum. It was a difficult decision

@Nc4post99 ,my sincere condolences for your loss.

As a recently bereaved woman, I can tell you hand on heart, I doubt there is a single bereaved person on the planet that doesn't have thoughts/feelings around guilt relating to the death of their loved one.

The if only's, why didn't I, I should have, could have would have - and we tell ourselves that it would have made a difference and the person would still be here.

The truth is, we don't know that and other interventions may have made matters worse by prolonging the agony but ultimately, not changing the outcome.

Frankly, from your description, it sounds like your lovely Dad was a very sick man and efforts were made to manage his health issues but medical conditions take their toll and there comes a point when doing nothing, other than maintaining comfort, is the right thing to do.

I also feel, from what you've written, that your Mother is being very cruel to you by offloading her opinions on to you when you have a young baby to manage.

I say this kindly, I think bereavement counselling would be more beneficial to you than requesting a copy of the medical notes.

I hope you find some peace in all this and for me, I try to take comfort in the fact that there is no more suffering to be endured by the deceased.....unlike, the bereaved.

Your father sounds like he was very unwell before and during his stay on ITU. You can request a copy of the Inquest notes if there was one but I agree that counselling would be much more help than employing a no win no fee solicitor.

It’s not that, it’s more those thoughts have been festering and as I have nightmares and someone who will scream in my face that it was murder, I’m haunted I’d say

I’m waiting, been told is a 3 yr wait list

Your mum whould get counselling too, screaming that he was murdered is very unkind on you and serves no purpose. You cannot reason with someone who is acting this way, all you can do is look after yourself and your baby.

www.cruse.org.uk - self refer
www.sueryder.org - on line, free counselling.

Hello,

I’m so sorry for your loss.

I work in an intensive care unit, I’ve worked in two in my career and one as a student.

I can assure you healthcare professionals in intensive care do not kill our patients.

In intensive care patients are the sickest in the hospital, sadly this is sometimes to the point that it is incompatible with life. Despite all efforts some patients can not survive.

Was there a withdrawal of care due to futility (either Brain stem death, hypotension so profound inotropic support is unable to manage it, hypoxia despite maximum ventilator support, proning etc to name a few - often a combination of). Sadly some patients relatives - partly because of the artificial measures keeping them ‘alive’ are not able to accept futility and think a withdrawal of care (or patient death on treatment) is intentional killing by doctors and nurses. This feeling was worsened by covid as relatives weren’t able to physically see their relatives as much.

We act in the best interests of the patients, keeping a body alive with extreme measures with no prospect of recovery and likelihood of imminent death is cruel.

I hope your mother is able to work towards feeling better.

xx

These are good people to talk to www.avma.org.uk if lawyer costs are beyond you.

We ultimately decided not to pursue legal action or multiple layers of complaints. The hospital said they’d referred themselves to the Ombudsman and we let it go (turns out they hadn’t!) I know people who have spent years and years going though legal and complaint processes and they don’t feel any happier for it, nor do they generally ever get answers.

We’ve chosen to live with the fact that we will never know why. To seek mental health help for the PTSD. To preserve what is strong and functional in our lives. I have two other little children now and we cannot live in the past.

the truth is for very medically fragile people like your father and my daughter who are on the edge of life, there is no slack in the system and the errors stack up and lead to deaths that perhaps were preventable but perhaps were inevitable if not then, soon. These are not cases that do well in the courts because these are people who you expect to die. Those of us left behind have to work out how to live with the questions and the reality that with such fragile margins, it’s possible at one point or another we could have changed the outcome but we’ll never really know.

For those who think quality of life decisions are somehow evidence based and unbiased, I can only point to the research that suggests strongly that medics underestimate quality of life particularly for the elderly and those with disabilities (particularly learning disabilities) and are quicker to withdraw active treatment from these patients.

I think at this point I need to know facts around his care, because I’m 99% that ITU staff did everything they could and his kidney was shot to shit and then I need to know facts around what happened before, or no amount of counselling can help me

The medication in syringe drivers is automatically administered over 24 hours. The patient doesn't administer it.
There is a post op pump pts can use but this is a different thing.

