Man of Honour
It's got to be because they never take posts down when they are wrong.
NHS=Negligent Health Service
- Thread starter 1664kronenbourg
- Start date
It's got to be because they never take posts down when they are wrong.
Soldato
- Joined
- 23 Oct 2002
- Posts
- 13,597
Leaves them open to legal action 
Soldato
- Joined
- 25 Nov 2005
- Posts
- 12,486
This is one for the Docs of the forum, patient is submitted to A&E day 1 with subarachnoid hemorrhage, is combative but responsive, goes to sleep in the evening, becomes unresponsive the next morning, given that they are over 80 so surgery is not an option is it normal to remove all the monitoring equipment once family have been informed and are on their way and basically leave them waiting to die ???
Caporegime
Yes. Monitoring is normally stopped once palliative. Should still be assessing comfort and treating symptoms.
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Soldato
- Joined
- 25 Nov 2005
- Posts
- 12,486
Make sense I guess if there's nothing they can do beyond that
Caporegime
Yeah the alarms just cause distress and people tend to sit and watch the monitors.
Associate
Firstly mate, if this is a friend/relative of yours, I'm/we're sorry to learn of your sad news. A sudden intracranial haemorrhage at any age is devastating, but at 80 years old, help is often futile.
Dr @Minstadave has already provided the correct answers.
I'd like to add that removal of monitoring equipment will not prevent the inevitable. And in your scenario, the patient is unresponsive. Having hospital equipment attached to the patient whilst they're dying may offer some sort of false hope to relatives. It's much nicer for the family to see their loved one comfortable/undistressed/peaceful when they see them for the final time, rather than umpteen machines beeping/alarming when their loved one takes their final breaths.
Soldato
- Joined
- 25 Nov 2005
- Posts
- 12,486
Thanks, it was probably for the best as they were only going to get worse with their dementia and they were a massive fall risk (already fell 8 times in a year and it was the last fall that caused the hemorrhage) so if it wasn't this time, it would have been another and as far as their passing, they looked peaceful in their coma so probably didn't suffer, far more worse ways to go, it was my first hospital death so I was curious if it was standard procedure to remove all the equipment for end of life care as when we arrived it with it being A&E it did look abit grim how she'd been left
Associate
That's what we hope for. I'm not a Dr, I'm a Paramedic. I experience similar, not only in A&E (ED as we call it), but in the community as well. We give drugs to ease suffering but said drugs are slow acting, but longer lasting, by means of administration method. Whilst not being the end goal, the patients pass away more comfortable slightly sooner than if left unmedicated and suffering.
We always try to present the dead/dying patient appearing as comfortable as possible to their families. Sometimes that's as simple as tucking them up into bed.
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So we've had an interesting ride with healthcare since the end of last year. Apologies in advance, it's a long post... And not a happy ending.
So after all that, all the prodding and poking, pushing and pulling, A&E trips, the long and horrid hospital stay, the few precious weeks we had him home... He passed away last Wednesday at 12:54.
True to the endearing nickname I have for him - Stubborn Old Git - he waited until the only person in the house was the carer, we had popped out the house to go to a cafe round the corner to get some fresh air - the first time there hadn't been one of the family in the house. He'd always said he didn't want family around him to watch him die, and the git managed pull it off.
My son, his grandson, is due to be born in less than a week; and it's absolutely heartbreaking he won't be there to see him. He knew what his name will be - the only person beside me and wife to know - and he kept it a secret the whole time.
That was a long post. Almost venting I guess? But I guess it helps me to get it all out there.
My (step) Dad is a non-emergency ambulance driver mostly dealing with patient transport all around Norfolk. Pulled his back something awful trying to maneuver an oversized wheelchair off the vehicle back in late November/ early December. It was agony and kept him off work for two weeks. Returned to work but wasn't right, not able to lift etc.
A few days later he collapsed at home stepping up the small distance from the back garden over the threshold into the house - something let go in his back and the sheer pain pretty much knocked him out and he collapsed into the house. Ambulance attendance, A&E visit, dosed up on pain relief and sent back home and signed off for a month.
Eventually returns to work towards the end of March as he was really struggling with recovering, but for once in his life took my advice to not actually do any work until they do a proper back to work assessment for him, as sitting down driving an ambulance all day and having to lift bariatric patients is not happening. After spending 4 hours waiting at the office they get the idea he's not going out until something is done and they relent to do something - result is double crewing and he only drives. Not ideal but better than nothing so he carries on.
A few days later he collapsed at home stepping up the small distance from the back garden over the threshold into the house - something let go in his back and the sheer pain pretty much knocked him out and he collapsed into the house. Ambulance attendance, A&E visit, dosed up on pain relief and sent back home and signed off for a month.
Eventually returns to work towards the end of March as he was really struggling with recovering, but for once in his life took my advice to not actually do any work until they do a proper back to work assessment for him, as sitting down driving an ambulance all day and having to lift bariatric patients is not happening. After spending 4 hours waiting at the office they get the idea he's not going out until something is done and they relent to do something - result is double crewing and he only drives. Not ideal but better than nothing so he carries on.
Fast forward to 5th April, he's on a late shift driving back to station and feels very faint; his crew mate who is brand new at the job says he doesn't look well, has concerns about him. They get back to station for a rest, crew mate mentions to other drivers / medic that he isn't right. My dad being who he is tells everyone to bugger off and leave him alone and stop fussing - thinking it's just low blood sugar or something. For a bit of history, he's (at the time) 63, 6'1", ~15-16 stone, smoker since 14 and occasionally gets a bit hypoglycemic which he just manages by eating packs of sweets / high sugar food - it's never been an issue beyond him realizing he's a little light headed etc.
So anyway it's the middle of the night, he pops out to the smoking area and sits down, lights up a cigarette (with several people following him to keep an eye on him) takes a puff, screams out and slumps over starting to have a seizure. For 14 minutes. Thankfully people were there, and thank whatever deity may exist he wasn't driving, as they managed to react quickly, break his fall and get a 999 response sharpish. Ambulance transports to hospital where he has another seizure, this time 3 minutes long, in A&E.
This turned out to be a very long night, I took my mum home from A&E around 2pm the next day as it didn't look like he would be going anywhere soon - we left him essentially comatose (put down to long lasting seizure and the fatigue that brings). No more than 30 minutes later we get a call saying he's being discharged. Get back up there expecting (hoping really) that he's up and about itching to get home. And he's a right state. Curled up in the fetal position (not something I've ever seen him do, even when sleeping), groaning, barely conscious, completely incoherent. And they were discharging into my mum's care to take him home, a woman who herself isn't exactly a picture of health.
So I get them all home and that's where things really start to go downhill.
So anyway it's the middle of the night, he pops out to the smoking area and sits down, lights up a cigarette (with several people following him to keep an eye on him) takes a puff, screams out and slumps over starting to have a seizure. For 14 minutes. Thankfully people were there, and thank whatever deity may exist he wasn't driving, as they managed to react quickly, break his fall and get a 999 response sharpish. Ambulance transports to hospital where he has another seizure, this time 3 minutes long, in A&E.
This turned out to be a very long night, I took my mum home from A&E around 2pm the next day as it didn't look like he would be going anywhere soon - we left him essentially comatose (put down to long lasting seizure and the fatigue that brings). No more than 30 minutes later we get a call saying he's being discharged. Get back up there expecting (hoping really) that he's up and about itching to get home. And he's a right state. Curled up in the fetal position (not something I've ever seen him do, even when sleeping), groaning, barely conscious, completely incoherent. And they were discharging into my mum's care to take him home, a woman who herself isn't exactly a picture of health.
So I get them all home and that's where things really start to go downhill.
So in the couple of weeks after being discharged from A&E things deteriorated. He became constantly loose, violently sick, dehydrated to the point we had two more A&E visits to get an IV into him. GP was somewhat involved but not really - no consensus for cause of seizure, we originally postulated it was a combo of high blood pressure (he's had this for a long while, largely down to weight, smoking and stress since his dad passed away and he family rifts that followed in the two years since) and low blood sugar. Sent off for multiple ECGs as there was reactionary concern over heart though every time this was fine. Sent for an EEG and that came back as normal. Tried to push for an MRI but was struggling to get anywhere. The sickness etc continued, couldn't keep food down so on May 1st I took him back to hospital to get him admitted to a ward after A&E because his weight was starting to drop off and my mum was struggling to deal with everything. Quite a bit of push-back about them wanting him admitted but they eventually relented with enough pressure and support from GP. Their main focus was on a neurological issue presumably down to the previous seizure.