@Nc4post99

I'd say its the opposite

If you don't get the counselling, no amount of info will help

I know myself though, I need both and like I said I’m on the list. I’ve called the ITU again and they’re getting someone to call me back apparently (they have a clinical psychologist apparently) but I’ve been told this before by them

I have now read that your father was critically unwell to the point of needing CRRT (most often used in ITU- ‘gentle dialysis’ ).

Patients in ITU are often due to their critical illness overloaded with fluid, CRRT is one way in which fluid can be taken off (not the only function of CRRT) However, often patients are so sick that they cannot tolerate fluid removal (can cause profound hypotension, arrhythmias etc - all of which can lead to cardiac arrest).

CRRT is delivered via a renal line (usually) - an invasive line prone to clotting and infection. If CRRT is not working, it is detrimental to keep it going. This is the same for all treatments in intensive care.

All decisions to withdraw care are not taken lightly - even in a very poor icu I worked in. Multiple consultants, registrars, senior nurses and staff involved - cross speciality - often ‘behind the scenes’.

Your mother thinks if he had more time his kidney could have got better. We had a family push this, we agreed to an extension of CRRT and ITU treatment of 24 hours. The patient went into AF > SVT > VT > pulseless VT on treatment 2 hours later and died - this was despite every treatment (inotropes, electrolytes optimised, albumin, anti arrhythmic infusions, DC cardio version, adenosine to same a few) and CPR and full ALS intervention. It saddens me as a planned withdrawal of treatment could’ve been much calmer and dignified for the patient. This is why we withdraw care, to avoiding suffering.

when he was discharged from hospital each time he would have been given a discharge letter, one would have been sent to his g.p. with any advice on what the hospital doctor thought needed to be done like blood tests or blood pressure monitoring, was he admitted to a hospital ward then transferred to ITU, if so the doctors may have explained why he needed intensive care.

@HeyBlaby

whilst you aren’t wrong - they should go to a ward for most EOLC. Many hospitals don’t have ward beds available for weeks - as happens regularly at mine. We have many patients receive EOLC in ITU/HDU - not just the ones for whom it is unplanned.

Apparently there was nothing, which to me rang odd and I’m cross my mother didn’t push anyone for it if this was the case. 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, just to review with his urologist when he can, but the guy was away, so nothing came of it even though there were a dozen consultants/ registrars under him

He would have been given a copy , to follow up with gp.

I imagine he was admitted to ITU because they believed there was something reversible that possibly could be treated despite his multiple comorbidities, so an infection in his stent or something similar. So they provided his body with the intensive support it needed whilst they tried to deal with this reversible condition, to try and give him the absolute best chance of survival.
I am glad that this gave him a few days where he felt well enough to eat and drink and have a joke and see family members. I am sorry that he died before you got chance to see him at the end .
Sometimes people rally before they die, ask any healthcare professional and they will have similar stories, it's almost as though the body chucks everything it has at living for a short while and then accepts defeat. I imagine this scenario happens as often in ITU as anywhere else.
I know you said that he had no cardiac history but COPD has a huge impact on cardiac function, there is no way for one system to be severely impacted without the other one also being impacted, the two being so interlinked.
What I am really sorry about as a nurse, is your lack of answers, because there are people who will be able to give you them and give you the peace you need.

Is that the one in the leg? His dialysis line went into his leg, femoral artery i think. That was it, the balance of the dialysis, blood pressure and breathing.

It’s very difficult for me to say, but when I’d ask uk he was insistent he’d not been given anything and he was asking. My mother also said he was walking out of hospital empty handed, no paper no discharge or anything.

that’s also happened to me once, a discharge plan was put in place and never followed up on, I randomly got a letter years later saying there’d been an investigation into failings and this was one of them… this is just me mind, not my dad

Yes this is it! It’s all coming back to me now, it was an infection in the kidney that started all of this off from the stent being blocked or moving or something.,,; it’s what kept on sending him to hospital for months. He’d be stabilised but no one ever bothered to find the route cause, they’d drain the infection and send him on his way still with creatinine through the roof, this is where I believe balls were dropped also… it’s coming back to me now.