So he was on the Neurology ward, constant observations and no communication with those in charge of his care with not a lot of idea of what's going on. Forced to kick up a bit of a stink over everything and meet the consultant in charge of him. They're unsure what the issue is, naturally, but have done nothing beyond blood tests at this point. Prescribed anti-emetics to control the sickness to get food and water in him with little success. Looking at him in the bed you would be forgiven for thinking he had suffered a major stroke - typical signs of the left side of face sagging, a bit slow to respond, an ever-growing slur to speaking. But everything was coming back with no idea as to cause. And this was just after a week since admission. Then his consultant went on leave for two weeks.
Not to discredit the people in charge of his care, but the fact of the matter was there was no one in charge of his care for those two weeks. He continued deteriorating to the point of being unable to eat or drink (and yet they were trying to still stick tablets down his throat routinely, which were just vomited back up 5 minutes later). My mum and I took shifts trying to feed him as there was just nurses with time available to try and feed him - he was just given the usual tray of food and that was it. He was losing coordination of limbs at this point too.
Again after kicking up a fuss with the charge nurse, he was visited by a nutritionist and a physio team. By this point he couldn't get out of bed and support his own weight, and as a result was having to relieve himself in the bed. Not in a cardboard pot or anything, just the bed... Discussions were had and they decided to get him hooked up to an IV for saline and glucose, and a catheter to help with passing urine. Someone somewhere was obviously concerned about the sickness and lack of ability to eat (finally) and off he went for scans of abdomen and chest. Results of this was there was "something" which they thinking was causing a partial blockage at the bottom of the esophagus in the GI and booked him in for a gastro endoscopy to get eyes down there and biopsy anything untoward. Came back from the theater with the outcome of "there was nothing there beyond a tiny bit of inflammation", so back to square one - laying in bed and wasting away, with no control of sickness and becoming more and more incoherent and uncoordinated as the days passed.
The consultant returned and I had quite a heated unintentional run-in with him - I was trying to get a doctor to sign a new sick note for his work when this chap spun round in his chair and snapped at me for bothering them, "if we had to constantly sign these we'd never get work done", "he's in hospital that should be enough", "who are you anyway?". Well sir, I'm X's son, and I'm just trying to make sure his employment isn't compromised. Instant change in attitude. He was actually reviewing his notes at the time, had a little bit of a chat about the progress so far, findings, where to go next etc. No apology for the attitude but I get it. In his own words, he was shocked to 1) see him still here and 2) how bad he had deteriorated.
So by this time my dad, despite being in the state he was in, was starting to become combative. He's started to get a phobia of being sick so was refusing to eat and drink (not that he was doing anything more than a mouthful of either a day...) and just wanted to go home. He felt like he was dying, he didn't want to be there, and he missed their dogs at home. He'd pulled the catheter out one night. He pulled his cannula out twice. He did have a feed tube put in the same time as the endoscopy and vomited and choked that evening and pulled it out. I think all this combined pushed them to start escalating his case and they started looking for more tests, possible causes etc.
Obviously it's diagnostic medicine, I get that, and had to go through this with my mum several times that there isn't just a catch-all test and a computer pops up with the answer - they have to start going through things one by one to see what sticks. So more tests booked, PET scan etc.
And then we got an answer on Thursday 13th June.
I say we, what I mean is my dad got an answer. Considering at this point he was asleep most of the time, struggled to communicate (despite him being all there mentally - he knew what was going on, and could follow conversations fine, just every response was an effort to give a picture of his state). An oncologist visited him; just him, in an open ward, and said it was cancer. Terminal metastatic small lung cell cancer to be precise, with the lovely side effects of cerebellar ataxia as a result of whatever God awful protein said cancer was pushing into his blood and likely the cause of all the symptoms to date.
But let me repeat. He was told this alone, on a ward, with no support network around. Not even so much as one of the ward nurses as company. How did we find out? A call from the hospital you might think? You'd be half right. He harassed a nurse to help him ring home from his mobile. All he could say? "Cancer, lung, terminal, sorry". That's not a phonecall anyone should receive, not least from the person that has it in the state they're in. Another visit to the ward, get hold of the consultant to go through the notes . All he can say is that surgery and radiotherapy are not an option, and the oncology team are discussing suitability for chemo - I knew this wasn't going to be an option because of the state of him, he had wasted away to a skeleton essentially so no way would he be suitable. The only other distinct thing I remember as here was no timeline given at all. No expectation of how long he's got.
Two days later - Saturday 15th June - we get another call from his mobile - "not treatable, sorry".
Devastated doesn't even come close, but I already knew that would be the answer. So now our focus is on getting him home.
Not to discredit the people in charge of his care, but the fact of the matter was there was no one in charge of his care for those two weeks. He continued deteriorating to the point of being unable to eat or drink (and yet they were trying to still stick tablets down his throat routinely, which were just vomited back up 5 minutes later). My mum and I took shifts trying to feed him as there was just nurses with time available to try and feed him - he was just given the usual tray of food and that was it. He was losing coordination of limbs at this point too.
Again after kicking up a fuss with the charge nurse, he was visited by a nutritionist and a physio team. By this point he couldn't get out of bed and support his own weight, and as a result was having to relieve himself in the bed. Not in a cardboard pot or anything, just the bed... Discussions were had and they decided to get him hooked up to an IV for saline and glucose, and a catheter to help with passing urine. Someone somewhere was obviously concerned about the sickness and lack of ability to eat (finally) and off he went for scans of abdomen and chest. Results of this was there was "something" which they thinking was causing a partial blockage at the bottom of the esophagus in the GI and booked him in for a gastro endoscopy to get eyes down there and biopsy anything untoward. Came back from the theater with the outcome of "there was nothing there beyond a tiny bit of inflammation", so back to square one - laying in bed and wasting away, with no control of sickness and becoming more and more incoherent and uncoordinated as the days passed.
The consultant returned and I had quite a heated unintentional run-in with him - I was trying to get a doctor to sign a new sick note for his work when this chap spun round in his chair and snapped at me for bothering them, "if we had to constantly sign these we'd never get work done", "he's in hospital that should be enough", "who are you anyway?". Well sir, I'm X's son, and I'm just trying to make sure his employment isn't compromised. Instant change in attitude. He was actually reviewing his notes at the time, had a little bit of a chat about the progress so far, findings, where to go next etc. No apology for the attitude but I get it. In his own words, he was shocked to 1) see him still here and 2) how bad he had deteriorated.
So by this time my dad, despite being in the state he was in, was starting to become combative. He's started to get a phobia of being sick so was refusing to eat and drink (not that he was doing anything more than a mouthful of either a day...) and just wanted to go home. He felt like he was dying, he didn't want to be there, and he missed their dogs at home. He'd pulled the catheter out one night. He pulled his cannula out twice. He did have a feed tube put in the same time as the endoscopy and vomited and choked that evening and pulled it out. I think all this combined pushed them to start escalating his case and they started looking for more tests, possible causes etc.
Obviously it's diagnostic medicine, I get that, and had to go through this with my mum several times that there isn't just a catch-all test and a computer pops up with the answer - they have to start going through things one by one to see what sticks. So more tests booked, PET scan etc.
And then we got an answer on Thursday 13th June.
I say we, what I mean is my dad got an answer. Considering at this point he was asleep most of the time, struggled to communicate (despite him being all there mentally - he knew what was going on, and could follow conversations fine, just every response was an effort to give a picture of his state). An oncologist visited him; just him, in an open ward, and said it was cancer. Terminal metastatic small lung cell cancer to be precise, with the lovely side effects of cerebellar ataxia as a result of whatever God awful protein said cancer was pushing into his blood and likely the cause of all the symptoms to date.
But let me repeat. He was told this alone, on a ward, with no support network around. Not even so much as one of the ward nurses as company. How did we find out? A call from the hospital you might think? You'd be half right. He harassed a nurse to help him ring home from his mobile. All he could say? "Cancer, lung, terminal, sorry". That's not a phonecall anyone should receive, not least from the person that has it in the state they're in. Another visit to the ward, get hold of the consultant to go through the notes . All he can say is that surgery and radiotherapy are not an option, and the oncology team are discussing suitability for chemo - I knew this wasn't going to be an option because of the state of him, he had wasted away to a skeleton essentially so no way would he be suitable. The only other distinct thing I remember as here was no timeline given at all. No expectation of how long he's got.
Two days later - Saturday 15th June - we get another call from his mobile - "not treatable, sorry".
Devastated doesn't even come close, but I already knew that would be the answer. So now our focus is on getting him home.
So now it's about getting him comfortable. The next day, Sunday, someone from the palliative care team came to see us on the ward to have a chat. I have nothing but the highest praise for this team. Honest, compassionate, empathetic. We quickly all agreed that he wanted to be home as soon as possible, so things were put into motion quickly. Thankfully, he was discharged from hospital Wednesday 19th June and taken home. I'd spent the Monday and Tuesday moving furniture around their house so we could get a hospital bed in the lounge. A care package was scraped together - we wanted to try and get block care with drop-ins to maintain full 24 hour support as my mum wouldn't cope, but that just wasn't possible; we ended up with a live-in carer, my mum and my dad's sister. The first evening of him being home the district nurse came over and got him hooked up to a syringe driver. Charts were drawn up and it was basically a cocktail of anti-sickness and mild pain relief. The next couple of days was obviously and influx of friends and family coming to see him as news spread of his diagnosis. It was heart-warming to see so many people care - he was a lovely chap, no one could have anything bad to say about him, incredibly selfless and nothing too much bother for him - but honestly it got a bit tiring for all of us, and him.
And then things settled, until they didn't. After a week or so he was getting more and more agitated again, wincing in pain a bit, especially when passing urine. Nurses out, suspected a UTI and antibiotics prescribed. He took them for all of a day and then refused. He definitely spiralled into a rut of depression during hospital, I think getting him home helped him out of it somewhat, but it was definitely coming back. After a day of him clearly being uncomfortable I had to contact the district nurses and insist they take his charts to be reviewed - he's a palliative patient, the deal was he came into our care and would be kept as comfortable and pain free as possible. Few hours of waiting for a doctor and charts drawn up again essentially doubling the dosage of everything, and that had the desired effect - no more uncomfortable agitation or pain.
I can't say it was easy having him back in their house, but it's what he wanted and we took comfort in that.
And then things settled, until they didn't. After a week or so he was getting more and more agitated again, wincing in pain a bit, especially when passing urine. Nurses out, suspected a UTI and antibiotics prescribed. He took them for all of a day and then refused. He definitely spiralled into a rut of depression during hospital, I think getting him home helped him out of it somewhat, but it was definitely coming back. After a day of him clearly being uncomfortable I had to contact the district nurses and insist they take his charts to be reviewed - he's a palliative patient, the deal was he came into our care and would be kept as comfortable and pain free as possible. Few hours of waiting for a doctor and charts drawn up again essentially doubling the dosage of everything, and that had the desired effect - no more uncomfortable agitation or pain.
I can't say it was easy having him back in their house, but it's what he wanted and we took comfort in that.
So after all that, all the prodding and poking, pushing and pulling, A&E trips, the long and horrid hospital stay, the few precious weeks we had him home... He passed away last Wednesday at 12:54.
True to the endearing nickname I have for him - Stubborn Old Git - he waited until the only person in the house was the carer, we had popped out the house to go to a cafe round the corner to get some fresh air - the first time there hadn't been one of the family in the house. He'd always said he didn't want family around him to watch him die, and the git managed pull it off.
My son, his grandson, is due to be born in less than a week; and it's absolutely heartbreaking he won't be there to see him. He knew what his name will be - the only person beside me and wife to know - and he kept it a secret the whole time.
I've had follow up chats with the hospital, and I really hope they actually take the lessons learned from our experience to improve. The (lack of) communication and handling of the diagnosis was abhorrent in my opinion. The loss of focus on care when his consultant was absent was poor. He stubbornness to constantly try and push tablets into him when he physically couldn't ingest them was awful. The indignity of making a mess in his bed and not being cleaned up for multiple hours was horrible.
And yet still, I can't fault the NHS. Had they focussed more and been able to diagnose earlier in his hospital stay, sure he may have been able to go through treatment - but to what end? This was a relatively uncommon cancer and timelines, even with treatment, are rare to be anything substantial. And what quality of life would he have had? He supported my mum through breast cancer many years so he's seen what cancer treatment can do, and I honestly don't think he'd have opted for it. He was a proud man and wanted to die with dignity, so we did the best we could.
And yet still, I can't fault the NHS. Had they focussed more and been able to diagnose earlier in his hospital stay, sure he may have been able to go through treatment - but to what end? This was a relatively uncommon cancer and timelines, even with treatment, are rare to be anything substantial. And what quality of life would he have had? He supported my mum through breast cancer many years so he's seen what cancer treatment can do, and I honestly don't think he'd have opted for it. He was a proud man and wanted to die with dignity, so we did the best we could.
That was a long post. Almost venting I guess? But I guess it helps me to get it all out there.
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Sadly, death is grim, that’s the normality of death. I’ve seen people in their funeral home coffins, and it’s extremely rare they look good. I’d even advise against it so that your final memory of them isn’t that look.
Associate
No need to apologise at all my friend.
I read every word of your post. What a journey from hell you and your family have been through. You have my condolences.
And if 'venting' on here helps you to deal with it all, then vent away!
Soldato
Wow, that was so sad. Please vent away, if it helps, please don't appologise.